The Worst Canker Sore Outbreak Ever

[bigapplekathleen]

YOu guys won't believe this...but that allergist actually just called me. I cannot believe it. I told him what the other docs found and how surprised they were about what HE had prescribed and the fact that he gave no steroids or prednisone. He wasn't even aware that someone could get coxsackie as an adult, and without hand or feet rash. And he's an immunologist!? I am shocked. He's fired.

K

[ravenwoodglass]

YOu guys won't believe this...but that allergist actually just called me. I cannot believe it. I told him what the other docs found and how surprised they were about what HE had prescribed and the fact that he gave no steroids or prednisone. He wasn't even aware that someone could get coxsackie as an adult, and without hand or feet rash. And he's an immunologist!? I am shocked. He's fired.

K

At least he called. I hope he apologized.

[bigapplekathleen]

At least he called. I hope he apologized.

He did NOT apologize.

[mymagicalchild]

I just want to add that I called my allergist/immunologist today to tell him how off base he was in his diagnosis on Tuesday and how sick I got because he missed it. I asked him if it could be something contagious, and he kept saying no... (the meds he gave me - VALTREX - were totally useless and incorrect even if it were just canker sores - considering the level of the outbreak - and the ER doc couldn't even BELIEVE the allergist prescribed them.)

K

This guy sounds dangerous. And the reaction of his receptionist to your complaints sounds like she knows it! I'm wondering if it would give you some relief from the outrage you must feel to complain to any administrators of hospitals where he might have staff privileges. Or check with the ER doc for suggestions about actions you might take. (He probably won't want to get involved.) Or report him to the State Board that certified him.

I was a court reporter for over 20 years and reported many medical malpractice cases. Some of them really heartbreaking in the extent of damage done by the "malpracticer." If the case settled without trial, there was ALWAYS a stipulation that the settlement be kept secret. The poor plaintiff got some money. The lawyers got their fees. AND the doctor got no bad publicity. Which was usually the reason for settling without a trial.

You questioned and you took care of yourself. That's really the only solution to this haphazard, no-accountability medical system we have.

[bigapplekathleen]

This guy sounds dangerous. And the reaction of his receptionist to your complaints sounds like she knows it! I'm wondering if it would give you some relief from the outrage you must feel to complain to any administrators of hospitals where he might have staff privileges. Or check with the ER doc for suggestions about actions you might take. (He probably won't want to get involved.) Or report him to the State Board that certified him.

I was a court reporter for over 20 years and reported many medical malpractice cases. Some of them really heartbreaking in the extent of damage done by the "malpracticer." If the case settled without trial, there was ALWAYS a stipulation that the settlement be kept secret. The poor plaintiff got some money. The lawyers got their fees. AND the doctor got no bad publicity. Which was usually the reason for settling without a trial.

You questioned and you took care of yourself. That's really the only solution to this haphazard, no-accountability medical system we have.

He is voted one of the best doctors in the Ny Metro area every year... Board certified in allergy and immunology...tough to go after that in any way...

[SGWhiskers]

Kathleen,

I recognized your symptoms right away. I had the same thing 6 years ago. The worst "cold" of my life. I was lucky and got a diagnosis on the first try. I only had a handful of tonsil and palate sores though. I can't imagine the pain you are in. After my sores went away, I continued with a LOT of mucus for 2 weeks. I hope your recovery is swift. My tonsils were never the same size/shape again. My health wasn't either. (Sometimes I wonder if it wasn't the trigger for Celiac).

Get plenty of rest and fluids. Hope you feel well soon.

[bigapplekathleen]

Kathleen,

I recognized your symptoms right away. I had the same thing 6 years ago. The worst "cold" of my life. I was lucky and got a diagnosis on the first try. I only had a handful of tonsil and palate sores though. I can't imagine the pain you are in. After my sores went away, I continued with a LOT of mucus for 2 weeks. I hope your recovery is swift. My tonsils were never the same size/shape again. My health wasn't either. (Sometimes I wonder if it wasn't the trigger for Celiac).

