Anyone Have Pos Test Results After Reintroducing Gluten?

[hikermom4]

Hi all,

I keep reading about the possibility of false negative tests after one has been on the gluten-free diet and then does the testing. My GI doc recommended adding gluten back in for 6 weeks then doing the blood work and endo. Has anyone had this work? I am willing to do it to get a proper diagnosis, because I am sick of being told that my symptoms are just caused by stress or eating too many fresh veggies. (And those comments are from doctors!) But I reacted after eating one half of a breaded piece of chicken (my first gluten in 6 weeks). Is it worth it?

thanks for taking the time to read this!

[ravenwoodglass]

Only you can decide if it is worth the pain. If your body reacts strongly to adding gluten back in you do have your answer whether your doctor acknowledges it or not. I had to do two challenges, one was done as part of the diagnostic process with my allergist (who guided me in an elimination diet) I reacted badly on the third day of the challenge and that doctor told me never to eat gluten again, I should have listened. I was then referred back to my GI doctor who demanded a second challenge as I had been gluten free by then for 2 months. The results of that challenge were very, very severe including a bad GI bleed. The GI finally diagnosed at that point. Given the choice I would not have done the second challenge but I was doing what I thought I had to do.

I should also note that even on a full gluten diet I had false negatives on blood tests. My new GI doctor said if I had stayed on gluten I would have likely been diagnosed by autopsy. He also said that he advises any patients who have celiac symptoms to go gluten free after testing as the body knows the answers that sometimes the tests don't.

If you can handle the challenge then do it but keep in mind that you could still have false negatives on testing. Sometimes our return to health will eventually convince our families. Mine was skeptical at first but when they saw the changes in me it was even enough for all of them to agree to testing six months after I was diagnosed. They all came back positive on blood work but had very few symptoms compared to me.

[hikermom4]

Thanks ravenwoodglass, that is good info. I too am trying to convince others to test. I am also trying to establish the family history for my son's doctors, so they will test him. He is 6 and already went through way too many tests at age 2 (apparently not for celiac), all inconclusive. My sister's blood work was negative, but her endo showed extensive damage; and still they did not diagnose celiac. She is off gluten and feeling great. After this challenge I will go back to being gluten free. If I get too sick I will stop. Before I went gluten-free, I was dizzy and faint, besides all the GI stuff; if I even approach that, it is over. I would just take my son gluten free without any diagnosis, but I am concerned about making sure the school system will respect his diet needs, and I think that here they do not unless a doctor signs off on it. I also don't want him to go through a life of being told it's all in his head, like I did. So here goes! Thanks for your support.

[sherrylynn]

Only you can decide if it is worth the pain. If your body reacts strongly to adding gluten back in you do have your answer whether your doctor acknowledges it or not. I had to do two challenges, one was done as part of the diagnostic process with my allergist (who guided me in an elimination diet) I reacted badly on the third day of the challenge and that doctor told me never to eat gluten again, I should have listened. I was then referred back to my GI doctor who demanded a second challenge as I had been gluten free by then for 2 months. The results of that challenge were very, very severe including a bad GI bleed. The GI finally diagnosed at that point. Given the choice I would not have done the second challenge but I was doing what I thought I had to do.

I should also note that even on a full gluten diet I had false negatives on blood tests. My new GI doctor said if I had stayed on gluten I would have likely been diagnosed by autopsy. He also said that he advises any patients who have celiac symptoms to go gluten free after testing as the body knows the answers that sometimes the tests don't.

If you can handle the challenge then do it but keep in mind that you could still have false negatives on testing. Sometimes our return to health will eventually convince our families. Mine was skeptical at first but when they saw the changes in me it was even enough for all of them to agree to testing six months after I was diagnosed. They all came back positive on blood work but had very few symptoms compared to me.

Ravenwoodglass, I was reading the info under your post. It said you were misdiagnosed with diverticulosis. Did they see the diverticuli? If they did see it, did the actual diverticuli go away. because that is an outpouching of the large intestines. My grandmother has this and she is also allergic to psyllium just like me. I wonder if she was able to be on the gluten free diet if the outpouchings (diverticuli) would go away for her as well.

Thnak you for all the help you have given me. everyone here has been sooo helpful. I am on day 2 of gluten free, and am so very tired. right now. Still hoping that I will get some relief.

[ravenwoodglass]

Ravenwoodglass, I was reading the info under your post. It said you were misdiagnosed with diverticulosis. Did they see the diverticuli? If they did see it, did the actual diverticuli go away. because that is an outpouching of the large intestines. My grandmother has this and she is also allergic to psyllium just like me. I wonder if she was able to be on the gluten free diet if the outpouchings (diverticuli) would go away for her as well.

Thnak you for all the help you have given me. everyone here has been sooo helpful. I am on day 2 of gluten free, and am so very tired. right now. Still hoping that I will get some relief.

The diverticulosis wasn't a misdiagnosis (that was poorly worded), I had diverticuli thoughout my entire large intestine. The GI doctor said it was the most extensive case he had ever seen. After I had been gluten free for a couple of years I had a repeat colonoscopy and they had almost totally resolved. I also can't do psyllium or flax don't know if that is related. It wouldn't hurt for her to try the diet but she should get blood tests first and an endo if she chooses to have one. Just make her aware of the chance of a false negative on testing.

I do hope you get some relief but it can take some time. Many of us go through withdrawl which can make us tired and moody so be gentle with yourself for a couple of weeks. Make sure you are dropping dairy also at least until you feel better. Many of us don't tolerate dairy until after we have healed. Try and go as whole food as you can. Hang in there and hopefully you'll feel better soon.