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What Are My Other Options?


Brutus

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Brutus Newbie

I'm looking for a little advice. Celiac Disease is on both sides of my family. I have eczema, bloatedness, fatigue, anxiety disorder and depression (on antidepressants), notable foul smelling gas and stools, and am IgA deficient (along with other symptoms). I was blood tested for celiac and it came back negative. I went on a gluten-free diet and most symptoms went away, and I felt much more energized, though could this be a placebo effect?

I don't want to go through with the endoscopy, mainly for financial reasons. Are there other reliable tests besides the blood test? I know my IgA deficiency can throw off the results. Could this be something else besides celiac? I was thinking about Enterolab but have heard mixed reviews, and plus, I'm not sure if my IgA deficiency will throw that test off as well.

Thanks for the help. I'm just a bit frustrated.


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Wolicki Enthusiast

I'm looking for a little advice. Celiac Disease is on both sides of my family. I have eczema, bloatedness, fatigue, anxiety disorder and depression (on antidepressants), notable foul smelling gas and stools, and am IgA deficient (along with other symptoms). I was blood tested for celiac and it came back negative. I went on a gluten-free diet and most symptoms went away, and I felt much more energized, though could this be a placebo effect?

I don't want to go through with the endoscopy, mainly for financial reasons. Are there other reliable tests besides the blood test? I know my IgA deficiency can throw off the results. Could this be something else besides celiac? I was thinking about Enterolab but have heard mixed reviews, and plus, I'm not sure if my IgA deficiency will throw that test off as well.

Thanks for the help. I'm just a bit frustrated.

Many consider a positive dietary response to be a valid test. Why not just do the diet, strictly? Do you need a doctor to verify before you can stick to the diet?

mushroom Proficient

If the diet works for you, Brutus, I would think it is highly unlikely that your symptoms would have any other cause. Of course, if your symptoms continue unabated you should explore further testing. Keep in mind that recovery from gluten has its ups and downs, so do not be discouraged if you have have some small temporary recurrences of symptoms along the way, or variations in bowel habits. These are quite normal in gluten recovery.

Brutus Newbie

Thanks for the responses! I guess I would prefer a dx to make it "official." Also, my family believes that it is all in my head. I guess it is more for them than for me.

I would do a biopsy but financially it is not possible at the moment. I'm intending to go gluten free, and I know that throws off biopsy results -- so I guess that means the biopsy is out.

The only reason I speculated about Enterolab is because you can be gluten free and still do the testing. Plus, compared to the cost of a biopsy, it is relatively cheap. I'm just a bit skeptical about its reliability.

If anyone knows a good doctor in the DC Metro area that is knowledgeable about Celiac Disease, please let me know.

Thanks for the input!

RideAllWays Enthusiast

Your family believes it is all in your head, yet you have Celiac on both sides of your family? That seems odd and not very understanding!

I was "diagnosed" by an allergy doctor, went gluten free for 7 months before my biopsy, so of course it came back negative, so the positive dietary response had to be enough. I do react badly with bits of gluten, so I just assume I am Celiac for sure. Sometimes I doubt it though, it's tough. But I would say if the diet makes you feel better then DO IT!

Lisa Mentor

Thanks for the responses! I guess I would prefer a dx to make it "official." Also, my family believes that it is all in my head. I guess it is more for them than for me.

I would do a biopsy but financially it is not possible at the moment. I'm intending to go gluten free, and I know that throws off biopsy results -- so I guess that means the biopsy is out.

The only reason I speculated about Enterolab is because you can be gluten free and still do the testing. Plus, compared to the cost of a biopsy, it is relatively cheap. I'm just a bit skeptical about its reliability.

If anyone knows a good doctor in the DC Metro area that is knowledgeable about Celiac Disease, please let me know.

Thanks for the input!

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    • Skg414228
      Correct. I’m doing both in the same go though. Thanks for clarifying before I confused someone. I’m doing a colonoscopy for something else and then they added the endoscopy after the test. 
    • trents
      It is a biopsy but it's not a colonoscopy, it's an endoscopy.
    • Skg414228
      Well I’m going on the gluten farewell tour so they are about to find out lol. I keep saying biopsy but yeah it’s a scope and stuff. I’m a dummy but luckily my doctor is not. 
    • trents
      The biopsy for celiac disease is done of the small bowel lining and in conjunction with an "upper GI" scoping called an endoscopy. A colonoscopy scopes the lower end of the intestines and can't reach up high enough to get to the small bowel. The endoscopy goes through the mouth, through the stomach and into the duodenum, which is at the upper end of the intestinal track. So, while they are scoping the duodenum, they take biopsies of the mucosal lining of that area to send off for microscopic analysis by a lab. If the damage to the mucosa is substantial, the doc doing the scoping can often see it during the scoping.
    • Skg414228
      Yeah I had zero thoughts on celiac it was an ibs referral. She suspected celiac when she started questioning me and I already needed a colonoscopy which I guess is why she didn’t care that I had been fairly gluten free up to that point. Because they would have just done the biopsy when doing the colonoscopy. I don’t know we will see just figured I’d put that info on the forum in case someone finds it interesting later. I’ll update in April when I find out. 
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