Get plenty of rest and fluids. Hope you feel well soon.

Wow...you had coxscakie as an adult? I didn't have a cold at all; no mucous either. I am planning to have my tonsils out really soon, since they are so bad. I can't believe I am even considering that at age 39, but they have little holes all over them and tend to breed infection, no matter how clean I keep them. Plus their size impedes my singing. So, out they go. After this is over, I intend to go find a new doctor to help figure out what's going on with my immune system again. Everything has been great since going gluten-free 5 yrs ago; everything settled down about a year into the diet. But then last winter I got the mono, fell down the stairs, had strep twice, got a bronchial infection that led to asthma, had a concussion from fainting on an airplane from the mono, dealt with the 9-week fever, got a fungal infection, had 2 huge splinters this summer, and sliced the end of my finger open. I think there's more, but I just can't fathom. Yesterday was my 3rd visit to the same ER in one year - food poisoning (listeria?), concussion and now this. It's been a DISASTER this year. hopefully this is the end!!!!!

I am taking so many vitamins and being so careful with everything, especially gluten.

[SGWhiskers]

Oh Kathleen, You have been through so much! I really do hope things resolve soon for you.

Yeah, the Coxsackie was as an adult. I'm a nailbiting teacher. A bad, bad combo. The teacher part is what made the doctor figure it out. I seem to get everybug the kids have. Nothing like what you have run into lately. Hopefully your immune system kicks back into gear and you are well enough to avoid more accidents.

SG Whiskers

[bigapplekathleen]

Oh Kathleen, You have been through so much! I really do hope things resolve soon for you.

Yeah, the Coxsackie was as an adult. I'm a nailbiting teacher. A bad, bad combo. The teacher part is what made the doctor figure it out. I seem to get everybug the kids have. Nothing like what you have run into lately. Hopefully your immune system kicks back into gear and you are well enough to avoid more accidents.

SG Whiskers

Wow. That explains it. I am a private instructor (kids age 4- adult) and a university professor. BUT this appeared before I started teaching this semester, so I picked it up somewhere else! Who knows!?

[mymagicalchild]

He is voted one of the best doctors in the Ny Metro area every year... Board certified in allergy and immunology...tough to go after that in any way...

Sounds like he's got a lot to lose.

Also sounds like he "should know" what he "doesn't know."

How are you doing? Is the Emergency Doc's treatment working?

[mymagicalchild]

Sounds like he's got a lot to lose.

Also sounds like he "should know" what he "doesn't know."

How are you doing? Is the Emergency Doc's treatment working?

My husband and I, together, (he DOES NOT DO COMPUTERS) just read this entire topic and he's shocked by your experience.

We are going to bed now. Kind of like "Sound of Music." Tomorrow I'll see if you are better. Gargle with tea tree oil. It cannot hurt.

[bigapplekathleen]

My husband and I, together, (he DOES NOT DO COMPUTERS) just read this entire topic and he's shocked by your experience.

We are going to bed now. Kind of like "Sound of Music." Tomorrow I'll see if you are better. Gargle with tea tree oil. It cannot hurt.

I am completely recovered now (a week later!). The prednisone was a life-saver for me this week. I was back to normal in just 24-48 hours, and the sores were gone in about 4-5 days. I will follow up with an infectious disease person in 2 weeks, since we don't have the blood work back yet, anyway. (Coxsackie titer takes 2 weeks.) Thanks for all the suggestions, everyone. I guess this goes to show me that it's not always gluten. Sometimes it's something much worse!

[Nancym]

Glad you're feeling better! I've followed this story with interest and learned lots of new stuff.

[mymagicalchild]

I am completely recovered now (a week later!). The prednisone was a life-saver for me this week. I was back to normal in just 24-48 hours, and the sores were gone in about 4-5 days. I will follow up with an infectious disease person in 2 weeks, since we don't have the blood work back yet, anyway. (Coxsackie titer takes 2 weeks.) Thanks for all the suggestions, everyone. I guess this goes to show me that it's not always gluten. Sometimes it's something much worse!

