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Trying To Eat gluten-free, Had Blood Test, Negative

2 posts in this topic

Hi Guys,


I'm trying to decide what to do here, so perhaps thought I'd ask if anyone had been in a similar situation.


Through process of elimination, I worked out on my own that I was having a reaction (typically GI symptoms) whenever I ate products containing wheat.  I put myself on a Gluten Free diet, and inside of a week found significant changes in sleep patterns, energy and a complete absence of athsma symptoms I had suffered from for years.  After a particularly bad couple of weeks of what I thought was gluten cross contamination (I eat out a lot), I decided to get a blood test done, just to see if anything showed up.  I just got the results today, and it came back as a "1", which is within normal.


Now, given I had been trying to eat gluten-free for ~ 2 months prior, this could be a meaningless number.  On the one-hand, a non-zero number makes me think it's a positive although week.  On the other hand, I thought it'd be much higher since, based on my symptoms, I'd had a pretty bad couple of weeks.


As my doctor said, getting some numbers on a piece of paper, or a biopsy isn't going to tell me anything I don't already know -- gluten, or at least wheat, makes me sick.  What I don't know, however, is what value there is in actually having that number in the first place.


Should I make myself sick to get a positive diagnosis?

Should I just concede that I likely am coeliac and just continue doing what I'm doing, knowing I won't ever get a positive diagnosis?


Really not sure what to do here... 



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Well you don't know that you weill never get a positive Dx. But I say if what your doing works for you!! Then do it!! Like your Dr. Said "You already know" So really if it was me? Why put your self thru it? When I first got my DX that said I was negative, I just decided to go on a non processed food diet!! Lil did I know the Dr.s office would call and say I did have Celiac. So yea I'd stick with the celiac diet and go for making your self healthy!! 


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    • That's how he makes his money... of course you will not get them to agree that the tests are bogus! Same with all these " miracle" supplements that claim to " digest" gluten.  If you call them, , of course they are going to say they work!    
    • 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.
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