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Yellow Rose

Testing Question

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My uncle has been talking with my mother who after my urging went off gluten. He had the same D symptoms and has had wonderful improvement. Now he told my mom that he is going to be tested. I told her he has to go back on the gluten for the tests to come out right. She wants to know how long should he go back on the gluten before testing.

Thanks,

Yellow Rose


27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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Celiac.com Sponsor (A8):

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Why would your uncle not just be happy to have found the problem and leave it at that? I don't know how long he has been gluten-free. But his villi will have healed a great deal, and he is planning on destroying them again, for the sake of testing. In some people that will cause such a shock to the system that it results in severe, permanent damage and could trigger other autoimmune diseases.

It would take at least three to six months back on gluten (the equivalent of four slices of bread a day) to even have a chance of testing positive. And even then he may get a false negative.

If the tests are negative, would he just continue eating gluten again, or go back to being gluten-free anyway?


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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Why would your uncle not just be happy to have found the problem and leave it at that? I don't know how long he has been gluten-free. But his villi will have healed a great deal, and he is planning on destroying them again, for the sake of testing. In some people that will cause such a shock to the system that it results in severe, permanent damage and could trigger other autoimmune diseases.

It would take at least three to six months back on gluten (the equivalent of four slices of bread a day) to even have a chance of testing positive. And even then he may get a false negative.

If the tests are negative, would he just continue eating gluten again, or go back to being gluten-free anyway?

Just talked with my mom and he has been off about a month, the D has gone away. He has real bad health problems probably due to Celiac's. I read her your reply and she didn't think he would be willing to go through 6 months of D again. My mom went off before testing and her Dr. told her that she was sensitive to wheat but not Celiac however, she did have the antibodies. I told her he was an idiot and didn't know what he was talking about that if she had the antibodies she had Celiac just like I did. She is going to talk with my uncle and recommend that he just to do the no gluten thing and be done with it. Thanks for the fast reply.

Yellow Rose


27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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If he really needs something on paper to be totally compliant he could think about doing antibody testing with Enterolab. He would not need to eat gluten for the testing and they can also test for casien, soy, egg and yeast antibodies if there is felt to be a need.


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 told her he was an idiot and didn't know what he was talking about that if she had the antibodies she had Celiac just like I did.

Really what else counts?

I look at it this way...

If I get a chest biopsy and its negative for cancer does that mean i keep on smoking until its positive?

The whole basis of the biopsy is you damage a important organ so someone can see it's damaged... if you are reacting to the protein and producing antibodies this seems as stupid as keeping smoking until you have lung cancer IMHO...

Non celiacs do not produce antibodies... regardless of if the damage is visible you are causing harm. I think you are 100% correct.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Well I just got off the phone with my Uncle and convinced him not to test. He is happy to not have the D problem and will just stay off gluten. Thanks everyone.

Yellow Rose


27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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