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PatrickCA

Eat 2 Pizzas,.. Then Test?

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Hi All,

I was recently tested by enterolab, and had positive aTTG, aGA, and 1 celiac, 1 gluten sensitivity gene. Maybe we are on to something.....

But, I need more evidence to do this for life. So will my dr.

The problem is that I've been gluten free for about 7-8 weeks, with one mistake resulting in a few grams of gluten.

I just been given test orders for the complete celiac panel. Before I go get my blood drawn, should I eat a bunch of gluten foods one last time in an effort to increase the probability of a positive blood test result? As far as I know, the IgG responses are pretty quick.

I was thinking maybe eat pizza and bread sticks, and then get tested in 24 hrs?

Good plan? Bad plan?

Anybody out there do both enterolab AND blood tests?

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I know for the biopsy you have to be eating gluten for 3 or 4 months. I don't know how long it takes to show up in the blood. I don't think one binge would be adequate.

If the docs don't accept Enterolab, they might accept dietary response. Are you feeling better gluten-free?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi All,

I was recently tested by enterolab, and had positive aTTG, aGA, and 1 celiac, 1 gluten sensitivity gene. Maybe we are on to something.....

But, I need more evidence to do this for life. So will my dr.

The problem is that I've been gluten free for about 7-8 weeks, with one mistake resulting in a few grams of gluten.

I just been given test orders for the complete celiac panel. Before I go get my blood drawn, should I eat a bunch of gluten foods one last time in an effort to increase the probability of a positive blood test result? As far as I know, the IgG responses are pretty quick.

I was thinking maybe eat pizza and bread sticks, and then get tested in 24 hrs?

Good plan? Bad plan?

Anybody out there do both enterolab AND blood tests?

Bad plan. It will take a while, some doctors say about 3 months, to eat enough gluten to get the antibodies built back up in your blood. Even then you may run into a false or low negative. Your Enterolab tests are reliable. You do need to drop the gluten.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I was gluten-free for my blood test, then ate gluten for six weeks for my biopsy, both were negative. Small amounts of gluten make me ill. I think Ravenwoodglass is correct. I am gluten-free and casein-free for life based on Enterolab.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thanks for your quick responses CarlaB & RWG. And my rational side agrees with both of you. I certainly know there are many here whom have had to make a decision for their health without the benefit of any so called "gold-standard test". I respect that, since I know that these tests can be less than meaningful.

OK.... You are going to think I'm an idiot, but I see two potential advantages to eating a bunch of gluten for 1-2 days. The first is that it *might* influence the test results. The better argument, is that it provides a second challenge that if yields clear adverse response, will convince me 100% that I'm must be gluten free whether gluten sensitive or celiac.

I did find one research article that indicated that short term exposure to gluten does not increase antibody titers (concentration). So, you are probably both right. But, the challenge confirmation would be very valuable to me.

I'll let you know how I feel after dinner. (Yes, I AM listening to you....sorry I'm so diffficult!).

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Thanks for your quick responses CarlaB & RWG. And my rational side agrees with both of you. I certainly know there are many here whom have had to make a decision for their health without the benefit of any so called "gold-standard test". I respect that, since I know that these tests can be less than meaningful.

OK.... You are going to think I'm an idiot, but I see two potential advantages to eating a bunch of gluten for 1-2 days. The first is that it *might* influence the test results. The better argument, is that it provides a second challenge that if yields clear adverse response, will convince me 100% that I'm must be gluten free whether gluten sensitive or celiac.

I did find one research article that indicated that short term exposure to gluten does not increase antibody titers (concentration). So, you are probably both right. But, the challenge confirmation would be very valuable to me.

I'll let you know how I feel after dinner. (Yes, I AM listening to you....sorry I'm so diffficult!).

But you can do this same challenge without scheduling expensive and pointless testing. In fact, if you stay gluten-free long enough, you will probably have an accidental glutening anyway, so you don't need to deliberately do this.

If getting a positive test result means you're more likely to stay on the diet, then you definitely should not have the test with an inadequate period of gluten-eating first, or you'll end up using what are probably false negative test results as an excuse to eat a standard American diet.

