Should I Wait?

[bethieb]

Hi! Newbie here. My doctor had me on an elimination diet for two weeks to "heal my gut" while waiting for results of some food sensitivity testing. I avoided gluten during that time. She is now sending me for a gluten panel and told me to eat bread and pasta, etc. She said that 2 days would be enough. Thoughts? I'd hate to get onto the wrong track because of this, but do want answers. Thanks.

[mushroom]

Hi bethieb. Gosh, I am sorry you find yourself in this position. I rail on and on about doctors who do this!! Why don't they test for celiac disease first!!! while you're still eating a full gluten diet. After two weeks gluten free, yes your gut will have healed some, and also the antibodies to the gliadin (protein component of wheat) will have done a bunk because they were no longer needed. And no, I don't think two days will be enough to bring them back and redamage your gut. It is really hard to guestimate how much you have healed during that time and how much gluten you would have to intake for how long to get back to where you were. If you had been totally gluten free, the advice is the equivalent of 3-4 slices of bread per day for at least two months. In your case, I really don't know; but I do think that with only two days you will end up negative for sure and the test will not tell you anything. If you have been suffering for years with drastic symptoms you might still have a chance of a positive test. But it is common to find doctors making these recommendations and then saying, no, you don't have it

I really don't know what to tell you, unless you want to put in the two months

[Cara in Boston]

I had a very positive blood test. Went gluten-free to see if it worked (I know, everything I read said not to, but I couldn't resist). When I went to see the GI I had only been 10 days gluten-free. He ordered an endoscopy and took more blood - said 10 days would not make a difference. Went home and ate wheat for 2 days.

Blood test and endoscopy were negative.

I am convinced I have it but now, if I want at least a shot at an accurate test, I have to wait 3 months. I am very impatient and the waiting is torture.

My doctor says he treats a lot with celiac disease and had never seen "healing this fast." He is not convinced that the original test was accurate, but I am. I have had multiple symptoms for last 5 years and my younger son has recently tested positive as well.

You can start testing if you want, everyone is different so it may come out positive. But if it is negative, you really won't be any closer to an answer than you are now.

[bethieb]

Thank you, this is what I was afraid of. I hoped that because I was only gluten free for two weeks that it would be ok. I do not have major symptoms, but because my thyroid testing came back with Hashimoto's combined with other symptoms the testing was recommended. And I felt so much better after the elimination diet

Here's the part that upsets me most... I can feel the difference eating the gluten makes. I'm sure that's what scares you Cara in Boston... and i question whether a diagnosis is truly needed when the treatment is diet anyway. My husband thinks it is important, I think there is a part of him that thinks the whole leaky gut/food sensitivity thing is hooey and he needs the diagnosis to believe.

I'll give it a bit longer and continue to eat gluten until the results come back. If they are negative, I will eat gluten for a longer time and then get tested again. This way I won;t end up in the same boat. Good plan?

[Cara in Boston]

I really want a clear diagnosis because that, and only that, will convince my family to get tested as well. Also, I feel like it would be important (more credible?) to have it included in my medical record so if I develop symptoms of some other, related condition, any doctor would know my complete and accurate history.

That being said, I am almost at the half-way point of the gluten challenge and I am going to ask my doctor to do another blood test. No one seems to know for sure how long it takes to show up again in your blood - it could be much less than three months. If it is there, great, I'll be done. If not, I'll go 6 more weeks and try one last time. (I've delt with the symptoms for 5 years now, what's another 6 weeks?) If there is no change I will just do the diet on my own. (actually, with my son after his endoscopy on 4/6)

I imagine that the challenge time after such a short gluten-free period wouldn't need to be as long as someone doing a challenge after years of being gluten free. Right?

I am so looking forward to feeling good and having lots of energy. It feels like the "cure" is right there, almost in my grasp and I just need to be more patient.

Also, after all the books I have read, gluten kind of grosses me out now. My husband was saying, "at least you get to enjoy your favorite foods a little longer . . ." but it is actually kind of hard to eat them now.

Cara

[ravenwoodglass]

Thank you, this is what I was afraid of. I hoped that because I was only gluten free for two weeks that it would be ok. I do not have major symptoms, but because my thyroid testing came back with Hashimoto's combined with other symptoms the testing was recommended. And I felt so much better after the elimination diet

Here's the part that upsets me most... I can feel the difference eating the gluten makes. I'm sure that's what scares you Cara in Boston... and i question whether a diagnosis is truly needed when the treatment is diet anyway. My husband thinks it is important, I think there is a part of him that thinks the whole leaky gut/food sensitivity thing is hooey and he needs the diagnosis to believe.

I'll give it a bit longer and continue to eat gluten until the results come back. If they are negative, I will eat gluten for a longer time and then get tested again. This way I won;t end up in the same boat. Good plan?

If you react strongly to adding gluten back in let your doctor know right away. When I was diagnosed I was under treatment by my allergist, I show false negatives in blood work, anyway the allergist had me on a very strict elimination diet and I added gluten back in as the second item. I had been gluten free for about 3 weeks at that point. I became very ill on the 3rd day of the challenge. He stopped the challenge and referred me back to my GI. I then finally got diagnosed.

If you have been very ill for a while and the diet helps you it should become obvious to your loved onesthat you are doing much better gluten free. They will also see what happens when you accidentally get gluten. Sometimes that in itself is pretty convincing for them.

Only my opinion, but rather than staying on gluten, (since you have already felt better off it), it might be better to go back to gluten free after testing even if the tests are negative and let your (hopefully) improved health and well being prove it to your husband.

It may end up being a moot point. If your antibodies were at a high enough level you may still have a postive test. Be sure to get a copy of the results as some doctors will call a low positive a negative but a positive is a positive.