Worried About Diagnosis After Being gluten-free

[Jeagbenne]

Hello there,

I haven't been definitively diagnosed with Celiac disease but after testing positive for gluten sensitivity by Enterolab I went gluten free last august and saw amazing results. I went back on gluten during December and back off of it in january and again the difference was amazing. Now it's March and I finally got my health insurance and I'm seeing a GI for a definitive diagnoisis. Since I've been gluten-free on and off for about six months in the last year I'm worried about what he'll find. He's reccommended me to back on gluten for about 30 days before he does a small bowel biopsy. What I want to know is, how long does it take for your small intestine to heal up to the point that they don't find anything? Do you think that a month back on gluten will show enough damage? I'm so sick of going on and off gluten. I know that it makes me feel better when I'm not eating gluten but I want to be absolutely sure what's wrong with me. While most of my symptoms dramatically improved, I was still having abnormal stools off gluten, which is why he also wants to do a colonoscopy. Can anyone out there help me out on this?

Thanks,

JGB

[Guest nini]

OK, here is MY opinion for what it's worth...

You already have your answer. You DO NOT need to go to a GI for further testing. You know that gluten is bad for your body and therefore you are gluten intolerant. THE ONLY REASON FOR THE BIOPSY IS TO CONFIRM VILLOUS ATROPHY. The biopsy can only confirm a dx of Celiac IF there is visible damage. It can NEVER be truly negative because of so many factors, sampling rate, lab interpretation, early stages of celiac with minimal damage and on and on.

I went on and off gluten for several years because I was trying to figure out why I kept having miscarriages, I was able to carry my daughter, but only after a very complicated pregnancy and I was eating LOTS of gluten foods... I made the mistake of not listening to my body. I had friends tell me that "you know that gluten is the problem, why do you keep eating it?" and my answer was that I wasn't ready to know... I did not want to change the way I ate. I was stubborn. That attitude very nearly cost me my life. By the time of my actual dx, I was a very ill person. I wish that I had listened to my body much earlier. Since I have been gluten-free, my health has improved dramatically. I'm coming up on my three year anniversary of being gluten-free.

What I'm trying to say is DO NOT DOUBT YOURSELF. You know the answer already. Positive Dietary Response is THE MOST VALID diagnostic tool that there is. Blood tests and biopsies and stool tests can only confirm it, IF they are positive, and I repeat, they can NEVER completely rule it out.

Gluten Intolerance is treated the same as Celiac (lifetime adherance to the gluten-free diet) And the only difference between the two is that one you have confirmation your intestines are damaged. I never had the biopsy. I KNOW my villi were gone. The symptoms I had were so bad that is the ONLY explanation.

Don't waste anymore time going back and forth with the diet and going to specialists for THEIR OPINION. Do what makes your body feel the best and that is avoid gluten at all costs.

Yes with your yo yo ing on this diet, any tests you have will be skewed, and while you MAY have a positive result on your tests, you MAY not... and you will have wasted that much more time in going gluten-free.

Based on my symptoms, my Dr. advised me to go gluten free BEFORE he even knew the results of my blood test. He had asked me during the consult "have you ever tried the gluten free diet before?" me, YES "and how did you feel while on it?" me, BETTER "then you already have your answer. I'm 99% positive that you have Celiac, so I want you to start the diet IMMEDIATELY"

So, don't wait one more day, don't eat gluten just for a test...

oh and a Celiac Expert that spoke at our support group meeting said that in her GI practice, if someone comes to her suspecting Celiac, and they are already on the gluten-free diet and doing better, SHE NEVER PUTS THEM BACK ON GLUTEN FOR A STINKIN TEST!!!!!!!

[Jeagbenne]

Thank you so much for your reply. My thinking is along the same as yours. I don't want to go back on gluten, and my family and husband don't want me to go back on it either. My husband tells me he sees such a dramatic difference even in my personality when I'm on or off gluten. His biggest fear is that this test will come back negative and I'll go back on gluten.

I love the gluten free diet, not only the foods I get to eat but the way it makes me feel. I like eating gluten-free better than the "normal" way of eating.

But, in defense of my GI, he was the first to warn me about going back on gluten. He told me all about possibly having negative tests and how hard it can me to go back on gluten. But even when I was gluten-free I was having strange symptoms "downstairs" and he's concerned about them. He wants to do a complete workup on me, not only testing for Celiac but other things as well. I think his point of view is that by me going back on gluten by the time he starts doing colonoscopies and biopsies he'll have a complete picture of what is going on. My biggest fear isn't the test being negative, I'll be gluten-free after all this for the rest of my life no matter what he says, because you're right- the best indicator of what is good or isn't good for you is what your body says, not the doctor. My biggest fear is that there is something else wrong, something more serious. Colon cancer and all sorts of GI problems run in my family and although I'm only 26 I'm afraid of what they'll find.

Thank you again for your reply.

JGB

[Guest nini]

you can continue to have him look for other things, if you are THAT concerned about it, but you DO NOT need to go back on gluten. You already have that answer.

My husband noticed an immediate difference in my personality and general health after I went gluten-free...

You have to know that the AVERAGE time for healing is two years, but it can take even longer, so the fact that you were still having some symptoms after being gluten-free, could be indicative of several things, 1) you are still in the early stages of the healing process, it takes a while for things to return to normal many Dr.s think six months is a reasonable time frame, it is not. Average is two years. 2) You may still be getting hidden gluten in your diet somehow, from cross contamination in your house or in restaurants or with your personal care products like shampoos and makeups 3) you may be having problems with dairy. many celiac's are lactose intolerant because the tips of the villi is where your body digests lactase... if the villi are flattened, it makes sense if you are lactose intolerant, you may need to eliminate dairy for a while.