There is hope…a personal story!


Reposting a previous blog post by popular demand. This chronicles my journey since the twinkle in my eye and the mirth in my smile was born 🙂

As some of you may have noticed, I have not blogged regularly in the past month. The past few weeks have been action-packed…my 4 year old son, Arjun started pre-K which was an exercise in ensuring that he, his teacher and the other school staff who came in contact with him were aware of his multiple food allergies. Then we did his annual blood work to see if he had overcome any allergies. But, I am getting ahead of myself here so, let me start at the beginning… 

IMG_2951
My pride and joy, Arjun

When Arjun was just 4 months old, his whole body broke out into hives and his breathing  became laboured as he was ingesting less than 2 ounces of Enfamil (a dairy based baby formula). It was one of the most frightening and sad moments of my life. Arjun came into our lives after 3 miscarriages.  Seeing him squirm in pain, his lips swollen and his tiny hands reaching out to unsuccessfully relieve himself from the itchy hives was heart-rending. I did not need to be a doctor to realize that he was having an allergic reaction. Subsequent blood work showed that he was allergic to all the top 8 foods that cause a majority of the food allergies. Since he was so small, they did not test him for too many other foods. The bottom-line was…I could not give him anything new without the doc’s permission and even then it had to be introduced very slowly. The doctor told me to continue nursing him exclusively till he was at least 6 months old because studies have shown that nursing has a positive impact on how quickly children outgrow food allergies. Here the doc and I made our first big mistake! He did not tell me and I did not research because of the intense fear that had gripped me – I did not exclude the food items that Arjun was allergic to from my own diet.  So, Arjun continued getting exposed to the very food items that he was allergic to in tiny amounts…an absolute no-no!

 

Lessons learnt…

…never expect that the doctor will remember to tell you everything even though that is what he makes the big bucks for. 

…irrespective of how scary a situation may be,  never be too scared to do your own research when dealing with medical situations. 

At 6 months, all I dared give him was Beechnut rice cereal (www.beechnut.com) because it was the only one with no trace of allergens – not even the omnipresent soy lecithin. With a prayer on my lip and an epipen handy, I introduced a fruit or a vegetable every 6-8 weeks. At age 1 – he was not even 20 lbs despite his healthy birth weight. Friends and family tried to encourage me by saying that their kids were thin too but I knew that he needed a bigger variety of foods in his diet. However, his allergist at that point of time had scant knowledge about alternatives and was unable to help me. That is when I made my second mistake – I went by the doctor’s academic credentials alone and did not see if my son’s specific needs were being met. The only saving grace during those early months of struggle was having been raised in an Indian household; I knew how to prepare  a few tasty dishes that are rice-based. However, rice in itself is not very nutritious and Infant Neocate, a hypoallergenic baby formula (www.Neocate.com) continued to be his only source of nutrition despite its yucky flavor and taste.  Added to the problem…I have been a strict vegetarian all my life and had no clue about cooking meat nor did I even want my son to eat meat. Since he had tested positive to all beans  and lentils ( good sources of vegetable protein), I was left with no choice but to slowly introduce chicken, turkey, beef etc. to him. 4 years down the line – I still don’t cook meat at home. Friends send chicken dishes for Arjun once in a while and I have figured out a few frozen products that he can eat. However – I had to carefully manage the fiber in his diet. His hypoallergenic formula, Neocate is extremely constipating and so are all the meats and rice. My then allergist had a limited knowledge of vegetarian protein sources which would have higher fiber content. This struggle continued till Arjun was 1.5 years old.

Finally Arjun caught a break in the form of a very experienced and understanding allergist. Under his care, Arjun started eating a variety of lentils. Lentils are a wonderful way of including proteins, carbs and fiber in the diet. A common misconception in the US is that lentils are of just one type when in reality there is a wide variety of lentils. Hence, when the allergy blood work comes back positive for lentils a whole class of nutritious foods is eliminated. Thankfully, Arjun’s allergist knew better and by the time Arjun was 2.5 years old,  he was eating 3  of the most common type of lentils. In Arjun’s 3rd year,  the allergist slowly added the various beans – black beans, kidney beans, pinto beans, white beans, lima beans etc. Now a good source of vegetable protein was no longer a challenge for me.

All these additions were very encouraging but did not help me much once we stepped out of the house. American food culture is extremely wheat based – even a seemingly harmless french fry often has wheat in it – go figure!!! Also, it is very difficult replicating the texture of wheat hence simple dishes like waffles, pancakes, cakes and bread was something that Arjun could initially look at other people enjoy and wonder! I was able to make my own flour blends to make dishes which need wheat using alternatives like buckwheat, white and brown rice flour, matpe bean flour, corn flour, sorghum flour, teff flour etc.  Some companies like Cravings Place (http://www.thecravingsplace.com) have excellent wheat free readymade mixes. 

Finally after almost 4 looooong years…Arjun’s annual blood work showed that his allergy numbers for wheat had dropped significantly and he was ready for a challenge. Armed with a packet of Ritz, a box of Graham crackers, a slice of wheat bread and a couple of homemade wheat flour tortillas, we landed in the allergist’s office for the challenge early in the morning. Arjun is well-trained to ask whether the food offered to him has any allergens that it took the doctor a while to convince him that he could have a bite of bread or cracker which made me cry and laugh at the same time.  Arjun seemed to be taking wheat well and the allergist seemed as relieved as us. The doc asked us to slowly increase the amount of wheat in Arjun’s diet over the period of a week. Now, Arjun has been eating a diet inclusive of wheat for over a month now. It seems like the world has opened up for him. Even he cannot believe the number of cereals and cookies he can have. He also believes me when I tell him that he will outgrow most of his allergies as he grows up 🙂 For the first time in my life, I realized how much joy a single food item can bring in a person’s life.

