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salamander

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salamander Newbie

Hi, this is my first post here, and I might be jumping the gun, but I don't think so! I haven't been diagnosed with a gluten allergy yet, as I am waiting on test results coming back. It does run in the family.

However just to give a little background info, I have been feeling pretty rough for a while now, and after several trips to the doctors, a bit of experimenting with taking various foods out of my diet I am coming to the conclusion that there might be a problem. My Doctor has been really good and thinks it might be the case.

I have been what you could call 'regular' for years when it comes to trips to the toilet but I never really gave it much thought. I thought it was normal for some people to need to go 2-3 times every day, and as for the wind problem! I just thought that was me. That's how I was.

Growing older, and being introduced to nights out and beer, I thought it was normal to need to go to the toilet 3 times the following morning! Nothing is loose, it's just that I seemed to need what you would call 'a really good clean out!' Several 'clear outs' in fact!

Some days at work, usually in the afternoon, I get really bad stomach cramps, like a huge build up of wind, and then it becomes necessary to either find a quite space away from the desk, to vent a little(lot) or pay a trip to the toilet. Not to go, but just to let off a lot of excess wind!

On top of all this, the eczema attacks that plagued me in childhood keep coming back. So too do the mouth ulcers, and about 2 years ago I decided to start taking multi vitamins, because despite what I thought was a healthy diet, I was constantly feeling run down and picking up every cold/virus going.

In recent months I have tried taking bread/beer/wheat based cereals/ crackers/wheatbreads etc out of my diet, and can genuinely feel better for it. Not totally cured, but better. This is where i am at now and reading other posts and info, it looks likely that my test results could be inconclusive.

Any help or advise would be great!


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GlutenWrangler Contributor

First off, it's important to distinguish between Celiac Disease and a Gluten Allergy. Celiac Disease is an autoimmune disease. Gluten causes an immune reaction in which the body attacks itself, thereby damaging the villi of the small intestine. Celiac Disease is diagnosed through antibody blood tests, small intestinal biopsy, and dietary response.

A Gluten Allergy is a histamine reaction which does not affect the small intestinal villi. Gluten Allery is diagnosed through a food allergy test or by an elimination diet.

That being said, I'm guessing that the tests you are talking about are a full Celiac Panel.They can be inconclusive in the sense that you can have Celiac Disease, but your antibody levels are too low to be detected. This is especially possible in your case because you have removed gluten from your diet. Or if you have positive blood work, but a negative biospy, some doctors would consider it to be inconclusive and would not give you a Celiac Disease diagnosis. But certain blood tests are very specific for Celiac Disease, so if it is positive, a Celiac diagnosis is warranted.

You definitely have Celiac Disease symptoms, and you have also had a positive dietary response. I would say that the possibility that you are a Celiac is pretty high, considering the positive dietary response and the fact that it runs in your family. I hope this helps.

-Brian

lightening16 Rookie

Hi

My only concern that is if you have been taking wheat out of your diet then your blood tests my come back negative even though this could be your problem.

The other reason you are not feeling 100% is that there seems to be gluten in everything and therefore you are probably getting some gluten anyway.

Good luck

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      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
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