Help! Getting Hopeless...

[yerbanate]

So it goes like this:

Since January, I've been having Celiac symptoms, as I see it. Fatigue, bloating/awfulsmellingflatulence when I eat certain foods (not quite sure what, I think gluten), irritability, sleeplessness, depression, mysterious sinus headaches, and general dizziness. I've gotten tested this summer for sprue a couple times, and both have come out negative. I told my doctor, who is very experienced, that I didn't think the blood tests were very accurate based on what I've read, and he said that they are 99.9% effective, the ones that he'd seen done. Anyways, today I tested negatively for lactose intolerance as well, and I'd had a biopsy done earlier, which was part of a colonoscopy. They saw some enflamed tissue and I was (mis)diagnosed with Crohn's, but I really don't have a lot of Crohn's symptoms, I don't think. The biopsy was negative for sprue though too, I guess. Anyways, I'm not sure what to do at this point. I've cut gluten out of my diet, and it seems to be better, but then again, I've cut a lot of things out at this point (everything but meat, fruit, and veggies). I...don't know what to do at this point. Any ideas?

Nate

[Rikki Tikki]

Hi Nate:

The way I would look at it is if you feel better gluten free then stay gluten free. I don't think you need to have an official diagnosis, people say it almost makes it harder for insurance and stuff.

Anyway welcome

[Michi8]

So it goes like this:

Since January, I've been having Celiac symptoms, as I see it. Fatigue, bloating/awfulsmellingflatulence when I eat certain foods (not quite sure what, I think gluten), irritability, sleeplessness, depression, mysterious sinus headaches, and general dizziness. I've gotten tested this summer for sprue a couple times, and both have come out negative. I told my doctor, who is very experienced, that I didn't think the blood tests were very accurate based on what I've read, and he said that they are 99.9% effective, the ones that he'd seen done. Anyways, today I tested negatively for lactose intolerance as well, and I'd had a biopsy done earlier, which was part of a colonoscopy. They saw some enflamed tissue and I was (mis)diagnosed with Crohn's, but I really don't have a lot of Crohn's symptoms, I don't think. The biopsy was negative for sprue though too, I guess. Anyways, I'm not sure what to do at this point. I've cut gluten out of my diet, and it seems to be better, but then again, I've cut a lot of things out at this point (everything but meat, fruit, and veggies). I...don't know what to do at this point. Any ideas?

Nate

I don't believe that you can have a biopsy for celiac during a colonoscopy. The samples need to be taken from the small intestine...that would be during an endoscopy instead. Will you be having any other testing done?

[Aerin328]

Nate, Welcome!

I would recommend visiting www.enterolab.com ; a lot of people on this site have been evaluated by this lab, which specializes in gluten intolerance.

[AndreaB]

I would also recommend enterolab. They have a full panel for gluten intolerance including a gene test and it used to include dairy at no additional charge. Don't know if they are still running that special. Price for the whole gluten panel is $369. They also test for soy/egg/yeast if you are interested for $199 I think. Open Original Shared Link for enterolab's website.