Great news! This could have turned out so much worse. I can't wait to read your next topic.

When are you going to start writing your book? There's gotta be one here.

[bigapplekathleen]

Welll...here's the update... The sores went away with the high-dose prednisone that I took for 7 days, but within 48 hours of the last dose, they came back like crazy and I am in so much pain again with sores everywhere. I went back to the docs again and now they think it's NOT coxsackie virus, but just an outbreak of unknown origin. (Again, common in celiac, but not like this - with small sores everywhere now...and also sometimes seen in Epstein-Barr, but not usually this aggressively). So, we don't know. My blood work still shows high Epstein-Barr counts. They put me back on prednisone for 3 more weeks, but I can barely talk again today. This is the most ridiculous thing ever. I am going to buy some of those suggestions you all gave - esp. the L-Lysine - TODAY!

K

[mymagicalchild]

I am going to buy some of those suggestions you all gave - esp. the L-Lysine - TODAY!

K

If it's a virus, which it almost certainly is, the tea tree oil can't hurt anything. I've used it on just-emerging canker sores and they never mature. SO SORRY, Kathleen.

[cmom]

I'm also so sorry! I know how much pain ONE canker sore can cause, let alone that many! My son has had 2-3 at a time and barely able to eat. I have given him the L-lysine to take when needed.

[bigapplekathleen]

So...another question for those of you that have had severe outbreaks like this before...

I am now at Day 32 after the sores started, and they are virtually gone. There are still a few in there, and a few pop up each day, but go away fast, since I am still on prednisone. So, now that the mouth is healing, I am noticing that my tongue and inside of my mouth feel very strange - almost sandpapery - like a cat's tongue. I am also REALLY thirsty (which could be from the prednisone). I have taken 2.5 weeks of prednisone (40 mg a day the first week, 30 mg a day 2nd week, now down to 20mg a day and then will drop to 10 mg the 4th week). I feel much better, but this mouth sensation is strange - almost a tingling feeling. Has anyone experienced this? Maybe it's just scarring (hopefully temporary?) from all of those hundreds of sores...

Thanks

K

gluten-free since 2003

Paleo diet about 90% of the time

[mymagicalchild]

Sorry, Sweetie...I go back to my first post: use TEA TREE OIL!

Because HELLO: it kills viruses. bacteria. goofies. doofies. Gargle with it and put it directly on the sores as they begin to devlop. Put it on your tooth brush to kill the goofy/doofies that live there. Change your tooth brush every 6 weeks.

By the way, canker sores are Herpes Type A. That is the herpes virus above the waste. Herpes type B exists below the waste.

It's probably the same ca ca. Guess how it spreads? My best guess is: sexually. And that sounds really riduculous to me, too. I guess I'm no help! But I do wish you well.

[bigapplekathleen]

Sorry, Sweetie...I go back to my first post: use TEA TREE OIL!

Because HELLO: it kills viruses. bacteria. goofies. doofies. Gargle with it and put it directly on the sores as they begin to devlop. Put it on your tooth brush to kill the goofy/doofies that live there. Change your tooth brush every 6 weeks.

By the way, canker sores are Herpes Type A. That is the herpes virus above the waste. Herpes type B exists below the waste.

It's probably the same ca ca. Guess how it spreads? My best guess is: sexually. And that sounds really riduculous to me, too. I guess I'm no help! But I do wish you well.

Actually, you're wrong on the origin of the sores. These are NOT herpes and are not spread sexually. They are purely VIRAL. I have gone over and over this with the specialists. They have been cultured, etc. It is definitely NOT that.

K

[ravenwoodglass]

By the way, canker sores are Herpes Type A. That is the herpes virus above the waste. Herpes type B exists below the waste.

