Need Some Opinions

[Guest thatchickali]

So I was diagnosed after seeing an allergist who told me "enterolab is the most accurate way of testing". He himself had a negative blood test and biopsy, but positive results from enterolab.

So I then got tested by enterolab and I had the elevated antiglandin levels or whatever it's called. (I was positive for gluten intolerance) I called the allergist who said he doesn't treat it so he wouldn't see me again or even "diagnose" it.

Called the gastroenterologist, told her "enterolab says I have celiac disease", she also would now "diagnose" it but did tell me to just follow the gluten-free diet and when I feel better to start going off my IBS medications.

Well I'm not feeling better, and now my general physician and my dietitian, and my psychologist and my gastroenterologist are ALL doubting that I have celiac disease. They think if I'm not better by now that it's not Celiac. But on here there are PLENTY of people who took forever to feel better. My mom works with someone who it took him a year to feel better but now he does....and he didn't have any other intolerances, just took a long time to heal.

I'm only 2 months into this.

The GP wants me to get the gene test because it can "rule out" the disease but it doesn't "rule it in".

What are your thoughts. I know that was messy but I'm SO incredibly confused.

[buffettbride]

What are your thoughts. I know that was messy but I'm SO incredibly confused.

I don't blame you for being confused! Just reading your post was confusing. The gene test wouldn't hurt, because then you could see if you're predisposed to be Celiac or not. If you don't have a Celiac gene, then maybe continue persuing other possible diagnosis (I firmly believe IBS is BS...).

Perhaps you could try the BRAT diet (bananas, rice, applesauce, toast) except in your case it would just be the "BRA" diet since toast would be a no-no unless you have a gluten-free bread that you like. It's boring, but it really does work to help to kind of reset your system. Stick with just drinking water for a few days and maybe give your body a few days to rest. Then look at eliminating dairy, soy, or other foods that are known to cause reactions.

I really hope you get to feeling better soon. It has got to take an emotional toll to feel so sick all the time while trying to lead a "normal" life.

Take care!

[hathor]

I think it usually takes much longer than 2 months to heal, at least judging from this board and others. Did you notice no changes at all after eliminating gluten?

One confusion you have is that there is a difference between gluten intolerance and celiac. Celiac is a subset of the former. Enterolab only diagnoses gluten intolerance, which can arise before the villi are damaged (so no official celiac) or can cause damage other than to the villi.

Genetic testing can rule out celiac, but with a couple caveats. There are some diagnosed celiacs without the so-called celiac genes. And some believe that there are other genes involved.

You can be gluten intolerant and benefit from a gluten free diet even if you don't have celiac or the celiac genes. There are plenty of us on this forum in that category. So I don't see what getting the gene testing would prove. It might prove you aren't "celiac," but that doesn't establish whether you should eat gluten or not.

Did you get testing done for any other intolerances? Have you eliminated dairy, a frequent problem for the gluten intolerant, at least initially? Sometimes folks have to take out gluten, casein & soy to find relief.

Of course, there is also the possibility that you are continuing to inadvertently gluten yourself and that is why you aren't better. Do you have a comprehensive list of ingredients to avoid and those that need further investigation (like flavorings, etc.)? Have you eliminated the possibility of cross-contamination in your kitchen? Checked out your personal care items?

[GFhopeful]

I did get the gene tests after not getting all better after Gluten-free Casein-free. I do not have the genes for Celiac but the doctor said that I could still have issues with gluten and will have to try a challenge and see how I feel (once I feel better).

I am still having symptoms too and have been really good about eating whole and natural gluten-free foods since May/early June of this year. I am not willing to try gluten yet as I do notice some improvements since then (was in the hospital for 6 days, very sick and now I am functional - just crazy headaches and nausea and now reflux apparently).

So hope this helps you decide - do whatever it takes to make you feel confident that you are doing the right thing on the road to recovery. I honestly don't know what is going on with my body ( and neither did the many doctors I have seen) but I do know that Gluten-free Casein-free can't hurt in the recovery process if I just had some crazy infection or something - and eating it could hurt if I have some sensitivity to it. Good luck in deciding what to do next.