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Desperate For An Answer

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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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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    • Hi Gemini, My birthday is in June, so I'm a Gemini too---and I do agree with some of your good points.  I had written that one could EITHER try Dr. Fine's stool sample testing, where his EnteroLab looks for elevated numbers of IgA antibodies to various food proteins (gluten, milk proteins, soy proteins, yeast proteins, etc.), OR one could just avoid eating or drinking or touching suspect food proteins, for at least a month (3 months is better), and see whether AVOIDING eating and touching such proteins causes improvement or not, in one's symptoms and lab test results. I urge you (and anyone else who wonders about this) to speak by phone, with people working at Dr. Fine's EnteroLab,  and state your objections to them, and see what their replies might be. Here's their phone number: 972-686-6869. I called Dr. Fine's Enterolab, and the folks I spoke with there, were nice enough to reply to any questions that I had, including one lady (I believe she was a nurse) there telling me about the "IgA deficiency" blood test called "total secretory IgA", which one can do first, to see whether it pays to try EnteroLab's stool sample testing! From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there! And, Dr. Fine's point, is that in both Celiac and non-Celiac types of gluten sensitivity, the cure is the same: AVOID GLUTEN! Dr. Fine doesn't use the term "gluten intolerance", because newer uses of the word "intolerance" refers to NON-PROTEIN intolerances, such as "lactose/milk sugar intolerance" (lactose/milk sugar is a carbohydrate, not a protein), and intolerances are not related to one's immune system, while gluten "sensitivity" and other "sensitivities" ARE related to one's immune system, with ingestion (eating or drinking the offending proteins) causing one's immune system to cause the production of antibodies to those proteins that one is "sensitive" to. Many years ago, a friend of my husband, went to a local doc who told my husband's friend to try avoiding gluten. My husband's friend, without being biopsied, went off gluten, and has become well, ever since that day long ago. Some years ago, both my husband and I did Dr. Fine's "EnteroLab" stool sample testing, for gluten sensitivity. My husband came out positive, and I came out negative. My husband has avoided gluten, ever since then, and I try to do so also, to avoid tempting him to cheat, and he has avoided getting colds, etc., the way he used to, before he stopped eating glutenous foods. And, there is much disagreement (I know, because I'm a retired nurse, and I've been a patient now and then) between doctors, about gluten sensitivity, and about anything medical. So, I've learned to be wary of the terms "valid medical institutions" and "valid medical professionals". What may seem valid today, might be disproved tomorrow, and what might not seem valid today, may be shown to be valid tomorrow. Medicine is always in flux, thankfully. If not, medicine would be "dogma". If you call and speak with Dr. Kenneth Fine (M.D., gastroenterologist, "sensitive" to many food proteins himself, including gluten, but not "Celiac") &/or to the folks working at his Enterolab, please let us know what their replies are, to your objections to his lab's work. In the meantime, let's both try to keep an open mind. Sincerely, Carol Sidofsky (wife of gluten-sensitive non-Celiac hubby, and I'm a retired RN/nurse)
    • Where do you live? I was going to go to Cleveland but just got an appointment with Celiac Center in Boston. 5 hour drive next month. Hoping it is worth the trip. Might be worth looking into.   I just educated a lab on DGP yesterday. They just brought a celiac panel in house and i saw they were using gliadin. I think they are running my sample on the old test in-house and sending it out for DGP to see what happens.     
    • Me too, I am not a member of Medscape.    Is this the article?  I goggled the topic and filtered using "news".  (Hope it works!) Celiac Disease in Children: Experts Clarify Diagnosis and Management Recommendations   Here is what I liked.....a gluten sniffing dog for helping kids to remain dietary compliant!   Count me in!  
    • There is not test for non celiac gluten sensitivity. That would not cause your numbers to be elevated.
    • Sorry it's not working . If you google the article in the first post you should be able to bring it up.  It's from 3 of the leading Celiac Meds Docs so really worth a look.  
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