How Much Gluten To Test Yourself?

[Mopsiehoney]

Hi -- I'm new to the site. I've been cruising around and finding so much helpful information.

I have a question about "self-testing" regarding celiac.

Background: For about 6 weeks I was having diarrhea on and off. It was green in color despite the fact that I wasn't eating very many vegetables. When the diarrhea began I started eating more cheese and bread trying to "even things out." After 6 weeks I went to see my doctor. After examining me she said she thought I had celiac. She put me on a gluten-free diet for two weeks.

After eating gluten-free for about 5 days I felt better and the diarrhea disappeared. Also my stool was back to being brown in color. When I saw my doctor again she said that I would need to eat gluten-free the rest of my life. I asked her about testing. I had already read up on that some from this site. She was going to look into it to decide whether she should refer me to a GI specialist or not.

Then my doctor went on medical leave unexpectedly. SO -- I'm getting frustrated because I want to know for certain one way or the other. I had some regular cake at a bridal shower the other day. I thought I would use that as a "test" to see if I really have celiac or whether it could be something else -- especially since my stress level has been high lately. (From work)

Nothing happened. No diarrhea, no change in stool color, nothing. Since then I've continued to eat gluten-free because I wasn't sure how much gluten I would need to eat to "prove" that I do or do not have celiac disease.

So my question is how much gluten I would need to eat to be sure in this "self test." I figured since you have to eat gluten for six months before getting the biopsy that maybe I would just put myself back on gluten so that once I get my biopsy I would be ready. Either that or I would know that I was celiac without having to get the biopsy.

Any thoughts you have would help....

[Guhlia]

If you want a diagnosis I would recommend going through Enterolab. It's not cheap, but at least then you'll know AND so long as you don't give the results to your doctor or try to get insurance reimbursement, it will stay off your medical record. Plus, you don't need to eat any gluten before the testing. It will still be accurate so long as you haven't been gluten free for too long. They told me that it could be accurate possibly up to two years after going gluten free.

[Mopsiehoney]

If you want a diagnosis I would recommend going through Enterolab. It's not cheap, but at least then you'll know AND so long as you don't give the results to your doctor or try to get insurance reimbursement, it will stay off your medical record. Plus, you don't need to eat any gluten before the testing. It will still be accurate so long as you haven't been gluten free for too long. They told me that it could be accurate possibly up to two years after going gluten free.

I've seen that word Enterolab on here often -- but I'm not clear on what it is -- how would I go through them to get the testing done?

Also -- is it important to keep it off your medical record? Does it make insurance increase or something?

Thanks for the reply!

[marciab]

I can't afford Enterolab at this point, so I did a couple of wheat challenges. And I just ate as much wheat as I wanted since it was probably going to be the last time I ate wheat, I figured I might as well enjoy it.

I had different reactions to wheat when I did my wheat challenges. One of the challenges I got "D" right away and sharp abdominal pains like I had swallowed glass. And during the other challenge, I got "C" for about 3 days, cramping, gas, bloating, sharp pains in my abdomen and then non stop "D" for a day or two.

All in all the last attempt took me about 10 - 14 days to recover from.

Hope this helps. Marcia

[Mopsiehoney]

I can't afford Enterolab at this point, so I did a couple of wheat challenges. And I just ate as much wheat as I wanted since it was probably going to be the last time I ate wheat, I figured I might as well enjoy it.

I had different reactions to wheat when I did my wheat challenges. One of the challenges I got "D" right away and sharp abdominal pains like I had swallowed glass. And during the other challenge, I got "C" for about 3 days, cramping, gas, bloating, sharp pains in my abdomen and then non stop "D" for a day or two.

All in all the last attempt took me about 10 - 14 days to recover from.

Hope this helps. Marcia

Thank you Marcia -- it does help!

I'm going to check into the Enterolab thing but since money is tight right now I might not be able to afford it either -- maybe I will go ahead and try a "wheat challenge" on myself.

I'm crossing my fingers -- I just want to know more certainly one way or the other.

[Guhlia]

I've seen that word Enterolab on here often -- but I'm not clear on what it is -- how would I go through them to get the testing done?

Also -- is it important to keep it off your medical record? Does it make insurance increase or something?

Thanks for the reply!

www.enterolab.com If you have private insurance, or may need to get private insurance in the future, you probably DO NOT want celiac on the record books. Many, many people are denied private insurance because of things much less than celiac. I was denied insurance because I had ear infections as a child (26 years ago). Insurance companies are really funny about pre-existing conditions.

If you can't afford the enterolab, i would do a gluten challenge. Go gluten free for 8 weeks, then reintroduce it and see what happens. Make sure that you're not introducing anything else new at the same time. You will also likely want to avoid dairy because most celiacs have a short period of time where they cannot handle dairy. I can't remember if it's casein or lactose that you have to avoid. I'm sure someone else will post it for you.

[Mopsiehoney]

www.enterolab.com If you have private insurance, or may need to get private insurance in the future, you probably DO NOT want celiac on the record books. Many, many people are denied private insurance because of things much less than celiac. I was denied insurance because I had ear infections as a child (26 years ago). Insurance companies are really funny about pre-existing conditions.

If you can't afford the enterolab, i would do a gluten challenge. Go gluten free for 8 weeks, then reintroduce it and see what happens. Make sure that you're not introducing anything else new at the same time. You will also likely want to avoid dairy because most celiacs have a short period of time where they cannot handle dairy. I can't remember if it's casein or lactose that you have to avoid. I'm sure someone else will post it for you.

Thanks for the link -- I checked it out -- and it seems a bit too much for my budget right now. So I think I will try my own "gluten challenge." I'm going to check on when I started gluten-free so I can make sure I wait the 8 weeks. Also it's good to know to avoid the dairy because I LOVE dairy and wouldn't have thought to leave it out while doing the gluten challenge.