Oral Petechiae Update

oral petechiae

First, I’m going to start off by saying it is awkward and embarrassing to put photos online of the inside of one’s mouth. But I’m doing this in case it helps someone else. So I apologize up front if the photos of the oral petechiae are offensive. I don’t mean them to be. It’s just that a photo is the best way to describe what is going on with me and since these petechiae *might* be related to the food I eat it seems appropriate to put what I’ve learned on a food sensitivity blog….

Back in October I wrote a post entitled Wheat, Oral Petechiae and Me.  Since then I have learned a few things that might be of interest to those who also have this problem or are curious about it.

We were able to get 3 petechiae biopsied and examined by an oral pathologist. The first two were biopsied on February 3rd. Basically the results were benign. The report did say that the tissue “is notable for the presence of patchy infiltrates of lymphocytes and histiocytes.” No one really explained to me the meaning of that. The diagnosis was “Focal keratosis and mild chronic mucositis.” The oral pathologist wanted another biopsy to be sent in Michel’s solution. We were able to do that so the tissue could be sent out for direct immunofluorescence. The results of that examination showed that there was “no immunopathologic evidence for any antibody-mediated bullous disease at this time.”

I clarified with the the periodontist who had done the biopsies what this all meant since he has looked at my mouth several times. He basically said that I have a very healthy mouth that gets petechiae and purpura for some unknown reason. He has never seen anything like it.  And for the record, neither has the oral surgeon, my primary care doctor, a GI doctor, 2 allergists and an infectious diseases doctor. No one knows exactly what is going on or why….and believe me it’s not because the doctors haven’t looked. I’ve had a bazillion tests run on me! I will mention that the 2nd allergist that I saw also did percutaneous testing on me. I did not react to wheat and oats on those tests. (I did have a mild reaction to those foods with the first allergist.)

I still somewhat suspect that it is food related…..but I’m not yet 100% sure of this. When I wanted to get the biopsies done, I called the periodontist’s office and asked if there was a time I could come in that week. It was Tuesday morning when I called. She said, “How about Wednesday at 11?” When I was talking with her on the phone, I had no petechiae present. But I said “Sure, I think I can make some appear. I’ll call you if none show up.” I hung up the phone and the next morning ate some sunflower seed butter, rice and quinoa. I ended up with one petechiae on my left buccal mucosa, one on my right buccal mucosa and two on the roof of my mouth! I got the two petechiae on the buccal mucosas biopsied, which really meant it was very hard to eat after that since the inside of my mouth was sore in two places!! But I was happy to get the biopsies done!

I repeated the eating of the sunflower seed butter and quinoa in front of my doctor a week later  (on February 9th) to see if the petechiae would appear, but none did. None had appeared since the 3rd when they were biopsied. I saw the periodontist on the 10th to get the stitches out of my cheeks and he said that the oral pathologist wanted another biopsy and would I be willing to give one. I said sure, but there were none in my mouth at that time. Since I suspected I could bring them out, I went home and ate some sunflower seed butter, quinoa, rice cakes and hemp seed, all foods I suspected as bringing them out. (I didn’t want to eat wheat since I was pretty sure wheat brought them out and yet when I avoided wheat they still showed up….so if it is food doing this, I was trying to identify what foods were the cause.)

Sure enough, by that evening on the 10th, I had a petechiae appear on the back lower right gum. On the 11th I ate more rice, quinoa, hemp seed and sunflower seed butter and had a petechiae show up on the lower left gum. That is the one that got biopsied. (This meant that I couldn’t open my mouth very wide at all to get food in due to the incision. Before I couldn’t chew the food due to the incisions inside both cheeks; now I could chew the food, I just couldn’t open my mouth wide enough to get the food in!)

It seems, if it is food doing this, that sometimes I need to eat the food a few days in a row to get them to appear. Either I was able to make them appear for the biopsies by eating those foods, or I just got lucky. That is still to be determined.

I have not eaten hemp seed, quinoa or sunflower seed butter since. I have eaten white jasmine rice and have had no petechiae with that (or any other adverse symptom that I can tell). It is really nice to have a grain in the diet!!

