I Don’t Have Celiac!!!!

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.

Comments

  1. Hi Mary,
    I’m reading with interest! From what I’ve learned on this celiac journey is that there are 4 pathways of allergies IgA, IgG, IgE, and IgM. I think the skin tests are IgM. For tummy symptoms IgG allergies need to be tested via blood. I had mine done 2 weeks ago via Genova Diagnostics. I had 30 3+ reactive foods and 11 2+reactive foods. I do have celiacs as well, but from what I’ve learned with that is that testing IgA and IgG is not enough. tTg and EMA must be tested. My skin allergy tests merely showed dust mites, mold, pollen and animal dander. It didn’t even show foods, though it was tested. But these other blood tests did.
    I hope this is helpful. I’ve been following your blog for a little while trying to learn all I can.

    Blessings,
    Betty

  2. Wow, you had some serious allergy testing done and some serious reactions. My son had the same thing done, and we were told the allergy shots would clear him right up. Uh yeah, NOT! They dosed the allergy shots too high too fast and his reactions to them were beyond serious. Please be very careful if you go for the allergy shots and make sure they take it very very slow in increasing the dose. That risk wasn’t explained to us and I don’t know if this is normally explained to people or not. I have heard many people say allergy shots helped them greatly but the risk to reacting to the shots remains.

  3. Stephanie Schlosser says:

    I’m really happy for you! There are some really good blood tests for food allergies too that might help pinpoint some of them easier.

  4. AS a doctor who works with allergies – I would recommend you find a doctor who does the food allergy testing. Contact Designs for Health (www.designsforhealth.com) and ask for a physician who works with their program. Gut problems are not as a result of what you brerathe; but what you react to by breathing is as a result of what is going on in your gut. The most important place to test for your gut problems is from your gut, not your blood or skin (the patch test you went through). All health problems begin in your intestines, not on your skin. I recently tested a woman with lots of bloating problems and we found she has an infection in her intestines caused by too many antibiotics when she was young and lack of the good bacteria to replace the stuff that was killed off by the antibiotics. PLEASE look into alternatives before going through all the allergy shots!
    I hope this helps

  5. This is fascinating. Thank you for sharing this info. My son has an allergist-suspected wheat sensitivity, and after recent testing, we’ve got him on a diet free of dairy, eggs, wheat, and sugar. His allergies manifest themselves mostly as rashy skin and behavioral issues. He’s only two, so the behavioral changes are very noticeable. Anyway, we’ve long suspected that he was allergic to tomatoes, because he becomes absolutely crazy and unmanageable after eating anything tomato-based. The allergy testing indicated he is not allergic to tomatoes, so we added them back in to his diet last week. Horrible mistake! We had a very hard week but couldn’t figure out why the tomatoes are causing problems when he’s not allergic to tomatoes.

    I think you’ve provided a key to the puzzle! He is quite allergic to grass, and tomatoes are one of the items listed under grass allergies in that chart you recommended on wikipedia. The grass causes exzema, but it makes sense to us that ingesting tomatoes could cause his normal allergic reaction (behavioral issues). Now we have something that makes sense!

    Also, have you ever heard of sublingual immunotherapy? It’s a cheaper, less painful alternative to the shots you’re considering. We’re taking our son to Allergy Associates of La Crosse (in Wisconsin), and they’re using a treatment of three-times-daily liquid drops under the tongue to desensitize his system to his allergens. He’s currently being treated for wheat, milk, eggs, grass, dogs, and dust mites. The allergist is hopeful that within 6 months to a few years, we will see a big improvement. They told me the drops average out to about $10 a week and that most of their patients see such an improved lifestyle that it’s completely worthwhile to pay for the treatment. We’re really hopeful it will help our family and have heard many “miracle cure” stories from acquaintances who have been treated there. You can look at their website here: http://www.allergy-solutions.com/

    Hope you feel better soon!

