Biopsy Results Back.....

[suziq0805]

Doctor said there were not any signs of celiac disease in my biopsies. I almost cried. I actually wanted to be diagnosed. Even though being gluten free for the rest of my life wasn't something I was going to be excited to do, if it meant that I might not have flare ups of pain for the rest of my life it would be totally worth it. My doctor said he didn't want to rule it out yet though. I meet with him tomorrow to discuss things further. I have had some bloodwork done before and it was negative (not even borderline) but he said he wanted more done because there are other tests that could be helpful. I had been gluten free for a couple months last summer but had been in a 3 month gluten challenge and 15-25 biopsies were taken, so I felt that if celiac was there then they should have found something with that many biopsies right? Guess I'm just kinda bummed. I've been to Mayo to look into my pain (which as a musician makes it difficult/impossible to perform to the potential I have and as a music teacher some days are painful just to conduct 1 rehearsal a day). I was at Mayo 3 years ago and the diagnosis I got there was musculosketal pain....so not much of a diagnosis and had just given up on ever finding a reason why I suffer from this mysterious pain. Then we began suspecting gluten issues in my son and after learning about celiac I thought I had finally maybe come across an answer. I guess I'll see what the doctor says tomorrow, but I just have a feeling that it's not celiac after all

[Roda]

I'm sorry you didn't get the answers you were looking for. But let me ask you a question: When you were gluten free those few months did you notice any improvements? Even though all your testing is negative for celiac, it still doesn't rule out non celiac gluten intolerence. My son's allergist told me that you can do all the testing you want, but it won't show intolerences. The only real "test" is to do an elimination. I have done just that with my oldest son (repeated negative celiac blood work and negative biopsy) and have seen some improvements with him. His allergist feels that he needs to be gluten free anyway because his brother and I have celiac and some of his past symptoms. Give the diet a good three month try and see if you notice any improvements.

[suziq0805]

Well I went to my doctor appointment today and he diagnosed me with gluten sensitivity. My biopsy showed no sign of celiac, but my intestines are red which he said is not normal. He said gluten sensitivity can cause that. Autoimmune disease could also cause it he said, but he suspects a gluten issue. But I'm supposed to follow up with a rheumatologist for bloodwork every couple of years. I can get testing done through Prometheus he said, but he's very confident based on the biopsy that it's a senitivity instead of celiac. He said the Prometheus testing can also give him indications of a sensitivity. So we're debating whether to do that or not. The doctor didn't feel he needed it though. I'm also supposed to return to a neurologist for them to monitor my nerve issues. He advised me to go mostly gluten-free (a few bites of gluten a day are ok but i should mostly avoid it). He said that with someone who isn't celiac a totally gluten-free diet and lifestyle could possibly backfire long-term. He was talking about how some sensitivities can turn around at some point (he did not say that it WILL, but that it can). He's trained with some of the top celiac doctors in the country. I thought that even those with a sensitivity should be totally gluten-free too. Anyone have any sources to studies about how much gluten is ok for someone with a sensitivity and not celiac?

But I am happy that there is a chance I could get better and return to my musical activities at some point! I've been diagnosed with a couple other conditions that later turned out to be a misdiagnosis so I'll give the diet a try for at least 6 months and see what happens. He said a general rule of thumb is 1 month to heal for every year you've had a gluten intolerance.

[mushroom]

I would not be inclined to follow the doctor's cheating advice. Number one, I do not agree with him (but I am no medical lprofessional), but number two, how do you determine how much gluten you can handle if he is corrrect? If gluten really is the problem and you really do want to get rid of the pain, get rid of the gluten, period. MHO only.

One month of healing for every year of gluten intolerance --hmmm,, twelve months in a year....may not heal before I die...

[suziq0805]

I'm wondering if what he was getting at is that ingesting gluten wouldn't damage my body like someone with celiac disease. He said it wouldn't be putting me at risk for vitamin defeciencies or lymphoma like someone with celiac. He gave me a certain amount but it was kind of confusing. But he really seems to know what he's talking about so I wonder if there are studies out there supporting his opinion or not. I'm debating about going completely gluten-free anyway. Obviously gluten is causing me problems. If I make sure I'm getting vitamins and nutrients I don't see how being totally gluten-free could hurt me. If gluten really is behind all my symptoms then it's caused me years of misery. If there's a chance that my sensitivity could go away at some point that would be awesome but the problems I've had have affected my life in a big way at times and I don't know if it would be worth risking those issues again to see if I could tolerate a regular diet down the road. I'm definately severely limiting my gluten at the very least. I don't see how being totally gluten free while I decide what I'm comfortable with could hurt (unless I'd decide to go through with the lab testing). Here's the bloodwork I previously had...is there anything missing here?:

