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PeggyV

Enterolab Diagnosis

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After years of digestive problems I started getting small itchy blisters on my arms and legs. A dermatologist said it looked like DH. The blood test came back negative. I started reading up on DH and celiac and became convinced that I had a glutton intolerance. My mother had been told she had a wheat allergy and my daughter had been on a gluten free diet for over a month and her symptoms were gone. My diet did not contain a lot of obviously wheat products, so it was not that difficult to do a gluten free diet. Within 2 weeks the blisters went away and so did my bloating and diarrhea.

A few times when I inadvertently ate gluten (Chili's fries being one...) I bloated up and got ill. I didn


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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Peggy, even Enterolab's tests are not 100% accurate. NO tests are 100% accurate. That said, you said yourself that you had been gluten light for some time before going gluten-free 4 months ago. That could have been enough for your results to come back normal.

You obviously have intestinal damage and malabsorption as the result of a gluten intolerance, evidenced by your abnormal microscopic fat score.

So, the genes predisposing you to gluten intolerance, your high malabsorption score and the positive diet results really are all the evidence you need to know that you have to be on the gluten-free diet for life.

You could be IgA deficient, in which case the IgA tests would come back negative, even if you have celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Peggy, even Enterolab's tests are not 100% accurate. NO tests are 100% accurate. That said, you said yourself that you had been gluten light for some time before going gluten-free 4 months ago. That could have been enough for your results to come back normal.

You obviously have intestinal damage and malabsorption as the result of a gluten intolerance, evidenced by your abnormal microscopic fat score.

So, the genes predisposing you to gluten intolerance, your high malabsorption score and the positive diet results really are all the evidence you need to know that you have to be on the gluten-free diet for life.

You could be IgA deficient, in which case the IgA tests would come back negative, even if you have celiac disease.

Thank you for your response, it helps to hear from others.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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If you came back negative and have a problem with gluten I would assume that you would have tested low positive on Enterolab's numbers. It means you've been good about keeping gluten out of your diet in my mind.

Gluten isn't the only cause of malabsorption. I don't know if you would want to retest that at some point or look into other things. Soy and candida are two other things.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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You can email Enterolab, they're very responsive to questions.

My thought is you might be IgG deficient, so you'd never test postive. But ask them and see what they say.

That is a good idea. Thanks.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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After years of digestive problems I started getting small itchy blisters on my arms and legs. A dermatologist said it looked like DH. The blood test came back negative. I started reading up on DH and celiac and became convinced that I had a glutton intolerance. My mother had been told she had a wheat allergy and my daughter had been on a gluten free diet for over a month and her symptoms were gone. My diet did not contain a lot of obviously wheat products, so it was not that difficult to do a gluten free diet. Within 2 weeks the blisters went away and so did my bloating and diarrhea.

A few times when I inadvertently ate gluten (Chili's fries being one...) I bloated up and got ill. I didn

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Hi Peggy,

I read somewhere that IgA antibodies dissipate in about 2 weeks after you eliminate the offender (in this case gluten). Since your test was 4 months after eliminating it, I would think that a normal level would be expected as long as you followed the diet accurately. On the other hand, it said that IgG antibodies take about 6 months to dissipate. I also tested my daugter for these antibodies and confirmed that this indeed is the case with the lab that did the test (because it was 3 months after elminating gluten when we decided to run these tests). By the way, her IgG antibodies were also high to gluten, gliadin, rye, spelt, etc.

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i think that if you were IgA deficient that your test results would not come back normal, they would come back extremely low. i have a son that is IgA deficient. his test cam back saying .1, while the rest of us were .6, .7, .9, etc.

