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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 Contributor
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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      By Alibu · Posted

      MY BIOPSY WAS NEGATIVE!!!  HOW?? Obviously I'm thrilled it was negative, but I'm so confused now.  
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    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

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    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
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