Canker sores are not herpes. You also can not distinguish which type of herpes sores are present just by the location. You can get genital herpes anywhere and the same with oral herpes. The differences in them are found through analysis of the cultures. Just because a lesion is either above or below the waist is not the defining diagnosis of which type they are. A quick lesson on canker sores is below. I have bolded the material that is most of interest to celiacs.

http://www.emedicinehealth.com/canker_sores/article_em.htm

Canker sores, also known as aphthous stomatitis, are among the most common causes of painful sores in the mouth.

From 20%-40% of the U.S. population have them at some point in their lives.

The peak incidence occurs among people in adolescence and young adulthood. They become less frequent as we get older.

They are not contagious.

Canker sores are not the same thing as cold sores. Cold sores ("fever blisters") occur on the outer lip, whereas canker sores are found inside the mouth.

No one knows what causes canker sores. The vast majority of people who develop canker sores do not have another problem as the cause.

The disease is suspected to result from a reaction of the immune system.

Additional causative factors may include the following:

bacterial infections

hormonal disorders

stress

trauma

heredity

drugs (including anti-inflammatory drugs, such as ibuprofen, and beta-blockers, such as atenolol)

food allergies or sensitivities (chocolate, tomatoes, nuts, and acidic foods such as pineapple)

toothpastes containing sodium lauryl sulfate

deficiencies of iron, folic acid, or vitamin B12

Some studies have suggested an association with Helicobacter pylori, the same bacteria that cause peptic ulcers.

Recurrent canker sores have been associated with inflammatory bowel diseases, such as Crohn disease and ulcerative colitis. In these cases, the development of canker sores may signal a flare-up of the bowel disease.

Celiac, or abdominal, sprue, a disease of the intestines caused by sensitivity to gluten, causes malabsorption and is associated with development of canker sores. Gluten refers to a group of proteins found in wheat, barley, and rye.

[bigapplekathleen]

Ok...complete frustration here...

After taking prednisone for FOUR WEEKS, the sores all came back within 48 hours of stopping the meds. I am so angry! My mouth hurts so much. The blood tests were negative for coxscakie and my new infectious disease doc ran all kinds of blood work to check for vitamin deficiencies. There are NONE. So, we have no cause. But here I am, virtually unable to speak, not wanting to eat, and sick from trying to use the kenalog spray in my mouth (makes me choke!).

This doc thinks this is just related to celiac, and wants to keep treating the symptoms until they finally subside. So, he doesn't want to use prednisone anymore, but is suggesting Dapsone. The problem I see with that is that I am allergic to sulfa drugs, and there is often an allergy to dapsone when someone is allergic to Sulfa.

Really, seriously, has anyone had experience with this? I am ready to call the Celiac Disease Center to ask for their help.

Thoughts?

Kat

[ravenwoodglass]

Ok...complete frustration here...

After taking prednisone for FOUR WEEKS, the sores all came back within 48 hours of stopping the meds. I am so angry! My mouth hurts so much. The blood tests were negative for coxscakie and my new infectious disease doc ran all kinds of blood work to check for vitamin deficiencies. There are NONE. So, we have no cause. But here I am, virtually unable to speak, not wanting to eat, and sick from trying to use the kenalog spray in my mouth (makes me choke!).

This doc thinks this is just related to celiac, and wants to keep treating the symptoms until they finally subside. So, he doesn't want to use prednisone anymore, but is suggesting Dapsone. The problem I see with that is that I am allergic to sulfa drugs, and there is often an allergy to dapsone when someone is allergic to Sulfa.

Really, seriously, has anyone had experience with this? I am ready to call the Celiac Disease Center to ask for their help.

Thoughts?

