I'm New, And I Don't Know What To Do Now!

[Elfbaby]

Well, I am brand new to this forum. I have been suffereing from symtoms for about 5 years now. It started with a rash. I saw every dermatologist and they all said the same, weird eczema that didnt respond to meds (except high doses of steroids). Then I started having diarrhea almost every day, certainly every other day (sorry if that was TMI), and then finally, the rash spread to my hands, where it was these little blisters that oozed and crusted and turned into these big plaques and raw areas with deep cracks and bleeding. I am sorry, I realize this is gross, but I am not very far removed from these symptoms, so they are pretty vivid. Finally, about 2 months ago, I saw a dermatologist who suggested that perhaps a food allergy was to blame for the hands and body rash. So he send me to an allergist who I saw 2 weeks ago. She did a skin allergy test (the prick tests) and when she read the results, I had reactions to oats and wheat. She wasnt sure that that was my problem though and ordered a larger "patch test". But she also told me to go on a gluten/wheat free diet for the next six weeks until my patch test.

Here is my problem. It has been exactly 12 days since I stopped eating gluten, and my symptoms are gone. The rash on my arms and legs which I have had for 5 years is gone. The mess on my hands which has cause some red scar tissue is gone. (The rash is gone). And I havent had diarhhea for 10 days. So needless to say, this has worked. However, I have been talking with an aquaintence who is a nutritionist and lifestyle coach and she was telling me about the importance of actually being tested for celiac disease. My problem is, I understand that you have to be eating gluten currently in order to get the test done? I dont want to go back to eating it... my skin and stomach havent felt this good literally in years. I am afraid that when I go see the allergist next month and tell her that her gluten free diet basically cured me, she will want to order those tests...

This is a really long way of asking a simple question. Do I need to have that test done? Do you think the doctor will even recommend that test be done? And I guess, finally, will I really have to go back to eating the gluten and getting sick and itchy just to have the tests done?

Thank you so much. As I said before, I am brand new to this, and I have no idea how to proceed.

~Ella

[mushroom]

Hello, and welcome.

It saddens my heart to hear of yet another doctor who tells someone to stop eating gluten, without testing them for celiac disease first. For goodness sake, if you suspect that's what it is, test for it! Sorry, mini rant over. But they do it again and again!!!

Once a person goes gluten free and starts to get better, THEN they want to test them, and then the patient has to suffer through reglutening (usually a much more painful processs than continuing to eat gluten because your body has let its guard down and reacts with renewed fervor when confronted with it again). Of course, the doctor doesn't suffer these symptoms, just the patient whom he has advised to follow this path If you have in fact been gluten free for 12 days that is probably long enough to invalidate the blood test results unfortunately, and you would have to do the reglutening process to get tested. There is a range of opinions as to how long you would have to eat gluten for. Doctors will tell you one, or three weeks, or that it doesn't make any difference. Those who know, know that it takes a good two months of the equivalent of three to four slices of a bread a day. However, there is a glimmer on the horizon...

Reading your symptoms, it sounds ike your rash could well be dermatitis herpetiformis, which is the skin form of celiac. This generally forms small blisters on the skin and leaves a red scar as it fades. If your dermatologist would biopsy the skin next to an active lesion, she would probably find the antibodies to gluten there (but she has to specify what she is testing for and take the skin from next to the lesion, not on the lesion. And the good news is that often you can reactivate the lesions quite quickly because the antibodies in the skin take longer to recede. So if you were to make an appointment with your dermatologist now, and start eating gluten again, you might be able to get an active lesion and a positive result by the time you get an appointment If you stay gluten free for the full six weeks, it will be a long and painful process to get tested.

So should you get tested?? This is a decision each person makes for him/herself. Most people recommend getting a positive diagnosis if you can. It convinces you that you are doing the right thing in eating gluten free and you have a piece of paper to prove to the doubting Thomases that you have to eat this way - and you will find many Thomases out there. But if you are satisfied in your own mint that this is the right diagnosis, that gluten is the cause of your problems, and you will not be tempted to cheat on the diet without a diagnosis, then there is really not any need to be tested and punish yourself in the process. Also, some people who are gluten intolerant do not test positive for celiac disease, so you might go through all the suffering and testing and get negative results on the blood test and even on the biopsy. This does not mean that gluten is not the problem - it just means that you "failed" the celiac test

[gluten free overseas]

I live overseas in a place where they do not have the capability to test for celiac. I am new to this too--I felt like I was dying and was in the hospital for three weeks. It was terrible. Then my husband and a friend, thank God, came upon gluten intolerance, I went on a gluten-free diet, and it was like a miracle! More symptoms than I have counted have disappeared--everything from fatigue and joint pain to anxiety.

