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12 Years! What's The Point Of Diagnosis?
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I have been diagnosed with: Psych issues, (for the skin rash mind you) Pregnancy rash (for 12 years?) subdermal something (basically they said you have a rash. We don't know what it is. Sorry.) adult eczema (none of the things I did helped) very mild allergies to trees, grass, mold, dust, animals (um, basically everything to cover their butts because they couldn't quite figure it out) In the 12 years I have seen as many Dr's. Every one with a different story. Most said it was an autoimmune thing but couldn't find it. None of them addressed the "whole picture" My extreme fatigue, the rash, my poop issues, depression, joint discomfort. Why do they always want to say that it is a psych thing? It seems they can't get past the depression. HELLO!

I have a couple of friends that are celiac. I figure what do I have to lose? Go on the diet for a week and my symptoms immediately relieve. Not completely clear but relief! This has affected my whole life. I can't wear shorts or sleeves out. Or I get, "wow the bugs really like you!" or the evaluating my skin with a disgusting look. Hey I can't help it. I wake up and I have scratched all night and I don't even know it. Or have my husband run his hand over a spot and pull back... Yea, that makes a person feel like being romantic. I worry myself crazy about getting MARSA with all these stupid sores...

Anyway, Why go to the trouble of getting an official diagnosis? I started eating my regular diet so I could be assured of a positive diagnosis. But I can't stand it. I itch so bad! What is the point of having the Dr's diagnosis? Is it for future issues I might have? I am happy to finally know what this thing is.

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Getting a diagnosis from a doctor is a personal thing. My family is not officially diagnosed, but we did have positive ELISA IgG tests as well as celiac genes.

I don't know whether we had progressed to celiac but consider us celiac due to the genes.

Be sure to check your soap/shampoo etc. for wheat/oats/barley or rye. I know wheat and oats are in quite a few.

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I do not have an "official" diagnosis. The genes and positive response to the diet is enough for me. If I have future health concerns, they can treat those. I do not see why having an official diagnosis would change future care. You will need to tell doctors/hospitals that you are "allergic" to gluten. But other than that........

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Not having the official diagnosis is not a barrier to future care. However, the celiac related symptoms overlap a lot of other diseases/conditions. Diseases also tend to occur in clusters. Having an autoimmune disease like celiac makes is more likely that you'll have other autoimmune diseases like diabetes or thryroid problems.

Bottom line is the more you and your doctor know the better off you'll be. Human bodies are complex and differential diagnosis can be tricky with overlapping symptoms.

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It sounds like you have DH (dermatitis herpetiformis), which is only caused by celiac disease. If you still have a lot of active blisters, you could have your skin biopsied (right BESIDE an active, blistery outbreak, never through it). If you are diagnosed with DH, you have your celiac disease diagnosis, without bothering with the regular tests for celiac disease.

You could also still go to your doctor and have your blood drawn to do the celiac disease panel.

Or you could just consider yourself self-diagnosed and just keep eating gluten-free (like me). If the gluten-free diet is relieving your symptoms, be glad and stick with it.

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Many people with DH suffer for various lengths of time and finally realize what is going on with their bodies. Glad that you figured it out, though! Once you find out that being gluten-free helps this, why would you ever eat it again? The one thing that everyone agrees on is that gluten-free helps this issue. Some times there are other foods that can trigger this condition as well, so I do recommend a food allergy test just to double check things.

Welcome to the Board!

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The only diagnosis I ever got was Wheat Allergies...I just stickwith that. I have never been diagnosed with Celiac...but I am German and Irish descent (sp??) so I figure I definately have the gene...that's good enough for me.

By the time I was able to get a decent diagnosis of Wheat Allergies I was covered (nearly 75%) with the rash. I was miserable!! Doctors kept telling I'd have to learn to live with it...ha! Like they ever could!!

I went on the WF/gluten-free diet full speed...and started taking a homeopathic fungal medicine called FNG that I got from my Naturopathic Physician. And I was 95% cleared up in only a few weeks. I stopped taking the FNG but continue on the Diet still. I now have only a few small spots on my hands...that I think will never go away...but I feel 100% better.

Perhaps you could check here http://www.naturopathic.org/ for a Naturopathic Doctor in your area who could help you.

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I can completely identify with your doctor problems. I also went from dermatologist to dermatologist and doctor to doctor to find out what was wrong. The last dermatologist I visited about it (17 years ago) also recommended that I see a psychologist to "Help you accept the diagnosis of severe acne." In the end, I figured it out myself. My son grew up to have the same condition--and in the same areas on the body/face--and we both have to eat gluten-free to keep the blisters at bay and to feel well. It's up to you if you want a true diagnosis, but if doctors give you the heebie-geebies like they do me, why bother? Now you know what is wrong, and you're on the path to better health--good for you!

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I have been diagnosed with: Psych issues, (for the skin rash mind you) Pregnancy rash (for 12 years?) subdermal something (basically they said you have a rash. We don't know what it is. Sorry.) adult eczema (none of the things I did helped) very mild allergies to trees, grass, mold, dust, animals (um, basically everything to cover their butts because they couldn't quite figure it out) In the 12 years I have seen as many Dr's. Every one with a different story. Most said it was an autoimmune thing but couldn't find it. None of them addressed the "whole picture" My extreme fatigue, the rash, my poop issues, depression, joint discomfort. Why do they always want to say that it is a psych thing? It seems they can't get past the depression. HELLO!

I have a couple of friends that are celiac. I figure what do I have to lose? Go on the diet for a week and my symptoms immediately relieve. Not completely clear but relief! This has affected my whole life. I can't wear shorts or sleeves out. Or I get, "wow the bugs really like you!" or the evaluating my skin with a disgusting look. Hey I can't help it. I wake up and I have scratched all night and I don't even know it. Or have my husband run his hand over a spot and pull back... Yea, that makes a person feel like being romantic. I worry myself crazy about getting MARSA with all these stupid sores...

Anyway, Why go to the trouble of getting an official diagnosis? I started eating my regular diet so I could be assured of a positive diagnosis. But I can't stand it. I itch so bad! What is the point of having the Dr's diagnosis? Is it for future issues I might have? I am happy to finally know what this thing is.

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    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
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