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Trying to find out if my son has celiac

EKhas2017

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EKhas2017 Newbie
EKhas2017
Posted

Hi I'm trying to get my son diagnosed I'm not sure if it is celiac but wondering if someone could help or offer advice - my son is 2 ever since he was eating solid food he has small spots all over his body no creams have worked - he gets very bloated - he struggles to poo crying and moaning a lot until he does then smells so bad - and also gets bad night terrors every night. 

I went gluten free for him a few months ago and all of his problems pretty much went away straight away skin is still taking time to completely clear. I told the doctor who wants to do a blood test which means eating gluten for 6 weeks then it may not be that. I'm not sure whether to get the test or just carry on as we are?? I don't want to make him gluten free if it's not that especially as the food is so expensive I find. I also have another son who has none of these problems and I just don't know wat to think anymore. 

Thank u 

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Ennis-TX Grand Master
Ennis-TX
Posted

The Blood test would be worth doing, if you get tested and he comes back positive it will not only provide peace of mind, but also help get him on support programs in school where they will help accommodate his food issues as a disability. Also I might suggest having your other son tested. Celiac manifest itself differently in everyone some are silent and will show no outward symptoms.  It is your choice in the end. If you just recently changed over it might bee a good time to do it now.   Also with celiac disease CC can be a issue, changing the entire house over to all gluten free would make life much simpler and safer for your child. There are many options now days and it is much cheaper then it used to be to live a gluten free life, while it is still expensive.

TexasJen Collaborator
TexasJen
Posted

I agree with a gluten challenge and labs.  Remember, your son is home now and you control everything he eats. but in a couple of years, he enter the world of birthday parties with pizza and cake. A gluten free diet for celiac is all the time and can be very isolating for everyone - but especially children who don't want to be different. It would be nice to confirm the disease so that you can make sure you have the right treatment plan.

Victoria1234 Experienced
Victoria1234
Posted

I agree. You will need the diagnosis for a 504 plan in school. And then college. Things seem so simple now, but they are on the brink of being complicated for him.

by the way, we hardly buy anything that is on the aisle for gluten-free, thus saving a ton of money. We make our own food mostly. Basically the things we buy marked gluten-free are pasta and the very occasional baked good. But I've learned to eat mostly Whole Foods and my husband cooks mainly ethnic dishes that are naturally gluten-free. 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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