Do You Think This Is Celiac?

[Sasquatch]

I have had a few symptoms for several years, but they started getting much more severe a year ago when I started college, and got much worse starting last March. They are,

- A sensation of tingling and pins and needles. This typically happens during the process of warming up, although if I stay warm for a while, they subside. During the worst episodes, I suddenly sweat a whole lot (I don't usually sweat much at all). I've had these occasionally for about four years, but they were just a fairly minor annoyance until last spring when they would be severe, all over the body, and frequently. They got worse until someone suggested taking vitamins about 2 months ago, and then they got much less severe within a week, although still fairly frequent.

- I have been unable to gain any weight since I was 15 years old, 4 years ago. I'm 6 foot 4 and my weight has hovered between 145 and 150 those years and has gone down to a little above 140 this summer, despite being hungry and eating a lot.

- A spacy and slightly dizzy feeling like I'm not fully there. I've had that occasionally also for years but also has gotten much more frequent.

- Fatigue, mainly over the past year, especially after eating.

- Soreness and weak muscles, although a very different type than soreness from athletics. Its most common in the legs, sometimes it feels like I'm walking through cement. In the past few months I've also gotten it it my arms and shoulder, although less severe. This is also most common after eating but happens at other times sometimes too.

- Stomach problems, bloating is the most severe, it often feels like everything is rumbling around in there and not being digested. There is rarely pain while sitting but cramps sometime happen while walking.

- Occasionally I get real diarrhea, but what often happens is like half-diahrrea, occasionally changing to a bit of constipation.

- Increased sensitivity to many things. I used to not really ber affected by caffeine, and now a little screws me up. I found out a few months ago that I was sensitive to MSG. Others like that too.

- I practically lost my sensation of being full. Instead, I just ate until my stomach was full, but still sort of felt hungry.

A few ewwks ago, when it had gotten particularly bad, I remembered that I had a cousin with celiac and decided to experiment with avoiding gluten. I did for a few days and my symptoms were lessened significantly. I ate gluten again for a few days and they got as bad as they ever had been. I stopped eating it again about a week and a half ago, although I'm not certain that nothing I ate didn't ahve any hidden sources. Again, my symptoms lessened almost immediately, then have lessened a bit more. I got my sense of fullness back almost completely, although the other symptoms have not been changed as drastically.

I realize that I need to be tested and have now read that I have to be eating gluten for the test to work. How long before the test do I have to start eating it again for it to work? I think my experiment of not eating it has shown that I probably am celiac, but I'd like other opinions if I'm on the right track at all.

[lovegrov]

Many of your symptoms are common for celiac, although everybody is different. You probably haven't been off gluten long enough to cause any problems with the tests, but you're going to need to start eating it again, as hard as that may be. Call your doctor and beg for those blood tests.

richard

[KaitiUSA]

You need to be tested for celiac. You can't always tell from symptoms because there are over 200 associated with celiac and everyone can get different ones or none at all. You should request a complete panel because some blood tests are better then others.

[watkinson]

Hi sasquatch,

Cute name!

Many of your symptoms sound so much like mine. The tingling and numbness is peripheral neuropothy. (nerve damage) I would have it in my hands and feet and my elbows, with shooting pains going up and down my arms and legs. My elbow felt chronically broken and the skin around it felt like it was rug burned. These problems were particularly bad when I was sleeping (or trying to anyway) and when I would have a stomach attack. I would also get night sweats and what felt like hot flashes only they weren't. I would wake up with charlie horses in my legs, all sorts of problems.

The soreness and weak muscles is probably fibromyalgia, restless leg syndromeand chronic fatigue. It all stems from being a celiac. Our antibodies are messed up. they are supposed to kill bad bacteria, viruses, and poisons. The problem is that they see gluten as a poison. The gluten protein is similar to some of our own bodies cells. So when the antibodies come out to "kill" the gluten they also start to kill our bodies. Starting with the intestine and then working on the rest of us. This results in malnutrition, iron, and vital vitamin deficienties, and a miraid of other problems. The good news is that most all of it clears up after going gluten-free. Your young so you should be able to heal pretty fast.

