Want To Ask Doc For Endoscopy

[misulli]

Hi,

I had a negative test for Celiac, but came back positive with Enterolab and also had two copies of the HQA-DL2 gene. I called to ask to speak with him and am waiting a call back. I am almost certain he is going to say no and that it is not warrented. While I do believe in Entrolab, I am not sure I want to bring this up with him. Any thoughts???

Michelle

[Ursa Major]

Are you on a gluten-free diet now? If you are, an endoscopy will be useless, as it will likely come back a false negative anyway.

With you testing with Enterolab, I assume you have symptoms pointing towards celiac disease. That, combined with having two celiac disease genes, should, in my opinion, be confirmation enough.

On the other hand, if you are still doubting and haven't started the diet yet, an endoscopy with biopsy may confirm celiac disease (and MAY is the word here, as those biopsies are hit and miss and undamaged spots might be biopsied, entirely missing the damaged ones, giving you a false negative).

[misulli]

I tried starting the diet, but went back on gluten on the chance that I would be getting the endoscope. I don't want to skew the results. I am just anxious that he will totally dismiss the enterolab results and the genetic results.

[Ursa Major]

Well, he might dismiss the Enterlob results, but he can't dismiss your genes. Those are the 'official' celiac disease genes, and together with your symptoms suggest celiac disease. Blood work is very unreliable (false positives are almost unheard of, but false negatives abound), and quite a few people here had a positive biopsy after negative blood work.

Mind you, I am not sure why you spent all that money on Enterolab, and then still want a biopsy and won't go gluten-free right away.

Still, I can't see your doctor refusing to do the biopsy with the evidence you have now. Just make sure it is soon, because you will suffer needlessly and cause further damage while still eating gluten foods.

Did your Enterolab tests show malabsorption? If yes, you might as well be tested for nutritional deficiencies while you are at your doctor's office. Ask to be tested especially for levels of ferritin, vitamin D, calcium and magnesium, potassium, vitamin K, B12 and B6. Also, it is a good idea to have a bone scan done, because celiac disease often causes osteoporosis, even in children.

If you end up having the biopsy, please make sure you start the gluten-free diet right afterwards, regardless of the results. Because you undoubtedly have celiac disease.

[misulli]

Thanks. I agree. I guess it would be nice to have some support from the medical community and maybe show the doc that a negative blood test does not always mean negative and to not put us all in the "IBS" category. My most recent bloodwork has been on the lower side of normal for B12, in addition to being slightly anemic. I also just did some bloodwork for life insurance and I had a low level of a something that was indicative of malnutrition. I have always been underweight (I am 110lbs at 5'4') and this is about the most I have weighed in some time. I guess it would be good to have a definitive diagnosis as opposed to a self-diagnosis which may not carry much weight in the medical community.

[ravenwoodglass]

Thanks. I agree. I guess it would be nice to have some support from the medical community and maybe show the doc that a negative blood test does not always mean negative and to not put us all in the "IBS" category. My most recent bloodwork has been on the lower side of normal for B12, in addition to being slightly anemic. I also just did some bloodwork for life insurance and I had a low level of a something that was indicative of malnutrition. I have always been underweight (I am 110lbs at 5'4') and this is about the most I have weighed in some time. I guess it would be good to have a definitive diagnosis as opposed to a self-diagnosis which may not carry much weight in the medical community.

If you are forming antibodies you have a 'diagnosis' IMHO. You may find after you have been gluten free that seeing doctors on a regular basis is no longer needed. Why do you care what the medical community thinks if the diet restores you to health that should be proof enough for them. I didn't need to see my doctor for almost 2 years after diagnosis. I just didn't get sick and was not about to go spend money just to say, hey I feel great. My doctor thought I changed doctors and didn't recognize me when I went back in. He saw the difference in me and put 'celiac' in the diagnosis column with no reservations whatsoever.