Wheat, Oral Petechiae, and Me

Wheat CerealWhen I was in Europe in July I decided I would eat wheat. Flights had been delayed, the food I had brought with me was gone, I was no where near a kitchen, I was hungry and I had to find something to eat at the London airport because we still had a long travel day ahead of us. I had challenged wheat previously and it gave me headaches so I knew that it would likely give me problems. But it had given me less problems than rice, corn or oats when I challenged those foods, so I decided wheat would be what I would try. Since it was breakfast time, I ate some wheat cereal and some toast.

I continued to eat wheat throughout our stay in Europe, and I also ate some yogurt that was cultured only with bifido lactis bacteria, some milk, and some cheese that was fresh (not aged–to avoid too much histamine).

Several days into our trip the back of my throat felt kinda raw and it hurt. It especially hurt after eating some wheat cereal and milk for breakfast. I wasn’t feeling sick so I decided to look into my mouth.  I saw an irritated throat but what was most shocking was I saw a whole lot (maybe 2 dozen or so) of red spots all over my buccal mucosa (that’s a fancy name for the inside of your mouth by your cheeks).

I called my husband over to take a look because he is an orthodontist and he’s seen a lot of buccal mucosas.   Unfortunately, he didn’t know what was going on (which was unsettling to me). I was suspecting the wheat but didn’t know for sure.  And certainly there is nothing in the literature about that kind of reaction.  I wished we had our office camera with us that we use to take photos of our patient’s teeth, but we didn’t so I couldn’t take any photos of what was happening.

I will say that during this trip where I was eating foods that I suspected were problematic for me, I didn’t feel as well. I had more headaches, slept poorly and had joint pain. But, it wasn’t terrible and I could still function and enjoy our travels. I will admit it was nice to taste some of the delicious European breads and pastries!

When I got home, I stopped eating wheat and noticed that the spots went away; for the most part.  There was still one or two, here and there, but nothing like what I had experienced in Europe.

I decided to do a wheat challenge.  We photographed my mouth prior to my eating wheat, then I ate one ounce of the plainest wheat cereal I could find: 365 Everyday Value Wheat Squares from Whole Foods Market containing only whole wheat and vitamin E. Shortly after eating the wheat I felt poorly and got a headache. Then the red spots showed up!

Oral petechia

I slept poorly that night and had a headache when I woke up. I decided to continue to eat wheat just to see what would happen. I enjoyed some homemade wheat bread which I had not eaten in a couple of years, some wheat crackers and wheat cereal. I enjoyed it all because I knew it might be the last time I ate wheat. More spots appeared in my mouth, I didn’t sleep well that night and had a major headache when I woke up the next day! I also had significant nerve sparks in my left leg during the night. The next day I developed an aphthous ulcer in my mouth. It had been years since I’ve had one of those.  I can’t even remember the last time that happened! The next day I ended up with an HSV1 outbreak on my upper lip and the following day one appeared on my lower lip. We know that HSV1 is one of the pathogens that I’m battling and I’ve had them appear on my upper lip before when my body is under stress, so obviously the wheat had stressed my body. I’ve never had one on my lower lip before though, so my body must have been under some significant stress!

I went to see an oral surgeon, who is also an M.D. to discuss this situation. He verified that I had oral petechiae, but was unsure of the cause since I didn’t have an obvious infection, didn’t fit the criteria for other problems on his differential diagnosis, or have a low platelet count (at least as low as is needed for that problem). He was intrigued that wheat could possibly be the cause.

Next I went to see my doctor who is helping me with my Chronic Fatigue Syndrome (CFS). He is at a major medical center that is associated with a university. He and his assistant examined my mouth and we discussed how I was doing CFS wise. I shared with him that I would be willing to eat some wheat to see if the petechiae would show up. We decided to do that experiment. He also wanted to run some labs on me. So, I ate 1 ounce of wheat cereal and then had labs drawn. I felt poorly after my labs and went to look in the mirror and sure enough spots had shown up! Several occurred on my left buccal mucosa (like the photo above) and one appeared on the roof of my mouth!

oral petechiae

 

I went back to his clinic and showed him and his assistant.  They were amazed. It had taken only 20 minutes for the petechiae to appear!

The next day I had an appointment with the GI doctor. We discussed the wheat / petechiae issue and she had seen the photos we had taken the day before with our cell phones. During that appointment I did put a very small piece of wheat cereal in my mouth and held it for a while before swallowing to see if it was a contact allergy type of problem. No petechiae showed up. She wanted me to see an allergist and I elected to do that in my hometown since this major medical center is in another state. I also had many labs run by the GI doctor.

The allergist in my hometown did percutaneous skin testing on me for pollens, molds, etc. along with some foods. Interestingly enough I did have a 3 mm wheal and 10 mm flare to both wheat and oats. I was instructed to avoid wheat (and I’ll avoid oats too because I didn’t do well with them when I challenged them previously).

When I got home, a couple of hours later, I looked at my back and saw many more rashes than what was recorded at his office. I called to discuss this situation and was informed that this can happen, they don’t know why it occurs, and the clinical significance of this kind of reaction is unknown. I seem to always fall into the “unknown” category when it comes to my health problems!! The American Academy of Allergy and Immunology discusses the isolated late phase response here.

I had my neighbor take a photo of my back since my husband was out of town. I had a miserable night that night and it wasn’t just because I was itchy. I felt just horrible! What I found interesting was that my two largest late phase rashes (rice and almonds) were foods that I had significant problems with when challenged!

The test did show that I had significant allergies to grasses, which I knew, and it has made me wonder if that is why all the grains that I’ve tried that are in the grass family (eg: corn, wheat, oats, and rice) have been problematic for me…… Here’s a link to the Wikipedia page on Poaceae or Grass Family.

