New To gluten-free Diet, Some Advice Needed

[teacherkd]

First off, some background.

I have had IBS symptoms since I was in college-- I am now 38-- along with, in recent years, pain in my feet, ankles, and especially toes, and pain in my hands and wrists. I had been doing somewhere in the range of 7-10 BM's a day, only the first one or two of which actually did anything. The rest were pretty much pure acid with spasms and would go most of the day. Drinking milk made things worse, though I could do cottage cheese and yogurt, and maybe a little shredded cheese now and again.

About six-odd weeks ago, I started the South Beach Diet with my wife [she wimped out after a week, which is another story, but I stuck with it, which is relevant]. Phase I of South Beach basically cuts out all high starch carbs and most processed food. It didn't click at the time, but it is essentially a modified gluten-free diet. After about two days, all of those symptoms were gone, bye-bye, adios.

What really drove the point home was when I started phase 2 after about three weeks, which allowed whole grains, and had some whole wheat pasta for dinner. Symptoms came back in about 36 hours. I talked to my doctor's office, as I needed to schedule a physical anyway, and they said to stay off gluten until my appointment, which is this coming Friday.

So what should I ask my doctor to do? Should I get tested for celiac? I'm really not looking forward to it if it means having to eat gluten again prior to testing. I reaaaallly like how I feel now and I don't want to go back to spending all my mornings on the john. I'm a much better dad and employee now than I was before and I don't want that to change. What do y'all think?

Kevin D.

[princesskill]

if you know you feel better do you need a blood test to tell you what you already know? my symptoms wernt that bad so i went back onto gluten for 2 weeks before testing because i wanted to KNOW that i could never have another beer or piece of birthday cake.

[Youdah]

You are in a similar situation to what I'm in. I've found that gluten definitely causes me problems, but I couldn't get into see the doctor soon enough for a lab test. So, the Catch-22 is: do I need to eat more gluten to prove I shouldn't be eating gluten?

From all I've read on the internet, by the time you get to your doctor, any labwork will test negative if you've been off gluten for awhile, because that will reduce the amount of antibodies in your bloodstream. There's a high percentage of false negatives anyway; I've seen many on this website have a false negative but a positive biopsy. So, there's no reason that I can see to eat gluten to prove I shouldn't eat gluten! You will have to make your own decision.

A biopsy is another matter since it takes longer for the gut to heal. But, the prep and the test itself is something I'm not going to put myself through. I've felt lousy long enough; I'm not going to put my body through a scope! Again, that's your choice.

Ask yourself: is there is any real reason that you NEED the diagnosis? For medical billing, your doctor can put an "unspecified gluten intolerance" which is a side-stop of a full diagnosis from testing. That should be enough to satisfy any insurance company. If you really want a medical confirmation, plan on a biopsy of the small intestine.

Good luck!

[samcarter]

I'm one of those individuals who realized gluten was a problem on their own. I stumbled across a blog about celiac disease, and realized I'd had some of those symptoms all throughout my childhood. I eliminated gluten for a week, and was amazed at how my energy level went up, my digestive issues calmed down, and in general I just felt better. My psoriasis improved. I decided to try to get my GP to do a celiac blood panel, and I went back on gluten and felt horrible. Awful. I had the brain fog, the "hot flashes", the whole shebang. My GP, as it turned out, was skeptical and only would do the EMA test, which I've learned is not as sensitive as the whole panel. He said it was the best test. Huh.

It came back negative, but my dietary challenge had at least proven to ME that I have issues with gluten. Whether I am a celiac or simply gluten intolerant is, to me, irrelevant. I feel sick when I eat gluten. End of story.

I just tell people I am gluten-intolerant, or cannot eat gluten. I'd rather not say I'm celiac, because I'm not sure if I have the full disease and don't want to misrepresent celiacs. But I have no problem with refusing gluten-filled foods by saying, "I can't eat that."

[Alli-Ely]

I would suggest talking to your doctor about it. If they say that you have to eat gluten before being tested for celiac then I would probably not get tested. You know what is bothering you so I would suggest that you just stay away from it and not worry about the testing so much. I stopped eatting gluten after I had been having some problems with it and my mom was diagnosed, and a little while later some bloodwork came back positive for celiac. However, since you know what is bothering you I would not worry about testing for it necessarily.

[teacherkd]

I would suggest talking to your doctor about it. If they say that you have to eat gluten before being tested for celiac then I would probably not get tested. You know what is bothering you so I would suggest that you just stay away from it and not worry about the testing so much. I stopped eatting gluten after I had been having some problems with it and my mom was diagnosed, and a little while later some bloodwork came back positive for celiac. However, since you know what is bothering you I would not worry about testing for it necessarily.

My GP agreed with you, as it happens.