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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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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