The only impossible journey is the one you never begin….( we are on our way)

Man on top as silhouette in mountain

A new year has begun and we are two months into it already! I know I have been missing in action lately and I am really sorry. Having said that, I am happy to say that there are lots of developments at my end. A few of these are to do with my daughter’s treatment and a few others are associated with related topics. So you see, I have a lot to share with you.

First I would like to mention a few things which are uppermost in my mind. I would like to begin my first post this year by expressing my gratitude for all that I have and enjoy. I am really grateful for all the precious and memorable moments spent together as a family. I am also thankful for the constant and untiring support provided by my daughter’s doctors and by our extended family. As a family dealing with a child with a chronic condition, we know only too well how difficult it becomes from time to time, how very exhausting. It is only with all the support that we get that we have managed to come this far.

While it is very difficult to witness the pain and suffering that my daughter has to endure on and off due to her severe eczema, we make sure that as a family we do not forget to have fun, to do the small and big things which we enjoy. Those of you who have been with us from the beginning will know that we have come a long way in the past few years.

Confirmation of a “leaky gut”

leaky_cycle-716x675

(Source: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/)

In my earlier posts I have shared with you that my daughter is currently on a treatment based on Functional Medicine principles. I have written in details about Functional Medicine in my earlier post (https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/) and you can find out more about it for yourself using the links given in the post. My daughter has been on this treatment for a bit more than 3 months now and we have just done some tests for her to see if there are any improvements. But before I get to that in my next post, a bit more about these tests which confirmed that she had a gut health issue and determined her course of treatment.

The whole approach of this treatment is to heal the gut (or small intestine), wherein lies the cause of many autoimmune disorders and chronic conditions including eczema. These very specific and specialised tests which were done in London last year confirmed what I had been reading about and what I had suspected over the past year or so. Having a “leaky gut” meant that undigested food proteins and bacteria were passing on to the blood stream from inside the intestine and causing her immune system to overreact. This had caused systemic inflammation inside her body over a period of time and had led to her eczema eventually.

One of these tests assessed the gut barrier damage by measuring antibodies to barrier proteins called Occludin and Zonulin. The other factor was the presence of Lipopolysaccharides (LPS) which are toxins given off by some of the gut bacteria. If they are found in the blood, it usually means there is a breach in the protective gut lining. Both of these were present in her bloodstream in high amounts.  The other tests showed that her microbiome (the collection of symbiotic, commensal and pathogenic bacteria, fungi and viruses which reside in our gut) was also in poor shape and that her body was not able to digest and absorb the nutrients efficiently. All of these tests collectively reaffirmed the fact that she had a gut health issue leading to a “leaky gut” .

Ongoing Functional Medicine treatment

 

Gut Health Word Cloud On a White Background.

The primary objective was to start healing her gut using a combination of supplements and medical foods, lifestyle and dietary changes. Hopefully, over a period of time theese measures would reduce the chronic inflammation in her system and bring her eczema under control without the use of harsh medications. I had already made the necessary changes as far as her diet (https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/) and lifestyle (https://eczema-anindianperspective.com/2015/07/23/green-power-greener-alternatives-for-laundry-and-cleaning-products-especially-for-eczema-and-sensitive-skin-2/) were concerned.

She has been prescribed supplements to repair and reinoculate her gut and strengthen her immune system. These include supplements like L- Glutamine (to repair intestinal lining), probiotics (we use a brand called Culturelle as well as Bifido Complex by Metagenics), Omega 3 (Nordic Naturals), Metagenics GI Sustain (a medical food containing vitamins, prebiotics, minerals). It has been a bit more than 3 months since we started her on this treatment which continues along with her regular immunosuppressive medication (Methotrexate). Her test results will come in anytime now and will show if there is any improvement since we started her on these supplements in October. I will share the results with you as soon as I can.

The silver lining in all of this is the fact that for the first time since the doctors put her on harsh immunosuppressive medications since 2012 (Azathioprine, Cyclosporine, Methotrexate at various points in time), this is the first time that I have been able to reduce her dosage from the optimal level. She has been doing fine on this dosage for the past month or so. It is a small but important step in the right direction and it really counts.

(For further reading: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

http://drhyman.com/blog/2014/10/10/tend-inner-garden-gut-flora-may-making-sick/

http://www.mindbodygreen.com/0-10754/the-6-best-ways-to-heal-your-gut-restore-your-health.html)

Difficult roads often lead to beautiful destinations

Famous Redwood Highway

It is so true! This is something I have come to know the hard way. Life changed for us completely about 4 years back when our daughter’s eczema turned into something so much more severe and complicated in the form of a chronic condition. I had to let go of my past way of living as a full time working mom and commit myself full time to taking care of the family and my daughter’s special needs. Of course, the whole family has had to make changes regarding our social commitments, travel, diet and other aspects of life. It has not been an easy road for any of us and indeed our daughter has faced the brunt of it. But even as I wish my daughter never had to deal with eczema at all, it has shaped us all in ways which have made us stronger, kinder and more resilient than ever before.

I have been sharing my research and knowledge about eczema and its related topics with you through my blog.  I also realised that in order to make all the changes necessary to manage my daughter’s eczema, I had to first make sure that she understood her condition in an age appropriate manner. I did this with the help of information and facts on eczema, countless discussion and counselling, story books and other means. This has helped her to not only accept the physical aspects of dealing with eczema (like moisturising and bathing routine, diet etc) but also deal with the far more difficult emotional aspects of living with this chronic condition.

My daughter’s dermatologist Dr Amrita Talwar has been instrumental in encouraging me to share our story and subsequently to write a book about eczema specifically for children. This has led me to write a book for children on this topic and is the first major development at my end. Both Dr Talwar and I realised that while there are many many resources for parents and adults who are looking for information on eczema and ways to deal with them, there is practically nothing for the children who are actually suffering from eczema. Hence the decision to write a book based on the experiences of a young girl dealing with her severe eczema. This book should help other children understand, accept and ultimately deal with their condition in a better manner. This book is scheduled to be published in the month of April and I will keep you posted on the same.

The other development at my end is that I will begin a new chapter in my life in the form of health counselling as a certified Health Coach. Over the past few years I have gathered a lot of knowledge about eczema and related topics pertaining to lifestyle ( clothing, detergents, moisturisers etc), foods  ( gluten free, nut free, dairy free) and their availability in India, essential oils, stress management through mindfulness meditation etc. I  would like to put all of these practical knowledge of dealing and living with a chronic condition as a caregiver to good use and share with others who are struggling with similar issues.  I decided to augment my experience and practical knowledge with a course from the esteemed Dr Sears Wellness Institute in the US to become a certified Health Coach. As many of you may know already, I had also started a Support Group for parents whose children suffer from eczema in Mumbai. I had taken a break due to my other commitments last year but I am planning to restart the Support Group meetings as well. My counselling work is also likely to begin in the next couple of months.

I can’t change the direction of the wind, but I can adjust the sails to always reach my destination

sailboat and sunset

This is exactly what I have had to do  in order to cope in the past few years as the primary caregiver for my daughter. This is what I teach her as well. While we cannot always change or control all the tough situations that life brings us, we can choose how we react to them.

In this post I have decided to focus only on the few baby steps that we have taken forward. We need to celebrate every little bit of achievement even if it may not look like much at all at that time. We have realised the hard way that dealing and living with a chronic condition is more like a marathon than a sprint and every step forward is a reason to rejoice. I hope we have more such reasons to celebrate in 2016!

