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Does It Really Count?

patz16

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patz16 Rookie
patz16
Posted

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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mushroom Proficient
mushroom
Posted

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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mushroom Proficient
mushroom
Posted

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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Christine0125 Contributor
Christine0125
Posted

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

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mushroom Proficient
mushroom
Posted

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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pricklypear1971 Community Regular
pricklypear1971
Posted

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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Cara in Boston Enthusiast
Cara in Boston
Posted

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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