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Testing Plan

Carli

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Carli Newbie
Carli
Posted

First off, I've danced around the idea of having gluten issues for a long time. Between my symptoms, and undiagnosed family history (my grandmother could tell you where the bathroom was in any building in town) the thought has crossed my mind. So far I've been able to lie to myself...after all, if it were gluten I would be sick every day. Since my symptoms are sporadic, it clearly can't be gluten.

Fast forward to now, I've basically been sick for the past month. Horrific explosive diarrhea daily. (I assume there is no such thing as TMI here) When I decided that something needed to be done, I did some googling of my specific symptoms and learned that yellow, oily diarrhea indicates Celiacs. EVERY time my stomach is upset, its bright yellow and oily. So no more lying to myself :(

Today is Day 1 of being gluten-free for me. I have a few basic questions.

1- How long should I be gluten-free before I introduce gluten again to see if I react? Im thinking 30 days, and if I feel great I might take it another 30 before I test myself. I really feel the need to test myself and not just go by feeling better.

2- Does it really matter from a physical standpoint whether you have true Celiacs or are just gluten intolerant? It seems to me the end result is the same, stay off gluten=feeling better.

3- After eliminating gluten, if I feel Im pretty certain gluten intolerant, I think I might spring for a genetic Celiacs test. My insurance won't cover the testing, and Im not willing to pay out of pocket for the Celiac blood tests when its so often inaccurate and I would have to go back on gluten and make myself sick to test. I saw a site advertised here myceliacid.com that offers an at home DNA test. Any thoughts?

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Skylark Collaborator
Skylark
Posted

I'm surprised your insurance won't cover celiac blood testing. What I would recommend is the Biocard celiac home test, BEFORE you go off gluten. You can mail order one and it will cost much less than paying out of pocket. Open Original Shared Link

Celiac disease confers risks of thyroid disease, anemia, osteoporosis, other autoimmune diseases, and some very rare intestinal cancers that doctors will watch you for more carefully than they would otherwise. If you come up positive on the Biocard test before you go off gluten, you will have some really valuable information. Even better, it costs less than the genetic tests, which are not as diagnostic for celiac.

Once you test, I'd give the diet at least two months. Some people will suggest four or five months. I had immediate stomachaches from wheat after only three weeks of elimination so it really varies.

Carli Newbie
Carli
Posted
  • Author

I'm surprised your insurance won't cover celiac blood testing. What I would recommend is the Biocard celiac home test, BEFORE you go off gluten. You can mail order one and it will cost much less than paying out of pocket. Open Original Shared Link

Celiac disease confers risks of thyroid disease, anemia, osteoporosis, other autoimmune diseases, and some very rare intestinal cancers that doctors will watch you for more carefully than they would otherwise. If you come up positive on the Biocard test before you go off gluten, you will have some really valuable information. Even better, it costs less than the genetic tests, which are not as diagnostic for celiac.

Once you test, I'd give the diet at least two months. Some people will suggest four or five months. I had immediate stomachaches from wheat after only three weeks of elimination so it really varies.

I pay for a private policy, so I have a decent sized deductible to pay before anything other than preventative care is covered. Im given an annual checkup with lab work, but I think thats just the basic blood panel, nothing *extra*. Again, I would be willing to pay for it, but my understanding is that its not accurate. A friend of mine (whos mother almost died from Celiacs) had the blood test done 4 times before she got a positive.

Thanks for the website for the home test. Im in the US but have some friends in Canada who might be able to help me get it. I just heard about that company on the podcast. Maybe I'll go back on gluten for a few weeks until I can get my hands on the test. Thanks!

Skylark Collaborator
Skylark
Posted

You're welcome. :) There are certainly false negative issues with celiac blood tests, but when people do test positive it's really valuable information. Anyway, I hope you can get your hands on that home test. I think I saw a phone number for US inquiries on their online shopping cart. If it comes up positive you have a really good reason to look at getting a more detailed celiac workup from a doctor.

Mari Enthusiast
Mari
Posted

Today is Day 1 of being gluten-free for me. I have a few basic questions.

1- How long should I be gluten-free before I introduce gluten again to see if I react? Im thinking 30 days, and if I feel great I might take it another 30 before I test myself. I really feel the need to test myself and not just go by feeling better. YOU MAY NOT HAVE TO DO A CHALLANGE SINCE MOST OF US GET GLUTENED WHILE WE ARE LEARNING HOW TO BE GLUTEN FREE. IF YOU HAVE celiac disease YOU WILL REACT WITHIN 3 TO 6 HOURS.

2- Does it really matter from a physical standpoint whether you have true Celiacs or are just gluten intolerant? It seems to me the end result is the same, stay off gluten=feeling better. YES, KNOWING THAT YOU HAVE AN AUTOIMMUNE DISEASE AS OPPOSED TO LEAKY GUT SYNDROME WILL INFLUENCE YOUR DESCISIONS ABOUT HOW YOU HEAL THE DAMAGE TO YOUR INTESTINAL TRACT. LOOK AT THE SPECIFIC CARBOHYDRATE DIET.

3- After eliminating gluten, if I feel Im pretty certain gluten intolerant, I think I might spring for a genetic Celiacs test. My insurance won't cover the testing, and Im not willing to pay out of pocket for the Celiac blood tests when its so often inaccurate and I would have to go back on gluten and make myself sick to test. I saw a site advertised here myceliacid.com that offers an at home DNA test. Any thoughts? I HAD THE GENETIC TESTS AT ENTEROLAB AND DON'T REGRET THE EXPENSE. THEIR WEBSITE IS VERY INFORMATIVE. GOOD LUCK.

ravenwoodglass Mentor
ravenwoodglass
Posted

30 to 60 should be enough time as long as you are strict with the diet. Make sure you eat mostly fresh food and IMHO it is best to stay away from alcohol and restaurants during this time. Also make sure that you are taking the proper precautions at home, your own dedicated toaster, not baking with gluten flours for others, not sharing stuff like pnut butter, jelly and butter with gluten eaters for example.

If you do chose to challenge be aware that the reaction can be delayed. The antibodies may need time to build up before a reaction. Some don't notice a reaction until 3 to 7 days into the challenge. There are others that will notice a reaction very quickly, like in hours but not all do.

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