 

A summary of some of the regular reatments for eczema

Eczema - Printed Diagnosis on Blue Background and Medical Composition - Stethoscope, Pills and Syringe. Medical Concept. Blurred Image.

I have been writing about our experiences with eczema (or more specifically Atopic Dermatitis) for almost 2 years now. I have written about the various treatments we have tried in various posts but I realised that I have not really written in details and in a comprehensive manner about the first, second line and third line treatments that are usually used to treat eczema.

(Please note: I will refer to Atopic Dermatitis as eczema in my post from here on to simplify matters)

In this post I have written about the regular medical treatment that is used once the moisturisers alone are not able to control the inflammation. Moisturisers are an essential part of the treatment for eczema and works very well in mild forms but may not be sufficient to bring the eczema under control once the skin becomes red and inflamed in moderate to severe eczema. I have myself been confused at times with the myriad topical, steroidal and non steroidal creams that are prescribed by the doctors at various points in time. Then there are also the oral steroid medications and different immunosuppressants and phototherapy treatment that we have used to control flare ups. I believe it would help a lot of parents (and those adults suffering from eczema) if they had some idea about the basics of the different types of treatments and medications that they may be using on their child or even on themselves. It would definitely help in controlling and reducing the side effects that some of these strong medications can have on a person if not used properly.

Topical steroids

Steroid cream.

Topical corticosteroids are prescribed by the doctor/dermatologist when the skin becomes red and inflamed and the eczema does not clear up in spite of maintaining a healthy and regular bathing and moisturising routine. The topical corticosteroids range from very mild to very potent and you should be very careful in following the doctor’s instructions in using the same for your child both in terms of quantity and duration. This is especially true for young children and babies. In any case, the topical corticosteroids are prescribed only when the risks from eczema far outweigh the risks from the side effects of using these medicines. When a child suffering from eczema is unable to sleep at night due to incessant itching and thus starts affecting daily life at school and home, there is a risk of infection due to the cuts and inflamed skin, it is wise to use steroid creams/ointments as per the doctor’s advice till the time the rashes have gone.

Some important points to remember while using these medications-

  • One should start using the lowest potency steroid and only step up if required
  • Topical steroids are most effective if applied immediately after a bath but should only be applied on affected areas and not as a moisturiser
  • One should follow the doctor’s advice on the frequency of application (usually twice a day is more than enough on severely inflamed skin) and should start tapering off as instructed instead of stopping abruptly
  • Step up and the step down method (in terms of potency and frequency of steroid) needs to be maintained while using the topical steroids to keep the risks of side effects of these medications as low as possible
  • One should avoid using these medications on the face and other sensitive areas and this is all the more true for children who have very sensitive and delicate skin

Given below are the various common (but certainly not exhaustive) topical corticosteroid creams/ointments that are available in India (and ones I am most familiar with) and their potency

  • Low potencyHydrocortisone creams (1%) are available as an OTC (over the counter) medicine in various forms like cream, ointment and lotions. This is the least potent amongst all the topical steroids but still should be used with caution especially for a child. This is especially true since this is easily available and one can unknowingly use this as a moisturiser without realising that it is still a steroid cream/ointment
  • Mild to mid potency– Steroidal creams/ointments like Desonide, Mometasone fuorate and Fluticasone propionate are available at the lower to mid end of the potency spectrum. These are brands like Desowen, Momate/Elocon and Flutivate brands in India for the respective steroidal creams/ointments respectively. The doctors will prescribe a particular steroidal cream based on the level of inflammation and rashes
  • Potent to highly potent– Steroidal creams like Betamethasone dipropionate and Halobetasol propionate are at the potent end of the corticosteroidal creams/ointment. In India we have brands like Fucibet (which also includes fucidic acid which is an antibacterial medication) and Halovate which include these steroids respectively.

You should also know there is an overlap in these topical medications since they are usually available in both cream and ointment forms and the potency for the same dosage will differ based on the form. The cream form has roughly half water and half oil, they spread easily, are well absorbed and usually wash off with water. Ointments on the other had are about 80% oil and 20% water and are thus “occlusive” which means they trap moisture and help in better absorption of the main component. Being occlusive, an ointment will allow the medication to get absorbed much more completely than a cream and hence are more potent at the same dosage as a cream.  

https://www.psoriasis.org/sublearn03_mild_potency

Application and side effects

Topical corticosteroids should be used in a step up manner in terms of increasing potency starting from a low potency and only moving up if required. Usually the doctor will prescribe the milder ones like desonide cream (brand name- Desowen) and only graduate to a stronger medication like Fucibet if required later on. Similarly, once the rashes have been brought under control, one should use the step down method both in terms of potency as well as frequency as per the doctor’s instructions.

As mentioned earlier, these medications should only be applied on affected areas and not as a  moisturiser. However, sometimes the rashes may be quite widespread all over the body. In that case, the doctor may prescribe a 1:4 ratio of a mild potency steroid like desowen to an emollient like cetraban which is then mixed thoroughly and applied all over the affected areas.

Side effects from these steroidal creams are varied and depends on the age of the person, the frequency of application, the potency of the drug amongst other factors. The thinning of the skin or skin atrophy is one such side effect which can take place if potent to highly potent steroidal creams are applied too frequently or without any break. However, one can avoid this and other side effects by following the doctor’s instructions for using this treatment and thus using this treatment as and when required, in the required quantity and for an appropriate duration. The other thing to keep in mind that in case of excessive scratching due constant itchiness in case of under medication, the skin tends to become thick and discoloured. Thus the treatment needs to be carried out in a timely manner under the supervision of a doctor and the instructions should be properly followed to minimise the side effects.

(Further reading-http://www.eczema.org/corticosteroids)

Calcineurin inhibitors

Another type of topical treatment available for eczema is the group of medications known as Calcineurin inhibitors. These are non-steroidal immunomodulators and are of 2 types- pimecrolimus 1% (Pacroma and Elidel) and tacrolimus 0.3% (Protopic). These topical medications work by suppressing the immune system and are usually prescribed to children over 2 years of age and adults and are recommended for use as a second line treatment for eczema.pacroma-cream

As with steroidal medications, these type of immunomodulators should also be applied only when prescribed by the doctor and for the recommended duration of time. Even though it does not have the side effects like thinning of the skin which is associated with steroidal treatments, one still has to be cautious while using these medications since they are relatively new medications and not much is known about their long term usage. There is a possible risk of skin cancer only in the long run after prolonged usage but it is still advisable to apply these creams at night to avoid sunlight exposure. These medications are also prescribed for eczema on the face (unlike topical steroids) and are prescribed for moderate to severe eczema only when the combination of topical steroids and emollients have not been successful.

(Further reading- http://www.ncbi.nlm.nih.gov/books/NBK45568/

http://www.ncbi.nlm.nih.gov/pubmed/14693489)

Phototherapy or Narrow band UVB

Another treatment that is prescribed once the topical treatments have not really worked for a person in controlling the eczema is phototherapy. It is used as a safer alternative to avoid using  the third line treatments of  the powerful immunosuppressive medications like azathioprine, methotrexate and cyclosporine.

In this treatment light or a particular narrow band of Ultraviolet rays are used to treat the eczema which is beneficial for skin diseases. It can be used both for localised as well as general areas of the skin covering the entire body. This treatment works effectively for some people but not for everyone and usually takes about 1 to 2 months to show the desire results. If this treatment is effective then it can effectively put the eczema in remission for a while at least. It may also minimise the usage of topical steroids and there its side effects.

