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Am I Likely To Be Celiac?

icm

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icm Apprentice
icm
Posted

When I was 8 years old my mom realized that something was wrong with both of us.

I felt well most of the time but occasionally I would get severe stomach cramps. When I was really young this was only once every six months but as I got older and by the time I was 8 the frequency was once every few weeks. Whenever this happened I would be doubled over in pain for 3-4 hours before passing out. An hour or two after that I would wake up (often late in the day) and be fine again.

Mother knew this wasn't normal so we did some testing (when I was 8, in 1999 after I failed to gain a pound for a whole year along with a stool color that was turning WHITE???!!!)

We proceeded to do some blood work for gluten after hearing that some children like myself who have autism are possibly more likely to be celiac.

Blood results:

AGA gliadin IgG: borderline

EMA: negative

Due to a confusing result at the time, our doctor decided that rather than put me through the 'child-abusive' biopsy process, we would do a fecal fat stool test where I ate a diet of rich and heavy foods along with staying on gluten foods.

That 72 hour fecal fat test came back POSITIVE at the end of '99. The doctor said to not bother wasting our time and money with a gastroenterologist and to give the gluten-free diet a good strict try.

I gained 3 kilograms in the first 3 weeks of being gluten free! The doc wrote a letter stating that I would require a gluten-free diet.

Mom got screened for the celiac gene about 5 years ago and has hla DQ 2 & 8. She had normal blood tests back in 99 altogether.

Now I have some questions:

Do you think that, based on the above information I have provided, that I am celiac? Or am I more likely gluten sensitive?

Also, tell me what you think is more sensitive: the biopsy or the older 72hr fecal fat test? If I have elevated fecal fat is it sufficient to say that my biopsy would have been abnormal?

Let me know your thoughts on this based on the above. I'd like to have a better idea of where I likely lie on the gluten intolerance spectrum.

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tom Contributor
tom
Posted

Sorry to say I'm not sure the celiac vs intolerance likelihood question is answerable in your situation. :(

A properly done biopsy w/ enough samples could have provided sufficient evidence to dx celiac. It's a little surprising to see the biopsy called "child-abusive". The endoscopy often sounds worrisome even to adults then afterwards ppl say it was a breeze.

Besides my own niece at 6 or 7 yo, I think a lot of kids get endoscopy/biopsy w/out a problem.

icm Apprentice
icm
Posted
  • Author

Sorry to say I'm not sure the celiac vs intolerance likelihood question is answerable in your situation. :(

A properly done biopsy w/ enough samples could have provided sufficient evidence to dx celiac. It's a little surprising to see the biopsy called "child-abusive". The endoscopy often sounds worrisome even to adults then afterwards ppl say it was a breeze.

Besides my own niece at 6 or 7 yo, I think a lot of kids get endoscopy/biopsy w/out a problem.

My mother thought the biopsy/gastroscopy was a joke because a lady in the local area who was quite well known in the community was convinced she had celiac disease. She did the celiac blood tests and they came back completely negative.

She then had her first endoscopy. It was completely normal (Marsh 0). She insisted that the specialists were wrong and insisted on a repeat gastroscopy.

Her second one was completely normal. We would have given up, but she was so sure she had it that was willing to make her doctor really annoyed with her and ask for a third one.

The third one showed sub-total villous atrophy (Marsh IIIc).

She immediately did a gluten free trial and felt MUCH better despite the inconsistent biopsy readings. She told my mother to not put me through the procedure and do the fecal fat test instead (apparently more people show up with a positive reading on this than on the endoscopy) and to try a gluten free diet even in the event of a normal score. The doctor we had at the time was quite knowledgeable and (independently of her advice) also told us that going to a gastroenterologist was unnecessary.

MitziG Enthusiast
MitziG
Posted

It is impossible to say, because you didn't have thorough testing done. My gut would tell me you have Celiac Disease, for what that is worth.

icm Apprentice
icm
Posted
  • Author

Celiac apparently isn't any more common with autism than with the general population though. I have autism and what is more common from what I've heard is gluten (and sometimes dairy, soy, etc.) sensitivity.

kareng Grand Master
kareng
Posted

I don't think I have seen any of the Celiac Centers recommend fecal fat testing to diagnose Celiac.

Looks like you have done better without gluten, so you should probably stay gluten-free.

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