Get your blood work done as soon as possible. Your right...don't stop eating gluten until the test. I totally recomend that you get the appropriate tests done through your doctor, but since your cousin is a celiac, you already know that it runs in your family. If you stop eating gluten and you feel better, who cares what the test says, you know you feel better.

Also check into the possibility of having other food allergies or sensitivities.

Wendy

[Sasquatch]

Thanks for the advice. I have a blood test scheduled in a week and a half from now. I've staretd eating gluten again yesterday, I feel worse alredy although not yet as bad as I was before. I just hope to get the results before my next semester of school begins in late August.

[MrsMcBear]

...You can't always tell from symptoms because there are over 200 associated with celiac....

<{POST_SNAPBACK}>

Where can I get a list of all 200 symptoms associated with celiac? And are heat intolerance and profuse sweating among those symptoms?

Thanks, Kaiti.

Chris

[PicturePerfect]

- A spacy and slightly dizzy feeling like I'm not fully there. I've had that occasionally also for years but also has gotten much more frequent.

- Fatigue, mainly over the past year, especially after eating.

- Stomach problems, bloating is the most severe, it often feels like everything is rumbling around in there and not being digested.  There is rarely pain while sitting but cramps sometime happen while walking.

- Occasionally I get real diarrhea, but what often happens is like half-diahrrea, occasionally changing to a bit of constipation.

- Increased sensitivity to many things.  I used to not really ber affected by caffeine, and now a little screws me up. I found out a few months ago that I was sensitive to MSG. Others like that too.

I realize that I need to be tested and have now read that I have to be eating gluten for the test to work. How long before the test do I have to start eating it again for it to work?  I think my experiment of not eating it has shown that I probably am celiac, but I'd like other opinions if I'm on the right track at all.

<{POST_SNAPBACK}>

These were some of my symptoms.

Did you stop eating gluten????

It takes about six months before the test to start eating gluten again.

How long have you been on the diet? Has there been any improvement?

[Sasquatch]

I've been away from a computer for a week, that's why the really late reply,

I only stopped eating gluten for 2 weeks, which I was told wasn't enough to really affect the tests. I did feel significantly better during that time. I've started eating gluten again for the last week and a half, and sure enough have felt much worse, although I did not have a strong immediate reaction to gluten, rather it built up over the course of a few days so that by about the fourth day I was feeling worse than I had before.

I have the blood test on Tuesday, is it all right to stop eating gluten again immediately after the blood test, or will there be anything else that needs to be done that I would have to keep eating it for? I am just concerned because although I have had some of my symptoms for several years, the last two months they have worsened very rapidly, except for the two weeks I was gluten-free, so I hope to be able to go gluten-free again as soon as possible.

[KaitiUSA]

You can go gluten free when all testing regarding celiac is completed but do not go gluten free before that.

[Sasquatch]

You can go gluten free when all testing regarding celiac is completed but do not go gluten free before that.

After teh blood tests are taken, will there be a need for more testing? I've heard about the biopsies and stool tests but am still unclear as to whether they are needed as well as a blood test or if they are other options for testing for people who don't get a blood test.

The reason I'm asking this now is because my next year at college starts again in two weeks, so I don't think I could get anything more scheduled until I'm back home in December, and at the rate at which I keep feeling worse this summer, I'd probably never be able to make it through the semester eating gluten.

[Rachel--24]

If for any reason you wanted to have the biopsy done then you'd have to continue eating gluten. The stool tests which are done through Enterolab don't require you to be eating gluten. My blood tests came back negative (I had stopped eating gluten for 2 weeks) so now I'm waiting for Enterolab results since I've been off gluten for awhile now. Did you say you were gluten-free for a couple weeks? That could affect your blood test.

-Rachel