I seem to get petechiae if I eat out at restaurants. I had 11 days without any, then got one on the left buccal mucosa. Was it from the one tablespoon of Kefir I had had daily for the previous 4 days? Greek non-fat yogurt did not give me petechiae….was it the yeast in the Kefir? Or is it not related to food?  I am constantly asking myself these kinds of questions. The most recent occurrence happened on the 13th when 3 showed up on the left buccal mucosa. The day before I had eaten some homemade thin skinned white potatoes (not organic). I ate a few pieces, including the skin. My throat and upper mouth felt weird, so I stopped eating them after several bites. Were the petechiae somehow related to those potatoes?  I don’t know. For sure the feeling I got in my mouth and throat were related to the potatoes.

Everyone agrees that they aren’t normal. Doctors are grateful that I don’t feel them and that they go away on their own. But the fact remains that no one knows exactly what causes them.  If I figure anything more out, I will let you know. In the meantime, I am always grateful when I don’t have them in my mouth for they are unsettling when they appear, especially the large ones!

oral petechaie

 

12 thoughts on “Oral Petechiae Update

  1. I have not gone back and read through the rest of your blog, so I do not know what wisdom of the body you have and don’t have. I’d love to help you get to the bottom of this though, I’m really good at asking the right questions to help people see patterns they didn’t know they have. I successfully allowed my body to recover from multiple chronic illnesses, though I’m still figuring it all out myself.

    Some things I’d want to know: What kind of oils are you using? What spices/herbs/seasonings do you use? How are you preparing the quinoa? Is it white or red? Is everything organic? What else are you eating? Do you supplement with vitamins or minerals?

    1. Hi Bonnie~
      How sweet of you to reach out to me!

      I have only been using olive oil (except when I’ve eaten in restaurants and I don’t know what type of oil they use). Recently, I’ve been off even olive oil and the petechiae still appear. I don’t think the oil makes a difference in their appearance (at least not any kind of direct association).

      The only spices and herbs I’ve been using are sea salt, basil, thyme, oregano, chives, parsley and bay leaves. These are all fresh herbs (except the bay leaves). Even when I don’t use herbs the petechaie appear.

      Not everything is organic. Most foods are though.

      Quinoa is either rinsed well and boiled in water or I use a quinoa cereal that is only quinoa. The quinoa is white.

      What I’m eating is detailed in my recent post about what I learned in 2015. Basically, I eat legumes, winter squash, sweet potatoes, low histamine vegetables, rice, apples and pomegranate juice. Fish on occasion. The foods that seem to make the petechiae appear are wheat, sunflower seeds, quinoa, possibly kefir….. and we’ll see if anything else associates with them (or not!)

      I take a Vit B12 once a week and some Vit D on occasion. That’s it.

  2. I’ve replied before re: petechia to your wheat post. I’m still getting them too appearing off and on and don’t know why. You’re doctors seem interested in yours (or at least they were). No one’s yet interested in mine. I suggested getting a biopsy done but the mouth surgeon I saw said that they wouldn’t show anything but blood (lymphocytes) and a little inflammation (blah-blah-itis) 🙂 … which is what yours showed. I used to think they were timed with my cycle as for many months in a row, I would get mine around the same time in my cycle. I’m doing a “Few Foods” elimination diet right now and it’s likely mine are also linked to foods (at least in part). I forget whether or not you have MCAS. It’s suspected for me (and I’m on daily antihistamines). Anyway, just to say you are certainly not alone!

    1. Hi May~
      I don’t have MCAS but I suspect I have histamine intolerance (and quite possibly benzoate intolerance too).

      Let me know if you learn anything with your few foods elimination diet.

      It is comforting to know I’m not alone. Maybe all of us putting our experiences together can piece together what is going on!

      Thanks for being in touch again! 🙂

  3. Did you ever experience any other throat problems with getting this? Because i recently noticed getting these on the inside of my cheek when my throat started hurting and I have white spots on my tonsils as well. Just wondering if it was related to this

    1. Hi Megan~ The only time I noticed my throat hurting was when I first noticed the petechiae. It was my hurting throat that caused me to look in my mouth….and then I noticed the petechiae! 😮 My tonsils were taken out when I was very young so that isn’t part of what I’m dealing with. If you figure it out let me know!! 🙂 Good luck!!!

