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12 Years! What's The Point Of Diagnosis?

coffee1

By coffee1
in Dermatitis Herpetiformis

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coffee1 Newbie
coffee1
Posted

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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AndreaB Contributor
AndreaB
Posted

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.

ShayFL Enthusiast
ShayFL
Posted

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........

Tim-n-VA Contributor
Tim-n-VA
Posted

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.

Ursa Major Collaborator
Ursa Major
Posted

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.

linuxprincess Rookie
linuxprincess
Posted

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!

CarolAnne Apprentice
CarolAnne
Posted

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 Open Original Shared Link for a Naturopathic Doctor in your area who could help you.

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RoseTapper Newbie
RoseTapper
Posted

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!

Jenm4cm Newbie
Jenm4cm
Posted
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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      Oops! @Staticgypsy, I’ll get the book! Thank you! 
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      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
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