gluten free recipes

By Mary Frances Pickett

I Don't Have Celiac Disease

May 14, 2008

This may be a long story, but I found it so interesting that I’m going to share. There. You’ve been forewarned. After the incredibly busy time in my life that I will not refer to by name for another nine months or so, I got back on a strict gluten free diet. I expected most of the tummy symptoms that I was having would clear up relatively quickly and I was excited about feeling good again. After a few days the stomach cramps were gone, but other symptoms were still proving to be a challenge (This is a food blog, I’m trying not to be too specific!). After a few more days, I was beginning to get worried. After 3 weeks…well I called and made an appointment with an allergist.

So many of my fellow bloggers and my readers have multiple food allergies that I was convinced that I must have developed an allergy to soy or corn. I mean otherwise I would be getting better, right? Giving up tofu at this point was not going to be easy (I really do love the stuff) so I decided to have food allergy testing done before trying an elimination diet. I went into that appointment convinced that the terrible tummy culprit was soy or corn.

The doctor was great. He took a long and detailed history of my symptoms and was not disbelieving when I told him that I had issues with wheat and suspected celiac disease despite a negative blood test. (points for him) He then gave me a brief rundown of how allergies work. Basically on one end of the spectrum are the people that eat peanuts and have an anaphylactic reaction and on the other end are people that have nasal congestion due to pollen. Somewhere in the middle are people who eat an apple and have an allergic reaction because they are allergic to trees and their bodies realize that they just ate a tree. That made sense.

We discussed potential food triggers that I wanted tested (soy, dairy, corn, wheat, eggs, spinach and tomatoes) and the environmental triggers that he wanted tested (trees, grass, dust mites, dogs and cats). We eventually came to an agreement and he said that the nurse would be in shortly to administer the test. At this point I was pretty excited. This doctor had really listened to me and seemed interested in figuring out what was wrong. He seemed particularly curious about the intestinal symptoms and about how the wheat test would turn out.

In case you’ve never had allergy testing, I fill you in on all the itchy details. The nurse had me swap my shirt and bra for a paper shirt and lay face down on the table. She then proceeded to stick my back in 6 places with what felt like a circular stamp containing multiple needles. (This was later confirmed when I found out I got 47 pricks on my back). Before leaving the room, she told me that she’d be back in 20 minutes and then shut the door.

Before two minutes was up I had become convinced that a swarm of mosquitoes had attacked me. I decided that this was “not a good sign” and began contemplating complex tax issues. That helped some, but my contemplation of the distribution/contribution/ asset sale ended up something like this: “So, if the partners receive $x cash and the liabilities go away, then aaaaggghhhhh their at-risk basis will go down ooohhhhhh it itches but they will still be positive because of the gain WHEN WILL THIS BE OVER!!! where was I?

Twenty minutes later the nurse reappeared and seemed amazed at the size of the hives on my back. I decided that this too was “not a good sign” since she should see things like this every day. Then, to my utter frustration, she then went on to measure the hives and take copious notes regarding the state of my allergic reaction while remaining absolutely silent about what any of this itching meant. Besides saying “You’re quite allergic” which was exceptionally helpful (sarcasm alert).

I got to reclothe by body at this point and she gave me six additional shots in the arm to make sure that I wasn’t allergic to items that appeared negative on my back. She left the room and  since I was expecting to be alone for the next 20 minutes I whipped out my BlackBerry to start rescheduling appointments (I’d already been there for two hours!). Within a few minutes another nurse popped her head in and asked if she could see my back. Evidently Nurse #1 had commented that “We should have checked on her earlier.”

Nurse #2 was amazed as well and asked why I had come in. I explained about the tummy issues and she seemed genuinely shocked. This nurse seemed a bit more chatty so I asked her why she was so surprised. “Because you’re really allergic to grass and trees.” Grass and trees??? At this point Nurse #1 stuck her head in and said, “I have a movie that you need to watch on dust mites.” Dust mites??? “What about the food tests,” I asked. “Oh, you’re only allergic to wheat.”

At this point I was extremely happy (I still get to eat tofu) and extremely puzzled (trees and grass???). The wheat didn’t really surprise me and explains why my heads gets all itchy when I accidentally use a shampoo containing wheat. And, incidentally, it explains why my my blood test came back negative. I don’t have celiac; I have a wheat allergy.

The doctor came back by the room to explain the results of the test. Basically, my biggest allergens are grass and trees. All of the yucky intestinal symptoms are due to oral allergy syndrome which is a condition in which the body mistakes food proteins for pollen proteins. When the body sees the “pollen” in the digestive system it initiates an allergic response that can mimic the classical symptoms of celiac. The doctor said that I am so allergic to plants and trees that any ingested plant food could be causing an allergic reaction.

My immediate response, of course, was to ask what foods I shouldn’t eat. The doctor laughed (in a friendly manner) and said that I am so allergic to plants and trees that any ingested plant food could be causing an allergic reaction. If I were to avoid every food that could be problematic I wouldn’t be able to eat anything but meat. He did say that I should avoid wheat since I am definitely allergic to it, and to avoid any foods that I know cause issues, like dairy.

The doctor subscribed some medicines to calm my body down, and then told me about allergy shots. The shots are the only long-term solution, but they are expensive and require a time commitment of 3 to 5 years. Right now I’m thinking that I will stick with the medicines until we can save up the funds for the shots (possibly $4,000 for the first year alone). However, if my symptoms do not get better I may rethink that strategy.

I wanted to share all of this with you in case you’ve never heard of oral allergy syndrome. Nurse #2 told me that she had worked with allergists for 15 years, and it was not until this doctor joined the practice two years ago that she had ever heard of oral allergy syndrome. Before having the allergy testing I would have sworn to you that I have celiac. But I don’t. And with what is hopefully a correct diagnosis, I can start taking the additional steps that my body needs in order to heal.

If you’d like to learn more about oral allergy syndrome just follow the link to a Wikipedia article that my doctor recommended. It has a great table that lists all of the food that you may react to if you’re allergic to a certain pollen. After reading that, you’ll understand why he said that food elimination is not an option.

We will of course continue on the gluten free diet. John does have a celiac diagnosis and there’s no way I’m giving my child wheat until he is older. If any of you have wheat or pollen allergies I’d love to hear your take on the allergy shots. I think that I’ll definitely take them at some point, but I don’t think it’s something that can’t wait for a little while.

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