  4. Hello,
    I was searching for petachie inside cheek causes and came across your blog. I have them as well along with petachie on legs and a few purpura spots randomly pop up nothing that’s major looking but I keep track of all my bizarre changes since I have been dealing with mystery illness for 8 years! Just wanted to add I’m finally having a platelet aggregation study done soon because platelet disorders cause these blood symptoms even with normal platelet counts. So maybe something to look into …also vasculitis Take Care

    1. Thanks for your thoughts Mel. I will check into that. I don’t get petechiae anywhere else (that I have noticed) except inside my mouth. The oral surgeon I saw did mention that even with normal platelet counts the platelets could not be functioning properly. My platelets tend to be on the low side, but not low enough to cause this problem (how well they are functioning is another issue though….). If you learn something, let me know! Wishing you all the best, and some answers!

  5. Hey, I have the EXACT same thing. I suffered from swelling (buccal mucosa) and the purple little dots for a long time, until I stopped eating gluten. This was eight years ago. My doctor wanted to do an endoscopy and I was told to start eating gluten again. I had a slice of pizza, and some biscuits. Guess what? I am sitting here with the swelling and dots (petechiae?). I am now NOT going to eat any more as I am quite sure this is an allergic reaction. I am going to have an allergy test and speak with my doctor before considering eating gluten for the biopsy.

    I am sorry that you also have this, but i am happy to have found someone else! 😀

    1. Hi Ellen! Thanks for taking the time to share your experience! I wanted to write back sooner, but I’ve been out of the country with limited internet access!

      I’ve seen two different allergists. With the allergist in my local town, I did have a wheal and flare reaction (mild) to wheat and oats. With the allergist that I saw at a major medical center in another state, I did not have those reactions. Everyone agreed that the petechiae are not normal and not likely a good thing, so if I equate their appearance with a food, I should avoid that food!!

      I seem to get them at other times too…and I will write another post about that soon. But in a nutshell, I get the larger petechiae (called purpura) about half the time when I eat rice cakes. It just happened again a couple of days ago. And since I can eat rice, I suspect it is something else in the rice cake that is causing it.

      It also seems that cassava flour brings them out which surprised me as I thought I’d be safe with a food that comes from a root. I will be testing that food one more time.

      And I suspect dairy is a culprit. I will be testing that as well.

      I did get several petechiae and one purpura during this latest trip of mine. This seems to happen to me when I travel, and I suspect it is because I am eating some foods that I don’t prepare.

      Keep me posted on your situation, and thanks for reaching out to let me know that the same thing happens with you too! 🙂

      1. I’m dealing with the same thing. I noticed it bc I’ve had a red spot that keeps appearing and disappearing on my soft palate. It seems to be irritation of some sort to that area of my mouth. It comes and goes in the same area but is not the same shape. I’m trying to figure out what could be causing the irritation. I think it may be due to my asthma inhaler or eating ice. I’m pregnant so I’ve developed a craving for eating crushed ice. I also have noticed the petechiae on my cheeks but I think it’s related to cheek biting. I get them off and on and also get the linea alba which is caused by cheek biting. I will usually have one or two on either or both sides of my mouth. Do you think yours could be related to cheek biting as well?

        1. Hello Deb! Thanks for taking the time to write. At first, I had wondered if biting was the cause of some of my petechiae, but I really don’t think so. I have gotten them in places where it would have been impossible for me to bite! (eg: back gum behind my teeth and roof of my mouth).

          Also, I’ve had some appear after certain foods (eg sunflower seeds, rice cakes and homemade crackers made out of cassava flour), and in those cases, I think they are food related. What’s interesting about the rice cakes is that I tolerate rice fine, but about half the time, after eating rice cakes, I get petechiae. Often within 10 minutes and they are the large ones (called purpura). This has happened often enough that I suspect the rice cakes are cross contaminated with something that my body really doesn’t like. I have yet to find what that is though. And every single time I ate the crackers made out of cassava flour, I’ve gotten petechiae. I am going to test it one more time, before I see my cardiologist. I did eat some before I saw my primary care physician and they came out so she got to see them.

          So, while I don’t have all the foods figured out that cause the petechiae, I’m pretty sure food is one trigger. It might not be the only one, but it does seem to be a trigger. I’ve asked my husband, who is an orthodontist, if they could be bite related, and from what he’s seen in my mouth, he says “no”.

          In some cases the petechiae show up right away (10 -20 minutes—eg rice cakes and wheat). With the cassava flour it was 2 hours. And sometimes they show up the next day (sunflower seeds).

          I hope yours goes away!!!!!!!!!!!!!!!!!!!!!! Thanks for writing! Best wishes for your pregnancy and new baby!! 🙂

Leave a Reply