Unclear Test Results

[SweetDream]

Ok let me start from the beginning, please bear with me. A few months ago I woke up in the middle of the night sometime between 1-3am with severe stomach cramps which eventually led to diarrhea. I was fine during the day and thought I must have had a bug or something, it just happens sometimes. But then it happened the next night, and every night for the next week always the same thing at the same time between 1-3am. I was eating toast or ramen noodles for dinner most of those nights thinking I needed to eat something light on my stomach. It was during one of those nights that I did some research and found celiac disease. A lot of the symptoms associated with celiac clicked with a lot of problems I've experienced. I've always struggled with unexplained malnutrition, I have a rash of petechiae on my upper arms but pinpricks over my whole body. I take vitamins and try to eat healthy. I appeared anorexic as a child... I could eat anything and never gain a pound. Embarrassingly I saw a couple dr's during my childhood because of constipation. My menstrual flow is rarely regular. I get nailed with extreme fatigue, muscle cramps in the evenings, dizziness sometimes in the past month (can't stand up without falling over, lasts for several hours), and potty visits haven't been 'solid' for a while now. I've never been able to handle milk, ice cream, and other dairy products are iffy.

I figured I must be doing it all wrong. I'm not eating healthy enough, not taking enough vitamins, not eating enough fiber, working too hard, and so on. But at other times I thought well I must be like my Mom. She was very skinny when she was young, put on weight in her 20's and early 30's, and was just plain tiny in her late 30's early 40's. She's also lactose intolerant. She has had colon cancer, her thyroid removed, and she's pre-diabetic. When I looked up some information about celiac disease I decided to test myself for a couple weeks. Anytime that I ate pasta or bread for dinner I woke up with pain and/or diarrhea in the middle of the night. During the day pasta or breads and other stuff would make my stomach upset... lots of noises and bloating, embarrassingly smelly breath. And so on. I talked with my mom, who's a nurse, and she encouraged me to see a Dr about having a blood test done. I put it off. I don't like Dr's, I never seem to get answers.

Last week, my workplace threw a company lunch. It was pasta with a side of bread. (yay) I didnt have anything else to eat so what the heck. Within 30 minutes it felt like stones in my stomach. Coworkers said I went white as a sheet and I had a couple strong pains in my stomach, like I'd swallowed a thistle. I figured it was about time to see a Dr. But I'm selfpay, I haven't had enough hours at my current job to qualify for health benefits. I went to a walk in clinic. Described everything above to the doctor. Who told me 'well if gluten bothers you, just don't eat it'. But I asked about blood tests. The dr disappeared in his office for awhile... came back and told me that there was a strong possibility I had celiac and wrote out an order for one blood test to be done at Labcorp. I believe it was a transglutaminase tissue .. something or other... IGA.

They called today and told me I tested negative. When I asked what were the exact results the person on the phone said 'Um... 2 I think"

I've been (or trying to be) gluten free since after the blood-draw and I've noticed some improvements. I've had no significant stomach discomforts and slept through the night without pain or impromptu midnight potty visits. I really don't want to have blood tests willy nilly and I would like to go 100% gluten free and see if my problems improve over time. But I'm uncertain of the tests results? I didnt get the impression that the Dr was sure of anything, not even which test(s) to do. I have no idea what "2" means or how that type of test is interpreted or how definitive is that test, can it vary? Is it a good idea to have other types of tests done as well?

Any advice would be greatly appreciated.

[squirmingitch]

You need to get a copy of the test results --- the written test results. You have a right to them under the HIPPA laws. You will have to sign a release but they can not keep them from you.

I suspect they did not do the proper tests; not ALL of them. Get your copy & come back & post the results. People here can tell you what they mean & if they did all they should do.

If you need an official dx then you need to keep eating gluten until you can get all the proper tests done. If you don't require an official dx then you can go gluten-free right now. But I warn you that if you decide later to go for a dx you will have to go back on gluten for 2 to 3 months & usually after being gluten-free you have MUCH stronger reactions to the gluten than if you had stayed on gluten until testing was finished.

Also one would wonder if you want to be diagnosed before your insurance at work kicks in. But it may be too late since you already saw a Dr. about it. Insurance may not cover you for celiac now.??????

[SweetDream]

You need to get a copy of the test results --- the written test results. You have a right to them under the HIPPA laws. You will have to sign a release but they can not keep them from you.

I suspect they did not do the proper tests; not ALL of them. Get your copy & come back & post the results. People here can tell you what they mean & if they did all they should do.

If you need an official dx then you need to keep eating gluten until you can get all the proper tests done. If you don't require an official dx then you can go gluten-free right now. But I warn you that if you decide later to go for a dx you will have to go back on gluten for 2 to 3 months & usually after being gluten-free you have MUCH stronger reactions to the gluten than if you had stayed on gluten until testing was finished.

Also one would wonder if you want to be diagnosed before your insurance at work kicks in. But it may be too late since you already saw a Dr. about it. Insurance may not cover you for celiac now.??????

Thank you for your insight. I want the diagnosis mostly for my children. If I can figure out what has caused problems for my mother and myself then maybe they wont have to go through it as well. I was going to request a copy of the test result anyways but the health insurance is a good point. I should be eligible in august or september. I dont think it will be a problem since it was negative but I've heard the insurance isnt great. But either way I've discussed it with my husband and done some careful thinking. I'll go gluten free now. See how I'm feeling over time and if my problems with malnutrition get any better then if the insurance will cover most of the cost I'll try the full panel tests this fall or winter. Otherwise I'll wait for early next year.

Do you know a good brand for gluten free vitamins/supplements? I'll need them soon...

Thanks again

[squirmingitch]

I needed a gluten-free, iodine free, soy free, multi. No iodine b/c I have dh (celiac rash). I went with Solgar brand "Vitamins Only" but they don't contain the minerals. Look on the board here --- use the search box & you'll come up with lots of Vitamins celiacs are using.