Gone Gluten-free, Seeking Testing

[Ilovetokillspammers]

Hi there everybody!

I'm sure this question has been asked before, but here I go with my (short as possible) story:

When I was 19 it was finally discovered that I had severe endometriosis. I had a laparoscopic surgery to remove the endo, and in hindsight, that's when my problems began.

Basically, since then, I've had GI problems. Usually it's diarrhea or just an intense urge to go NOW, but every now and then I get constipation. I always assumed that I had IBS, and carried loparomide (Immodium) with me everywhere I went (and took it on a daily basis).

While performing a show (I'm an actress), a co-star told me he just got diagnosed with Celiac. I had heard of it before, but never considered it, and asked him about it. I told him about my symptoms, and he said, "Girl, you totally have Celiac! Go gluten-free and see what happens."

Well, I'm also a bartender at a beer/wine only bar, so it was difficult to give up the beer, but I did it. I've been on the diet for two months and lost 12 pounds (I'm tiny to begin with). I feel SO much better, and my GI symptoms have virtually disappeared (the only time I get a re-currence is when I inadvertently digest vinegar that isn't distilled, which I find out after the fact). I only take the loparomide once a week now.

So, I'm pretty much convinced that I have Celiac. After the first two weeks, I was pretty sure it couldn't be psychosomatic anymore (especially since when I DO get GI symptoms, I find out about the gluten contamination AFTER and not BEFORE the symptoms).

So, my question is this: I don't have insurance, but I would really like to be formally tested. However, I've been gluten-free for awhile, and I've been told that I have to be on a gluten diet before being tested.

So...for HOW LONG to I need to add gluten to my diet before I can be tested? I can afford the expensive test, but not the consult before the test, so I'd like to know an answer to this.

Also, should I even get tested if the diet is working so well?

[mushroom]

Welcome to the forum.

Yes, your story is a familiar one; we are often not diagnosed by our doctors but by our friends/family/acquaintances. So we go gluten free and feel better. Then some of us decide we want the official diagnosis. Now we have a dilemma. Because in order to get the diagnosis we must consume gluten--two to four slices of bread or equivalent per day--for 6-8 weeks for a valid test, otherwise we won't be making enough antibodies which is what the test measures. The only problem with that is that when we go back on gluten we usually feel worse than before we quit because we are partially healed and our gut complains that it doesn't want gluten any more. So how much are we prepared to suffer for the diagnosis? To some of us it is important; to others it is the feeling better that is important and wild horses couldn't get us to touch gluten again (knowingly).

So really, the decision is entirely yours; you can stay off gluten and continue to heal, or go back on it (and probably suffer for a while) to get the official celiac stamp. Some younger people find it important (special dietary plans in the dorm at college, e.g.), while to others it is irrelevant because eating gluten free makes them feel better and they don't need a doctor to tell them not to eat gluten. While this may sound a bit flip, this is basically what it boils down to. Some people need the extra motivation of a formal diagnosis to stay gluten free. Some want to rule out any other problems and want to have the biopsy as well. There is no *right* answer to this question, only what is right for you

Good luck in your decision-making.

[samcarter]

I'm in a similar situation, but have decided to forego further testing. I suspected gluten was a problem for me after reading up on celiac disease and putting the pieces of the puzzle--my digestive issues, histories of RA and colon cancer in the family, psorasis, lethargy--together. My GP did the EMA test, which came back negative. However, I had felt so much better going off gluten, and subsequently so BAD after eating gluten for two weeks before the test, that I had my answer.

Part of me really, really wanted an "official" diagnosis. (I now know that EMA tests can come back negative in up to 20 percent of celiac patient). You feel like you are on more solid ground when it comes to asking waiters, family, and companies about their food. But, honestly, if you tell anybody you have celiac disease, are they going to demand to see a blood test? Most people take it at face value. So I've decided that instead of dancing around and saying, "Oh, I have gluten issues," or "That will make me sick" that I'll just say I have celiac. If it makes people take me more seriously, that's great. And I don't feel I need a gold standard of diagnosis. My body tells me what it likes and doesn't like. No blood test will change my mind.

[ang1e0251]

I am another self-diagnosed with celiac disease. I also couldn't afford the testing when the lightbulb came on and I won't go back on gluten just to prove it. After all, I only have to prove it to myself and my body already told me what's wrong. If other's doubt me, it's OK. I do mind that my dr isn't totally on board but every time I go, he's getting more of a clue.

Since no dr ever even suggested it, I feel I have the right to look after my own nutrition. That said, if you really want testing, that is your own decision. No one here, including myself, would ever fault you. Just get the tests right away and don't wait. It will be much harder later.

Good luck to you and keep us posted.