Tag Archives: Gluten-free diet

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

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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….

 

 

 

 

 

 

Eczema and diet (gluten free)

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Eczema has been known to be affected by diet in many cases especially in the case of children. Eczema can be triggered or made worse by many things like house dust mites, excessive humidity or dryness, pollen, stress or by eating certain foods amongst others. In the case of many children with severe eczema, food maybe one of the causes but in the case of a few children it maybe their only trigger.

When Aiyana’s eczema became worse in June 2012, we did her blood allergy test which looks for specific allergen-related antibodies (IgE or immunoglobulins which is one of the 5 sub classes of antibodies) in order to identify her allergy triggers. I was really hoping that by finding out her food triggers we would be able to control her eczema which was worsening and slowly spiralling out of control. But I also knew that food is very rarely the only trigger and hence changes in diet alone cannot by itself help control eczema without the support of a good skin care and moisturizing routine.

Her results came back positive for most of the 29 allergens we had tested her for  showing high IgE levels for tree nuts (like hazelnuts, walnuts), house dust, sesame seeds. Her total IgE levels were higher than normal and surprisingly the test showed positive results for wheat, oats, lemon as well. As her pediatrician put it so well when she explained the results to us- “ Aiyana’s skin is like an angry person, such a person will react to most triggers at this point in time”. By the time we had got these results, we had seen her skin condition deteriorate continuously since October 2011 in spite of trying out the entire range of moisturizing and topical corticosteroids arsenal as and when required but to no avail. I decided to control her diet for the next year or so in the hope that it would help improve her eczema since it has seemed to help some other children. Since surprisingly for us she had a high positive outcome for wheat in the test, I really hoped that it might have been a key trigger for her eczema becoming worse over the past year or so.

In any case I was determined to leave no stone unturned in trying to control and improve her eczema. Hence I made certain changes in her diet, the most difficult part of which was making it “gluten-free”. I have decided to share my learnings that I gained by doing a lot of research on this unique diet, its availability in our country and ways in which I made sure Aiyana was able to follow this at home and more importantly outside as well.

GF

LUCKILY for us, we did a much more accurate skin scratch test for her in May this year and gluten was ruled out as an allergen and slowly we were able to introduce wheat and other forms of gluten without any issues. 

Gluten free??

In a country like India where allergies and diet restrictions are not very common and awareness is very low, the challenges of following a “gluten free” diet increases manifold. And when I had to explain dietary restrictions to a 6 year old child (and to others around us) and ensure that she follows it, I had to  make a lot of changes to the way we thought about food. Gluten is the protein complex found in wheat, barley and rye whereas oats is inherently gluten free but invariably suffers from cross contamination with other such grains. It gives elasticity to the dough, helping it keep its shape and And it is found in, well almost everything and I mean EVERYTHING!! I never knew it was all invasive till I had to list down foods that did not have gluten.

All the breads, pastas, noodles, Maggi, cakes, desserts, all the kinds of Indian breads like naans, rotis, wafers, biscuits and a host of other child friendly and convenient foods were a complete NO NO. The positive things about this was that a) it automatically made me look for healthier alternatives and more home cooked foods without high levels preservatives, sugar, fats and salt b) my daughter did not have coeliac disease which is an autoimmune disorder affecting the small intestine which has reduced inability to absorb nutrients from the food and only a COMPLETELY Gluten free diet helps. In fact, I had not even heard of this condition till I started to find out more about gluten free diet. Even now I have heard of just once child having this condition which is still comparatively rare in India. For a person having Coeliac disease, even a very small exposure can lead to seizures, osteoporasis and growth issues in children. In my daughter’s case I did not have to worry so much about cross contamination in the kitchen or the dust from wheat, maida (refined wheat flour) affecting her health since it did not affect her to that extent.

We never truly realise what we have till we have till we have to live without it

However, food was to become a huge challenge for us. I changed our flour options from wheat to others like jowar (sorghum), bajra (pearl millet), ragi (finger millet) but not completely successfully. For a child who is accustomed to the taste of wheat, it is a HUGE change.And it is definitely easier said than done. I started making pancakes, chapatis (a type of Indian bread) out of jowar, unsuccessfully tried to give her other food options made of ragi and bajra. She just didn’t like the taste. Luckily, a diet followed predominantly in southern India is made of rice and includes dosas, idlis and uttapams (a kind of crepe, a steamed preparation and a kind of pancake with toppings respectively) and which my children love. Also since one major staple food is rice for us (especially true for Bengalis like for me from the eastern part of India), I started giving a lot of snacks made out of rice for her school lunches and the like.

