[kneed2no]

I believe I have celiac disease although my lab tests some years ago were negative. I have many intestinal symptoms, pitting of my dental enamel, bleeding gums, etc and more recently was diagnosed with vitamin D deficiency and osteopenia (even though I have been gluten-free for about 5 years).

There is a rash that I have gotten about 6 times in the last six years. It is very itchy in nature. I am suspicious that it is dermatitis herpetiformis. I got the rash again about a week ago and decided to go to my doctor requesting a biopsy specifically for determining whether it is dermatitis herpetiformis. I saw a family practitioner (not my regular doctor as she was out) and it appeared that perhaps he wasn't real familiar with the procedure. I had to make sure that he understood that the biopsy had to be from the normal-appearing skin and not just lesional skin. He took a punch biopsy including both apparently. After I left the office I got worried that he wouldn't order the correct staining. So I called the office and spoke to his nurse. She seemed to tag me as one of those nut cases that maybe thinks she knows more than the doctor. She ended up telling me that we should "wait and see what the lab report shows" and that the "doctor will do what is best for me". I told her to be sure and remind him that the biopsy specimen had to have the immunoflourescent staining for the normal appearing skin and hemoxylin and eosin staining for the perilesional skin.

However, my doctor called this afternoon and said that the biopsy showed nummular contact dermatitis. I asked if the immunoflourescent staining was done. He said no, "they (the lab) could tell it wasn't necessary after initial evaluation" WHAT?! That is why I had the biopsy - for the specific reason of determining whether it was DH - of whether I had IgA deposits. I specifically went in and thought the doctor understood that the question was about DH!!! Good grief. Now I have a doctor, lab bill for something that is of no value to me. Not even what I was after.

[jccgf]

If I had a nickel for every time some testing or another was done wrong like that because the doctor just didn't know what he was doing. I've heard from people whose doctors ruled out celiac disease by colonoscopy without ever doing an endoscopy. Or ruling out celiac disease by endoscopy without ever taking biopsy samples.


You know more about the details of dx'ing DH than I do so I can be of no assistance there.

Good to know you are sticking with a gluten free diet despite your lack of diagnosis. I understand your desire to have a formal diagnosis and what you sought by a biopsy for DH was a great effort. Unfortunately your plan was foiled.

All I can offer is reassurance that you are not a crazy person, and encouragement to just stick with a gluten free diet despite the lack of formal diagnosis. Many of us are gluten free because we know gluten is a problem for us. The medical literature is full of examples of how the standard testing is not perfect. And there is more evidence and understanding every day that one can have gluten sensitivity without meeting the strict criteria required for a celiac disease diagnosis. Many people with DH and gluten ataxia have no biopsy evidence of celiac disease, whether they have co-existing gastrointestinal symptoms or not.

I am sorry you wasted your time and expense for a test that was worthless. There oughta be a law. There may be a way to challenge that expense, but even if there was, it probably wouldn't be worth it. You might write a letter to document the situation and send it to the doctor and the insurance company... and then look for a new doctor . Never know... the insurance company might have interest.

I guess the hindsight message is to put in the leg work before hand to be sure you are seeing a doctor who actually knows about the condition you are seeking testing for. I know I learned the hard way that most doctors are sadly uninformed about vitamin deficiency and gluten sensitivity... and the wide ranging systemic disease both can cause. Been there, done that.
http://sites.google.com/site/jccglutenfree/thestory

Cara

[northernlights]

I had a biopsy not long ago, one specimen in salt water, and one in formalin. They need to be put into the right fluids first.

(they were negative, but I was on too little gluten beforehand first I think)

The doctor must write the right order to the lab, of course, not just send a biopsy and let the lab decide....

Can you re-do it?

I would love a diagnosis because I think I should not be around wheat flour dust at work one day a week for an hour. A diagnosis might help me with arguments.