Now... I'm in the same boat as you... what to do? There is NO way I am going back on gluten to get that test when I visit the States. I also break out in a rash on my hands (sounds the same at yours) when I wash dishes that have had wheat pasta on them or when I use a hand cream that has wheat in it. Seriously, do I need to gluten myself and pay for expensive tests when it's so obvious?

I've heard but don't know for sure that you can get a stool test that does not require you to go off gluten. If you do have a paper with actual results, it helps you to get more medical help (since it's confirmed you have it) like you might want to check that your bones are not calicum deprived or whatever... I'm thinking it helps to have that paper that says you took the test and have tangible results. Also, you might want to have other people in your family screened, so it helps to have the test results as proof. So, that's a consideration.

I guess it's something to talk over with a good doctor. Good luck with your decision.

[maximoo]

Here is a link got stool testing

Open Original Shared Link

Perhaps you can have your own Dr do it.

Rather than subjecting yourself to reglutening I suggest having all immediate family members tested. Grandparents, Parents, aunts, uncles, siblings Its just a blood test. Some people have the gene but never develop celiac--you could get gene tested yourself w/o reglutening. If you don't have the gene I would assume its a wheat allergy. Insurance co won't cover gene testing so you'll have to pay for it. But if I were you I'd try to solve the puzzle w/o reglutening. Best of luck to you.

[eatmeat4good]

Heck with the testing.

I have the skin form of Celiac too.

I had a great response to going gluten free, but not nearly as quickly as yours!

Do NOT eat wheat even for the almighty test.

It could be negative even after you put yourself back on gluten and suffer the consequences.

Every Dr. I see tells me to get tested for Celiac now, but the 25 I saw during my 7 years of illness never suggested a test for Celiac. They tell me Dr.'s like to have verification if someone is going to be on such a rigid diet. Well, baloney. Make myself sick so YOU can know I need a rigid gluten free diet? Ludicrous!

If not eating gluten works for you and your serious symptoms have resolved then there is no need for the test...what you were seeking is The Answer to your problem. What you got was The Answer to your problem. And you got it without a test. I say good for you!

[Skylark]

If you're willing to go on the gluten-free diet strictly and you know it's the cause of your symptoms you don't need testing. There is no cure for celiac other than the strict diet. As others have mentioned, your rash sounds classic for dermatitis herpetiformis (DH) and if that's the case, you are one of the typical folks who has celiac and sees Dr. after Dr. without a diagnosis.

What you would need is actually a skin biopsy from an area next to the rash to test for DH antibodies. Is it worth it to you? That's YOUR decision. Some people like a "diagnosis" because they find the diet hard, or have pressure from friends and family to go off the diet.

I chose not to get tested. Making myself sick all over again was not worth it to me. My reactions to gluten are obvious and I have no problem defending my decision to friends and family.

[Elfbaby]

Thank you everybody for replying.

I still dont know what to think. I am satisfied with the diagnosis myself...All my symptoms are gone, who wouldnt be thrilled? I would love to say that I am not tempted to cheat... but I did yesterday at a baby shower. Within 3 hours of eating a tiny crabcake, I had hives on my arms. Now, I have never had hives on my arms from eating it before, But I know I didnt come into contact with a horse, so, thats the only thing I can think of. But, its pretty darn clear in my mind now. Cheating sucks. I wont do it again.

I think i agree with you guys though. Eating gluten again just to confirm something that I already have so much evidence for doesnt sound like fun to me. Gluten free is clearly the way to be for me. Thanks everybody!

[shadowicewolf]

Oh trust me, i've been through the mill with the doctors

Several stated that it was just a 'virus' and i needed to stop being such a whimp about it.

One suggested it was all mental, another allergies.

None wanted to do the blood test (which i had asked for, just to see how i was doing via vitamin levels and such).

It wasn't until i got a nurse practitioner that cared (she was the first one to examine my stomach!!!). She wanted to 'rule' celiacs out just in case....

Funny that it came back as to what i had. I suffered for years with D and other stomach problems/skin problems/ growth in general problems.

Do what YOU feel is right