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HELP! I need some encouragement or advice. I have ordered a test, biocard..and should be getting it twelve days from now. I am supposed to Gluten up.

However, Not sure what allergy (gluten, milk, etc..)

But, I am so Ill (nausea) that I hardly want to eat anything.

I am so tired of the fullness, bloating, pain..that It is taking all i can

to go one step further! I could almost stop eating all together. seriously.

I know i should take this test, however I just want to only eat healthy/mild

foods....but, I can't for 12 more days :(

How many of you gave up on your diagnosis, and just changed your diet?

Is there hope? I am so sick of being sick/along with Fibro that I am losing steam...

Any advice appreciated, I am in tears from being sick for 20 years,

but now it has got to the point I just don't really want to eat at all....

Thank you!!

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If you think you can stay strict and compliant with the diet without a diagnosis then start the diet. If you need a diagnosis wait. Do know that if you go gluten free before testing and then decide you want a diagnosis you will need to go back on gluten for 3 months or so to have any chance of a accurate result. Even then there is a chance of a false negative.


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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If you think you can stay strict and compliant with the diet without a diagnosis then start the diet. If you need a diagnosis wait. Do know that if you go gluten free before testing and then decide you want a diagnosis you will need to go back on gluten for 3 months or so to have any chance of a accurate result. Even then there is a chance of a false negative.

I agree..that is what happened. I stopped for 3 weeks and then had to gluten

all back up :(

I need to keep my eyes on the prize (this test) but feel so bad..

just want to eat really healthy. ARGH...

I don't look forward to pizza and bread.

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im so sorry- and i feel your pain.

to answer your question about giving up- i probably would have if the doc had actually put me on a proper gluten challenge. when i did mine- my GI put me on a 2 week/4 slices a day challenge (which i am assuming now is not adequated enough). my gut cramping & bloating was ruff- but manageable. my ANXIETY however was NOT MANAGEABLE. by my blood draw appt after 2 weeks- i had HAD IT and was never more eager to have my blood taken in my life- i practically bit my doc's head off- saying "i dont care what you or the results say- i am DONE with gluten".

if he had prescribed me longer than 2 weeks, it's quite possible i would have quit. so i sympathize with your frustration.

ps- if you can hang on i would. i ended up going back on and off gluten, untill i got a gene test & self diagnosed, and then got DH. i needed some kind of dx to adhere to the diet. ??


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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If you think you can stay strict and compliant with the diet without a diagnosis then start the diet. If you need a diagnosis wait. Do know that if you go gluten free before testing and then decide you want a diagnosis you will need to go back on gluten for 3 months or so to have any chance of a accurate result. Even then there is a chance of a false negative.

Exactly. I'm sorry you're so sick. It does sound terrible. :( If a diagnosis is important, hang in there. Otherwise you can stop, but you have to assume you're celiac.

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im so sorry- and i feel your pain.

to answer your question about giving up- i probably would have if the doc had actually put me on a proper gluten challenge. when i did mine- my GI put me on a 2 week/4 slices a day challenge (which i am assuming now is not adequated enough). my gut cramping & bloating was ruff- but manageable. my ANXIETY however was NOT MANAGEABLE. by my blood draw appt after 2 weeks- i had HAD IT and was never more eager to have my blood taken in my life- i practically bit my doc's head off- saying "i dont care what you or the results say- i am DONE with gluten".

if he had prescribed me longer than 2 weeks, it's quite possible i would have quit. so i sympathize with your frustration.

ps- if you can hang on i would. i ended up going back on and off gluten, untill i got a gene test & self diagnosed, and then got DH. i needed some kind of dx to adhere to the diet. ??

TY for your kind response and support!!..It sure helps.

Today is better :-) They just said they shipped my biocard, so 10 more days to go to load up.

Even if it says negative, I will back waaay off gluten~ and eat clean.

Thx again!

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Exactly. I'm sorry you're so sick. It does sound terrible. :( If a diagnosis is important, hang in there. Otherwise you can stop, but you have to assume you're celiac.

Ty, Ty!! appreciate the advice :-) still hanging' in there....

will let you all know :-)

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You've come this far - try to hang in there. I feel for you. I wasn't gluten-free before my test as I quite eating. I would look at food and think which was worse, eating & pain or not eating & hungry. I went for the not eating & hungry so understand where you are at. If this is important then keep going. When you wake up in the morning it will only be 9 days left! I'll be thinking about you.

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Personally since you've already started with gluten I would just hang in there! We're doing a 3 month gluten challenge and I have thought many times about just giving up and forgetting about it but, we're 1 month in already and I feel like if we bailed now the last month would be such a waste. Knowing that we ate all that gluten for nothing would make me crazy :P


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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