If you read the boards, you will see, over and over again, that people did inadequate "gluten challenges" and ended up with negative test results. But even if you did a lengthy gluten challenge, you might still end up with a negative result. If you're willing to go gluten-free even if the tests come up negative, then just continue on the gluten-free diet.

So often I read, "The tests aren't costing me anything, I know I have it, but I'll have more tests/repeat the tests etc." More tests won't prove you haven't got it. Somebody's paying for those tests, and all medical tests have unintended side effects.

  1. The test itself may damage you, through an infected needle stick, from a reaction to something they made you drink, to a slip and some sort of mechanical damage.
  2. The test may be a false positive, and you may be treated for something you don't have, and the treatment may damage your health. OK, this one doesn't happen with celiac, but it does happen a lot. Think of someone who had an operation for something they didn't have or a serious drug reaction when they didn't have the disease.
  3. The test may be a false negative, and you will not be treated for something you have, and this will seriously impact your long-term health. This is the one that will come back and get you if you guess wrong here. Lots of people on this board have many years of undiagnosed gluten-eating that have caused permanent health problems, and it could happen to you.

Seriously, you know what needs to be done, just do it.


Nothing

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I completely understand where you're coming from. I did a six week gluten challenge thinking it was enough. Often, when I go into denial again, which is where you seem to be ;) , I think back at the gluten challenge and how bad I felt. Penguin just got off her gluten challenge, hers was like many of ours. If you just eat gluten for a couple days after being off it for some time, that should give you a good idea. However, there are people out there who are asymptomatic, so there is a chance you won't feel any different, but it can do the damage anyway.

My oldest daughter has not been tested, but after the family moved, I stayed back in Indiana with her until she graduated HS. Our apt. was gluten-free. She didn't seem to have any symptoms, so we had never had her tested. Now, whenever she eats gluten, she gets bad allergies. That's her only symptom, but it's enough to convince her at age 18 to stay off gluten forever! BTW, my allergies are completely gone as well. So, be open to other signs of a problem other than digestive.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thank you both very much for your many thoughful comments.

Of course, the truth is that I believe that if I have positive blood tests, I'll be able to commit. As you point out, if I get a negative result, it will not help me to committ which could be a problem.

I recently read Dr. Peter Green's book on Celiac disease (as well as Dangerous Grains).

Some of you might be interested in this recent npr interview of Dr. Green.

http://rochesterceliacs.org/news.htm

Clearly, Green is much more convervative on dx than others, such as the authors of Dangerous Grains. My understanding, (don't quote me) is that he claims that one should not go gluten-free until they have a confirmed biopsy result (??). Obviously, this idea does not jive with they many, many people that clearly have harmful gluten sensitivity. So here the medical system is in a major pickle.

Anybody interpret his opinion differently? Anyone agree with his opinion (I suspect not)?

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Obviously, this idea does not jive with they many, many people that clearly have harmful gluten sensitivity. So here the medical system is in a major pickle.

Anybody interpret his opinion differently? Anyone agree with his opinion (I suspect not)?

Welp, my blood tests were inconclusive, biopsy normal, and both my general doc, my allergist, and my GI doc want me gluten-free because I have a good dietary response. Go figure. My GI doctor and his PA have gone to Dr. Green's seminars and they still think that, so there ya go. Although, I've heard my GI doc has a wife with celiac, so who knows. I'm lucky!


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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My problems stemmed from the fact that I figured out long ago that wheat was making me sick and quit eating it long before any testing for celiac came up. I was still getting gluten and wheat in places I wasn't looking. So, Dr. Greene may be correct, but my case doesn't fit into his protocol. It sounds like yours doesn't either since you've already been gluten-free. Dr. Greene is the one who says 4 months, 4 slices of bread per day for testing. I'm not willing to do that!! I know I have the reaction to it, I know I feel better off it, I'm not willing to delay my healing and make it more to heal from to get a doctor convinced.

Are you 100% gluten-free now? If so, and if there's a problem, a week or two on gluten will be enough for your own answers, but not for a doctor's tests. We don't wait for a heart attack to have concern for high blood pressure and cholesterol, why do docs think it's okay for us to wait for damage to the intestines to diagnose celiac when they know well in advance a person is having an autoimmune reaction to gluten?

