Still Here, Still Confused

[shoequeen]

Ok, so this all began about a year ago, I have posted a few times with symptoms and doctors results, but I am still unsure of what is wrong with me. 7 months ago I had an endoscopy because of various bothersome gastrointestinal issues- I woke up and he said- you have celiac sprue. End of story, however all my blood work was negative- he did a gene test- I came back positive on DQ8. I tried going gluten free for 2 weeks and felt terrible the whole time, at the end of these two weeks I went to a new and more well-known and respected gastro. He looked over my paperwork and said I do NOT have celiac, the findings are simply suggestive, not conclusive, and thought it may be a pancreas issue since my symptoms were almost always when I ate fatty foods. He said that it

[lucia]

Your story sounds like so many of the stories of people on this board. The medical profession - at least in the U.S. - is inept at dealing with celiac and gluten intolerance. You already know that you have an issue with gluten. Trust yourself. These doctors are not trustworthy.

Personally, I saw a GI doctor who was a teaching professor at one of America's best medical schools, and he was unable to diagnose me with celiac/gluten intolerance even though 1) he discovered through an endoscopy that my stomach was oozing blood, officially called gastritis, and 2) I described painful, ongoing neuropathy. Both gastritis and neuropathy are symptoms of gluten intolerance. I simply typed these symptoms into google and discovered this for myself. I found relief through a gluten-free diet. Then, I took myself to the Celiac Center at Columbia University and had my self-diagnosis confirmed by the MDs there.

[Takala]

There is another poster on this board whose celiac disease was triggered by a giardia infestation. He has written several times how this one encounter with tainted water on an outdoor outing changed his entire life, and the resulting celiac and food intolerances came after it.

patchy villous blunting definitely inflamed

You have positive DQ8, past and present biopsies indicating damage, and you can't get thru the day without a drug designed to cut down on gut spasms. Time to stop eating gluten.

[eatmeat4good]

Very typical of Celiac testing...

Only sometimes diagnostic.

You get better when you eliminate gluten.

You get worse when you eat gluten.

Dietary elimination and challenge is 100% diagnostic whether you call it Celiac or Gluten Intolerance.

[peeptoad]

I'm entering my second gluten-free month and am seeing a clear reduction in the IBS symptoms I've been experiencing for the last five years. I was diagnosed with SIBO two years ago, and have been treated for that, but many of the GI issues remained. Going gluten-free has definitely helped me, not only with the GI stuff, but with other symptoms that I didn't even recogize until I went gluten-free. (e.g. I had small, raised, inflamed spots on the inside of the knees and thighs that were not DH, but have completely disappeared since going gluten-free). I also have an iron deficiency, have been on supplements for two years and my ferritin has barely risen. I get that retested later this month and I'm curious to see if gluten-free will help that too. All this and my celiac test was negative (although I don't know if it was the blood or fecal test that was perfromed).

I'm going another 3-4 weeks and then challenge myself with gluten to be sure if it's something I need to avoid.