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laurap

Testing Vs. Self Diagnosis

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Hi.

I've been trying to figure out what kind of benefits there are to getting tested versus self diagnosis.

(My symptoms are not mostly GI-related. The big issue is SKIN! I've had eczema just about as long as I can remember, and in the past 2 years or so (since I turned 20) it's gotten so much worse. In the same amount of time I started having occasional issues with eating dairy, corn, etc.)

After doing some light gluten days, some gluten-free days I've begun to feel like it's all less random- I can actually notice myself becoming itchier after eating wheat.

So that seems to be the answer. I should eliminate gluten.

But should I go to a doctor to get tested? Would I likely want to see a GI doctor even though my main symptom isn't GI-related?

Would there be a difference in knowing specifically I am Celiac vs. gluten intolerant?

(And I know that I'd need to be eating gluten regularly for some time before getting tested.)

Thank you!

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The choice is up to you. As someone who also has skin problems as my main symptom, I wonder sometimes about my gut. Fortunately (?) for me, my Mom had celiac so I am fairly certain that I too have celiac, not just gluten sensitivity. It would be nice to have been tested, not so much for the diagnosis, but so I could watch my progress as I heal. I read here about some folks who have gone gluten-free and their followup tests still show damage or their blood tests don't show any improvement, even though they are feeling better. I'm not going to lose any sleep over it, but it would be nice to know.

I honestly think that if I had had insurance, I would have gotten tested. But I also know that I feel SO much better now, I would never go back on gluten in order to have those tests. All of the "other" symptoms that I didn't even KNOW were symptoms have cleared up. It WASN'T just that I was getting older after all!

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I guess the other half of my question is how to get tested if I do.

Should I go to the dermatologist first? Can they test my skin to see if I actually have DH?

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I decided not to get tested, because cutting a piece of intestine doesn't sound so beningn to me, and I believe it encourages cancer growth in a long term, and blood tests seem to be not very accurate anyway.

Of course that leaves me to try and see, if I am just gluten sensitive and can be not that awfully careful with trace amounts as celiacs have to be.

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I think you made the right choice...I recently read the book "Wheat Belly" by Dr. William Davis. He makes a case for the idea that no one should eat gluten. Check it out! I, too, was having issues w/diagnosis or not, and this book helped me. I decided that I would give up gluten even if I didn't have celiac, for my overall health.

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I found it helpful to get tested because I was nervous about going entirely gluten-free, although I had greatly cut back my wheat intake already after reading Wheat Belly (GREAT book). It's almost easy (for me) to stay gluten-free when I know it damages me. If I was "just" gluten intolerant, there's a chance I would have cheated since the damage done wouldn't be as great.

Corn and dairy sensitivities often result from a damaged celiac gut... gluten-free diet could be helpful.

I would personally get tested. Celiac is an autoimmune dises and is often linked to other AI diseases. My celiac was untreated for so long that I deveolped other AI diseases that I might not have found if I wasn't aware of the link.

Best wishes.

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I decided not to get tested, because cutting a piece of intestine doesn't sound so beningn to me, and I believe it encourages cancer growth in a long term, and blood tests seem to be not very accurate anyway.

Of course that leaves me to try and see, if I am just gluten sensitive and can be not that awfully careful with trace amounts as celiacs have to be.

The idea of cutting out more of my intestine (I'm already missing 2/3) is exactly why I will not be getting that particular test. I've just self-diagnosed at this point and I've only been gluten-free for 2 weeks, but the last two weekends, I've been accidentally exposed and felt not only a return of my GI symptoms but they were even worse than before I went gluten-free. I've also gone dairy free as I read here that doing that can help heal the intestine, so I'm doing everything on my own that I can to make myself feel better.

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just to clarify:

During an endoscopy, a doctor takes a very small piece of the lining ( inside layer) of the intestine. They can't take big pieces of your intestines out during an endoscopy. They don't cut all the way thru the intestine, either. That would leave a hole that would leak into your abdominal cavity and make you very sick or kill you.