Phototherapy is carried out in a special booth filled with UV rays for general treatment of eczema all over the body and hand-held devices for treatment of specific areas like hands, ankles etc. Nowadays, a high intensity phototherapy treatment is available in the form of a laser called Excimer. It is much more powerful than the regular phototherapy and emits Ultraviolet rays of a particular frequency which is used to treat different skin conditions like eczema, psoriasis etc. It is given in the form of a hand-held gadget and takes much less time than a regular phototherapy due to the high intensity of the rays and is more useful for treatment for localised areas of the body. However, one needs to be careful in protecting the eyes when undergoing this treatment. The risks associated with prolonged treatment are skin burns, increased ageing and increased risk of skin cancer. Like any other such treatment this has to be carried out under the supervision of a medical professional and all the instructions need to be followed carefully. (I have written about our experience with phototherapy in my blog post https://eczema-anindianperspective.com/2013/10/17/when-the-going-gets-tough-part-1/).

(This treatment is currently offered in the Comprehensive Skin Care Clinic run by senior pediatric dermatologist Dr Manish Shah in South Mumbai and the website is http://www.cscc.co.in/)

Oral Steroids

Steroids

The third line of treatment for eczema is the use of systemic medications like oral steroids. Prednisone is one of the most commonly used oral steroids given in cases of severe eczema where an immediate result is required and is given under strict supervision of the doctor. It is given as a daily dose starting with a high dosage and then is slowly tapered down once the eczema is under control. Oral steroids work by suppressing the immune system and helps in controlling the overactive immune system in the case of a person suffering from eczema. But this also makes it possible for the person to catch infections easily due to a weakened immune system and hence has to be monitored at all times. Also, in the case of a child, oral steroids may slow down growth and development and hence again one needs to be very careful.

There are other side effects as well which can be minimised by following instructions carefully and keeping a lookout for any symptoms which may arise on taking this medication. This is also done by carrying regular blood tests to determine adverse side effects if any. Due to the various side effects of this medication and its quick action, oral steroids are usually prescribed for short periods of time when results are needed fast. Bottomline, like any strong medications, one needs to take this under strict supervision and follow the doctor’s instructions about dosages  and how to start and stop taking this medication.

(Further reading: http://www.ncbi.nlm.nih.gov/books/NBK260241/)

Immunosuppressive medications

various tablets pills in bottle

The other third line of systemic treatments include the immunosuppressive medications like azathioprine, cyclosporine and methotrexate. These are all very powerful medications and are given only when all other options have failed to yield the desired results. All of these medications work by suppressing the immune system and hence bring the eczema under control. But once again, due to the various side effects these medications have to be given under strict supervision of the doctor prescribing this and by following all the instructions carefully. Since eczema is a chronic condition and these medications may be required to be given for long periods of time, regular testing is required to ensure that there are no side effects.

Azathioprine

Azathioprine works by tweaking the growth of certain white blood cells which contribute to the inflammation associated with eczema and thus suppresses the immune system. It takes a while longer to show results than cyclosporine and may not suitable for acute flare ups.The main side effect of azathioprine is bone marrow suppression and that is why a specific test is carried out before prescribing this medication which is called the TPMT enzyme test. This test determines the suitability of the person by determining the ease by which the person is able to break down azathioprine in the normal way. However regular testing would be required to keep a track of any adverse effect on the immune system. This medication is taken orally in the form of tablets and on a daily basis in the prescribed dosage.

We had a traumatic experience with this medication which was prescribed by a leading pediatric dermatologist in London for our then 7 year old daughter. In her case, even though she had a normal TPMT result, her body reacted disastrously to this medication and she suffered from bone marrow suppression and had to fight for her life. This was a one in a million kind of event and has never happened before to someone with normal TPMT levels. I have written about our experience in my post in 2013  and you can read about it at https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/.

Cyclosporine

Cyclosporine is another systemic immunosuppressant used to bring severe eczema under control and works by specifically blocking an important pathway in the immune system, and has different side effects than steroids. It is prescribed in low doses for eczema under strict supervision and once the eczema is under control, the medication is tapered off. One of the main risks associated with this medication is damage to the kidney especially with increased dosage and duration of medication and hence regular tests would be required to monitor the kidney activity. This medication has to be taken orally on a daily basis as per the prescribed dosage.

(I have written more about our experience of dealing with cyclosporine and azathioprine medications in my blog post where I have compared both at https://eczema-anindianperspective.com/2014/02/10/azathioprine-and-cyclopsorin-an-overview-of-two-immunosuppressive-medicines-used-to-control-my-daughters-eczema-from-a-parents-point-of-view/).

Methotrexate

Methotrexate is another systemic immunosuppressant which is used mainly in treatment for psoriasis and different types of arthritis. It is also given in low doses in cases of severe eczema and usually takes longer to work than cyclosporine. It has anti inflammatory properties and works by altering the body’s use of folic acid (a vitamin) which is needed for cell growth. Thus a folic acid supplement is a must on a daily basis for those taking this medication. This medication is taken once a week in the form of tablets. This dosage may also be split up into 2 doses taken within 24 hours to minimise any nausea that may occur. One of the main possible side effects of this medication is again adverse effects on the immune system especially on the white blood cells (which fight infection) and platelets (which help stop bleeding). Thus regular blood tests are required to keep a look out for any adverse side effects.

(Further reading- http://rheuminfo.com/medications/methotrexate/methotrexate-detailed-information)

Sometimes the hardest thing and the right thing are the same

Sometimes we don’t have a choice as far as giving strong medications to our child is concerned when the child is suffering from a severe chronic condition which adversely affects daily living. Of course we would prefer to find some alternative which is much safer and without any of the side effects that I have mentioned above. As of now we have not managed to bring our daughter’s eczema into remission and she needs constant medication in order to live a relatively normal life.

Things can also go horribly wrong like it did in our case in spite the very best of intentions. We have been very lucky and have learned to take this in our stride and be more vigilant in the future since our daughter still requires immunosuppressants to keep her severe eczema under control. This has not stopped us from looking for other options and neither should you. As one wise person had said, it does not matter how slowly you go as long as you do not stop.

The Functional Medicine and Gut Health approach to managing chronic conditions including eczema

I have written briefly about Functional Medicine earlier in my posts. I have also mentioned how I have gradually moved towards it over the past couple of years through my research to find a less harmful way of managing my daughter’s extremely severe eczema. I  have shown her to a Functional Medicine practitioner in London this past July and got some tests done to determine her Gut Health. The tests show that she indeed has a “leaky gut” or “intestinal permeability” issue. But before I get to that, in this post I would like to cover Functional Medicine and Gut Health in much more details and why we should all know more about it. (Of course just to be clear, I write as a parent who is trying out a Functional Medicine approach for her child and not as an expert or health professional).

A BESPOKE medical approach

We are all used to wearing clothes which fit us well and pay a premium if we need to for clothes which are customized for our body shape and size. But when it comes to health, we are used to an approach which is just the opposite. It is a “one size fits all” approach!

This has worked well in the past when we were dealing with infectious diseases like chicken pox, measles, cholera, small pox and others which have been brought under control which much-needed antibiotics and antifungal medicines. But a lot of the medical issues that we are facing today are due to not only our genetic predisposition, environment but also our lifestyle choices (food habits, diet and exercise) and stress. Hence, most of the times we do not realise that a lot of our chronic medical problems (autoimmune disorders like rheumatoid arthritis, coeliac disease, Grave’ disease and others like migraines, digestion issues, allergies, psoriasis etc) cannot be wished away by just popping a pill.

