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Does It Really Count?


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6 replies to this topic

#1 patz16

 
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Posted 04 May 2012 - 02:54 PM

So my mother told me to ask this. We would like to know if I still need to go on a glueten diet for a whole month to get tested. I have been on a glueten free diet for only a month, and so we're wondering if I can still get tested like this since I have only not had glueten for a month. Would I only have to go on a glueten diet for 2 months or just one? Or would I have to do the full 3 months?
I think the reason we are hesistant to do the testing for a whole 3 months is because of how badly off a month ago, and because this is my junior year and I need to finish my community service hours, take the SAT , ACT and apply to colleges ect. I'd ike to hear from everyone else. What would you do in this situation?
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Toughing it out on a 2 year doctor hiatus. I give up.

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#2 mushroom

 
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Posted 04 May 2012 - 03:35 PM

The going back on gluten to be tested is a very personal decision which has been faced by many here. Is it really worth all the extra pain and the extra damage, undoing what good you have already done? Sometimes people will talk to their doctor and tell the doctor they are going to do a gluten challenge. And then have the doctor document the effects of eating gluten. You may not get the celiac diagnosis, but if you can get a doctor's note saying you must not eat gluten, that you are at the very least non-celiac gluten intolerant, that could be just as good as far as the college authorities are concerned. You would need to discuss this up front with any college you apply to and opt out of the meal plan, maybe find one that will give you a fridge and microwave in your room. Be up front about it, and if you have a letter from your doctor they may accommodate you. Get the doctor on your side in all this.

I personally would not do a challenge. But then I was a lot older than you when I figured it out and couldn't tolerate any more damage. But I don't believe that anyone should have to damage themselves to get a diagnosis. That's like saying if you haven't attempted suicide how can you be suicidal? :unsure:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 mushroom

 
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Posted 04 May 2012 - 03:52 PM

So my mother told me to ask this. We would like to know if I still need to go on a glueten diet for a whole month to get tested. I have been on a glueten free diet for only a month, and so we're wondering if I can still get tested like this since I have only not had glueten for a month. Would I only have to go on a glueten diet for 2 months or just one? Or would I have to do the full 3 months?
I think the reason we are hesistant to do the testing for a whole 3 months is because of how badly off a month ago, and because this is my junior year and I need to finish my community service hours, take the SAT , ACT and apply to colleges ect. I'd ike to hear from everyone else. What would you do in this situation?


Just noticed that I did not address your specific questions. Depending on your sensitivity and degree of damage it MIGHT still be possible to get a positive test - stranger things have happened - but it is not likely. If it had only been for a week I would say yes. The recommended time to be on a full gluten diet is two to three months, depending on who is talking, eating the equivalent of 3-4 slices of bread per day.. The longer you stay on it the more likely the test will be positive if you are in fact celiac. I do not believe just one month on gluten would make any difference since you have been gluten free for a full month. And yes, the things you have to do this summer are important.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 Christine0125

 
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Posted 05 May 2012 - 11:49 AM

I did a 2 week challenge after a month gluten free and it was enough for a positive test.
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#5 mushroom

 
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Posted 05 May 2012 - 12:13 PM

I did a 2 week challenge after a month gluten free and it was enough for a positive test.


It can happen, there are no absolutes. You are one of the lucky ones. In fact you may not have even had to do the challenge. As I said to the OP, it is within the realm of possibility that she could get a positive test now.. It is more likely that she would not. And the time to redamage is individual to each person. The guidelines are to try to make sure that all those who do have celiac disease will test positive. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 pricklypear1971

 
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Posted 05 May 2012 - 12:18 PM

Tread carefully.

If you have an uber- conservative and ill-informed doctor who thinks testing one month gluten-free is likely to be ACCURATE and wants to dx you this way then I suggest you find a new doctor.

You will, without a 2-3 month challenge, more than likely test negative. Then what will the "record" say? You're negative. Not "unknown". Negative. Because that doc is too ignorant to know the tests are inconclusive.

My advice - look for a doctor who will dx you as-is if yours won't. Then, if all else fails, try a challenge. You probably won't be able to do it if your symptoms are that severe. You'll still end up with the same dx - either Celiac or NCGI.
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Probable Endometriosis, in remission from childbirth since 2002.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 Cara in Boston

 
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Posted 06 May 2012 - 08:27 AM

After a very positive blood test, I was gluten free for about 2 weeks. After that, I tested negative. After a 3 month gluten trial (doctor suggested LONGER but I felt too yucky) I still tested negative. I stopped after that and went gluten free. My son has celiac (diagnosed by blood and endoscopy) and since I had all the classic symptoms (that disappeared when gluten-free), and a positive first blood test, that was all the information I needed. Doctor ended up diagnosing me with "gluten intolerance" since he didn't have "evidence" for Celiac. Whatever.

If you are going to do it, I would suggest doing it right (3-6 months, the longer you make it the better chance at an accurate test) and try in the summer or when you can afford to be ill frequently.

I agree, you doctor does not sound like he/she knows much about Celiac - find a new doctor too.

Cara in Boston
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