Kat

I am so sorry this has returned. If it is related to the celiac then you may be getting just enough gluten somewhere to keep it active. Perhaps it is a nonfood item that is getting you, do you have pets or have you got a hobby where you are using paints or clays or adhesives? Have you checked all your toiletries and cosmetics? Do you have a significant other who eats gluten and uses gluten toiletries? How about any supplements and meds you take, have those been checked? Generic drugs do need to be checked with every refill as they can change binders at will. Your toothpaste or mouthwash? Do you use gluten grain vinegars and alcohols? With skin effects those may not be safe for you. Have you done any remodeling in your home recently? Drywall and wallpaper paste and even wall paint can be a problems. If I have listed stuff that you have already checked please forgive me. You may want to try the Dapsone with great care and an epi pen handy, if your allergy is severe, but the ideal is to find out what is getting you so you don't outbreak again as soon as the dapsone course is over.

[bigapplekathleen]

I am so sorry this has returned. If it is related to the celiac then you may be getting just enough gluten somewhere to keep it active. Perhaps it is a nonfood item that is getting you, do you have pets or have you got a hobby where you are using paints or clays or adhesives? Have you checked all your toiletries and cosmetics? Do you have a significant other who eats gluten and uses gluten toiletries? How about any supplements and meds you take, have those been checked? Generic drugs do need to be checked with every refill as they can change binders at will. Your toothpaste or mouthwash? Do you use gluten grain vinegars and alcohols? With skin effects those may not be safe for you. Have you done any remodeling in your home recently? Drywall and wallpaper paste and even wall paint can be a problems. If I have listed stuff that you have already checked please forgive me. You may want to try the Dapsone with great care and an epi pen handy, if your allergy is severe, but the ideal is to find out what is getting you so you don't outbreak again as soon as the dapsone course is over.

I don't even have gluten foods in my house. IN fact, they have never been in my house, since I just bought it 2 years ago and it was new. I live alone. My friends don't bring gluten here. I do not eat out at all anymore. I eat no processed foods - just meat, fish and veggies (and a little fruit). That's it. My toothpaste is tom's of maine - which is gluten-free. I don't use mouthwash (too painful). I use chapstick (gluten-free). Shampoo and cosmetics are all gluten-free. All drugs have been checked for gluten. (I carry a gluten-free drug list with me, and use my iPhone to check the online list and even call the companies to check.) I use no vinegar and no grain alcohols. (not allowed to drink because of my mono.) I have no pets; I don't use anything that poses a threat, unless they have started putting gluten in the ink in the newspaper or in my printer ink. ( Like that could ever happen!) And, really, I am not ingesting that stuff. I use antibacterial hand wipes in the car but they are even gluten-free. There is NOTHING that poses a gluten threat. NOTHING. I am not having ANY stomach issues, which normally would be severe with gluten ingestion, so it doesn't seem to be a current gluten issue at all. In fact, during this crisis, I have started to eat dairy again and it hasn't even bothered my stomach. (I wasn't off of it because of allergy...just didn't like it and once in a while it upset my tummy...but not now.)

The doctor refused to try the Dapsone today because of my sulfa allergy (because, ironically, my symptoms from sulfa include MOUTH SORES and rash as well as stomach issues). We just can't go there. They are suggesting Colchicine instead, but will wait til the current prednisone dose is over.

The did a punch biopsy on my mouth sores today to check for more stuff. I also called the Celiac Disease Center and they are seeing me right away tomorrow and they will consult with my infectious disease doctors.

Some of my blood work has come back, and is negative for everything from coxscakie to lupus and vitamin deficiencies. But, it's all not back yet, so we really don't know.

I am just at a loss. In my industry, it's tough to not be able to speak properly. It even hurts to smile. And now I am completely wired again from the prednisone I started again today (for 2 more weeks).

I simply cannot believe it's even related to gluten, but everything is pointing to that since it seems the most logical cause.

I appreciate just being able to sound-off about this. My non-celiac friends don't get it. And when I tell people I have a canker sore outbreak, they don't really 'get' that I mean HUNDREDS. The pain is unbearable.

k

[aikiducky]

I can't think of anything helpful to suggest, but I just wanted to send some good thoughts your way!

Pauliina