We will need to look beyond pills to deal with most chronic conditions. Luckily for us, there is an entire stream of medicine which is geared to do just that.

What is Functional Medicine?

Functional Medicine is an approach which is different from the conventional way that we use to deal with any kind of illness currently. Conventional medicine is of course necessary for dealing with acute illnesses which require immediate intervention either through medication or through surgery. So one needs to be very clear whether the health issue is an acute illness or a chronic one. Also, while conventional medicine focuses on symptom relief, Functional Medicine addresses the root cause of a problem. It has a patient centric approach that tries to find the root cause of any illness or condition by looking at each patient differently based on his/her lifestyle choices, food and dietary habit, genetic and environmental factors and other psychological factors like stress which has a tremendous bearing on a person’s well-being.

Functional Medicine is also science based and combines conventional medicine with a holistic approach by adding diet, supplements and stress management techniques etc which are not usually used in conventional medicine treatments. What is also important that it uses scientific methods like laboratory testing and latest diagnostic techniques to find out the root cause of any illness. Functional Medicine thus provides tools for the patient and the practitioner to customise and design a health management programme for each individual which is geared up to create health and not just to banish illness.

Ayurveda- a holistic approach towards diseases

Here I would like to mention briefly about our traditional treatment philosophy which is also patient centric and holistic in its approach towards diseases. In India, we have a tradition of healthcare called Ayurveda which translated in English literally means the “science of Life”. It focuses on how to prevent illness and how to address the root cause if it happens and is one of the earliest holistic treatments known to man. In that sense Ayurveda has a lot in common with Functional Medicine. But with the progress of Western medicine it has taken a kind of backseat in India over the years.

(I have written about our experience with Ayurveda in my earlier post- https://eczema-anindianperspective.com/2014/08/25/our-tryst-with-ayurveda-and-our-first-eczema-support-group-meeting-in-mumbai/).

Ayurvedic treatments are based on the principles of wholeness and balance. That is why the mind, body, spirit, emotional balance of a person as well as diet, lifestyle, stress is considered to be as important for treatment if not more than the actual medicine. It emphasises on treating the cause and not just the symptoms and hence looks to preserve a person’s well being and not just treat him. Unfortunately, due to various reasons (which is beyond the scope of this blog) ayurveda has come to relegated as an “alternative” medicine. This was all the more so due to a revolution in the history of medicine brought about by the discovery of antibiotics in the 20th century which has saved countless lives. But today we face a very different challenge which may need to be tackled quite differently.

Chronic illness- a growing phenomenon

As we all know the use of antibiotics has helped saved millions of lives since its discovery and has even helped eradicate diseases like smallpox etc. This new era of medicine honed its skills in targeting a particular agent which caused an infectious disease and then evolved to treat a particular symptom caused by a disease. This is the current approach of medicine towards all illnesses. But while acute medical issues have been dealt with very well by conventional medicine, chronic and lifestyle related issues are not faring as well. And the incidence of chronic illnesses are increasing exponentially led by the USA and followed by other countries all around the world.

(Sources: http://www.who.int/dg/speeches/2011/global_forum_ncd_20110427/en/

http://www.cgdev.org/doc/expert%20pages/nugent/Nugent_Annals_article.pdf)

A chronic illness also does not go away on its own, indeed grows worse over time and usually has multiple causes. The medications usually only treat the symptoms which make recurring episodes a regular feature. This means leading a life visiting doctors, popping pills and putting up with many symptoms. This is even more problematic since ironically we are living longer lives than our previous generations.

Also a myth that has been associated with chronic diseases and developing countries like ours is that chronic diseases affect only the elderly and wealthy parts of a society and is prevalent primarily in developed countries. That notion no longer holds any truth. This problem is all the more compounded when you add in the economic costs associated with the growing burden of chronic noncommunicable diseases. We now not only have to deal with the rising healthcare costs associated with chronic illnesses over long periods of time, we also have to factor in the loss in income due to same.

In India, the incidence of  Type 2 diabetes is steadily reaching epic proportions especially in the urban areas. Autoimmune disorders like Rheumatoid Arthritis, eczema and others like heart diseases, migraines etc are also on the rise.

Some of the articles whose links are given below will give you some idea of the criticality of this situation globally and in India-

http://www.who.int/chp/chronic_disease_report/part1/en/

http://archive.oxha.org/initiatives/economics/chronic-disease-an-economic-perspective

Gut health and Functional Medicine

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Functional Medicine recognises that though the symptoms may be similar in two different individuals, the medical approach required to deal with them will usually be radically different. This is due to the fact that while the manifestations of the disease is similar in both individuals, the genetic makeup of both are different, environmental factors like exposure to toxins are different and their lifestyles will also be completely different.

In this post I am focussing on one major aspect of Functional Medicine which is being recognised as the root cause of most chronic conditions including autoimmune diseases. That aspect is our “gut health” (or lack of). The others include genetic predisposition, lifestyle and environmental factors concerning each individual.

We are slowly coming around to this very important fact that our microbiome (or the many thousands of types of bacteria and other microorganisms which reside in our gut or intestines) determines our health and causes many autoimmune and other disorders when compromised. We carry about 2 kilograms of these microbes in our gut consisting of roughly tens of trillions in numbers and a part of the microbiome is unique to each of us.

This intestinal mircoflora has various important functions such as

  • digestion and absorption of certain foods
  • aids in the production of some vitamins such as Vitamin B and K
  • it has a protective function in keeping toxins, allergens out and balancing  out the unfavourable microbes
  • forms a protective barrier as a part of our immune system

Our gut system becomes off-balance and our health suffers when there is too much of harmful, pathogenic microorganisms like bad bacteria, yeast and parasites and too less of the health promoting bacteria. As mentioned earlier, this leads to chronic illnesses which are far more serious than just indigestion and heartburn.

Our gut health can become adversely affected due to various reasons like

  • a high calorie, sugar laden, processed food, low fibre diet that promotes the wrong kind of microflora
  • high use of medications like antibiotics which disturb the balance between the good and the bad bacteria
  • undetected low grade food intolerance and allergies (gluten, eggs, dairy etc)
  • deficiencies in pancreatic enzymes leading to issues with digestion and absorption of foods
  • toxins like mold, chemicals, pollutants etc which affect the gut and thus the health adversely
  • and last but not the least stress

Another serious issue which can crop up due to poor gut health is intestinal permeability or leaky gut syndrome. The lining of the gut acts as a barrier by containing the undigested food, toxic wastes and harmful microbes and filtering out only the required nutrients after breaking down the food into vitamins and minerals. This incredibly useful gut immune system may develop tiny gaps in the intestinal wall and allow leakage of undigested food particles, microbes and metabolic wastes which the body would then recognise as foreign invaders. This is called the leaky gut syndrome and can cause one to become allergic to all kinds of foods since the immune system starts defending the body against what it perceives to be foreign invaders. The hyperactive immune system if left untreated over prolonged periods of time can create inflammation and may eventually manifest itself in the form of various chronic conditions. Depending on the symptoms the illness is then classified as digestive disorders like Irritable Bowel Syndrome; migraines, chronic fatigue, arthritis, eczema and other autoimmune conditions.

(Sources for further reading-

http://www.medicalnewstoday.com/articles/290747.php

http://www.ncbi.nlm.nih.gov/pubmed/22583600

http://www.medicalnewstoday.com/articles/285122.php)

How is Functional Medicine really useful?