Just food for thought. I think your test will come out negative ... look at my Enterolab numbers, I was gluten-free for over two months after my gluten challenge when the test was done. If yours are the same or lower, I would assume your tests would come out negative like mine did.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I am in the same boat as Patrick. My son is 2 1/2 and he has been gluten free for one year. He was not progressing and always had rashes until I took him off gluten. But, it is very hard to keep a child away from gluten. I, too, need to know as sure as possible if he has to be gluten free. I plan to do the enterolab testing. Enterolab told me it took 2-3 years for the antibodies to leave the system so he doesn't have to eat gluten again for the test. Any thoughts?

This forum has helped me help my little boy so much. Thank you, in advance, for any words of wisdom.

Dawn

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Dawn, I was very happy with the Enterolab service and their willingness to answer (or try to) a couple questions after testing. I'd recommend the panel with gene testing if it is affordable for you.

If there is a gluten sensitivity, I think EL's test is most likely show that. It is very sensitive. But, until Dr. Fine publishes more of his studies (maybe multiple) mainstream medicine simply is not willing to dx 1/3 of the general population as sensitive to the "staff of life". EL simply has not reported whether AGA in stools, correlates with current or future health problems, and ii) they have not determined the whether stool aTTG predicts current or future celiac. (For comparison, bood tests for aTTG or aEMA are roughly 99 and 99.5% specific. (If you have these Ab, you have Celiac disease as defined by flattening of the vili of the small intestine)

It seems like one major question about GS is whether having antibodies to particular foods (if they are constrained to the intestines) is always a bad thing. One might guess that antibodies to a self protein TTG (whether in the intestines or blood) are always a bad thing, but we'll have to wait for Dr. Fine to publish this.

Penguin (chimeric animal person) - CarlaB , I was 100% gluten free until last night. Sorry, I did it. But, as you both suggest, I won't expect it to tell me the answer. (unless I get really sick, I'll take that as definative)

I agree with both of your comments, thanks. Wow.....so interesting that you learned it was wheat early on without a test. It must mean that you have a faster or more severe response. I just want to (naturually) take the evidence thing as far as possible, and then I'll stop. If I get negative answers for blood and sigmoidoscopy/endoscopy (fun), I think my primary dr. wants me to try anxiety medication - for the first time. But, I'm not thrilled about the idea, and it seems like I ought to try gluten-free for a good 6-12 monthes before jumping to that.

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I agree with both of your comments, thanks. Wow.....so interesting that you learned it was wheat early on without a test. It must mean that you have a faster or more severe response.

What happened was I was not feeling well, and I read a book on women's health. The doctor suggested that if you eat something every day, you are probably allergic as your body will crave foods you have a problem with -- especially, wheat, dairy, corn, and soy. I laughed and said, "Well, I eat wheat every day, no way am I allergic!!" and I quit eating it for two weeks. The first three days I felt as if I had the flu. After two weeks I added it back in and it made me sick. I tried it a couple more times, and each time it made me sick.

I didn't think it was a gluten itolerance, so I was just staying away from the obvious wheat. After three years, because the doc said food allergies can go away, but if they do, do not eat that food often or they will come back, I started eating it once a week or so. A few months later I started getting really sick and lost a pound per week for four months -- since I was starting out at only 136, I got scared and started eating a lot to make up for the diarrhea problem that was causing me to lose weight. I cut out gluten for a few months, then had the blood test -- negative, of course. Six weeks later, I had the biopsy after a gluten challenge. I went gluten-free the day of the biopsy last December. By the end of the gluten challenge I didn't even feel like it was safe for me to drive I was so disoriented from brain fog. I had Enterolab testing done in March. That's it in a nutshell.

Good luck with whatever you decide! I understand and agree that the proof is not out there about Enterolab ... but even my ob/gyn said dietary response is clinical proof!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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After two weeks I added it back in and it made me sick. I tried it a couple more times, and each time it made me sick.

Glad to hear I'm not the only skeptic. ;)

dietary response is clinical proof!

Yep....probably still the most reliable and most useful too.

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