Symptoms and my trigger for gluten exposure? Does anyone have this too ?

[Tony G]

Hello, I was diagnosed w celiac in 2016 and I am male age 46- there is some extended family also w celiac.  What happened w me is that I started to get canker sores/ mouth sores in my mouth and especially on tongue and in and around cheeks, inside lip area, they became too frequent and lasted a few days always- would go away for a week and then boom another round of them in my mouth.  After a few visits to different doctors they finally focused on celiac potentially after my blood test showed elevated and then I got a endoscopy to confirm.  Since then I have been very careful w gluten free, I only buy gluten free products at home and don't only go by ingredients labels to see if any wheat, I am sure that occasionally when I do eat out despite being as careful as I can there is inevitably CC ...... I will still get the mouth sores occasionally and it's very hard to determine if they come about bc I have gotten CC or is this something I will always get because I have celiac and doesn't matter if I get exposed to gluten or not??  I am hoping someone else has these type of triggers out there, I don't see this symptom mentioned a lot out there 

[trents]

There is a question in my mind as to whether the canker sores are actually caused by your celiac disease. Sounds like the doctors pinned it on celiac disease as there was laboratory evidence proving you were a Celiac. And having canker sores is in fact one of the documented medical conditions associated with celiac disease. But there are many other possible causes.

Have you had follow up lab work and endoscopy to check the response of your celiac disease to gluten free eating?

[ravenwoodglass]

Have your doctors done any vitamin and mineral panels on you? Sores like that can be caused by vitamin deficencies. The B vitamins in particular.  You could try supplementing with a stress level B + C combo.

[Ennis-TX]

I second the supplementing, celiac leads to damaged intestines and malabsorbtion of nutrients leading to issues with vitamin deficiencies. One other thought keep a food diary, it could also be caused by another food, spice, or additive in said foods. Celiac messes with your immune system and often we develop allergies and food intolerance issues the longer we leave it untreated. It seems from patterns I noticed that many people get issues with food they were eating when a exposure happened, a theory goes your immune system gets confused and associate another food with the exposure thus developing a allergy or intolerance to it. Other common issues are the fact 10% celiac also react to oats the same. AND due to villi damage many also have issues with producing the enzymes to break down dairy, but I doubt this would lead to your sores.

I get blood blisters/sores in my mouth from corn since I developed a allergy to it. Just a thought the sores could be an allergic reaction to another ingredient. SO keep a food diary and see if you can find a spice, sauce, or ingredient that is associated with these sores your getting.

[cyclinglady]

Just enter “canker sores” in the forum’s search box located at the top right and you will see how many members struggle with canker sores....TONS!  

[Tony G]

thank you very much for the replies, at my 6month follow up my labs showed still mildy elevated blood test for celiac and doctor said to be careful with CC but also i had D vitamin deficiency and was low - i did a weekly high dose of vitamin D supplement for about 8 weeks and then they suggested i continue to do an over the counter supplement of Vitamin D supplement (cholecalciferol 1,000 units/daily) which i have been taking the Centrum daily gummies which it says it has extra Vitamin D3 1,000 IU ....is this the same thing or should I be taking something else ?  I am going to be going in soon for another follow up and labs and discuss these things.

As far as diet , yeah its tough to pinpoint....typically i drink coffee, for meals lunch I do have alot of tomato based foods like tomato soup for lunch and then when i do gluten-free Pasta with regular store bottled sauce that says gluten-free and i still have ketchup often with a hamburger at home.  i do alot of chicken dishes with basic seasonings or marinades whcih again are gluten-free

[trents]

3 hours ago, Ennis_TX said:

I second the supplementing, celiac leads to damaged intestines and malabsorbtion of nutrients leading to issues with vitamin deficiencies. One other thought keep a food diary, it could also be caused by another food, spice, or additive in said foods. Celiac messes with your immune system and often we develop allergies and food intolerance issues the longer we leave it untreated. It seems from patterns I noticed that many people get issues with food they were eating when a exposure happened, a theory goes your immune system gets confused and associate another food with the exposure thus developing a allergy or intolerance to it. Other common issues are the fact 10% celiac also react to oats the same. AND due to villi damage many also have issues with producing the enzymes to break down dairy, but I doubt this would lead to your sores.