Abstract word cloud for Gut flora with related tags and terms

Given this backdrop Functional Medicine is poised to play an important role. By customising medical care based on the individual and not the symptoms of the illness, Functional Medicine is concerned with the problems afflicting the various organs and systems inside the body. As mentioned earlier it our intestinal (or gut) health which determines which nutrients are absorbed by our bodies and which toxins, mircobes and irritants are expelled. If anything happens to disturb this balance and affect our gut health adversely, it affects our health in myriad ways. (I have briefly touched upon this topic in my earlier post- https://eczema-anindianperspective.com/2015/06/12/not-all-those-who-wander-are-lost-eczema-and-our-ongoing-journey/). Functional Medicine focuses on this very important aspect of our health by trying to heal the gut health first and foremost in tackling chronic illnesses and autoimmune conditions.

Some of the basic changes that we can make to heal our gut would be

  • eat whole unprocessed foods like vegetables, fruits, nuts seeds etc which are high in fibre, nutrients
  • limit intake of sugar and processed foods
  • cut out/limit foods which you are sensitive to (gluten, dairy, eggs, shellfish)
  • take help to increase healthy bacteria in the gut and repair the instestinal wall (if damaged)

Functional Medicine also advocates the 4 R programme which acts as a framework based upon which we can make changes to improve and repair our gut health.

1. Remove- remove the allergens ( gluten, dairy, eggs, shellfish etc), inflammatory foods like sugar, processed foods and other irritants like alcohol, tobacco etc

2. Replace- replace the good stuff which are essential for good gut health like digestive enzymes and of course whole, unprocessed plant based foods, low sugar diet

3. Reinoculate- this step is all about restoring the balance of good bacteria in the gut microflora.This is done by taking prebiotic and probiotic supplements (containing the benefical bifidobacteria and lactobacillus species).

4. Repair- the necessary ingredients have to be reintroduced for the gut to repair itself which includes supplements like zinc, omega 3 fatty acid and vitamins.

There are tests available for determining the gut health. I am not sure about the availability of these tests in India yet though there is a clinic in Kochi called Heal Wellness which claims to be the first IFM certified clinic in India. (I am also not aware of any further details other than that what they have provided on their website).

A few of these tests include intestinal permeability test through urine samples; nutritional evaluation tests which can determine nutritional deficiencies and hence help in supplementation and comprehensive stool tests to determine the microbiome health in the gut. There are Functional Medicine practitioners who are health professionals trained and certified by the Institute of Functional Medicine (IFM) who can help in determining which tests need to be carried out and the subsequent course of action.

The Institute of Functional Medicine is the main body for Functional Medicine and is based in Santa Fe, USA. It was cofounded by Dr Jeffrey Bland who is considered to be the father of Functional Medicine. He has also written several books on this subject and if you want to know more about chronic illnesses and why they happen; the role of Functional Medicine etc you can read his book ” The Disease Delusion“.

(You can read more about IFM here – https://www.functionalmedicine.org/AboutFM/History/)

Physician- heal thyself!

There are some well-known Functional Medicine practitioners who though trained initially in conventional medicine are now following Functional Medicine principles in their work. Some of them had a taste of Functional Medicine when they suffered from their own health issues. Where conventional medicine failed them, Functional Medicine was able to control and even reverse the chronic condition in one case. Now they are all following Functional Medicine approach in treating themselves and their patients. You can read about them here-

Dr Mark Hyman (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/hyman/)

Dr Robert Hedaya (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/Hedaya/)

Dr Gerard Mullin at John Hopkins Hospital (http://thefoodmd.com/about/)

Dr David Perlmutter (http://www.drperlmutter.com/)

Dr Mark Houston (https://www.functionalmedicine.org/AboutFM/ourteam/faculty/bios/Houston/)

Dr Amy Myers (http://www.amymyersmd.com/2013/01/heal-your-gut-heal-yourself/)

Dr Terry Wahls (http://terrywahls.com/about/about-terry-wahls/)

Our health in our hands

Fruits And Vegetables Diet Word

Our health is determined by a myriad factors but the basic ones are our diet; lifestyle; exercise and movement levels; stress related factors; our environment; personal relationships and our relationships within the community.

Also, my experience of dealing with my daughter’s severe eczema over the past few years has taught me that we need to take some responsibility for our own health instead of leaving it completely to our doctors. We also need to take care of our health not just when we fall ill but much much before.

That means taking care of our bodies and treating it as a friend rather than an adversary that needs to be either tamed (through various fad diets) and/or ignored (either intentionally or unintentionally) till such time an illness crops up. (Of course one can always fall ill even after taking adequate care but then like much else in life there are no guarantees here only possibilities) I would rather try to explore all the possibilities that life has to offer rather than have regrets due to a lack of effort, wouldn’t you?

The good news is that today we have access to information, knowledge and the experiences shared by other people on their own journey from sickness to health that we can all learn from. We can thus work along with our health professionals and use their expertise and knowledge to improve and maintain our own health. An example of a person coming to this realisation the hard way and which proved to be a major turning point in his life is the top tennis player in the world, Novak Djokovic. You can read about his story in the book “Serve to Win”. One should however keep in mind that each of us is unique and what works for one person will not necessarily work for another. You will have to patiently find out what works for you and your loved ones.

Take care of your body; it’s the only place you have to live

Take Care Of Your Body Quote

I started writing this post planning to simply introduce the Functional Medicine approach to dealing with chronic illnesses like eczema, diabetes, migraines etc based on my understanding. But I realised that I also needed to include a detailed background given the increasing incidence of these illnesses in our lifetime. I hope I have been able to share a bit of what I have understood about this issue that you may or may not have been aware of.

I started on this quest because of and for my daughter who suffers from severe eczema and which is being managed through strong immunosuppressive medications. My family and I have reached this stage through a lot of trial and error but always with the guidance of our doctors who have been with us every step of the way. We have already seen some results with the changes we have made in our daughter’s diet but we still have some way to go. We will be starting treatment based on Functional Medicine principles soon for her with the help of an IFM certified practitioner. We are taking an informed decision based on studies backed by science and evidence and which has helped so many others like her to cope with various chronic illnesses. Even if we can simply heal her gut to begin with will itself be a minor victory.

I share all this with you so that it may encourage you to find out a bit more for yourself if you need to. We often do not realise how much more can be done to improve the quality of our lives if we really wish to. As one wise person put it very simply, we have only one life and one body. Our health depends on what we do with it.

Green power!! (greener alternatives for laundry and cleaning products especially for eczema and sensitive skin)

I am publishing an updated my article on ecofriendly and natural alternatives for laundry and cleaning needs at home. It is a primer for those of you who are looking for eco friendly and natural alternatives for a cleaner and greener home.

Cleaning word cloud concept

I find that it is important for me to highlight the fact that there are harmless, natural, environment friendly laundry, dish washing, and cleaning alternatives which are available to us. In this particular post I have focused on the laundry and household cleaning agents that we use (In subsequent articles I would be focusing on the impact of our food habits and diet). While most of us do all that we can as far as moisturizers and bathing products are concerned for children who have eczema, some of us are not aware that the regular dish washing, cleaning and laundry products used in a household can also have a large and harmful effect on sensitive skin and allergy/eczema prone children (and adults). In India especially, eczema and other allergies are a recent phenomenon as compared to the West.

