Second Guessing Diagnosis

[sleer]

Here's the background. I was not diagnosed with a blood test or biopsy. I was diagnosed by elimination diet. By the time I got to the Dr. (long story but it was a new Dr. and it took a while to get in as a new patient and I had waited a while before calling anyway) after feeling like I had the flu for months my brother-in-law who is a dietician suggested I see if gluten was causing my symptoms. I was feeling better. I got into the Dr. and she said I either go with the gluten free or take the gluten challenge. The idea of feeling that same way again terrified me. So here I am. I've been gluten free (minus some slip-ups) since March.

However, I still have boughts (like this last week) where I feel like my gluten symptoms have returned and I cannot trace it back to any gluten. Today I was having earache-like pain when I took deep breaths. This is usually a sign of gluten (or at least I thought). But I can't come up with any gluten that I've eaten. I've been so careful. The ups and downs are driving me crazy and causing my to wonder if I'm not really diagnosed at all and there's something else wrong. Anyone else experience these types of feelings, etc?

[mushroom]

I have had a lot of othe problems and food intolerances show up since I went gluten free, but I must say I have never doubted that I am in fact gluten intolerant and need to eat gluten free. I have just tried to track down the causes of the other things. I was never tested either.

[heidi g.]

candida can cause earaches and a gluten sensitivity. i would try going on a candida diet but make sure the diet is gluten free just to rule out probable cause. look at the candida symptoms and see if they match yours. have you taken an antibiotic recently? earaches are associated with a food allergy but i have never heard any patients at the doctors complain of earaches. you could also just have a regular ear ache. its common in cold weather and remember everyone gets infections and it isn't always related to gluten. you can get regularly sick as well

[sandsurfgirl]

The tests aren't that accurate, so lots of people are diagnosed by dietary response. Don't let that hang you up. Gluten doesn't make people sick if they don't have celiac. Or gluten intolerance but in my opinion gluten intolerance is celiac too, maybe just not full blown and the tests aren't adequate enough to find it.

How long have you been gluten free? It can take months before all the damage is healed and you are completely better.

Have you checked your lotions, soaps, shampoos etc. for gluten? It's almost always in the form of wheat. They love bragging about all the wheat in their products. That gluten protein is sticky and it stays on your hands and ends up in your mouth. If you have lotion on your hands and touch your food. When shampoo runs down your face in the shower, etc.

Are you in a shared kitchen? You may be getting CC'd if somebody in your house makes gluten or gets crumbs all over the place.

Do you have a separate toaster?

Have you gotten rid of old plastic and wooden utensils? I got glutened bad by the plastic collander that I thought was clean since it had been through the dishwasher.

If you want to try it, then eat a bunch of gluten and see how you feel. My bet is you'll feel horrible and never want to do it again.

[CR5442]

There is a possibility you might be salicylate (sp?) sensitive (or even Phenols). In my herbal class this morning the lecturer said one of the symptoms can be nasal polyps (which i've had), and obviously being ENT related that could affect your ears. Also, is there a particular side you feel this earache? Sometimes mine is related to liver congestion... I'll get headaches and aches down the right hand side of my body. The reasons are endless. Sometimes it could just be your body working the remains of the damaged cells out of your system. I think that healing goes in cycles. It should all calm down. But like the other poster above put, make sure you aren't getting CC.d too!

[kwylee]

I'm a big believer in the subtle - and sometimes not so subtle - effect of simple food intolerances. And I totally agree with others here that additional food/environmental culprits seem to show up once you've made headway with getting the gluten out of your system.

So - are you dairy and soy free as well? I didn't feel good until a few weeks after eliminating those as well. Dairy and soy seem to be two of the biggest offenders, but if not, don't give up in your detective work. It really pays off in the end.

[T.H.]

The idea of feeling that same way again terrified me.

I think that says it all right there. If you were feeling so bad that this is how you view it? And you're not anymore, most of the time, since you've stopped the gluten? Then gluten is definitely part of the problem.

Whether it's ALL of the problem seems to be the big issue, yeah? Might be gluten intolerance or celiac disease, might be an issue that is affected by gluten, like fructose intolerance.

Have you been keeping a food journal? That might help you notice a pattern to when you react.

Some ideas for if it's all gluten:

1. Do you know how sensitive you are to gluten? If you had celiac disease as opposed to gluten intolerance (or really sensitive intolerance), there could be some gluten cross-contamination issues to worry about that you might be running into. Shared kitchen equipment can do it, especially wood, plastic, or scratched teflon. Or metal that you can't scrub all the crevices of.

2. The label 'gluten free' is an unregulated label in the USA(weren't sure where you are), although most companies who test their products try to keep gluten levels below 20 ppm. This means that, basically, some gluten free foods aren't as 'gluten free' as others. Some companies test for gluten, some don't. Some have gluten free equipment lines, some don't. So the potential for safe food vs. gluten cc'd food varies by company.

Or to put it simply: sometimes your gluten free food can be contaminated and you'll be sick from it, which might account for periodic bouts of ick. You can find this even more with some naturally gluten free flours or grains, if the companies haven't tested for gluten levels. A small study, for example, tested 22 different naturally gluten free products and found a fair number contained more than the 20 ppm gluten levels considered safe for most celiacs. One soy flour had 2,925 ppm of gluten. (Open Original Shared Link )

3. Some celiacs (I don't know about gluten intolerants, actually) can become a bit more sensitive to gluten after they've been off it for a while. So the foods they used to eat and the precautions they took over gluten cc may no longer be as safe as they were in the beginning.

4. Boyfriends/girlfriends can be an issue, and man do I wish this one were not true! Kissing any body part that has substances that aren't gluten free? That'll get you sick. Lips and skin, wherever. If our spouses ate gluten, or they used gluten lipstick, or put on gluten lotion before we kissed their hand...that'll get ya.

Again, a food journal may help with the above sorts of issues. Might pinpoint another food issue, if there is one. If you want to jot down some other information, like 'significant other came over today' or 'used such and such shampoo' or 'used the wooden cutting board,' that might present a pattern, too.

Hoping you can find the answer soon so you can start feeling well all the time, hon!