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Guest doradomiel

By Guest doradomiel
in Related Issues & Disorders

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Guest doradomiel
Guest doradomiel
Posted

It all started with the pain in my stomach that was barely looked at by the doctor and written off as an ulcer, even though I hadn't had an endoscopy. I followed the dietary suggestions and the pain just got worse. Meanwhile, I was losing weight without even trying (20 lbs in 2mths). After that the head to toe itching and extremely horrible non responsive beard of bumps (from ear to ear only-no where else at the time) that I took to be acne began to grow. Finally when even a bowl of oatmeal burned my stomach, I went to seek help again.

The doctors were thinking cancer in the GI tract. With all my symptoms: Pain, weight loss, lethargy, hardly able to eat without making matters worse. Anyway, they did the colonoscopy and endoscopy- saw some "inflammation" in my stomach and tested that for cancer. Nothing. I was depressed about my face and came across a book about skincare by a Dr that said some people have wheat and/or dairy allergies and don't know it and that their "acne" was really an allergic reaction. Well, I stopped eating wheat and dairy and my face started going down. And then I realized that I stopped itching and that my stomach was getting better too!

So I told my Dr. that I had stopped eating wheat and dairy on my follow up visit. He proceeded to say "Well if you know that's what's wrong with you keep doing what your doing! You're doing well, and gaining your weight back...". Then I asked about celiac and he agreed to test me. But it came back negative. Now I know that he tested me in vain, because you don't make the antibodies if your not eating the allergen. But I didn't care what he said I was better and I knew why.

Then I started going back downhill again and didn't know why. I found out that they put wheat in almost all the skin, hair, household products that I used. So I changed those. It got to the point that me and my family couldn't use the same PC without my face breaking out and getting a stomach ache-from touching the same keyboard. My little brother eats any and everything, then jumps on the PC with out washing his hands.

Now, I can't touch A SURFACE without my skin having a reaction. So I'm always broke out and on my face and now I get crazy itchy welts on my arms, legs, feet, anywhere my skin is covered. I constantly wipe down with isopropyl alcohol to help my face and the itching. I almost killed myself taking sooo much benadryl because 2 was never enough to keep me from itching and breaking out. And since the Dr doesn't want to say I have CELIAC, I don't have any help and was trying to treat myself the best I could.

Finally, I went to an allergist today. He puts wheat and dairy on my arm and waits 15 minutes for a reaction on my arm and sees nothing. And so he took some blood and said he would mix the allergens with my blood to try and note an allergic reaction. But my joints started aching, when I leave the office my stomach was aching, and I arrived home with a NEW crop of bumps on my face.

I'm sick of these doctors! They seem determined NOT to diagnose me with celiac! But I think it is Celiac and I need something that will stop me from looking so hideous and feeling so itchy ALL THE TIME. Can somebody PLEASE point me in the right direction? What other test can they do? Because I don't ever want to go back to eating gluten+dairy! It was AWFUl. I need a shot or something to protect me from these reactions! Would dapsone help me?

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gary'sgirl Explorer
gary'sgirl
Posted

I don't think that there are any meds that can help a reaction from gluten if you have Celiac Disease. The only treatment is to not have any gluten. Celiac Disease is different from an allergy - it is actually an autoimmune disorder, and as far as research knows so far there is no treatment to stop a reaction.

I believe many people on this forum have had good results with Entero Lab doing tests even after going off of gluten. You can go to their web site and it explains how the test works.

As far as your reactions, just do what works. It doesn't matter if the doctors don't think you have Celiac disease - most docs are really hard to work with when it comes to stuff like this, because they don't know much about it (and they usually hate to admit it).

One thing that could be aggravating your skin problems is using alcohol on it. The alcohol will irritate your skin and make it more susceptible to whatever you are reacting to. A few things you could try to sooth the skin are extra virgin coconut oil or extra virgin olive oil (they don't clog pores), California Baby lotions (they are free of the most common alergens and really help with many skin problems), maybe even aloe (make sure the aloe is pure if you try it).

I really hope you can find some answers. Try to get your family to help by making your home as free of gluten as you can, because it is really easy to cross contaminate.

~Sarah

David in Seattle Explorer
David in Seattle
Posted

It all started with the pain in my stomach...

DD - Sent you a PM.

David

Guest doradomiel
Guest doradomiel
Posted

Thanx Sarah!

I appreciate the suggestions. I think I will invest in getting tested for the celiac gene. I heard it's kinda expensive. My mom is supposed to be getting tested too. She's got stomach problems too, is getting scary skinny, and her white cell count is low. The good thing is she's still eating whatever she wants, so she should be making the antibody. My little bro is autistic, so he's also sensitive to gluten and dairy. So yeah, I think I need to get in touch with Enterolab.

Guest doradomiel
Guest doradomiel
Posted

Thank you for your replies. If anyone else can think of something, I'm all ears... Or eyes. You know what I mean :)...

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