Variety is the spice of life

True to my nature, I did some more research and found out gluten free recipes through some amazing blogs and websites like www.glutenfreeconfessions.com and glutenfreegoddess.blogspot.in (the first one is my favourite one). They helped me get started on a journey which was different from any other. I learned to appreciate how difficult it is for people who are on restricted diets. I also made sure that for most parts, my whole family followed the same diet as my daughter. I also figured out ready mix gluten free products which were available in India and how to get them if they were not. This opened up a lot more options for us which were also tastier and convenient as a whole. I got bread, pancakes and other flour mixes from Orgran, Pamela’s products and Bob’s Red Mill, Schar from various places. Orgran as a brand was the only one readily available in Mumbai at that time. ( There are of course many more such brands available world wide to cater to a vast segment but I have not used any of those other brands.) But thankfully things have changed for the better in the last year and a lot more products are now available in India both offline and online. I am listing some of the products and their availability in our country-

  • Orgran Gluten free products – Foodhall at Phoenix Mills, Godrej Natures Basket in Mumbai
  • Bob’s Red Mill Natural Foods– Foodhall at Phoenix Mills
  • Bob’s Red Mill, Schar and Orgran products are also available on websites like http://www.healthyworld.in/,  http://www.gourmetco.in/ and http://www.foodesto.com/ which deliver all over India
  • Pamela’s Products are not available in India, I had to arrange for them from US

orgran

schar

I have used all of the above mentioned products apart Bob’s Red Mill. My favourite was the bread mix from Pamela’s Product which turned out quite close to a regular bread and almost as tasty. For someone like me who has never had to bake bread in her life, the end result was pretty decent as compared to when I was trying to make the same from scratch. However, I did manage to bake bread, cake and the likes from scratch using gluten free ingredients with mixed results. I would like to also list the ingredients that are available incase you are willing to try your hand at this as well-

  • Zero G – An Indian brand which has products like potato starch, corn starch ( not corn flour), GF atta and maida mix for rotis etc and other basic GF grains like sorghum etc. It is available in large grocery stores and online in the websites mentioned earlier

zero g

  • Conscious Foods– another brand which has all kids of organic GF grains and flours like bajra, ragi, jowar etc
  • Bob’s Red Mill– Guar gum and Xanthan gum powder, both of which are essential to emulate the binding property of gluten in regular foods

A child’s dilemma

However, the most difficult part was to ask a 7-year-old to stop having what she had been used to eating so far and it was worse when she had to attend birthday parties and other social events. I had to prepare her mentally and then send some homemade cakes and even other foods so that she could eat something at the birthday parties. In most cases, I spoke to the hostess and asked them to have a couple of options for Aiyana if possible (and even had to refrain from sending her to a few of them).  Also in India, since these kinds of allergies are uncommon, there are hardly any options in terms of restaurant foods, bakeries and at social events (apart from the South Indian variety). It was a difficult time, but she knew that she was not supposed to eat a wide range of food and she did refrain from eating them. I started baking a lot more at home and even managed to make, cupcakes, muffins etc for her with the help of some of baking mixes which I sourced. Luckily for a mother like me, there are a lot of like-minded people in the world who have shared their gluten free recipes and other ideas which really helped us to adjust to this challenging diet.

kites

And finally, a kite rises highest against the wind, not with it

And so it is with my daughter. While I would certainly not wish for her or anyone else to go through these challenges which seem to cross her path ever so often, most of the times we do not have a choice but to face them head on. While my daughter has been put back on a regular diet from June this year, the 11 months or so when she had to follow this diet was a difficult time for her since it added to the challenges she faced already due to her severe eczema.

But I can already see the strength in her which helps her to lead as normal a life as possible and her will power which has increased by leaps and bounds in the past year or so.

I know now the she has the strength to not only rise against the wind but to soar to dizzying heights …

When the going (eczema) gets tough…..(part 1)

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IMG_0414

Aiyana and Shaunak in Goa

After Aiyana’s (and our) experience with Erythroderma in September 2012 we decided to take a much needed vacation. We ( Sudip and I, my mother and the kids) went for a one week holiday to Goa during the children’s Diwali break in November 2012. Goa is a small state in India on the Western coastline known as the Konkan region and is famed for its silvery beaches and is visited by tourists from all over the world. While we had a good time overall, her skin condition was just kept under control with oral steroids and immunosuppressants. Due to this reason, as a family we had decided to keep her away and stay away from the sea water and the swimming pool (the chlorine in the water tends to irritate sensitive skin).