    –Shawn

  6. WOW! Thats just as good as the day when we first discovered my hubby has celiacs… years of confusion finally answered! Interesting that your gut instinct (your allergy to wheat despite a negative celiac blood test) was accurate. I’m sure it’s a bit of a double edged sword, being allergic to plants is a bit of a shocker, but if they’ve got meds that handle part of your symptoms then your ultimate diet change shouldn’t be much of an issue… after all, what could be more difficult than those horrid months of starting the gf diet?! My hubby and I both broke down in tears in the middle of the grocery store after his diagnosis. Anyway, good luck and if I’m reading between the lines correctly this means you can safely sneak a piece of brownie or bagel now and then!

  7. Hi,
    My daughter is allergic to wheat and grasses and trees. we were told that the shots will take care of the plant allergy BUT not the wheat. Even though she has never needed to use it we cary an epi pen .please get a second opinon about the wheat part. I would hate for you to get a false sense of security about foods.
    since you are already on a glutenfree diet you know what to eat . We also were told that becuse of the grass allergy we have to be careful about letuces and other greens the pollen in the air can attach and cause allergy symptoms. so happy that you have can feel better. Carol

  8. Thanks so much for sharing your story! AMAZING information! : )

  9. Thanks for sharing this! It really rings true to my experience over the past 9 months. I was having hives daily on my feet/hands/legs for many months and went to the allergist. I had a similar HIGH reaction to pollens/trees where they brought every nurse in to see my welts. Birch was HUGE. Anyhow, I also had the food tests and I am a 1 reaction to wheat, 2 to tomatoes, a 2 hazelnuts, etc. He said I might have a “variant of Celiac’s” but never went further as he was pushing shots and I’m just not sure about them. I think this means I probably need to find a younger allergist. This is the same man my mother brought me to as a baby.

  10. Hi MaryFrances :)
    I’m happy to hear that you are on your way to figuring it all out. The information you have provided is very helpful! :)

    On a selfish note….. I’m SUPER pleased to see that you will still be GLUTEN FREE as I can continue to read, recreate and fall in love with your recipes. (Sorry.. super selfish…but had to admit the truth of what I was thinking when I read the post title. I thought “EEK GADS! Don’t tell me Mary Frances isn’t going to be a GF blogger any more!” oh.. bad selfish me…..

    I’m going to share this post with my sister and her family as they too have numerous food and grass, pollen, etc allergies. We’ve always wondered about celiac with one of her sons (and her, to be honest). I think this post will help.
    Thanks!
    :)
    Kate

  11. Let me share quickly (briefly) what happened to me. I went in to an allergist and they did a skin test and I reacted violently to 47 different foods from a skin test. Oh my goodness, the nurses said. We’ve never seen anything like this. The doctor took a look and then suggested I never eat any of those foods again. Wheat was just one of them. Tomatoes was another. I went for almost a year on a VERY STRICT diet, felt much much better, and then got retested at National Jewish in Denver, where they did RAST blood testing for true IgE allergies. I didn’t have any. At that point, we figured out celiac. Two years later, I went in to an allergist in Ohio who was to do a skin scratch test for my pollen allergies so I could start shots and LO and BEHOLD, I had dermographism. What is it? It’s a fairly rare skin condition that means when you’re having a lot of allergic reactions to pollen and stuff that if you scratch your skin, it weals up and stays that way for days. It throws off any scratch test ever done. None of the scratch testing up to that point had been accurate! They did RAST blood tests for everything and then figured out my ragweed allergy, etc. So, what I would suggest is, based on ALL of your results, see if you have dermographism before you drastically change your life and pay large amounts of money. And really, if you suspect true allergy, have them do the RAST blood tests. Take care, and good luck with it all. (P.S. I’m anaphylactic for no known reason, so they won’t give me shots. I live on Zyrtec and Flonase – and do quite well with my gluten-free corn-free diet).

