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southpawami

Can You Have Dh On Your Hands And Gluten Sensitive, But Not Celiac?

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As the usual goes... I've been on and off the gluten free diet... or as close as I know how to get, three times now. Twice in 2006, once in 2007. Anywhere from a month on the diet, to multiple months straight on the diet. And of course, I feel healthier on the diet, my back stops hurting about a month into the diet, my mysterious eczema goes almost fully away, and I seem to think quicker and learn better.

These symptoms

  • bone or joint pain
  • fatigue, weakness and lack of energy
  • depression

I have when I'm consuming a mixed diet with gluten and non-gluten foods. From my dieting experience, the fatigue/lacking energy/seeming like a bunch of laziness goes away the quickest, followed by a long time waiting (4 weeks about plus or minus) till the other two symptoms go away. The closer the last time I was on the diet, the faster the depression disappears, though the pain in the back is quite the stubborn one that likes to hang around for weeks. Also, I have noticed that the longer I'm on the diet, the longer it takes for the symptoms to appear when I go off the diet... sometimes weeks/months... but go figure... those symptoms just get progressively worse over time(and vice versa). And since nobody can see these symptoms as they aren't physically seen, except the oh-so-common eczema... well I just feel like a hypochondriac or crazy. (Reminds me of someone I knew with fibromyalgia... since there was no obvious physical evidence of any real unique sort, it seemed hard to believe she really had it or that it existed for that matter. Incidentally... I got diagnosed as schizo[aka.. see things/unsocial] quite the while back.. a couple years after a mental breakdow recently n... and after months on the diet[5 years later], I seem to think clearer, remember more easily, and learn quicker than I have in years.[aka.. feel better.. don't see things.. got me, how does a diet do that again?])

In early 2006, I guess it was... one of my family members... not my parents, told me they got diagnosed with Celiac disease not long ago. They nearly died by something like starvation before a doctor finally suggested getting tested. That family member was found to have the disease and found also to have had symptoms for at least 30 years prior to the diagnosis. They told me to get checked out... and I was like... naw... that's okay.

A short time later, I looked up the disease, and the symptoms. And for the most part... a good portion of the 'other symptoms' I've had for a while. The common symptoms I've never really had... which is the only thing doctors seem to ask about. I did have a blood test while I was on the diet for about 3 months prior to the test, and the results were negative. Due to those results, one of my family members... not the same one that was diagnosed... told me that I don't have Celiac... which is fine if I don't... but the diet has done the same things 3 times in a row. I've been my own guinea pig here.

More recently... in some question whether that family member was right... and if I was just imagining things being that nobody else can see these things right off the bat, so they just assume you're living life better, making better decisions... I decided to test it and perhaps I was testing God, but I wanted to see if a gluten happy diet would do anything bad. Unfortunately, now... instead of an annoying tiny eczema that seemed to pop up on my right upper wrist randomly throughout the year starting 2004ish, my eczema now covers all four fingers on both hands in a nearly identical lay. And, I even started to see a thing or two once in a while.(It took months to stop seeing things the first time I went on the diet) Also, as usual, my back/bones started hurting again. I figured I'd try to get a biopsy, but after finding out that it was 1000 dollars cash for the pre-pay inexpensive version... I simply can't afford it right now.

Now.. of course... I can say that eczema happens to so many people... it isn't this. However... time in and out of the diet has shown me that the eczema subsides when I'm on the diet, and gets worse when I'm cheating on the diet. So... roughly over a year and a half experimenting with this diet... and I've come to the conclusion that the diet certainly does something. But it takes so long to do it, everyone thinks its something else. Which just makes me wonder about myself(generally I only start wondering about myself a bit after I start cheating on the diet... cheating seems to affect my judgment at some point which is not cool. Actually... scatter brained... unfocused... seem to be eventual guarantees if I continue cheating on the diet. **selfishly ponders... remembers how his mother acted scatter brained and generally unfocused and how she was the only child of 4 that didn't get a life threatening disease... hmm**)

So, after so much experimentation... though I'd like to experiment more, I fear worse eczema... I've come to a conclusion that I shouldn't be consuming gluten. Problem is, since none of the main symptoms are ones that I have, and my dual nearly identical eczema isn't even where it's supposed to be, lol... I'm in a strait of trying to figure out what I have, without the extra money for gold tests and the desire to not get worse which going back on gluten even for a test is going to do.

As you can guess... the eczema got so bad and someone told me fonder memories of a time when I was on the diet... I went back to that most inconvenient diet to live the better times and not bleed from itching and be more focused and remember easier and not hurt at my bones in my back... etc... etc.. etc.. Only a week on... thinking is still a little fuzzy and memory is no steel trap... and still a bit depressed and lonely(which causes me to act needy and call people too much and then detest myself for acting needy, lol)... how annoying.

So anyhow... can I have gluten sensitivity and DH? And if I had gluten sensitivity and DH, that wouldn't show up on the blood test, right? And three months into a gluten free diet before a blood test isn't going to affect it, is it? I mean, doesn't it take longer to change the test results?

And also, can someone confirm my knowledge of how this disease is? From what I understand, you can be born with the gene or 'what not' that causes the Celiac disease but you won't actually get Celiac disease until a trigger of Emotional or Physical stress activates the disease. This trigger as far as I know is required for the disease to become active, and this trigger is known to happen anytime from birth to sixty plus. Is that right?

Finally, I recently read a statistic that Celiac disease takes an average of 11 years to be diagnosed correctly after onset. Is this true?

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It sounds to me like you should definetly be on a gluten free diet. If you have DH, then you definetly have Celiac disease, but you don't have to have DH to have Celiac disease or Gluten intolerance (2 different things). Gluten intolerance won't show up on a blood test, and occaisonally Celiac disease won't show up on blood work.

You could always try out enterolab (http://www.enterolab.com) and get some gene testing done for Celiac disease and gluten intolerance. It is cheaper that the $1000 copay for a biopsy.

If you still don't want to do that, then my suggestion is to try the gluten-free diet for 6 months to a year, then "challenge" yourself with gluten and see how you feel. Give it a longer try than you have done before.

ptkds

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It sounds to me like you should definetly be on a gluten free diet. If you have DH, then you definetly have Celiac disease, but you don't have to have DH to have Celiac disease or Gluten intolerance (2 different things). Gluten intolerance won't show up on a blood test, and occaisonally Celiac disease won't show up on blood work.

You could always try out enterolab (http://www.enterolab.com) and get some gene testing done for Celiac disease and gluten intolerance. It is cheaper that the $1000 copay for a biopsy.

If you still don't want to do that, then my suggestion is to try the gluten-free diet for 6 months to a year, then "challenge" yourself with gluten and see how you feel. Give it a longer try than you have done before.

ptkds

Thanks for the website... I'll read up on them. A cheaper way to test is more than welcome.

Yea... I think it's just that 'unresolved'... or 'no medical evidence for others to see' that is what is driving me a little batty.

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