While I was happy using regular detergents and cleaning products for my household cleaning and laundry needs, I was particularly happy using highly fragrances and foaming cleaning/laundry detergents and thought that all products which were labelled as “child/baby friendly” and “gentle on the skin/clothes” actually were child friendly and gentle on the skin. But after a bit of research I was quite surprised to find that quite a few of the products that I had been using all my adult life were cumulatively doing more harm than good to my entire family and this was especially true for my daughter who has severe eczema. That is when I started looking for alternatives and was pleasantly surprised to find out that there are much better, natural, harmless and environment friendly options which might also be much more economical for regular use. Now, over the past couple of years in my quest to manage my daughter’s severe eczema, I have made a lot of changes in our lifestyle which includes skincare products, laundry products, dish washing products as well as other household cleaning products.

Natural Non-Toxic Cleaning Products

Since I am sharing my own personal experience in using these products, I have restricted this post to products which are available to Indian consumers only. Also, please note that I am going by the information provided by the manufacturers as far as the ingredients are concerned, certifications as mentioned and in some cases I have taken into account the product reviews by other users. 

 All that foams is not soap!

 Soaps and detergents are two different things but are often mistaken to be the same. While soaps are traditionally made from fats and oils and have been around for centuries, detergents are usually of synthetic origin and is a much more recent phenomenon. Detergents react less to minerals (found in hard water) than soap and hence is now the preferred choice for most.

soap-bubble-kidsstoppress

  • Sulphates are surfactants which are used in a wide range of products especially laundry and dishwashing detergents in order to reduce the surface tension of water thereby improving its ability to wet things and remove the dirt.
  • Other products where Sulphates are found are bathing products like shampoos, shower gels etc, toothpastes and even baby care products and it provides the “foam” that we are so used to.
  • Nowadays most of the skincare and laundry detergents usually contain the gentler Sodium Laureth Sulphate (SLES) plus a host of other chemical fragrances and preservatives and not the much harsher surfactant Sodium Lauryl Sulphate (SLS).
  • But even SLES is a chemical which is harmful for sensitive skin and it is just one of the many chemicals which are present in any cleaning/skincare/laundry products.
  • The other common chemicals are preservatives like Parabens (Methyl, propyl, isbotyl to name a few) and Methylisothiazolinone fragrances which are mostly made of synthetic chemicals and synthetic colours,  found in many baby and child care products.
  • Many organic and natural products have preservatives like Parabens and foaming agents like SLES unless stated otherwise. Hence it is imperative while buying any such product to check the ingredients listed carefully no matter what the label says in the front. The good thing is that there are detergents (laundry and cleaning purposes) which are available to us today which use natural ingredients and are also fragrance free.

Soapnuts- the underrated cleaning agent

 Soapnuts (or reetha as it is known in India) is actually not a nut but a dried berry or fruit which is highly effective in powder and liquid form and can be used to clean clothes, jewellery, dishes, hair and other household items. It is found mostly in India and Nepal and was used extensively in India to wash clothes and hair long before liquid detergents and shampoos took over.

 

Nutshells of soapnuts in a cotton bagThe saponin which is found in the fleshy part of the soapnut is a 100 % natural hypoallergenic surfactant which is believed to have antibacterial and antifungal properties as well.

  • Soapnuts can be used for cleaning pretty much anything and is the only cleaning product which is completely natural. Any other product which is labelled ‘natural’ will contain at least some chemicals like preservatives, fragrances amongst others.
  • The other important aspect of using soapnut is that it extremely convenient to use in washing machines (front and top loading) and dishwashers (in liquid form).
  • We use soapnuts regularly as the main cleaning agent for all our clothes and white vinegar and essential oils (lemon is my favourite) as a fabric conditioner and to remove grease and add natural fragrance to the laundry.

Other laundry products

 Apart from soapnuts products which are natural, biodegradable and convenient to use either by hand or in washing machines are as given below.

Power Laundry, Liquid Laundry and Bio Laundry Bar from the Rustic Art brand: The main ingredients in these products are soda ash, natural neem soap powder, glycerine (for liquid laundry), non edible oils (for soap bar) and natural lemon extract. I use these products for my bed linen, towels, soft furnishings and other heavy materials, delicate clothes and woollens (Liquid laundry) and I use the Laundry bar for the tough stains.

rustic_art_power_laundry-kidsstoppress

Bio-D from Dailydump.org: Bio-D is a bio detergent by dailydump.org (a brand of Bangalore-based PBK Waste Solutions Pvt Ltd) which is a biodegradable product made from palm oil. I have been using it as an alternative to the Bio Laundry bar from Rustic Art for the past year or so for the clothes which are handwashed.

Another product which is relatively new and is available in India is Kyra Natural Detergent Powder which is made of organic soapnuts. I plan to use this in the near future.

Home clean home

 There are various household non toxic and environment friendly cleaning products which are available to us. One can use basic kitchen items like white vinegar, baking soda and lemon to make cleaning products. I have used a combination of these from time to time to clean my kitchen pretty effectively. ONe of my favourite recipe for a multipurpose cleaner is as given below-

All-Purpose Cleaner recipe from goodgirlgonegreen.com

3 parts filtered water

1 part vinegar

1-2 tsp lemon juice

5-7 drops of lemon essential oil

Source:http://www.goodgirlgonegreen.com/7-diy-cleaning-recipes-using-vinegar/#sthash.dwxieNSg.dpuf

(You can check out more useful articles on homemade and non toxic cleaners from the following websites-

http://www.goodhousekeeping.com/home/cleaning/tips/a24885/make-at-home-cleaners/

http://www.thenewhomemaker.com/cleanorg/vinegar.html)

Natural cleaner. Vinegar, baking soda, salt, lemon

But for those who want a more convenient off the shelf option there are other products available as well in India. These products are made using natural ingredients like essential oils, plant extracts which are thus biodegradable, non toxic and eco friendly as well. I regularly use the products listed below for my cleaning purposes:

  • Just Mop Spray- Multipurpose Household Cleaner and Just Mop- Herbal Surface Cleaner from the brand Herbal Strategi
  • Floor and bathroom cleaners from the brand SOIL
  • Floor cleaner from the brand Safe O Shine

Harmless dish washing alternatives

Dish washing detergents also use foaming agents, synthetic fragrances and other chemicals to make them extremely effective in cleaning grease and dirt. But if you are really interested in making a change for greener alternatives, there are other options available.

One option is to make a dishwashing liquid from basic items like washing soda, citric acid and vinegar like the recipe mentioned below from the blog myhealthygreenfamily.com (source: myhealthygreenfamily.com/blog/wordpress/homemade-borax-free-dishwasher-detergent-with-secret-ingredient/) which also can be used in the dishwasher

1 cup washing soda (old recipe used  baking soda)

1/4 c. citric acid

1/4 c. coarse salt

10-15 drops of citrus essential oil (Optional.  Orange, grapefruit, or lemon essential oils have great cleaning as well as antibacterial properties.)

Distilled white vinegar (in the rinse aid compartment)

Mix first 3 ingredients well in an air tight container. Add essential oil.  Mix again.  Fill your rinse aid compartment with undiluted white distilled vinegar.

Use 1 tsp. detergent for average loads.
Use 1 tbsp. detergent for extra greasy, dirty loads

White distilled vinegar can be thus be used along with lemon essential oil as a rinse aid thus eliminating the need for any artificial rinse aid products.

Another option is to buy a scrub made of the combination of soapnuts, shikaki (dried fruits of the Acacia tree native to Asia) and lemon peel which is a completely natural, non toxic and ecofriendly option for dish-washing by hand like the one by dailydump.org.