Tissue Transglutaminase IgA Ab 4.2 Range 0-19.9

Endomysial IgA Negative

Gliadin PEP Screen 6.5 Range 0-19.9

IgA 124 Range 70-400

[Skylark]

Above all, listen to your body. If you feel best 100% gluten-free that's how you need to eat. Your doctor doesn't live in your body, and while trying to desensitze to gluten would be nice, it's not clear that it works like an allergy where exposure is helpful. Most of the studies I've seen where people recovered gluten tolerance, it happened after they had been gluten-free for at least a couple years.

You WILL make mistakes on the diet and you WILL get CC'd accidentally. Most folks who are really sensitive figure it out with the mistakes. Folks who aren't ultra-sensitive stop worrying as much. My mom is non-celiac gluten intolerant and she can eat a little soy sauce or pick the croutons out of a salad without batting an eye. (Must be nice.)

[Roda]

My oldest son's GI doctor said the same thing about gluten intolerence. I told her in a polite way that I totally disagreed with her on that point. My husband also agreed with me. If you are going to go gluten free IMHO it is all or nothing. I do not allow my oldest son to cheet at all, that's not to say he hasn't had a CC accident though. I like to compare it to being pregnant. You can't be a little pregnant, you either are or you aren't. I would go completely gluten free.

[Skylark]

My oldest son's GI doctor said the same thing about gluten intolerence. I told her in a polite way that I totally disagreed with her on that point. My husband also thought the same thing. If you are going to go gluten free IMHO it is all or nothing. I do not allow my oldest son to cheet at all, that's not to say he hasn't had a CC accident though. I like to compare it to being pregnant. You can't be a little pregnant, you either are or you aren't. I would go completely gluten free.

It just depends on the person. Almost nothing in life is "all or nothing" including gluten intolerance. Mom is negative by blood and biopsy. She can honestly eat a little gluten and it makes no difference. She tried ultra-strict on my advice for a few months and went back to eating bits of gluten here and there because it just plain didn't matter.

What's with all the black-and-white thinking around the board this weekend? Is it mercury retrograde or something?

[Roda]

It just depends on the person. Almost nothing in life is "all or nothing" including gluten intolerance. Mom is negative by blood and biopsy. She can honestly eat a little gluten and it makes no difference. She tried ultra-strict on my advice for a few months and went back to eating bits of gluten here and there because it just plain didn't matter.

What's with all the black-and-white thinking around the board this weekend? Is it mercury retrograde or something?

I guess I got carried away with my thoughts when the GI said this to me. It was almost like she was trying to tell us it was allright to cheet once and awhile and it would be O.K. That's what I didn't agree with. I think I was so insistant because I didn't want my 10 year old to think it was alright to cheet. I don't usually think so black-and-white on most things. However, if he was to eat something either by accident or purpose, I don't think he would have the ramifications that his brother and I do. As for all of us, I'm the most sensitive, then youngest son, and oldest son the least sensitive as of right now. I even let him eat gluten free things that may or have gluten free oat contamination because he doesn't seem to react at all. I sure do and I don't let little brother consume them either since he got rashes from oats as a baby. I honestly don't know if he is oat sensitive or not, but not wanting to take the chance right now with him.

[mushroom]

I just think with gluten that you never know your tolerance, and if it becomes a habit, a little cheat here, a little cheat there, heck who's counting, and before you know it you are travelling the gluten highway

[Roda]

I just think with gluten that you never know your tolerance, and if it becomes a habit, a little cheat here, a little cheat there, heck who's counting, and before you know it you are travelling the gluten highway

This is exactly how I feel. You just were able to word it better obviously. This is not what I want to happen with me or either of my boys, hence why I am so adament on doing it, for a lack of a better term, "all or nothing." I'm not saying we are perfect. We still get an occasional CC accident or make mistakes.

[suziq0805]

I think my plan is tomorrow I'll look into making sure I have had all the bloodwork done to make sure it isn't celiac before I go too gluten-free. My doctor seemed confindent that it's a sensitivity, and I really do feel it's a gluten issue. I've been misdiagnosed twice before so for my own peace of mind I want to make sure everything is ruled out. With a negativie biopsy (15-25 samples taken) and negative bloodwork I'll feel ok with some gluten here and there as long as it doesn't cause me reactions. Sounds like I just need to find how much is too much for me. Thanks for the responses! I am excited that it finally looks like we have a diagnosis there could be hope that this pain could lessen or disappear with some time.