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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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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/ gene testing?  Some 30% of the poulation carries the celiac genes.  It just tells you that you have the chance to develop celiac disease.  It can not diagnose you.    
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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