Ttg levels indicate intestinal damage---it appears that you do not have intestinal damage.

malabsorption can be caused by a number of things and it is important to find the cause of it because not all causes are treated the same.

regardless of what any test says, if you feel better gluten free, stay gluten free.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Food for thought......My son tested negative on his tTG from Enterolab and his blood work was positive for Celiac (tTG). I almost didn't have his blood tested because of his negative tTG from Entero. Enterolab is not published nor has it been repeated and reviewed by other physicians. I admire what Dr. Fine is trying to do, but I still think that there are some kinks to be worked out and that he needs to publish his studies this year or he will lose all credibility. They were supposed to be published the year before last, and then last year, and now this year, and so on. I hate to be a skeptic, but I think consumers, desperate patients and moms, need to be careful. Again, we did this, but I'm just not sure that I would bet my last dollar on it. Most MD's think Enterolab is a bunch of hooey, but granted, most MD's don't know didly squat about Celiac. For what it's worth, I wouldn't put all your eggs into the Enterolab basket. I'm sure you'll come out with an intolerance to them. :):)

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Hi Peggy,

I read somewhere that IgA antibodies dissipate in about 2 weeks after you eliminate the offender (in this case gluten). Since your test was 4 months after eliminating it, I would think that a normal level would be expected as long as you followed the diet accurately. On the other hand, it said that IgG antibodies take about 6 months to dissipate. I also tested my daugter for these antibodies and confirmed that this indeed is the case with the lab that did the test (because it was 3 months after elminating gluten when we decided to run these tests). By the way, her IgG antibodies were also high to gluten, gliadin, rye, spelt, etc.

Not with Enterolab, although quite true with blood tests. Enterolab goes directly to the source of the problem (the chowder chute itself), they can detect antibodies for a year or more after going gluten-free.

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Food for thought......My son tested negative on his tTG from Enterolab and his blood work was positive for Celiac (tTG). I almost didn't have his blood tested because of his negative tTG from Entero. Enterolab is not published nor has it been repeated and reviewed by other physicians. I admire what Dr. Fine is trying to do, but I still think that there are some kinks to be worked out and that he needs to publish his studies this year or he will lose all credibility. They were supposed to be published the year before last, and then last year, and now this year, and so on. I hate to be a skeptic, but I think consumers, desperate patients and moms, need to be careful. Again, we did this, but I'm just not sure that I would bet my last dollar on it. Most MD's think Enterolab is a bunch of hooey, but granted, most MD's don't know didly squat about Celiac. For what it's worth, I wouldn't put all your eggs into the Enterolab basket. I'm sure you'll come out with an intolerance to them. :):)

Maybe something was wrong. I do know when I cheated (I tried to eat just the top of lemon pie new years eve...) I bloated very bad, had cramps, D, and felt tired and sluggish. I am not heavy (or thin) and I lost my waist because I bloated so bad. The symptoms dissipated gradually for the next week. This happened before when I accidentally ate gluten with out realizing it. I know that being on a gluten free diet has made me feel good; my skin blisters disappeared, I stopped having chronic D and excessive gas. I lost 6 lb and lost my stomach (bloat) even though my overall calorie intake is up. The sores and build up of flaky dry skin on my scalp disappeared, only to reappear after my slip up.

Enterolab said my HLA gene analysis reveals that I have two copies of a gene that predisposes me to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

I have some damage to my intestine. Even though my Fecal Antigliadin IgA was a 9, I have to assume that I do have gluten intolerance. I put this together with my past history. Having doctors tell me I am stressed, that I have IBS and never finding what caused my problems.

Maybe the fact I was gluten light for a long time (stopped eating things that made me feel bad, without really realizing it) is the reason. I don


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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Go with what makes you feel good. If you have gone the medical route and feel better eating gluten free, I say go for it. Lots of fruits, veggies, nuts, and meats. Good luck.

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Maybe something was wrong. I do know when I cheated (I tried to eat just the top of lemon pie new years eve...) I bloated very bad, had cramps, D, and felt tired and sluggish. I am not heavy (or thin) and I lost my waist because I bloated so bad. The symptoms dissipated gradually for the next week. This happened before when I accidentally ate gluten with out realizing it. I know that being on a gluten free diet has made me feel good; my skin blisters disappeared, I stopped having chronic D and excessive gas. I lost 6 lb and lost my stomach (bloat) even though my overall calorie intake is up. The sores and build up of flaky dry skin on my scalp disappeared, only to reappear after my slip up.

