Worried About Testing

[wandawanda]

I'm a 42 year old woman. I have reason to believe I might have celiac disease. The main symptom is a strange neurological thing which is like dizziness, only I'm not sure if that's the best word. Also, I have a certain issue with my bowel movements. Long story short, sometimes my anus bleeds, and BMs hurt. I was always told to add more fiber to my diet, which seemed weird because my diet always consisted of things like lots of Grape Nuts cereal, and whole wheat everything. At GYN exams, when they do a quick digital rectal exam, no one ever seemed to think there was a problem, so just figured that's life.

Last year, after struggling with a lot of weird neurological symptoms that I couldn't explain very well to doctors, and pretty much being told "there, there, I'll prescribe you some Xanax if you like," I did some online research, and decided that a gluten sensitivity might be a possibility.

I did my best to eliminated gluten, and symptoms went away. Once in a while they'd come back, and then I'd find out that my husband had put flour in a sauce, or it would be because I couldn't resist a slice of pizza.

This morning I had a bite of French bread that my kid hadn't finished, before realizing what I was doing. Later today, I was completely caught off guard by a couple of brief, but really intense pains in the rectum. They seem to have been gas pains. The pains were so severe and so sudden, that on one of them, I flung a glassful of water across the room. I was carrying the glass of water, and the pain made my hand jerk, so all the water flew out.

That made me decide that I want to get tested. I don't ever want to have that happen again. I mean, what if I'm driving my car or something?

But, in order to get an accurate test, don't you have to go back to eating a lot of gluten for a long time? After those pains (short and temporary as they were), I don't ever want to eat gluten again. And I do NOT want my depression and anxiety back, which went away after being gluten free for a bit. Last year was horrible, because I was too depressed to be a good mom to my kids. Right now, I'm thinking that I would rather spend my life on a strict gluten free diet than have to deal with that again.

Isn't there any way to get a clue about whether you have celiac disease or not without having to eat a bunch of it for a long time?

Sorry this is so long. Any input will be most welcome.

Evelyn

[tarnalberry]

You need to be eating at least three slices of bread a day (or the equivalent) for three months in order to have a reasonable chance at an accurate diagnosis. Since the blood test is checking for a REACTION TO WHEAT, if you have no wheat in your diet to react to, it can't be diagnosed.

That said, dietary response IS a test. You do have a VERY STRONG clue that you have celiac - you feel awful when you eat gluten.

[Wolicki]

So, is your bowel problem constipation? If so, the pain and bleeding are probably from hemmorhoids. they can hurt like crazy, and cause bleeding. They can come up on the inside or the outside- you can't necessarily see them. I had them for years because of chronic C, and none of my doctors ever mentioned it- I think a lot of people have them. The good news is, once the C goes away, so do the hemmorhoids and THAT is a good thing!

As far as testing goes, the only way to get an accurate blood test or endoscopy is by eating lots of wheat. A positive response to the diet is proof enough for some. Enterolab is another way to get "proof" but it is expensive and not covered by many insurance plans.

If the diet improves your symptoms then you have your answer. Good luck to you in your journey.