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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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    • trents
      how much gluten do I need to eat before blood tests?

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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