Sounds to me like that's your answer: if you feel bad when you eat gluten and good when you don't, then why eat it, no matter what the tests say?

I'm more or less in the same boat as you; I didn't have any tests prior to going gluten-free, and by the time I tested with Enterolab 8 months later, even that came back negative. (But my fecal fat score was just below the cutoff, and I strongly suspect that it would have been positive if I'd done it sooner.) I spent some time feeling frustrated at the lack of a diagnosis, but I eventually came around to realizing that it didn't matter. (It might make my family take it more seriously, but that's another issue.) Gluten makes me feel bad; therefore I don't eat gluten. Exactly what would be different if I had an "official" diagnosis?

Jeanne

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Everybody is always looking for a firm CELIAC diagnosis, and therefore miss the important fact that the problem is gluten sensitivity, which can produce the same symptoms in many cases. Some people are now characterizing celiac disease as a subset of the much large gluten sensitivity. It has been suggested that perhaps as many as as 80% of people are to some degree gluten sensitive, while only a small number of that group will actually be celiac. So much is not known or fully understood about all this, but this big test is in the results of a gluten-free diet. If you feel bad and have certain symptoms while eating gluten, but you feel good and lose the symptoms when NOT eating gluten, you have the answer you really need: don't eat gluten. Without a celiac gene (or at least, without a gene that has been thus far identified as celiac related.....and it is felt not all such genes have been identified at this point...unknown ones undoubtedly exist), perhaps the most extreme reactions won't occur, but then again, maybe they well at some point. There ARE documented cases of celiac disease (confirmed by biopsy) in which a person does NOT have any predisposing gene whatsoever. So obviously, the identified genes are not always necessary to have celiac disease. The question is, if you have a means to feel better or to feel "normal", wouldn't you want to take it? Why continue to eat things that make you sick?


CAROLE

-------------

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.

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Thanks for your comments. I know you are correct. I cant even imagine going back to eating gluten. It is just frustrating not to get a confirmation in the diagnosis. I do plan to continue gluten free. I have it easier then a lot of people. My husband is very supportive, my daughter who lives in Houston too, is also on a gluten free diet, so we share information.

I am 50, and feeling better then I ever have, so no reason to change.

I made my first Pizza tonight. Not bad. My muffins are still the gluten free bread I enjoy the most.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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I know how you feel....many, if not most of us, really yearn to have an officially verified doctor's stamp of approval on the diagnosis, and we get doubtful if we don't get that. But really....all my endless amount of reading has convinced me that much or even most of the time, this celiac disease diagnosis is very elusive because MOST DOCTORS JUST DON'T HAVE THE KNOWLEDGE!!!! I'm currently reading a book that mentions what the medical training actually is in terms of nutrition....in some cases just one 3-unit course, in some universities NO nutrition courses are required. Sometimes celiac disease is barely mentioned in passing in the chapters on autoimmune diseases, and celiac is only discussed in terms of the most extreme of reactions, as if that is the ONLY possibility with celiac disease. Evenually, you will realize and be convinced that you just might be able to figure out a diagnosis on your own better than your doctor can! My own GP told me this: "Well now, you know more about celiac disease than I do!" He was right, too! What he knew would fit on the head of a pin! :lol:

Thanks for your comments. I know you are correct. I cant even imagine going back to eating gluten. It is just frustrating not to get a confirmation in the diagnosis. I do plan to continue gluten free. I have it easier then a lot of people. My husband is very supportive, my daughter who lives in Houston too, is also on a gluten free diet, so we share information.

I am 50, and feeling better then I ever have, so no reason to change.

I made my first Pizza tonight. Not bad. My muffins are still the gluten free bread I enjoy the most.


CAROLE

-------------

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.

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