Toddler recently diagnosed

[Penster]

Hi everyone,

I'm hoping to get some advice and help. My almost 3 year old was diagnosed with Celiac disease about a month ago and we have been following a strict gluten free and lactose free diet ever since. I've also been keeping a food diary and we are getting advice from a nutrionalist. I still find all the rules a bit confusing (cross contamination in the factory and gluten-free labelled foods that may still contain a small amount) so I feed him a really basic diet and the food diary has helped me establish some safe foods that I can stick to on a regular basis. His blood work showed he was highly intolerant so I am also really careful with cross contamination and with us being home all the time I have full control of what he is getting.

My problem is that we still get flare ups, the nutrionalist says that it's normal during the first year as it takes time for the small intestine to heal. I wondered what your experience is with that? My mama instinct is telling me that something is still upsetting him. After a couple of flare ups we have eliminated anything even mildly spicy and that helped but the recent flare ups have been after eating chicken. I wondered if anyone else has experienced that before, I wouldn't have thought that chicken would upset him but I'm not sure it's a coincidence.

Please let me know any tips you have regarding getting through the first period while the gut is recovering, I'm still very new to all this but me and my family have a long road ahead and I want to know as much as possible. Also would love to hear from any other parents who have gone through this with young children. 

Thanks everyone and hope you are all staying safe.

Regards

Penny

[Scott Adams]

For many celiacs these flare ups occur less due to things like spices than what might be additional, sometimes temporary, food intolerance. For example symptoms might be caused by things like dairy, soy, corn, eggs, and other common allergens. Once the gut heals the offending item(s) can often be added back, but not always.

[Penster]

Thank you so much for a quick reply, how will I know when the guy has healed? Or that these flare ups arent causing more damage? I guess I need to let the pediatrician and nutrionalist guide me on that? I'll need to investigate other allergens and see what we can avoid, he was diagnosed with an egg allergy about a year ago so he already doesnt eat eggs. Poor boy. 

[Scott Adams]

It can be difficult, but the best way would be to keep a food diary. Eliminate them for a few weeks to months, then slowly add them back one at a time. 

Note that I had issues with chicken eggs, but not with duck eggs, which can often be found in farmer's markets or Asian markets. Likewise, sheep's milk products may still work, but not cow's milk. 

Definitely talk with the pediatrician if you are able to. 

[psig]

Five of our six adult kids or their spouses are Celiac, as are seven of eight grandchildren, all under age nine, so it's a way of life for us all.  For starters, make sure yours is a 100% gluten-free household to avoid cross-contamination. A good resource for a wide variety of foods to eat and foods to avoid to heal the gut is Dr. Sarah Ballantyne's The Paleo Approach: Autoimmune Protocol, aka "The Paleo Mom" online.

After 20 years, I find most grains bother me (particularly oats but rice is fine), in addition to casein, soy, and eggs. If cooked thoroughly, I can tolerate both eggs and casein (heat changes the casein molecule).  Good luck!

 

[Beverage]

Are you cooking gluten food in your home at all?  It is almost humanly impossible to not cross contaminate with gluten in the kitchen.  I recommend that your home is completely gluten free.  All pets should be gluten-free also, as they lick you, or their fur, which you touch.  Some people do all the stuff with preparing the Celiac's food on wax paper, etc., but one crumb and it's a bad few months for a Celiac.  Not worth it.   If you are using gluten flour of any kind, that will cross contaminate everything for days as it hangs in the air.  The toaster.  A kiss from someone that just ate gluten.  Also, are you doing any work in your home?  I got really sick from the wall board and plastering we were doing as part of a remodel as it can contain gluten.  Any food other than whole food is suspect, herbs and spices, door handles from gluten eaters touching them, anything with GLUE.  Body products, lotions especially.  I hope you figure it out.  Good luck.

[knitty kitty]

I can't eat chicken either.  Seems a part of the chicken meat molecules sort of resembles a segment of gluten molecules.  "Sorta-resembles-gluten" molecules also occur in casein (dairy protein), corn (maize), yeast and some rice breeds.  (Basmati rice is least likely to elicit a reaction.)  Not everyone reacts to these.  

I can eat Duck and Cornish Game Hens and Turkey.  I don't miss chicken a bit.  Think outside of the (litter) box.

Liver is a nutrient dense food.  (Your baby needs nutrients to heal.)  Start him eating liver young.  "Train up a child in the way he should go..."

My mom told me when I was a little kitten, we were eating "steak."  Years later when my dad plopped in front of me a juicy T-bone steaming hot off his new grill, I cried.  I was so disappointed it wasn't "steak" like I was expecting!!!

Research the Specific Carbohydrate Diet and the Autoimmune Paleo Protocol Diet, proven to promote gastrointestinal healing.  

Cut out Nightshades (potatoes, tomatoes, peppers, and eggplants/aubergine).  They contain alkaloids that promote leaky gut syndrome.  (Sweet potatoes are safe, they are NOT nightshades.)

Cut out the processed gluten free foods. They are NOT enriched with vitamins.  They are empty calories often with additives to enhance flavor and texture such as Xanthan gum and Microbial Transglutaminase, which causes intestinal inflammation.  Both of these additives are excretions (poop) of bacteria grown in giant vats. 

Carbohydrates require thiamine to turn them into energy.  High Caloric Malnutrition results when you don't consume enough thiamine to turn those (unenriched) carbohydrates into energy.

Fresh grapes and dried fruit contain Sulfites which can exacerbate gastrointestinal symptoms (sulfite hypersensitivity is common in Celiacs), so no raisins!

No high fructose corn syrup.  Check your fruit juices!  HFCS has to be processed through the liver just like alcohol and can cause non-alcoholic fatty liver disease and thiamine deficiency.

These are things I've studied in university and researched on my own because my doctors were clueless about celiac disease.   Do discuss these with your doctor and nutritionist.  

Hope this helps!

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