  12. How amazing…you knew something wasn’t right and found out you were right. I suspected wheat problems too and although I didn’t test positive for celiacs I stay away from wheat as well…my head itches and face breaks outs in itcy blisters if I use products with wheat and I get a headache and can’t sit still when I ingest it…
    At any rate…good for you and thanks for the great advice and your willingness to share. HUGS

  13. Dorothy says:

    I spent most of my life battling allergies and hay fever. I was allergic to all sorts of pollens, mainly grasses and trees, but many more as well. I had scratch tests and allergy shots several times. The allergy shots would take about 2-3 years to get to maximum dose (they could only raise my dosage very slowly or I would react), and then I’d have maybe 2-3 years of benefit, and then the allergies would come back. I lived on Claritin, Allegra, Flonase and Kleenex. Then I finally saw an acupuncturist (because of other issues) who told me to go off of gluten (diagnosed via muscle testing). I have been GF for two years now, and one wonderful side effect is that my seasonal (9 months of the year) allergies have dwindled to almost nothing. So, I’m kind of the opposite of you–your gut led you to find out about pland allergies, and my plant allergies (and other immune system dysfunctions) let me to find out that my body does NOT appreciate gluten. I recommend you get a second opinion from a different practitioner before you make any expensive decisions. Good luck!
    Dorothy
    p.s. they always checked me 10 minutes after the scratch test, and usually gasped and quickly rubbed down my back with whatever they use to clean it off. They usually gave me Benadryl at that point, too. I can’t imagine going for 20 minutes!!

  14. Hi Mary Frances. What an experience you have had. We are new to the gluten-free way of life. In late February we discovered wheat affected my daughter and on April 1st I was diagnosed with diabetes that is strongly affected by gluten. Your website has been illuminating and has encouraged me to explore our options. Anyway- to your question about allergy shots. My husband lived on allergy shots and prescription medication for years. He has a great system that builds resistance to medication easily so he seemed to always need new and stronger medication. We started seeing a naturopath in conjunction to our medical doctor, about 15 years ago and Jack has been ‘drug free’ ever since ( I use the term loosely because he is on various medicaitons from both doctors, but nothing like he was and NO shots). I strongly advise that you check your options before you do shots. You are in tune with your system and no one knows you like you. Pardon the the pun, but go with your GUT on this one.

  15. Wow! I came upon your website from Twitter, and just, well.. Wow. I’d never heard of Oral Allergy Syndrome! It’s amazing what our bodies can do, you know?

    Blessings to you on this very unique journey!
    ~Lyra

  16. Thanks for sharing this very helpful info. I too have food sensitivities (including wheat, tomatoes, sugar) and have heard about the link to pollens (I’m allergic to quite a few). Interestingly, I noticed is that my food sensitivities aren’t consistent: I can get horrible cramps from wheat one month, and be fine with it the next. Generally avoiding these foods does seem to help, and now I’ll keep track of the local pollens to see if there’s a connection between them and my food sensitives.
    Cheers!
    Patty

  17. We have been going through issues w/ my son for several years now… Yes years. Just this week he was diagnosed with Celiac disease and we have been scheduled to see a GI specialist as well.

    His pediatrician wanted to fill him full of every allergy drug known to man and NONE of them were all that effective. I found an alternative healthcare clinic that found he had 30+ allergies (milk, dairy, corn, wheat, dust mites, trees, etc. etc……).

    I have found some really good GF/CF foods and have learned to make incredible chicken nuggets, but now that I have been laid off it is almost IMPOSSIBLE to afford a lot of the GF/CF stuff….

    Would be nice if there was a GF/CF food plan on a budget type course. We could all benefit from that for sure!!!!!!!!

    If you hear of any good places to actually sit face to face and discuss this in the Indy area let me know

    Thanks

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  1. [...] In other news, I’ve given a considerable amount of thought as to how to proceed regarding my pollen/wheat allergy. The anithistamine (Xyzal) and steroid spray (Nasonex) that the doctor prescribed are helping the [...]