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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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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
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