Monday, December 04, 2006

My Gluten Intolerance story, or a cure for insomnia

To start with, Gluten Intolerance is not an aversion to large butts.

Gluten Intolerance, or Celiac disease, can have many different manifestations and may show up at birth or anytime during one's life. It is thought that some people are genetically predisposed to having this. It is NOT an allergy, rather it is an auto immune response to a protein found in wheat, rye, barley and millet. They guesstimate that the incidence is about 1 in 133 people, although many people may not be symptomatic.

My particular "brand" is called Dermatitus Herpetiformis. My onset was about 8 years ago. I have read some papers that theorize that some onsets may be caused by stress and/or infections kicking the immune response into hyperdrive. I was both highly stressed and coming off an infection. The symptoms were very itchy, watery pustules on my knees, elbows, scalp and rear end. The literature describes the itchiness as "unbearable", but I found it to be only very uncomfortable.

After a LOT of testing, I was diagnosed. My initial reaction was that I could not give up pizza, sourdough bread and chocolate chip cookies. I was given a prescription for a drug called Dapsone which is also used to treat Leprosy. (That made me feel good!) The dosage was increased over time while my blood count and liver function were being monitored weekly. The side effect of Dapsone is that it "ages" your red cells prematurely. The goal was to give the highest dose possible without putting me into anemia. I have to say that the lab's blood count level for anemia and mine seemed to be different, and I felt very weak and tired even though I was above the threshold.

Another effect I felt was diminished mental function. I'm usually pretty good with logical thinking and retaining trivial facts. I felt like I was developing Alzheimer's, and I did not know that this was a side effect of the gluten intolerance.

I discontinued the Dapsone when I could no longer stand the anemia. I tried to become gluten free. The deal maker was reading that not being gluten free increased my chances for colon cancer by a significant amount. Going gluten free was harder in the days before labeling laws were strengthened. I was helped greatly by online lists of forbidden versus acceptable items.

For instance, who would immediately realize that licking of stamps and envelopes would now be verboten? Or the use of some kinds of medical tape? I never knew that Soy Sauce was made by fermenting in wheat. (There is one made with oats available in health food stores) Imitation crab meat-no go. Many ice creams (mono & Di glycerides- may be a wheat product) Label reading has become my life.

It's been a learning experience. Eating out is a challenge. I still have a better situation than many. On a scale of 1 to 10 for severity, I would say I'm about a 3. Some people are SO sensitive that eating a burger cooked on a grill where a bun has been warmed will give them severe reactions. I have accidentally eaten a bite of flour tortilla and all I got was an itchy rash on my stomach for 2 weeks.

Tests for gluten intolerance have gotten better and cheaper. I had to have 2 different pencil eraser sized hunks of meat taken out of my knee to be sent to UCSF for testing. I don't think they do that anymore. They used to do intestinal biopsies for other kinds of celiac testing, and I don't think that is necessary now.

I have read papers that theorize all kinds of things being tied to gluten intolerance, Crohn's disease, schizophrenia, arthritis, learning disabilities, autism and more. If you or a loved one has a problem that you can't get a finger on, or just want to try another way, I recommend a gluten free diet for a couple of months and see if there is a difference. What could it hurt?

Click on any of the Celiac sites on my sidebar to learn more.


  1. Well that kind of sucks, sorry about that.

    I am going to blame this on you know who. Are you with me?

  2. Lost me on that reference! But I'll back you up anyway!

  3. The thing that makes stay at my Father in Laws house impossible.

  4. Ahhhh, well mine's dead we'll have to blame yours.

  5. Excellent, we have a deal.

  6. One of my daughter's young friends has celiac sprue, a case so bad that she gets ill if someone touches something she ingests with soy or glutens on their hands.

    One of my friends didn't introduce wheat into her child's diet until the child was over 1, on the theory that the human body really isn't designed to eat the grains we depend on. I think grains and I get along fine, and I'm grateful for that. But perhaps I'm just fooling myself, as indeed I have a lot of skin ailments.