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confusedks

Eat Gluten Before Tests?

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Ok, I have been gluten-free since May 1 of this year. I had blood tests ordered in November of last year and they came back fine, but my dr ordered every test EXCEPT the ttg and ama (i think thats right.) We are waiting for new insurance, so it may be a couple weeks until i can get to the GI Dr. I guess my question is should I go back on gluten, now, keeping in mind I have finals in about 2 weeks, or should I wait until school is out (so I can TRY to handle being glutened EVERY DAY without having to worry about school and concentrating)? Also, if I go back on gluten, do I realllllly HAVE to be on it for months to get positive biopsy? Thanks for responses in advanced.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Kassandra,

If they didnt run the tTG or EMA...and you plan on getting retested you may want to be back on gluten for more than 2 weeks for accurate results.

You do need to be back on gluten for a few months (at least) prior to the biopsy. Even if the biopsy is negative....you may still have Celiac. The biopsy is "hit or miss".....and alot of times they miss.

If a firm diagnosis is important to you...I would recommend 2-3 months back on gluten before retesting. If the diet is working and symptoms are too unbearable while on gluten...I wouldnt put myself through all that. I'd just stick with the diet.


Rachel

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Ok, I have been gluten-free since May 1 of this year. I had blood tests ordered in November of last year and they came back fine, but my dr ordered every test EXCEPT the ttg and ama (i think thats right.) We are waiting for new insurance, so it may be a couple weeks until i can get to the GI Dr. I guess my question is should I go back on gluten, now, keeping in mind I have finals in about 2 weeks, or should I wait until school is out (so I can TRY to handle being glutened EVERY DAY without having to worry about school and concentrating)? Also, if I go back on gluten, do I realllllly HAVE to be on it for months to get positive biopsy? Thanks for responses in advanced.

Kassandra

Please do wait till after finals if you feel you have to do a challenge to satisfy your doctors. It sounds like you already know gluten is a problem, are you having issues still that might mean something else is going on? If that is the case being gluten free will not mask any symptoms or test results other than the ones for celiac. If you are planning on challengeing just to 'prove' to the doctors that this is medically needed be sure to keep them informed of any violent reactions like seizures, bleeding, etc that may appear.


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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Yes, you do have to eat gluten for that long for any chance of an ACCURATE test.

All that being said: if you do better on the diet, you do NOT need to do anything you don't want to do. My drs didn't do the right tests, and did the biopsy while I was gluten-free. Other drs have tried to make me go back on gluten and I refused to---because I get so violently ill. Weigh the benefits and the risks of it...but keep in mind, you don't have to do it if you have reservations about it.

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Can anyone tell me how much gluten you need in your diet before the endoscopy and how fast the intestine is likely to heal if your gluten intake is minimal?

I was told before the test to make sure I eat gluten, and the recommended way was to eat a slice of bread per day. I don't eat bread very often and I just thought I'd carry on with my regular diet which contains gluten anyway. I eat pasta at least twice per week, and numerous other items which I know contains the stuff, but my appetite is quite weak and I fear that I might not have been eating enough.

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Can anyone tell me how much gluten you need in your diet before the endoscopy and how fast the intestine is likely to heal if your gluten intake is minimal?

I was told before the test to make sure I eat gluten, and the recommended way was to eat a slice of bread per day. I don't eat bread very often and I just thought I'd carry on with my regular diet which contains gluten anyway. I eat pasta at least twice per week, and numerous other items which I know contains the stuff, but my appetite is quite weak and I fear that I might not have been eating enough.

You need to be eating the equivalent of about four slices of bread for several months before a biopsy to have any hope of it being accurate.

So, while it is possible that your biopsy will be positive, it may also come back false negative, due to you not eating a lot of gluten.

Why don't you just try the diet and see how you feel?

Kassandra, you definitely shouldn't do a gluten challenge before finals, you might not make it through.

Personally I think a gluten challenge is a terrible idea. Your villi have healed, you feel much better. Now you are thinking of destroying your villi again on purpose, which may lead to getting bowel cancer down the road, definitely nutritional deficiencies, and can cause irreparable damage, just to prove you have celiac disease, even though your diet response has already proven that you can't tolerate gluten.

Would your doctor also order a diabetic to purposely eat a ton of sugar and carbs to the point of going into a coma (which may kill him), just to prove he has diabetes? Of course not, he'd rightfully be sued with malpractice. I don't think telling somebody who gets violent reactions to gluten to go back on it to destroy their villi again, making sure that person gets malnourished just to satisfy his curiosity is every bit as bad. It could also kill you, and I am NOT exaggerating.


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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You need to be eating the equivalent of about four slices of bread for several months before a biopsy to have any hope of it being accurate.

So, while it is possible that your biopsy will be positive, it may also come back false negative, due to you not eating a lot of gluten.

Why don't you just try the diet and see how you feel?

Now I have had the endoscopy I shall try the diet. I certainly won't let the biopsy results determine whether I give the diet a chance.

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