dilsmom's Blog

Just insist that they test you. They are working for [i]you [/i]and it's your decision. Doctors think that celiac disease is rare, but it's not. That's probably why they are resisting the test. Be aware, though, that false negatives are common. My mother tested negative with her blood test. Since she still was suffering with symptoms, her doctor suggested a DNA test (a simple mouth swab) and it came back positive. My sister's blood test was also negative. She couldn't afford the DNA test (she had the blood test while she had insurance), so she went on a gluten-free diet anyway. She's much, much better.

I would expect that your doctors have already checked you for anemia and/or low B12 levels, but just in case they haven't, you should ask for that, too. celiac disease prevents our bodies from absorbing nutrients and sometimes that means B vitamins (it did for my daughter, who was 21 at the time, but not me...this is a weird disease). Anyway, my daughter's symptom was severe fatigue and it turned out that her B12 level was dangerously low. B12 shots perked her back up and she now supplements with sub-lingual B12 (pills that dissolve instantly under the tongue and are absorbed that way rather than going through the intestines).

BTW, that "chronic psoriasis" could be dermatitis herpetiformis. Tell the docs to put that in their pipe and smoke it.

Thanks. My ENT saw the "Psoriasis" and asked who had diagnosed it, because he said he had doubts that it was actually psoriasis. I have been on so many meds for so many different things that at first I thought too much meds may have exacerbated all my issues. Have you had lots of gastro issues? I feel like my life has become a series of dr. appts and nothing else. My physician at UNC is sending me a copy of all the tests that he performed in January. Finally, I may have at least found someone who thinks all my issues may be linked. I have been trying to get someone to at least consider that fact from the beginning. Do you know if hearing loss is a common side effect of Celiac? Thanks for listening

Fortunately, I was diagnosed before I had many problems. I wasn't even looking for any diagnosis. The only noticable symptom that I had was acid reflux and I thought it was normal, although it was slowly getting worse. I found out a relative had celiac disease, and I thought some of my other family members had symptoms. I knew it was genetic so I recommended testing to all of my immediate family - never thinking that I had it myself . Well, I do, as do both of my children.

Now that I've been on the gluten-free diet for a few years, I've become more sensitive to gluten. I don't know if it is a natural progression of the disease and would have happened anyway, or if, after being off gluten, my body has lost it's coping ability to handle gluten. Anyway, when I accidently get gluten, depending on how much I've eaten, I get acid reflux, nausea, stomach pains, and diarhea.

My symptoms are mild compared to many of the people who post on this board. Read the other blogs, or go to the message boards and read about other people's experiences with this disease.

This site (celiac.com) has loads of information on it. Look at the lists of diseases and disorders associated with celiac disease and see if you have those:

Here's some information on dermatitis herpetiformis:

And, no, I haven't heard of hearing loss being associated with celiac disease, but I don't know everything.