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I Am As Confused As The Doctors? Am I celiac disease?

mcoop911

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mcoop911 Newbie
mcoop911
Posted

I was told in late October of 2006 that I have Celiac Disease. This was by a colo-rectal specialist saying this based on my 3 year history of symptoms and 2 hospitalizations (and low vitamin D). It was recommended at that point to go gluten-free which I did. Two weeks later his nurse called to say my blood work was "positive" and that at some point I should get a confirming EGD w/ biopsy - he doesn't do those type biopsies; he is strictly lower GI. I got a referral to a local gastroenterologist who reviewed all my accompanying labs and performed the EGD w/ biopsy the first week of December. My biopsy was "normal" but my response to the gluten-free diet has been nothing short of miraculous.

In follow up appointments to all the above physicians, one says I'm celiac disease and the other says not celiac disease. Other than my opinion that I should never go back to WBRO or any gluten containing product what should be my next step (especially for my 3 kids, one of which is symptomatic)?

Additionally, I found out the "positive lab work" was really a suppressed IgA. Should this blood work be repeated? It was sent to Mayo Clinic.

Thanks out there for any advice.

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outOfThisWorld Newbie
outOfThisWorld
Posted

Sorry I don't have any advice at this time as I am trying to work out if I have gluten/thyroid issues. However, I am interested to hear what symptoms you were suffering from that were miraculously improved by going gluten-free?

mamaw Community Regular
mamaw
Posted

There are alot of people who dx themselves no matter what the medical outcome my be. In other words if you feel so much better on the diet , stay on the diet. It will not hurt you. Some people want that doctor confirmation & seal of approval. But I think if your body feels better who cares what the doctor says, you know how you feel....Also you could do the DNA testing to see if you carry the genes....

If you had the endo & colonoscopy done while you were off of gluten that will alter your results...and not everyone has intestional damage... Mine was caught before I caused damage which is a good thing.

In the end the choice is yours to decide ..Doctors in the US need to catch up in regards to celiac.

best of luck

mamaw

Nancym Enthusiast
Nancym
Posted

You're falling into a gray area lots of us do. Many doctors will diagnos celiac on the basis of blood work alone or positive response to the diet. Were you gluten-free before your biopsy? If so, how long? That could skew your results too.

Anyway, many of us realize that the testing is obviously inadequate and are choosing to follow the diet anyway, despite our tests results, based upon positive experiences with the diet.

You don't need your doctor's permission to make dietary changes.

happygirl Collaborator
happygirl
Posted

There are many on this board who have unclear diagnoses because of poor medical advice/treatment by doctors, as well as many who have positive bloodwork/no biopsy, etc etc. Every iteration possible----you can find on this board.

I had some positive bloodwork, but my biopsy was taken while gluten free and was negative. Many doctors have told me I "don't" have it and that I need to know if I have it or not. I know that gluten is a problem for me....even my idiot GI who performed the biopsy on me after telling me to start the diet saw the change in my health and agreed that gluten was a serious problem for me. I think that my family, friends, co-workers, etc would describe going gluten free as miraculous for me as well!!!! It gave me my life back. I have not been willing to do a "gluten challenge" for months to see if I have villous damage-for me it is not worth it. If you have more testing done, you will need to be back on gluten for awhile for the results to be as accurate as possible.

Either way-if you do better on a gluten free diet, you may have Celiac, or you may have non-Celiac gluten intolerance/sensitivity that will not show up on a biopsy, etc. There are many NCs on here....the treatment is the same. We don't really differentiate on here---we are here to support those on a gluten free diet.

Good luck!

Laura

mcoop911 Newbie
mcoop911
Posted
  • Author
There are many on this board who have unclear diagnoses because of poor medical advice/treatment by doctors, as well as many who have positive bloodwork/no biopsy, etc etc. Every iteration possible----you can find on this board.

I had some positive bloodwork, but my biopsy was taken while gluten free and was negative. Many doctors have told me I "don't" have it and that I need to know if I have it or not. I know that gluten is a problem for me....even my idiot GI who performed the biopsy on me after telling me to start the diet saw the change in my health and agreed that gluten was a serious problem for me. I think that my family, friends, co-workers, etc would describe going gluten free as miraculous for me as well!!!! It gave me my life back. I have not been willing to do a "gluten challenge" for months to see if I have villous damage-for me it is not worth it. If you have more testing done, you will need to be back on gluten for awhile for the results to be as accurate as possible.

Either way-if you do better on a gluten free diet, you may have Celiac, or you may have non-Celiac gluten intolerance/sensitivity that will not show up on a biopsy, etc. There are many NCs on here....the treatment is the same. We don't really differentiate on here---we are here to support those on a gluten free diet.

Good luck!

Laura

Thanks for your advice about Dr. Peter Green's book. I bought it last month and passed it along to another Celiac friend. I was gluten-free for about 4-6 weeks before the biopsy. Is that short length of time sufficient to produce a false negative? My GI guy thought that I would still show villious damage due to the fact I was symptomatic for over 3 years. (He is an idiot as well, didn't do a colonsocopy- said I'd have to be gluten-free for that biopsy?).

Thanks.

mcoop911 Newbie
mcoop911
Posted
  • Author
Sorry I don't have any advice at this time as I am trying to work out if I have gluten/thyroid issues. However, I am interested to hear what symptoms you were suffering from that were miraculously improved by going gluten-free?

You asked about symptoms? For over threee years (including two hospitalizations of one week each) I had truly disabling diarrhea and horrible fatigue. I gave up a very solid career of over 18 years due to this illness.

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happygirl Collaborator
happygirl
Posted

You can be full force eating 100% gluten and your biopsy can still be negative. celiac disease is a patchy disease....so if they don't sample enough places, they could easily miss where the damage is. So even under ideal circumstances (eating gluten, and multiple biopsies in multiple locations), the biopsies might miss the damage. Add going gluten free, plus---did he take multiple biopsies in multiple locations?---and that can decrease even further the accuracy of the biopsy. The biopsy can rule Celiac IN but unless the "whole" 22 ft of small intestine is biopsied ;), it really can't rule it out.

Like mentioned above, I was gluten-free for 5 weeks, and he only took one biopsy. So for me and most knowledgable Celiac doctors, it is hard to say that it was a conclusive test by ANY means. So yes, going gluten free can definitely impact it. Some people heal quicker than others.

That all being said.....if you have non-Celiac gluten intolerance, you won't have villous atrophy....but will still react to gluten.

Happy that you enjoyed the book---it really is a great reference for what they know about Celiac. Non Celiac gluten intolerance still is overlooked, but hey, the treatment is the same---so I'll be happy for what I can get :).

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