Availability and delivery in India

I have been able to find out about all the products mentioned earlier through a lot of research on this topic over the past few years. I have also managed to source these products in a few cases through the manufacturer’s own websites but more often than not through the various websites advocating a green, eco friendly and healthier way of life. These are websites which list organic foods, clothing, personal care, cleaning and other products.

Some of my favourite websites (with quick delivery and good service) are as listed below ( in no particular order):

  • DailyDump.org : A comprehensive website which promotes green, eco friendly and sustainable lifestyle through composting and non toxic products for home and garden. This website has the Vanastree soapnut and shikaki scrub (manufactured by Dailydump) that I use for my dishwashing needs and the Bio- D biodegradable detergent for laundry purposes. They also have their own brand of soap-nuts (108 Soapy Nuts).
  • NaturalmantraGreenngood and naturallyyours.in: These are comprehensive websites which list organic foods, supplements, natural home care, personal care products etc and is very convenient to buy laundry and household cleaning products from. I use all of these websites from time to time for my house cleaning, laundry and other household and organic grocery requirements.

I have compiled some of the easy and convenient ways in which you can use non toxic, natural alternatives for your household cleaning, laundry and dishwashing needs and their availability. I hope that this will encourage you to make your home a greener, eco friendly place for your family and friends.

Please feel free to get in touch with me for any queries or if you have any suggestions on this topic.

“Not all those who wander are lost” (eczema and our ongoing journey)

There are many of you who have been following us on our journey as we deal with our daughter’s severe eczema over the years. There have been many ups and downs; times filled with a seemingly never ending despair and other times where we see the silver lining that is hidden behind the dark clouds. We have many nights of sleeplessness, days and nights filled with endless itching and bouts of crying when it gets too much sometimes. There is also THE question which comes up once in a while, “Why me?” I have no real answer to her question which would satisfy her need to know.

But I do know this! 

Through all  these times we have experienced many precious moments filled with small pleasures, much love and loads of fun. We have learned how to appreciate all that we have by focussing on all the good things in our life rather than all that we do not have. This helps to put things in perspective and never fails to bring a smile to our faces. We have also learned to accept that our life and our daily routine is usually quite different from others and we have made peace with it. We simply have different requirements than most other families when we travel, eat out and socialise amongst other things.

We have come to realise over a period of time that this is our new “normal”. Whatever normal family life we had envisioned for ourselves when we had our first child fell by the way side when our daughter’s eczema became a huge part of our lives. We have simply changed the definition of leading a “normal” life and now use one which works for us! 

Our life has thus changed drastically over the past few years in terms of lifestyle, food habits and priorities. I have been sharing these changes with you through my blog for almost two years now. In this post, I have shared the actual changes that we have made to our food habits over the past 9 months or so.

Our diet today based on eczema safe foods

 

I had mentioned in my post last month (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) that I would write about her diet in details in my next post and here I am!

It has been roughly about 6 months since I started to follow a very specific diet to control my daughter’s eczema based on the book “The Eczema Diet” by an Australian nutritionist, Ms Karen Fischer. The initial 3 months have been the toughest so far with restrictions on the number of fruits, vegetables and spices amongst other things. I did however prepare her mentally over a period of time prior to starting her on the diet to make this transition as smooth as possible. This is a huge change in lifestyle since food comprises a big part of our lives and this change needs to be handled well especially for a child. Once my daughter understood why we were making these changes and how it had benefited others like her suffering from eczema, she became a willing participant. 

These restrictions are to repair my daughter’s system from within by restricting the intake of the various naturally occurring chemicals (salicylates, sulphites and MSG), allergens, anti nutrients and restore acid alkaline content in the body. Eczema unfriendly food groups like ,wheat, dairy, eggs, sugar etc were all removed even though initially I did give her low gluten foods like spelt flour, rye and barley (no wheat). Eventually over the past few months her diet has been gluten and dairy free, she mostly has organic grains and produce, no refined sugars are added (only much less acid producing maple syrup and golden syrup in low quantities is allowed) and mostly free of preservative/chemical/colouring free (the only exception is the occasional rice pasta).

Simultaneously the acid-alkaline balance in her body is being restored through a higher intake of alkalising foods like moong bean sprouts, celery, beetroot, carrots etc on a daily basis and taking only those acid-forming foods like legumes/wholegrains/chicken etc which are good for skin or are nutritious in other ways. Restoring this acid-alkaline balance is very important because our diets nowadays tend to be filled with mostly acid forming with foods like bread (containing yeast); sugar in processed foods like breakfast cereals, bakery items apart from beverages (fruit juices, sodas etc); corn and corn based foods; cheese just to name a few. While going to an extremely alkaline diet is not recommended, our body needs a healthy and balanced diet to maintain healthy kidney function and prevent weakened bones, muscle wasting and of course the itchiness which is prevalent in those with eczema.

(Further reading resources: http://www.mindbodygreen.com/0-5165/Alkaline-Acidic-Foods-Chart-The-pH-Spectrum.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195546/)

The diet is divided into 2 phases- Phase I and Phase II and I have written about them in my earlier post-

https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/

Phase I–  The phase I recipes were very basic and initially I followed most of the recipes given in the book. But I had to adapt some of the recipes a bit to suit our Indian taste and add a few of my own in order to ensure that I could give her some variety even with all the restrictions. She was allowed only garlic and parsley as far as spices and herbs were concerned which proved to be the toughest part about following the diet since Indian food is filled with all kinds of spices. The other difficult part was cutting out all (100%) processed foods and eating only homemade food. Some of the foods that my daughter enjoyed in the first phase were baked fish (pomfret) with garlic in white sauce made of soy milk and brown rice flour; baked chicken in garlic and in a similar sauce; mutton/chicken biryani (or lightly flavoured mutton/chicken in a kind of rice pilaf) with only garlic and broth as the main flavour.

While initially it was difficult for her to forego a lot of her favourite foods (pizza, Maggi noodles, baked items like doughnuts, cupcakes, biscuits and candies to name just a few), over a period of time she has accepted it as a way of life and has made peace with it. In response, her skin condition improved visibly and her itching reduced to an extent. But I should also mention here that since she was started on a new immunosuppressive medication (Methotrexate), the changes would be due to both her medication and diet. But while medication would have helped to suppress and control her eczema, her skin tone has gone back to what it was 2 years back and all the weight that she had put on due to oral steroids simply fell off. I attribute these two significant changes to the changes in her diet.

Phase II – The second phase has been much easier to follow as compared to phase I. Also the fact that I have honed my skills as a baker and chef has helped immensely. I can honestly vouch for the fact that necessity is the mother of invention! All the restrictions that circumstances have placed upon my daughter and as a result on our family have helped me to innovate and become a better cook/baker than I would possibly have ever been otherwise.

Our family is eating a larger variety of healthy foods than ever before with minimal processed foods (so bye-bye preservatives, sugar, chemicals, refined and simple carbohydrates, junk foods) and loads of heart healthy, skin friendly fruits, vegetables and protein (mostly fish and chicken) with natural/organic ingredients. The fallout of all this is that both my husband and I have shed some of our excess weight naturally as a result of incorporating green and healthy juices/smoothies, healthy snacks etc into our own diet.

(You can read more here- https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/)

SInce I had to restrict my daughter’s diet to ones with very specific ingredients, I started making a lot of the desserts/foods like crackers, cookies, doughnuts, cakes etc with eczema safe ingredients at home. Over the last 6 months I have added a lot of variety in terms of foods like jowar, brown rice and brown rice flour, flour, quinoa, sweet potato, sprouts (all kinds), vegetable juices and smoothies. Quite a few of these changes have been for the entire family.

