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    Do you have questions about celiac disease or the gluten-free diet?

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hello all!

I have been reading up on this disease for a few weeks now and I seem to fit the "profile" in several ways. The problem is, that I am on vacation for a few months and can n ot get a diagnosis at the moment. So, I feel like its a guessing game from here on out until I get back home.

I am a 26 year old female who has an aunt with diagnosed Celiac disease.

I believe this all started around 2 years ago with itchy skin. Since then, I was told I have hives and have to take an antihistamine everyday for relief. This works, however, they are the type that do cause drowsiness :(

I do not always get these rashes but when I do, they can be severe, appearing in clumps. I have experienced these in several areas of my body, including the face. I also experience constipation, and I'm tired all the time, even when I wake up!

I did see a doctor and they drew blood, they didnt find anything but they did say I had a slightly high white blood cell count and something else that starts with a L? Not sure what that was, but they were not concerned about it. They wanted a follow-up but I neglected it until it was too late and had to take a plane to the United States where I am not insured and can not afford to pay to see a doctor (I am from Canada). I also experience constipation, or frequent bowel movements (one or the other). I don't know about the tounge thing, but it has a white coating that goes away if I drink alot of water.

While at an Italian restaurant the other evening, I had consumed a few slices of bread and some pasta. 15 minutes later .. my skin was bothering me and I could feel bumps coming on. So .. I figured I should stay away from wheat products and see what happens. So far, it's been four days since I've been avoiding ant type of gluton product. But I had some ketsup yesterday (vinegar), without thinking. I should get a book on the foods I need to avoid and all. I was just wondering, am I right to avoid gluten? Or am I just a hypocondrac? Either way .. :( ... I loved baking!!!! Now I feel like I have to re-learn cooking and baking. Also, how long does it take to see a difference in the skin condition? I think its a bit less severe, but I still have to take the meds. Any support or help is appreciated. Thanks everyone! :D

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Wow, tempted, that sounds very familiar to me.

I, too, was a baker, and now I'm having to re-learn how to do it! There are plenty of substitute and alternate flours out there to work with, though. The batters will look different (and taste different-- anything with soy flour tastes bitter before it's cooked, for example). So it can be discouraging, but you *can* make brownies and even cookies again. They'll be a little different, true, but when you're feeling better, you won't mind as much.

In my case, after about a week since an exposure, most of the hives will be gone. Though I have a few that are stubborn enough to last for months. Don't forget to check the ingredients in your meds. If there's something in it you can't have, you may be able to find a different formulation.

And honey, whatever you decide and whatever your diagnosis, you are *not* a hypochondriac. Do check in with your doctor when you get home.

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You're only on vacation in the US? Do you have a permanent residence in Canada? If the answer is 'yes' to both, I believe you may still be insured by whatever your provincial insurance is. Check with the appropriate authorities (or have somebody check for you here in Canada). I think you might have to pay the US doctors up front, send the bill into your Canadian provincial insurance, and they'd give you back the amount the same procedure would cost in Canada.

Of course, I might be wrong on this. But it sure is worth checking into! And unfortunately, you WILL test negative, even if you have celiac disease, if you just go on the gluten-free diet. If you're happy with just a positive dietary response without an official diagnosis, than just going gluten-free is fine. If, on the other hand, you would like an official diagnosis, going gluten-free now would be a big mistake. It's your call, as it's your body.

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A year ago I was in the same boat you are. I was on vacation for two months and was very sick. I felt for sure it was celiac, because my son had just been diagnosed. I felt SO aweful I decided to go gluten free and see how it went. I felt so much better I was thrilled. Then two months later decided to have the blood work done. It came back borderline for celiac disease. So my GI doctor wanted to do a biopsy. I didn't do the biopsy, because I didn't want to start consuming wheat again. Needless to say, it is ok to go ahead and quit eating wheat, but if I had to do it over again, I would have eaten it and had the biopsy done. Family I think may be more supportive and you will be more likely to stick to the diet. Even a year after I go into denial about every two months and "test" myself to make sure it still makes me sick!! It is very bad, but also very hard to follow the diet when you are feeling great and you forget how bad you felt before.

There are people that are better at this and have committed better then I have. I just get so frustrated when I can't eat anything. I am vegetarian too, so I had to give up my "meat" substitutes made from gluten.

I think you are on the right track maybe. Try and see if you can be seen here by a different doctor if you can. Otherwise it is up to you. I wish I had a firm diagnoses for myself.

Monica

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Thanks everyone!

Hmmm .... now I'm not sure what to do. I do feel a bit better, my tongue is no longer swollen when I wake up and the hives have diminished. I am here until Sept. so it is difficult for me to decide. I would enjoy eating some wheat again, but I do not look forward to the symptoms it creates. I do feel a small difference even though it's only been 5 days. But, I would like to know for sure if I have this or not. I will look into how much this would cost here and if I can get the money back. Im kinda on a very tight budget as is.

I'm still unsure about what to do .... keep you all updated! Thanks everyone. Also, any suggestions about hives? I really do not like the 50 mg of sedating meds.

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Your skin problem could be DH (dermatitis herpetiformis), which is caused by gluten. The only treatment that really works is being on a gluten free diet, unfortunately. Meds sometimes sort of work, but they don't fix anything. Gluten can cause hives, too, as well as psoriasis, eczema and other skin conditions. You could try a homeapathic eczema cream, mine gives me some relief. It takes one to five years for the DH to completely clear up after going gluten free.

Five days gluten free isn't long enough to know if gluten is the real problem. And of course, every time you eat bread and regular pasta again, you are undoing what you have accomplished with the gluten free diet, and have to start from scratch. If you keep doing that, you'll be just on a roller coaster. You need to make up your mind on what you want to do, and stick to it. If you want official testing, you need to keep eating a lot of gluten every day, or you skew your results. If you can't handle that, and go gluten free, you need to stick to that, and forego official testing. There is really nowhere in the middle of these two extremes that makes any sense.

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This whole thing is driving me insane! I am thinking about eating wheat again and seeing a doctor here, I found out that I can get up to 75% back. However, I do not want to do the whole biopsy thing .. sounds painful and costly! Is the blood test just as good? I'm still unsure about what to do, I feel like I should eat wheat and get an official diagnosis though, I do not like this uncertainty, its costly and emotionally painful.

I am in the Silicon Valley area and do not know where to find a doctor that is at a reasonable price, any suggestions? Thanks everyone!!

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