Doc Says To Go gluten-free Without Biopsy Results

[megaloly]

Hi,

I just got my endoscopy done on Thursday. I had gone on a gluten-free diet for 2 months before getting tested on some uneducated advice and had to go back on for my endo. I started 8 weeks out but had such a strong reaction the first 2 days that my GI moved my test up by 4 weeks. She said there was no visible villi damage but there was some redness in my stomach and my intestines, that she took a lot of samples and to go back on a gluten-free diet. I called the next day to make sure that I had understood clearly since the GI said she couldn't see any villi damage. The medical assistant said that 'usually' the biopsies are conclusive and that 'hopefully' I won't have to start over and that I should go gluten-free in the meantime. I won't get my biopsy results back for 2 weeks from last Thursday and I really don't want to have to start the process over, I'd kind of rather stay on gluten until I get a definite answer. I know me, I will be fine for a year or two but I will need a definite diagnosis to do this for the rest of my life. Does anyone have any thoughts on whether or not to go gluten-free while I wait for the results? Does taking a biopsy from areas of redness almost guarantee a definite positive biopsy? I understand they can't give me an answer they don't have but they aren't great at explaining things. They are the only GIs in my town and I am really frustrated!

[MitziG]

Well, if they have done bloodwork and biopsy, there isn't any other tests to do to confirm celiac. Either it will show it or it won't. So there isn't any reason to keep eating gluten unless you insist they do another biopsy in 3 or 4 months- which still may not show anything.

But...since going back on gluten made you so sick, isn't it rather obvious that you need to be gluten free, whether you are dx as a celiac or not?

My advice is to listen to your GI, who appears to have her ducks in a row, which is unusual for doctors. Gluten makes you sick. Don't eat it any more. Whether you have celiac disease or not.

[MitziG]

Also...you do understand that you may NEVER get a celiac dx? Gluten intolerance can't be tested for- and you obviously have at least that.

[megaloly]

I understand that, but I have read in other posts here that 6-8 weeks is recommended for a gluten challenge, and preferably 8 weeks. Would 4 weeks be enough to show any damage? And what if my symptoms, feeling 'loopy', involuntary muscle movement, weakness, and loss of balance, come from something else? They come and go, my blood work was negative, and the gastro symptoms I experienced only lasted for a few months and then disappeared before I went off gluten. Sorry I didn't include all that before, but I was trying not to go on too much. I'm just wondering if the visible redness will definitely contain damage to the villi; if there will ever be any to be found.

I would like to let my sisters know if they have any need to screen themselves or their children as well.

[mushroom]

The inflammatory response is the body's method of healing. Even if you have a skin cut, there will be inflammation surrounding it as it heals. So most injury to the body's tissues starts out with inflammation as a response. You have, apparently, some inflammation. Whether that inflammation has progressed to the point where the gluten has done more than produce an inflammatory response no one can know, except the pathologist who reviews the slides of your biopsies. Even if he does not find any typical celiac damage (scalloping, flattening of the villi) it would be worth your while to try eating gluten free and see what happens. You certainly can, if you wish, continue gluten for another 4-8 weeks to try to get some additional response if none is forthcoming at this time, but it is also perfectly possible that you will have nothing but inflammation at the end of that period because you are not celiac. Being non-celiac does not mean (unlike the former interpretation) that you can eat gluten; it just means that you did not pass the celiac test. More gluten intolerants fail the test than pass it, at a rate of approximately seven to one. Fact of life. Many of us do not get a diagnosis. Fact of life. Many of us have to have enough respect for our health to know not to eat gluten and live with the knowledge that we are at least not harming ourselves and, as an added bonus, we feel better. .

[megaloly]

Thank you both for your responses, what you're saying makes sense. I know I'm a little high-strung right now from feeling sick and the anxiety of waiting. I appreciate you taking the time to respond.