On my path report the sizes say - 0.3 to 0.6 cm and 0.2 to 0.5cm

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It's almost easy (for me) to stay gluten-free when I know it damages me. If I was "just" gluten intolerant, there's a chance I would have cheated since the damage done wouldn't be as great.

I have to agree with you! I think I'd be the same way. :)

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I guess the other half of my question is how to get tested if I do.

Should I go to the dermatologist first? Can they test my skin to see if I actually have DH?

If you are having an active outbreak of DH, the dermatologist can biopsy the skin next to an active lesion. On the rash itself, doesn't work.

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Laurap - I have NOT been officially diagnosed with celiac but to me it is important that I am. Problem is, I am currently eating gluten-free and am not willing to "glutenate" myself for this test - main reason being that I suffer from severe vertigo attacks and feel they have been caused in part by gluten, but there is no proof in this, it may be purely coincidental.

I developed quite a bad 5-6 month long skin rash rash last December and it had all the hallmarks of dh but that biopsy was negative which really distressed me. I so wanted finality to whatever is wrong with me. I was eating gluten-free at the time and am guessing I had some cc, enough to make a rash but not enough to test positive.

One reason I want to know for sure is because "eating gluten free" is considered by many a fad diet and a lot of doctors pooh-pooh those who say they have felt so much better since going gluten-free. My doctor already sees me as an extreme hypochondriac so for me to add in celiac when a dh biopsy was negative just gives him more reason see me as a whacko. I want to be proven that I have celiac so I can say to him, see, after all these years there really was something wrong with me.

Another reason I want to know for sure, should I ever be hospitalized for whatever reason and am unable to cook for myself or even talk for myself, if I do have celiac I want it on record so that I can have gluten free meals. A positive diagnosis carries a lot more weight than a self diagnosis in a situation like this.

And in a similar situation - some people consider me a little eccentric because of what I won't eat and the fact that I won't eat in restaurants at all. If I could say with certainty that I eat like this because I have celiac, that sounds better than I think I have celiac.

And also, because celiac does come with a higher risk of certain diseases I want it on my permanent medical record so that doctors can be aware of what to watch out for.

And if I do have celiac I want my blood relatives to know that they also have the potential for this and should consider getting tested.

And most important, I want to know for sure what my problem is because it may have nothing at all to do with gluten or wheat. There may be something else that is wrong with me that could be easily cured but the doctor is missing it entirely. Or worse, there could be something seriously wrong for which I need major treatment. For this reason I want to cover all bases and get a definite diagnosis. To be proven that I don't have any gluten problems and can eat like a normal person - wow, I wouldn't know where to start!!

I have no fear of getting an endo biopsy and would do it in a heartbeat if I didn't have to eat gluten.

Yes, they can biopsy the skin if you have dermatitis herpetiformis. I don't think it will work for eczema though I could be wrong. If your only problem is with your skin and you haven't been eating gluten free there is a good chance your intestines will show some damage so an endo biopsy would probably be helpful in determining if you have celiac. Have you discussed this at all with your dermatologist? If not, I would say start with him, though beware, a lot of dermos are clueless about the celiac-skin link. He may know of a good GI doctor in your area.

Jane

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As I was asymptomatic, in order for me to believe the doctor about my diagnosis through genetic testing I had to get the endoscopy. My doctor practically forced me to. Talk about denial! I also had the colonoscopy to rule out other stuff. The endoscopy was easy peasy. The colonoscopy was almost easy peasy but the prep was not exactly exhilerating. It wasn't bad, though. So, for me to follow the gluten-free diet absolutely I HAD to know in my mind. I would always be wondering and that would drive me crazy. I am very glad that I did. At the same time, for those of you who get glutened badly, I understand not wanting to go on the gluten challenge.

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