There are however “The Itchy Dozen” foods according to the book which are healthy for most people but do not usually suit those with eczema and is best avoided. Some of these foods that I now avoid giving my daughter are tomato, corn, grapes, dried fruits, deli meats (sausages, ham etc) since all these foods are high in amines, sulphites and MSG (in varying proportions and various combinations). You can read more about these foods at the link given below-

http://www.eczemalife.com/pages/top-12-eczema-itchy-foods-to-avoid

A few suggestion for meals and snacks

Making snacks which are tasty and at the same time eczema safe has been a big challenge but I have managed to adapt and find alternatives which work for us. Working with Indian staples like puffed rice or murmura, flattened rice or poha, lentils and pulses like moong daal, red chana, kabuli chana some of the food items I started making are mentioned below-

  • bhel (a dry mix of puffed rice, potatoes, carrots, coriander leaves, cucumber with citric acid and a touch of cumin)
  • potato/sweet potato tikkas with/without mutton kheema/minced spiced with ginger, coriander, whole cumin (mashed potato croquettes shallow fried in the pan)
  • Moong daal chilla (or crepes with moong daal soaked overnight and then made into a batter) with onions, coriander accompanied by mint and coriander chutney
  • hummus dip(chickpeas, garlic and citric acid with a bit of cumin) and vegetables like carrots or cucumber
  • popped jowar (a delicious alternative to popcorn) is a favourite for both my children and is made pretty much the same wasy as pop corn

Some of the main courses that my daughter enjoys apart from our regular Indian meals are-

  • veggie and rice pasta with loads of garlic and mixed herbs (no cheese) with/without chicken
  • Brown rice and moong daal dosa with potatoes (I am not giving her any fermented products yet)
  • mixed veggies and rice flavoured with broth and a few whole spices (bay leaf, cinnamon and cardamom) with/without chicken
  • I make various soups with eczema safe and skin friendly vegetables like beetroot, sweet potato, carrots, and others like chicken and veggies soup, chicken and pasta soup, mutton stew (occasionally)
  • brown rice noodles (occasionally) with veggies

You can be as creative as you want but the key thing here is to plan ahead. Also, keep in mind that eating healthy does not mean eating only a few foods and having dull or unappetizing foods. Since I have been forced to look outside my comfort zone of eating/preparing the same foods all these years, it has actually opened my eyes to the amazing variety and richness of foods that is available to everyone if one knows where to look.

The availability of different varieties of foods (quinoa, gluten free flours, golden syrup, organic produce, kinds of microgreens and salads, gluten free milk like almond and soya to name a few) both offline through Godrej Nature’s Basket and Foodhall stores in Mumbai and online (gourmetco.in, foodesto.com, naturallyyours.in) have really helped us a lot.  

It’s not a diet, it’s called Eating Healthy

As our daughter now says, she is not following any particular diet as of now but simply eating “healthy”.This is true not only for her but for the entire family. Of course it is not always very simple or easy to eat healthy especially while travelling or eating out even though our daughter’s eating out now is extremely restricted for obvious reasons. But now I realise that after more than 9 months of changing our food habits at home, my husband and I tend to think twice before we order the next cake, sugary drink or buy a packaged food. What started off as a necessity to manage our daughter’s eczema has become a habit for us. It became easier for us to accept and change our food habits once we realised the critical importance of diet in managing chronic illnesses like eczema (I have written about this in my earlier post- https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/).

Also, even though I have expanded her diet and modified it to suit our Indian tastes over a period of time, the book “The Eczema Diet” is what first made me consider food and diet as a tool for managing eczema. I have now come across and follow various other blogs and websites which are dedicated to managing various kinds of chronic conditions through food and dietary changes, reduction in stress levels, yoga and other forms of mind- body excercise etc.

As mentioned in my post (https://eczema-anindianperspective.com/2015/04/08/you-are-what-you-eat-eczema-and-food/) we will be getting some tests done in London with the help of a Functional Medicine practitioner for “gut health” permeability. Gut health is determined by a healthy variety and a community of about 100 trillion microbial cells in our digestive tract and impacts our physiological, nutritional, metabolic well-being including our immune system. It is now considered to be one of the leading causes of all kinds of chronic illnesses like coeliac disease, irritable bowel syndrome, eczema (now considered to be an auto immune disease), Graves disease, Hashimotos just to name a few and it’s importance is best explained by the image below. I will be wrtiting more on these once we get tests done next month and have more clarity on the same.

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You can do your own research on this and use this knowledge to make an informed decision about the making food and diet an important part of the treatment for your child or anyone suffering from autoimmune disorders/chronic conditions.

(Image source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065426/figure/F1/)

(Further reading: http://www.nih.gov/researchmatters/october2014/10062014autoinflammatory.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3667473/)

Not all those who wander are lost

And so it is with us. Our journey is long and is filled with twists and turns and Atopic Dermatitis seems to be our constant travelling companion whether we like it or not. So over a period of time, we have learned to gracefully accept these circumstances to make our journey more comfortable and even memorable. This is true even though all the while we are constantly trying to manage our daughter’s eczema in ways which are less harmful to her in the long run. Whether we realise it or not, sometimes it is the journey which teaches us a lot about our destination….

 

 

 

 

 

 

The journey of a thousand miles begins with one step

Our family’s journey began some years ago when our daughter was diagnosed with eczema (Atopic Dermatitis). Since then we have come a long way. It has motivated me to work towards increasing awareness about this condition in our country where it is very low. This will not only help my daughter but also countless others sufffering from this condition who have to deal not only with Atopic Dermatitis but also with a society which is not sensitised to this condition and hence increases the level of suffering and pain in myriad ways.

In this regard, the first “Walk for Eczema” in Mumbai was organised by the Eczema Support Group for Parents and my daughter’s dermatologist Dr Manish Shah (under the aegis of IADVL SIG Pediatric Dermatology ) on the 17th of May, Sunday at Bandra West. It was attended by our family, friends and other supporters as well as some prominent dermatologists from South Mumbai. We were able to reach out to many who were attending the Equal Streets Moevement in Bandra and pamphlets about eczema were handed out to them in three different languages.

The success of this walk is measured not only in terms of the number of people we were able to reach out to directly but also in terms of bringing together for the first time parents, patients and dermatologists who walked hand in hand for this common cause. This event has thus helped to pave the way for such future events which will go a long way in increasing awareness in our country.

Our first “Walk for Eczema” in Mumbai on the 17th of May, Sunday

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I am really happy to announce the first “Walk for Eczema” which has been organised in Mumbai on the 17th of May, Sunday. This has been organised in collaboration with IADVL SIG Pediatric Dermatology(an Indian body for Dermatologists and other skin conditions). This is the first such event of its kind in our city and a part of my ongoing endeavour to increase awareness about this condition in my country.

The complete details are as follows-

Event details

Where :   Equal Streets, HP Junction on Linking Road, Bandra(W)

When:     17th May, Sunday

Starts:     730 am

Ends :     9 am

Organized by: IADVL SIG Pediatric Dermatology and Eczema Support Group for Parents (Mumbai chapter)

Contact: Anindita Rungta/ Comprehensive Skin Care Clinique

Email:    walkforeczema@gmail.com

Contact no. +91 7738533913/ +91 22 23810304

There will be a brief Q&A session at the end of this walk with a senior pediatric dermatologist based in South Mumbai.

Please let us know incase you are interesting in joining us or know anyone who would benefit from this event.