Endoscopy

[LauraR04]

Hello, I have had a bad stomach since I was a child along with frequent sinus infections in my childhood and adulthood. Bits and pieces of my health picture are starting to come together. I was diagnosed with selective iga deficiency in 2005 and my doctor blood tested me for celiac disease and it was negative. With continued stomach issues I was tested again in 2011 and my igg was elevated but I was told it was negative. A friend with celiac encouraged me to continue to investigate my symptoms because she has celiac with similar symptoms. I finally went back to my GI doctor and he told me back in 2000 I was diagnosed with lymphocytic colitis. I wasn't aware I was told my colonoscopy was normal. I was young 19 and just went on with my life. My GI doctor said with lymphocytic colitis and selective iga deficiency he thinks I surely have celiac. I had a repeat colonoscopy and upper endoscopy which both looked normal today. I was told not to get too excited until the biopsies come back. Has anyone had a scope that looked normal and still have positive biopsies? Most people I know have been  diagnosed on the day of their scope and haven't had symptoms as long as me. Any stories to share? I mean I'm happy if I don't have it but I was hoping for answers too. Thanks!!!!

[Scott Adams]

Did you get a blood test done before your scope? That would be the normal route when exploring celiac disease. If so, please share your blood test results here. 

Also, after all is said and done, most people fall into the gluten sensitive category (~10-15% of the population), rather than the celiac disease category (~1%). At the very least it sounds like you may be in the gluten sensitive category. Unfortunately there not current test for gluten sensitivity, but elevated blood antibodies that fall below the celiac disease range are certainly an indicator. 

In the end, if your test results don't give you an answer, trying out the gluten-free diet for several months might be your next step.

[LauraR04]

Thank you so much for replying. I have selective iga deficiency and my family doctor has suspected me having it for some time. My ttg-igg came back elevated once but no one told me. My GI doctor told me there is a very high correlation with selective iga deficiency and lymphocytic colitis and celiac disease. I also had cholestasis of pregnancy which has the same genetic markers and correlated with celiac disease. I thought with all if these coincidental conditions along with low iron, vitamin d, and magnesium if I had celiac disease the GI doctor would be able to visualize damage. I talked to my sister last night a pathologist and she told me it is actually rare to visualize damage. It it mostly seen under a microscope. Most people I know who are actually celiac positive were told the day of their scope not to eat gluten. I was expecting the doctor to see the damage yesterday but I guess this isn't always the case.

[Scott Adams]

Yes, for the biopsy they typically take small pieces of tissue samples from very specific areas, prepare them a specific way, then examine them under a microscope using the Marsh criteria. If you also had low iron, vitamin d, and magnesium I would be surprised if they didn't find damage, but this possibility would not rule out gluten sensitivity. The damage is the end state of the disease, and you really would want to avoid that stage if possible.

[RMJ]

My endoscopy was at a university medical center and my GI had an endoscope with enough magnification so that she could see my blunted villi.  Not all endoscopes are that magnification.  It is not unusual to have the small intestine look visually normal and have damage seen under a microscope.  

Hope you get definitive answers!

[LauraR04]

Thank you all! This waiting is hard especially since I have had so many immune conditions that correlate with celiac disease. My husband is on and off about me cutting gluten out of my diet if I don’t have celiac. They told me in 7-14 days they will send me a letter about my biopsy results, but I think I want to cut gluten out of my diet and see if some other ‘mysterious’ symptoms I have disappear. I had my hip replaced and it is still inflamed I seem to always be inflamed. My GI dr told me if I have celiac disease once I cut gluten out he suspects my hip will feel better too. 

[Wheatwacked]

I counted eighteen 'mysterious symptoms' that improved once I started gluten-free. Some were immediate, within weeks, others took longer. There are around 200 symptoms that show improvement with a gluten-free diet, not necessarily only Celiac. You can Google it. Your doctor suspects it and you've had the biopsy. The next step would seem to be to start gluten-free and see what improves, regardless of the tests. As they say, the proof is in the pudding. The discussion with your husband will be about why he is against gluten-free, he's going to be concerned about how it will affect him and you will need to address it.