At this point in time no one seems to know exactly why I am getting these oral petechiae. It seems that wheat brings them on but they have appeared from time to time when I’m not eating wheat. When they appear at other times there is just one or two and they disappear quickly. When I’ve eaten wheat, I get several at a time. Sometimes they are quite large, which is startling.

oral petechiae

I am now paying very close attention to what I’m eating and what my buccal mucosa looks like. For sure I feel better off wheat (and a lot of other foods, especially foods high in histamine). For sure wheat brings on the petechiae. But they can appear at other times too. Do other foods cause this besides wheat? Is it just the food that is the problem? Or is there an underlying infection (or something else) that manifests itself as petechiae when my body is stressed by eating a food that it can’t tolerate? I suspect the petechiae are not a good thing to have. But no one seems to know exactly what is going on. For me, I’m using the petechiae as a clue….to see if I can improve my health by figuring out what causes them and to avoid that thing.

If I learn anything worth sharing I will share it with you! And if anyone reading this knows what I’m dealing with, please let me know!

For an update on the oral petechiae see my latest post: Oral Petechiae Update.

 

 

10 thoughts on “Wheat, Oral Petechiae, and Me

  1. Hello!

    Interesting to read about your experiences. I’ve been dealing with debilitating fatigue and chronic pain for just over two years now. I’ve been cleared of AI diseases (though it’s possible I just have UCTD). There are a time when it was thought that my answer was vasculitis. At this time, I started paying more attention to my skin/mouth. I noticed oral petechia for the first time. I get them occasionally like you and I also get occasional apthous sores. Just last week I had what I believe to be my first AI-mediated flare and I had the most petechiae and mouth sores at the same time (combined with extra fatigue and episcleritis). My dental hygienist likens my reactions to her now oral reactions to wheat (she is diagnosed celiac). I am currently taking daily H1 and H2 antihistamines as I suspected perhaps I have mast cell activation disorder (MCAS)… so far it seems to be helping with some other GI issues but the petechiae still pop up here and there). Have you/they consider doing a biopsy to get a clearly idea of what’s going on? I’d like to try an elimination diet again as some point and see who I feel. I did the CLEAN diet for a month in 2009 and didn’t feel any better but my condition has worsened greatly since then. Blah, blah, blah! 🙂 Any more news from your end?

    1. I’m sorry for your health issues, May. You are the first person I’ve “met” that also has oral petechiae!

      I am paying close attention to my oral mucosa now and trying to look for patterns. I have some theories about what is going on but nothing definite (of course). It *seems* that certain foods bring about larger purpura….and those occur in the oral mucosa about 2 days after the offending food is eaten. (If indeed it is the food that is causing it.)

      I hope to have an endoscopy in the not too distant future for further evaluation. It would be nice to understand (if possible) what, exactly is happening!

    1. May~ Thanks for that article, it is very interesting. I did a bit more looking after I read the article and found this information: http://www.aaaai.org/ask-the-expert/leukocytoclastic-vasculitis-foods.aspx

      I do feel it is very possible to have sensitivities to foods that are not IgE mediated….but allergists can’t really help to elucidate those foods since their tests are IgE tests. ….. I’ve had that discussion with my local allergist. He knows it’s possible because he’s seen it in family members….

      Hopefully, we’ll get some answers. Thanks for the link to the article!!!!

  2. Hello,

    I just wanted to let you know that I have the exact same blisters in my mouth and none of the specialists I have been to have been able to tell what they are. I cant actually feel they are comming (completely painless), and often find them accidentally. They disappear just as quickly as they appear, and none have lasted more than two-three days so far. I have had them for three years now, and they pop up some once or twice a month. Mostly single sores. Sometimes small clusters. They are (dont like it) getting larger and more instant (meaning they seem to form more rapidly and more aggressively to a point where they are suddenly there and allreadu ready to burst) now than in the beginning.

    What I have learned, is that they are allways coming shortly after or at early stages of days (to week) long periods of serious GI-tract related problems, headache and extreme exhaustion. After my CFS-diagnosis 1.5 years ago, I dont feel any doctors really care. There are so many symptoms, and they are all equally vaque.

    I have had some improvement being on a strict FODMAP-diet, but the blisters return whenever I try to introduce new foods. And sometimes even if I dont eay anything but “safe” foods as well. I have just recieved a prescription for stereoides as a trial treatment to rule out some inflamatory GI-tract conditions (no positive tests / biopsies), and If that helps I surely will share.

    So strange this isnt described or documented. It seems to be such a direct and logical link between me not feeling good and later finding those blisters. Last time I searched google, I guess your post wasnt here, cause I found nothing at all even resembling my blisters (other than images of people having bitten themselves inside their gums).

    Please do update this page if you find out anything else as the years go by, or send me an email even.

    Thank you for sharing! Im so glad you have a husband that is also a health care person that could look at this together with you to rule out a couple of things and maybe help you navigate to suitable help.

    Best wishes,

    Claus
    (Norway (and off wheat / on FODMAP))

    1. Claus~ Thank you for letting me know about your situation. Please keep me posted on how you are doing and I will certainly be in touch as well.

      Wishing you a full return to health!

  3. Hi,
    Same is happening with me, but i was not sure that it is due to wheat, corn etc.
    Thanks for clearing my doubt as i was very tense and worried.

    1. Hi Saqib~ I’m sorry you have the petechiae too. It’s always a good idea to check with your doctor if you haven’t already done so.

      It is reassuring to have the doctor look at them too and try to figure it out!

      Wishing you all the best,

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