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Tested Once, Doubting The Results


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19 replies to this topic

#16 tofu8grrrl

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Posted 25 November 2005 - 03:27 PM

One thing that auto-immune reactions are notorious for are how they can change over time. It's not uncommon for a person to react differently to gluten at different times. I don't know why, and I don't know if anyone knows really.

Good luck, both of you, with testing, or not, and the diet!

Pauliina


Thanks very much! It is good to know that the reactions can change over time--that might explain a lot in my case. The testing is frustrating because it seems like the doctors use it to rule it out when maybe it shouldn't be ruled out so fast if the tests aren't terribly reliable. Oh well, I'm just going to try to stick to the diet anyway & see if I keep feeling better.
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#17 VydorScope

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Posted 25 November 2005 - 03:46 PM

Mott57..

Please note, if you realy want to redo the testing, simply occasionaly eat gluten before he test is NOT enough, you will get NEGATIVE results reguardless of condtion.
Most ppl would say AT LEAST 2-3 slices of bread EVERYDAY for 2-3 months.

Here some info from elsewhere on this site that will help...


How long must gluten be taken for the serological tests to be meaningful?


Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.



HTH!!
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#18 the57motz

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Posted 30 December 2005 - 02:03 PM

Well, I've decided to go gluten free irregardless of the test results. the genetic tests came back negative but I'm going to get a copy of them monday (or tuesday) from the doctor's along with my original blood test results to find out exactly what was tested etc.

I've been reading this forum (fanTASTIC info thank you!) and never knew that someone could be iGa deficient and I'll find out if my original test ever testing for total iGA. I'm definitely gonna do the enterolab tests because they sound alot more accurate.

tofu8grrl - if I understood what i've read so far correctly, genetic tests look for certain markers in a specific spot. There are conflicting reports even among geneticists on whether there is an accurate genetic test for celiac disease but the dq2 & dq8 (if i'm wrong PLEASE someone correct me! there's enough false info out there in this disease already) markers are the most commonly found in celiacs. I believe that there is also a DQ1 marker that can be found, and I also read that there is 1 % of celiacs that do actually have no genetic markers at all??? is that correct? because I've also read the opposite if you don't have DQ2 or DQ8 you can't get celiac. Personally I think that last is bogus science but I'd welcome other comments.


All i know is, every friggin' time I eat gluten (especially wheat) I get really sick. various things but I've been eating 2 slices a bread a day (sometimes having to force myself) for 1 month or 2 and now my knees hurt like a muther and are swollen. so that's it folks, i'm off gluten. I'm not going to risk neurological & other kinds of damage.

I'll post my enterolab results, I'm going to send for the test in 2 weeks or so.
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#19 CMCM

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Posted 03 January 2006 - 11:16 AM

Get your further testing done with Enterolab.....it is much more sensitive and then you will REALLy know what is going on. They do a complete panel with gene testing for about $395. You don't have to be eating gluten when you do it either. I had it done and although I don't have celiac diseast or any damage yet, I do have an intolerance and WOW, do I feel better since eating gluten-free. It isn't that hard either. Life is what you make it. I make an error occasionally, but only because I misunderstand the ingredients in something, but then I know it, however in the long run I am much better off. I found this out when I was 59. Barbara PS That is www.enterolab.com



This is really quite revealing about the nature of GLUTEN....that you could be diagnosed as NOT having celiac, yet you feel better not eating gluten! I'm thinking intolerance could just be the precursor to a full blown and identifiable condition of celiac disease, all you need is some sort of trigger at that point to set it off. After reading Dangerous Grains and several other books on gluten and celiac disease, you just have to conclude that the human digestive system is not meant to process gluten. Some people are obviously more resistant to problems than others, but I personally think the gluten issue is behind the increase in obestiy and diabetes and lots of other health woes of the last 50 years. The rise of all these different things has been huge and coincides with the increase in grain consumption. Like someone said, the evidence is all there, you just have to look at it and put two and two together. One of the books I read (by Dana Korn) had a big letter in it from a doctor who described the pathetically small amount of time spent studying about celiac disease in medical school and she lists all the reasons why doctors don't want to test for it....one reason that stands out is that they are uncomfortable with something they know nothing about, and another is that they are super uncomfortable if a patient comes in with far more knowledge about it than they do...which is sometimes the case with those of us to learn about and research celiac disease. Doctors especially don't like people who self-diagnose (correctly) when the doctor has been unable to come up with the correct diagnosis. In any case, this was very interesting reading.

Carole
B)
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CAROLE

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Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.

#20 Nancym

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Posted 03 January 2006 - 02:30 PM

Why is a 50 year old test necessary? Its inaccurate and really doesn't tell you if you have the form of celiac disease that doesn't cause villi damage. It is still damaging to you even if your villi aren't damaged. Some gluten sensitives get terrible neurological damage and never have damaged villi. Dr. Fine believes that villi damage is the end-stage of the disease. Waiting until you get there, you could be terribly sick. That's like waiting to treat cancer after it has matastisized.

To me the gluten-free diet is the ultimate test and you don't need a doctor to take that test. If you really are curious then Enterolab has tests that are a lot more uptodate than the ones your doctor is using and they catch the disease much sooner.

But I think you already know the answer. You are gluten intolerant. Wouldn't hurt to be checked out for other intolerances too though.

I really got a lot out of this essay by Dr. Fine: http://www.enterolab.com/Essay/

Edited by Nancym, 03 January 2006 - 02:32 PM.

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