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Desperate For An Answer
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4 posts in this topic

Hi there,

Firstly, thank you for reading my plight. I have been struggling with this digestive issue for a while now, and I figured a good way to figure out what I may be going through would be to ask a bunch of other people who could potentially be suffering from the same or similar issues.

I believed I had a problem with gluten. If I eat wheat bread, I get bloated. I feel sick. Sometimes I have problems with going to the bathroom (but I've largely remedied that just by taking fiber supplements).

Here's the thing, though. I can eat white bread all day. But I can't eat white pasta. If it's a wheat or whole grain product, it will make me gassy and bloated. Any type of pasta does the same--but white bread is totally fine. I feel just fine after eating it. I've been taking probiotics and my fiber supplements. It's definitely helped, but it just seems to unpredictable.

Does anyone else have this issue? White bread is fine, but no pastas or wheat/whole grain bread.

Thanks so much in advance for any insight!

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Hi,

 

Symptoms are pretty random with celiac disease.  The best thing to do is get yourself tested for antibodies and possibly an endoscopy before stopping eating gluten.

 

There is a really wide range of symptoms that untreated celiacs have, including no physical symptoms (silent celiac).  Some people only have a skin rash and no digestive symptoms.  So diagnosing yourself by symptoms and somewhat random reactions isn't always workable.  That's why the antibody tests are helpful.

 

If you really don't want to get tested then doing an elimination diet is the way to go.  You would need to eliminate all gluten from your diet for 3 to 6 months, and then trial eating it again for a month.  Most likely you would have clear symptoms then.  But if you wanted to get tested after that you would have to do a full gluten challenge, which some doctors say is 8 to 12 weeks of eating gluten.  That can be very unpleasant if you have symptoms, so it is better to get tested before stopping gluten.

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That antibodies test, the doctors will know it's name by Celiac Panel. It's going to test your DNA co-signs. Very accurate test. Takes a lot of blood though, so bring water and something gluten free to chow down on afterward if you get faint from giving blood.

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Not all doctors know which tests to order, a lot of doctors in my area are only ordering the tTg IgA and total IgA.  Don't assume that the doctors are going to order a whole celiac panel.

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      What?  Be sure that next endoscopy tests you for lymphoma (cancer) as well!   Seriously.  You need to do some research as your knowledge of celiac disease is lacking.  Did you fail the entire celiac panel?  Or did your doctor/insurance save cash and just order the very good (but does not catch all celiacs) TTG IgA?  You have a family history, a positive biopsy, what more do you need?  You do realize that this is not about just giving up gluten, don't you?  We just had a member join this year who was told years ago that her tests were "inconclusive" and that she now has suffered with lymphoma (cancer)? Ugh!   Endoscopy in 10 years?  Who would even wait 10 years?  This isn't colon cancer and polyps!   Are you talking about a colonoscopy?  Are you even sure you had an endoscopy?   Be sure you have your bones checked too.....and forget the breath.  You might not have any teeth and implants will be out since your bones will be compromised. Sorry, if I come on strong, but when I was diagnosed I had no tummy issues.  A few months later, my bones began breaking.  I was undiagnosed for a long time because of neglect not stupidity.  So, I urge you to research this disease more!  Hopefully you'll ward on another autoimmune disorder by remaining gluten free.  Find what celiac blood tests were actually taken!  Even if you do not think you have celiac disease, something has caused villi damage!   Good luck!  
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      I went in for an endoscopy to find out if something from my stomach/intestine was causing my bad breath.  A biopsy during that procedure revealed that I had Celiac.  I thought it was strange since I ate pizza, pasta, and other bread/gluten items almost every day without issue, so I decided to confirm the biopsy result with a blood test. I took the blood test twice (once on a high- and once on a low-gluten diet) and it came back negative both times.  I just assumed someone at the earlier biopsy lab must have messed up my analysis or accidently mistaken someone else's biopsy for mine, but after reading this thread it seems like my initial biopsy might have been correct all along. My doctor suggested doing another endoscopy, but I didn't want to foot the bill for that.  Also, my older brother has Celiac which was confirmed by both a biopsy and blood test. Eating less gluten did seem to help a little with my bad breath, but SmartMouth Activated Mouthwash along with Flonase nasal spray and a Dr. Tung's tongue scrapper really did the trick to solve the bad breath issue. I'm just assuming I have Celiac and eating "gluten conscious" until my next endoscopy in about 10 years. If that biopsy comes back positive again, then I'll be strictly gluten-free.  I'm just glad I don't have many symptoms.      
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