Discussions By Condition: I cannot get a diagnosis.

Several diagnosis of unusual diseases.

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: clipartfan
  • February 28, 2007
  • 04:44 PM

First, I am diagnosed w/ Celiac Sprue from my biopsy of my small intestine. Now I am diagnosed w/ Pityriasis Rubra Pilaris for my skin issues that are baffling everyone. Can I seriously have two rare diseases? I think they are both misdiagnosed and it something entirely different.

History:
Diagnosed w/ asthma (don't have it - but do have shortness of breath occasionally), eczema, psoriasis, hay fever.

I have issues w/ my bowels, I am constantly constipated. Which is opposite of Celiac's - they have diarrhea.
I have skin issues (looks like ringworm to me w/ a mix of vitaligo) but nothing that I have been prescribed even touched it. The only time it goes away is when I swim and stay in the sun.


Anyone in the same boat? Please tell me I'm not the only one!

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5 Replies:

  • Sounds like you have some autoimmune issues...go check out Johns Hopkins Autoimmune Center Website...you'll get some goood info there. Good luck!!!Jen
    Anonymous 42789 Replies
    • February 28, 2007
    • 07:39 PM
    • 0
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  • stay in the sun and water as often as possible.
    Anonymous 42789 Replies Flag this Response
  • stay in the sun and water as often as possible.I agree wholeheartedly.
    Anonymous 42789 Replies Flag this Response
  • This could be a rare disease, sarcoidosis.
    Anonymous 42789 Replies Flag this Response
  • Ahh!! I'm sorry I didn't see this post earlier and reply. I have issues w/ my bowels, I am constantly constipated. Which is opposite of Celiac's - they have diarrhea. This is one of the most common misconceptions about Celiac Disease. About 30-40% of Celiac's have diarrhea, 20-30% have constipation, and 30-50% have no digestive symptoms at all. Similarly, some lose weight, some gain weight, and some have no weight change at all. The common perception among doctors is that people with Celiac are skinny with diarrhea, but this is so wrong its not even funny . If you test positive on the biopsy, there is just about nothing else it could be.http://www.nlm.nih.gov/medlineplus/ency/article/000233.htm"Symptoms may be intestinal or seemingly non-intestinal in nature. This variability is part of the reason the diagnosis is frequently delayed. For example, one person may have constipation, a second may have diarrhea, and a third may have no irregularity in stools." I have skin issues (looks like ringworm to me w/ a mix of vitaligo) but nothing that I have been prescribed even touched it. The only time it goes away is when I swim and stay in the sun.Anyone in the same boat? Please tell me I'm not the only one!Have you tried dapsone and a gluten-free diet? Did they biopsy the skin to look for granular IgA? It sounds like Dermatitis Herpetiformis, a Celiac-related skin condition that can take 5 to 10 years to fully resolve after strict adherence to a gluten-free diet, althought mild to moderate improvement may be noticed as quickly as a few weeks or months. Treatment with dapsone usually prevents new eruptions and cuts the resolution time way down, but it also stresses the liver. It isn't a "cure" but it can speed up the natural healing process ONLY IF used with a strict gluten-free diet.Don't discount this if you see some of the more extreme pictures of DH on the web and it looks much worse than what you have. DH is as variable as any other Celiac symptom. For me, it looks like mild-moderate acne that itches worse than anything has ever itched before, but some of the pictures on the web of extreme cases look like they could be leprosy.The key is to learn about hidden ingredients and cross-contamination and then follow up with strict dietary adherence! Get a good support group - there's too much information online for anyone to try to go alone so you should find a place where people talk about coping with the issue and share advice on recipes, eating out, and even grocery shopping. It can take months, even a year or two for all digestive symptoms to resolve and even longer for the skin problems. I'm about 1 year into gluten-free and I usually feel great, but my stomach is telling me loudly this morning that I screwed up and ate something I shouldn't have.It IS an auto-immune disease but the good news is its the only auto-immune disease that is curable. No real need for drugs or surgery unless the diet is too much trouble, then you can have fun things like arthritis, lupus, and cancer! Sorry - I am guilty of trying to scare you into compliance :) We know about 3 million Americans have Celiac because of universal blood testing in other nations, but only about 2% of Celiacs have been diagnosed because of all the misconceptions floating around about it among American doctors. What do I mean by this? You're lucky to have an intestinal biopsy diagnosis!!! The vast majority of Celiacs are undiagnosed or self-diagnosed. Those of us self-diagnosed get no help from the doctors and it can even be a tough sell to friends and family and employers - even if those people see miraculous changes taking place, they won't really understand unless you educate yourself and educate them. Don't think of your diagnosis as a burden, it is a chance to be healed that most people with auto-immune diseases will never consider or be informed about. For most auto-immune diseases, the treatment is a shortened lifetime of painkillers and anti-depressents.
    Azaral 152 Replies Flag this Response
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