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Parent Of Celiac Child

En4cer

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En4cer Newbie
En4cer
Posted

Hey everyone. First I just wanted to say that this is an amazing site and has helped me and my wife out tremendously. Now, here is my situation.

First of all, I have a 7 year old son that has been diagnosed with celiac for three years. He has been on the gluten free diet since the day of his biopsy and has done amazing ever since. The doctor told me and my wife that the disease was genetic and that we may want to consider getting tested ourselves. But since we didn't seem to have any issue with gluten we never did.

A few months ago, I had to have an appendectomy due to appendicitis. The surgery went without a hitch. A few weeks after that, I started noticing that I would get horribly bloated and have diarrea everytime I ate. It got to the point where I would be taking gas-x and pepto all the time without any relief. I went back to my doctor to verify that it had nothing to do with the surgery and he was confident that my issues were purely a digestive thing. Now, since my son has celiac, I kinda bounce back and forth between gluten and gluten-free meals. I might eat a burger at lunch but have a nice gluten-free meal at home with my family (I've been doing this for a few years now). But no matter how small the meal was, I noticed anything with bread made me feel like my stomach was going to explode. My wife finally made me go to the doctor to get tested for celiac. And to our surprise it came back negative. I told the doc that there is obviously something going on and I want a referral to a GI, which he did for me and I'm waiting on the appointment.

So what do you guys think about my situation? I know I don

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Roda Rising Star
Roda
Posted

The appendicitis or surgery could have triggered it. Also something to consider is that since you eat alot of gluten free at home, you might not be eating enough gluten to trigger the antibody reaction. It definately is worth the consult to the gi. You could choose to do an EGD with small bowel biopsy. It is not uncommon for people to have negative blood work but be positive on biopsy. However, there is a risk of false negative on the biopsy also. Damage can be patchy or the doc may not have taken enough samples. If you go that route have them take at least 6 samples in the small bowel all from different locations. Since you notice you feel better, either way you could give the diet a good three month trial then challenge with gluten and see how you react. That is diagnostic in and of itself. Hope you feel better soon.

En4cer Newbie
En4cer
Posted
  • Author

Yes, I've heard that stress, illness, surgery etc. could trigger it if you are a carrier. That's why my wife was pressing so hard for me to go to the doc. We believe our son's triggered after he had a horrific virus as a toddler. After my test, I learned that you need to be on a steady gluten diet for several months in order for the test to be accurate...so I may have messed that up. I'm all for going completely gluten-free on my own...the only problem is I'm in the military, and as anyone in the military knows if its not in your medical record it don't exist. It's hard to explain to your leadership that eating that MRE or sandwich they throw at you makes you sick when you don't have something to back it up. Anyway...I'll wait for the GI visit and follow up here when I get some news.

Mari Enthusiast
Mari
Posted

Some while ago another person in the military was diagnosed with celiac disease. It was arranged that she would be assigned to units where gluten-free foods were available. Maybe you can find her messages.

salexander421 Enthusiast
salexander421
Posted

It sounds like you definitely need a diagnosis. I would ask your GI about going back on a full gluten diet for 3 months and then getting the celiac test redone.

T.H. Community Regular
T.H.
Posted

I would mention the positive effects of the diet and see if the doctor would be willing to monitor you on a gluten free diet with food journal and give a diagnosis based on that. Or perhaps he/she could test other indications of the disease. This article may be of some use in trying to determine that:

Open Original Shared Link

However, But if you do, from what I understand, you will get a medical discharge as a result.

En4cer Newbie
En4cer
Posted
  • Author

Thanks for the advice and info. I am a bit worried on how the military will take to somthing like this. At least where I'm at, the smaller medical clinic staff didn't seem to be very familiar with gluten/wheat intolerance and tried to disregard it until I insisted on a GI referal. Luckily, I'll be going to a major military hospital for the consult so we'll see how it goes. I also have to take my son to his annual pediatric GI visit this month so I'll probably ask her a few questions about myself while I'm there.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      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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