Also, since Aiyana had been kept on a gluten free diet after her Ige ( blood allergy test) test had come positive to wheat allergen, it did pose some challenges as far as the food was concerned.  In order to manage her dietary restrictions, I had figured out the alternative food choices and some good gluten free products like Orgran and Bob’s Mill which are available in Mumbai (I wil be writing more on this in a separate post) . The hotel that we were staying in were also extremely helpful in catering to our special dietary needs and used to make us special gluten free parathas/rotis etc from the mix that I had taken with me. Overall I think we managed pretty well considering that in India dietary needs like gluten free/nut free/diabetic/allergy specific diets are not usually catered to in most places yet due to various reasons. As far as gluten allergy (foods containing gluten includes wheat or atta, maida, barley, malt, semolina or sooji) is concerned, it is quite uncommon in India and most people are not well versed with the specifics of this diet.

Under the influence of oral steroids (which we had started tapering) and after introducing an immunosuppressant (Cyclosporin)in September, her skin was much better overall. Itching however never completely went away.  The drug dosage was increased very slowly to the optimum level (depending on her weight) since the doctors did not want to take a chance with any adverse  reaction. With a powerful drug like Cyclosporin, it is imperative to monitor the effects ( increased blood pressure and reduced kidney function amongst others) of the drug on a regular basis. Hence, weekly blood tests were carried out initially after which it was carried out fortnightly and then monthly towards the end. I don’t know which was more traumatic for Aiyana, the skin condition or the blood tests.. This constant monitoring which is required made it difficult for Aiyana to go through with this treatment, but there was no option as such.

After consulting a Mumbai based senior pediatric dermatologist, we also started narrow band UV (ultra violet) treatment or phototherapy for her in November 2012. It is a type of treatment for adults and children with moderate to severe atopic dermatitis (also used for psoriasis) who have not responded well to other eczema treatments. Exposing the skin to UV light suppresses overactive skin immune system cells that cause inflammation and hence can control itching and rashes. The benefits of using phototherapy are that these therapies often work when other eczema treatments have not, and if done properly in a controlled environment and under supervision they can actually have fewer side effects than many of the prescription medicines used for eczema. In Aiyana’s case, her doctors wanted to eventually stop all oral medications and control her eczema with the help of narrow band UV therapy only.

Narrow band UV booth used for phototherapy

Narrow band UV booth used for phototherapy

So, while Phototherapy treatment continued, oral steroids was stopped completely in December 2012 and Cyclosporin (immunosuppressant) was stopped in February 2013. Her skin was overall in a good condition till the time that these medications were being given to her. Phototherapy treatment,  which had been started earlier was then continued as the solo treatment for her till April 2013. Phototherapy as a treatment did not prove to be very effective for Aiyana and her skin condition started relapsing  once again in April and within a few days became extremely dry, scaly and itchy. No amount of topical applications and moisturizers helped to control the same and Aiyana had to be once again put on oral steroids from mid April to stop it from deteriorating any further.

The good thing was that we had already planned for and arranged a trip end of April to meet a well known pediatric dermatologist in Great Ormond Street Hospital for Children and a pediatric allergy specialist in London. We came back to India and started her new medication at the end of May 2013 (I will write about our experience in Part 2 of  this post ; a lot happened after we came back and it might be an important lesson for parents using immunosuppressant for their child ) .While the results were not exactly what we had hoped for it did clear up some doubts as far as her allergies were concerned. The pediatric allergy specialist did a much more accurate (and painless) scratch test and patch test for her allergies and we were then able to include most of the foods back in her diet barring tree nuts (walnuts, hazelnut, peanut etc).

However, things were to become much worse for us before we got it back under control. There are so many things I wish I could have done differently for her if only I had known what was about to happen. But that is only wishful thinking on my part since it is only in hindsight that we have the perfect vision!

But what I do know is that we all do what we can for our children and that I will never give up finding the best possible treatments and course of action for my daughter. She is such a brave little girl who needs all my love, strength and support to see her through this difficult phase in life.