I get blood blisters/sores in my mouth from corn since I developed a allergy to it. Just a thought the sores could be an allergic reaction to another ingredient. SO keep a food diary and see if you can find a spice, sauce, or ingredient that is associated with these sores your getting.

Do you have references that support this assertion? Oats producing a Celiac reaction has always been a controversial topic, anecdotally, anyway. But as far as I know all the studies done have not supported this when cross contamination with wheat is ruled out. Here is an example from a pretty recent study: Open Original Shared Link

[Ennis-TX]

25 minutes ago, trents said:

Do you have references that support this assertion? Oats producing a Celiac reaction has always been a controversial topic, anecdotally, anyway. But as far as I know all the studies done have not supported this when cross contamination with wheat is ruled out. Here is an example from a pretty recent study: Open Original Shared Link

Open Original Shared Link
 

One study, found a few others talking about people with celiac developing a separate antibody reaction to oat proteins, and only certain varieties of oats at that that was done in Europe, I found countless threads of others reacting. I recall reading the 10% ratio years ago but can not find the article, hell even several others and even moderators here quote that statistic. Perhaps they have the study with that saved.....I know I had reactions to oats...it was different then my standard gluten reactions but still caused issues.

[trents]

That article cites a pretty dated study. Doesn't necessarily make it invalid but does make me a little cautious about buying into the premise.

[Posterboy]

4 hours ago, trents said:

That article cites a pretty dated study. Doesn't necessarily make it invalid but does make me a little cautious about buying into the premise.

trents and Tony G,

see the canadian site that lists many updated resources.

it is rare but does happen (oats sensitivity) in a small number celiac's.  I didnt' see what percent that was though.

Open Original Shared Link

the gluten free society summarizes the "oats" issue well.

Open Original Shared Link

quoting

"The studies above were all published after Jan. of 2011.  In medicine, it can take 20-30 years for new information to become common knowledge among doctors.  So I don’t expect that many physicians will be talking about the potential for oat to be a problem for those with gluten sensitivity."

and they term it a "subgroup"

as often is the case many times we as patients often know our bodies better than the doctor's do.

Tony G as for the mouth uclers.

swilling with salt water will help them go away quicker.

but taking the amino acid Lysine will help your ulcers/caneker sours stay in remission. 

take it 1000mg at a time with each meal and 3 or 4 days they will mostly go away especially if you use the salt water method with the lysine.

you can take lysine ahead of an outbreak too to keep them at bay.

***this is not medical advice but I hope it is helpful. I only know it helped me.

I used to take Lysine but don't need it much anymore these days.

your arginine/lysine balance is out of wack.  You can google it.

oh . . the red sauce (tomatoes) you described is exactly what caused my mouth to be sore/raw right before an out brake.  I usually could take them for a a week until they went away on their own unless they got on my tongue and then only eating one side was more than I could bare and out would come the lysine and salt water. . .  Until I learned to take it (lysine) to keep them at bay and my lysine/arginine ratios  in balance.

again I hope this is helpful.

posterboy,

[trents]

Good point, Posterboy about the lag time between research and findings becoming common knowledge in the medical community.

[GFinDC]

Hi TonyG,

Check out the info at the vitamin D council site.  They ran tests on various vitamin D pills.  They are not all the same.  Also, oily fish is a good natural source of vitamin D.

Open Original Shared Link

 

[AJS3849]

Another possibility for the mouth sores would be GERD.  Celiac and GERD often go hand-in-hand.  There is a mistaken belief that heartburn is the most common manifestation of GERD, but that is not necessarily so.  It is possible to have "silent reflux" or "respiratory reflux" where the acid actually invades your mouth and sinuses and this can cause mouth sores.  An excellent book on the subject is "Dr. Koufman's Acid Reflux Diet" by Dr. Jamie Koufman.  It was recommended to me by the nutritionist at my gastroenterologist's office and I've found it very helpful in explaining symptoms that were difficult to diagnose and in offering dietary modifications that I have found far more effective than medications.