Since then, I wrote a follow up post titled ‘And, the journey continues…’ on his encouraging progress

We still have a very long way to go but we have also overcome quite a few hurdles. Hear up, all food allergy-sufferers…’there is hope’ that one day you will overcome at least some of your allergies and will be able to appreciate food far more than those without allergies can ever imagine 🙂

16 thoughts on “There is hope…a personal story!

    1. Hi Karen,

      Thank you for visiting my blog. It is so encouraging to know that people do outgrow their allergies. I loved your site – very informative for moms like me!

      Best wishes,
      Anu

  1. Hi,

    Its good to see there are people out there who have ACTUALLY lived through most of this. My son is 6 years old. He has recently been diagnosed with being allergic to wheat, gluten, nuts, fish, pollen, milk, egg whites and soya.

    To be totally honest I have spent the past 2 weeks since his diagnosis surfing the internet to try find answers as to “what to feed my child”

    I need to find recipes of foods that are easy to make and fun. I work 5 days a week so I dont get to spend alot of time making sure my son cannot get hold of his friends food or sandwiches at school, thus I need to be able to make his lunch box interesting enough so that he wouldnt want to have what the other kids are having but be glad he has his “cool” lunch box.

    Any ideas of where I could go look or what to give him would be greatly appreciated as at this stage I have him eating fresh salad and steak practically every say.

    Kind regards,

    Melani

  2. Could you tell me more about the lentils? My son has a peanut and chickpea allergy and i have been afraid to give him lentils. I know there are different kinds, but i didn’t realize there might be some oases allergenic than others.

    Thank you!

    1. Hi Cheryl – my latest post is about different kinds of pulses apart from lentils which is likely to be allergy friendly. Hope it helps!

  3. Hi Cheryl – my son is allergic to peanuts and chickpeas too. I will write a detailed post for you and many others who face a similar predicament tomorrow. To give you a basic idea…some common types of lentils which are likely to be not allergenic are – mung beans, green gram, black gram (matpe beans) and red gram. It would be great if you can get input from an allergist who has an understanding of Indian foods because lentils are widely used in Indian cuisine as the main source of proteins and fiber.

  4. I remember when I was pregnant with my second child, I eliminated all the food allergens from my diet that my first child was allergic to…not because a doctor told me…they wouldn’t give me a definite answer…as a result I just took it upon myself not to and continued while I was breastfeeding. I am glad I did as when I took a bit of milk in my tea, my son broke out in eczema on his forehead just like his older brother did when he had dairy in his diet.
    Over the years, I have learned to become my own advocate…learned to question, research and believe in my ‘gut instincts’. Discoveriing blogs like yours also helps…I wish there was such a thing 15 years ago! Thanks for sharing! Susan H. @ the food allergy chronicles

    1. I am a nutritionist by education, Susan but it still took me some time to realise that the unusual fussiness displayed by my little one was not because he was a whiny kid by nature. It was mainly due to the intense discomfort he felt breast feeding if I had eaten the wrong foods 😦 As you rightly said we have to be our own advocates, not hesitate and pay more attention to gut feel 🙂

  5. This is SO encouraging!

    My 4-month old son has not been to the allergist yet, but he has reacted adversely to dairy, soy, peanuts, sunflower seeds, pineapple, sweet potato, wheat, corn, rice, raspberry, and… more things I can’t even think of right now. At this point he’s still exclusively breastfed, and all of these foods are out of my diet, and 1) I’m hungry 2) I worry about what on earth I’m going to feed him when he starts eating solids. So far this blog has already helped me, and seeing Arjun’s progress gives me hope!

    Thank you so much for sharing!

    1. Sarita – your comment was like a deja vu moment for me as I went back to the times when Arjun was first diagnosed with allergies at 4 months. But, now I can confidently say – you will be amazed with the huge variety that he will be able to eat even if it is not the regular foods we are all used to. In fact – it will probably be far healthier 🙂 I attribute ‘food allergies’ for ensuring that my son is a very healthy eater !

  6. Anu, I stumbled across your blog in hope to find a Indian mom struggling with allergies, only so that a vegetarian like me can get some help. I’m based in Columbus, Ohio and unfortunately(or fortunately for that matter) the only Indian mom in the big friend circle who is dealing with all this. Let me say you have done a great job with this Blog, I am very impressed 🙂 thanks for the awesome recipes, great information and encouraging words. I really hope Arjun does great, my best wishes, BTW my son’s name is Parth which is a synonym for Arjun 🙂
    Purvi

    1. Hi Purvi,
      Apologies for the delayed response. Thank you so much for visiting Allergy Foodie and your encouraging words. The incidence of food allergies is the amongst the highest in the Asian community but unfortunately very few resources available. Sincerely hope my small contribution makes at least a little difference.

  7. Hi. Anu
    I came across your blog searching for food allergy mums and I am happy to note that other Indian mums experience allergies too. My dd is 21 m.o is barely making the 20 lb mark because of severe allergies. She is allergic to the top 8 as well as bananas, and maybe something in all fruit (keeps getting rashes by mouth now) beef, possibly lamb and maybe sunflower seeds or potatoes. Getting her further tested next week. Your story really offers me hope cos she is currently living off Neocate, chicken, carrots and rice:( Thanks for sharing:)

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