Ulcers In The Mouth For At Least 10 Years. Gluten Maybe?

[StacyLynch]

I have made a couple posts but left out a issue we deal with a few times a month for the past 10 years at least. He has mouth ulcers. So bad his speech is altered due to the pain. Can that be related to gluten? I have not heard of Celiac until the past 3-4 days so bare with me.

 

Diagnosis
1) 345.9 Seizure
2) 279.9 Immune Mechanism Unspecified Disorders
3) 579.8 Food Intolerances
4) 279.01 IgA  Selective Deficiency
5) 277.9 Neurotransmitter Disorder
 

 

[cyclinglady]

Yes!

[HavaneseMom]

Hi StacyLynch,

Sorry to hear about his painful mouth ulcers. Another poster just started a topic about mouth sores and I mentioned a couple of things that have helped me here:

https://www.celiac.com/forums/topic/111132-tongue-sores-anyone-how-do-i-get-them-to-go-away/

 

I honestly don't know anything about seizures, but if it is causing him to bite or rub his teeth on his tongue in any way, that could lead to ulcers too.

[etbtbfs]

I had frequent oral canker sores until I went gluten free.

[nvsmom]

It seems most autoimmune diseases end up with mouth ulcers.  I used to get them more often before going gluten-free, but I still get them now which I attribute to other health issues.

 

There are over 300 symptoms of celiac disease, many of which will cross over into other health problems making it harder to figure out what is what.  This is the complete list of 300: Open Original Shared Link

[jaggirl47]

I am so glad to see mouth ulcer posts. I was going to post about them. My oldest is going through testing right now and both of my kids get mouth sores. We just went back on gluten to get my oldest prepped for endoscopy in 1 1/2 months and I ended up with mouth sores again within 2 days. I always thought it was due to teeth grinding (they are on my cheeks) but didn't have them at all while gluten free.

[Noobette]

I had frequent canker sores for decades, starting as a very young child - basically as young as I can remember. They decreased dramatically when I stopped eating gluten.

[StacyLynch]

Jagg, I am REALLY new to this. I never heard of Celiac until maybe 5-6 days ago. My son may not even have it. The only proof I have to give the primary care and neuro is IGA deficiency on labs and those are new. 20 years of uncontrolled epilepsy.  I have read that even if he tests negative for Celiac he might still be gluten sensitive. I heard there is no test for that. I guess you just go gluten free for a while and see what happens. He does not have ANY stomach issue. This is day 4 of no seizures and I am shocked really. I can't see how day one of no gluten seizures stopped because I read it takes 6 months to get out of the system.  This is a great article (below). I also have a son, who is 25 and has schizophrenia. I wonder if gluten free will help him.

Open Original Shared Link

[murphy203]

This is day 4 of no seizures and I am shocked really. 

 

That's really great news!!!  Don't assume he has to have stomach issues -- it was anemia that led to my diagnosis.  The one stomach issue that I did have (but never reported to my docs beforehand) was recurring (nightly) acid reflux that went away pretty much immediately on the gluten-free diet. 

[StacyLynch]

We see neuro today, just happens to be a regular follow up appointment. I'm bring her his labs showing the IGa issues and dx of Iga deficieny. I really hope she does not fight me on getting him checked for Celiac. Worst case she says no and we wait for allergists insurance approval (any day now) and im sure they will do it and food intoerences test/allergie panel. It's just that I need to have it tested ASAP becasue hes not had gluten for 5 days. 5 days no seizures! I am terrifed to give him gluten at this point, only because he had 3 days of cluster seizures last week. Just so you all know he is a BIG BIG bread eaters and becasue of his health i buy him the best whole wheat bread i can find. If he has gluten sensitivity OMGOSH, i was doing the worst thing I could do, WHEAT BREAD.

 

20 years of seizures, 26 failed meds, 2 brain surgeries, IVIG, ACTH, VNS, KETO diet and charlottes web medical marijuana oil..........Well, NEURO BETTER do a simple blood test for celiac. At least to rule it out if needed.

[LauraTX]

Did the neuro order the blood tests?  Sometimes specialists will refer to other specialists if it is outside of their scope of care.  However, if he has seen him for a long time hopefully he will just order them.

 

Also, don't feel bad about feeding him wheat bread.  No worse on the gluten scale than regular bread.... they are all bad.  That may not make you feel better, huh?    

 

Also, when did you guys try IVIG for him?  (for other readers IVIG stands for intravaneous immunoglobulins) If he is still on IVIG that can affect the accuracy of the Celiac blood tests.  If it was something like years ago, then it will not affect it at all, it only stays in the body for 3 months or so.

[StacyLynch]

He had the IVIG 10 years ago, only for 4 weeks total. The neuro was very interested in what is going on. She almost ordered the labs but I got the approval today for allergist and we have an appointment next Tuesday. She decided to hold off and have the specialist do it, also her insurance code sometimes if it's not neurology related it will be denied.  Guess what  if my son does not have a seizure today, he will hit one week seizure free tomorrow. This is unheard of. Allergist nurse said DON'T give gluten as of now, only because if he goes almost 2 weeks (next Tuesday) without a seizures, its almost proof its the gluten even if he tests negative for Celica.  Neuro was almost a skeptic until she saw his total serum IgA. IgG is in normal range, so she is baffled. She is leaning more towards gluten sensitivity then celiac.

[LauraTX]

That is quite profound that he has gone a week seizure free.  Have them run the tests but like you said, if cutting gluten does the trick, then definitely keep it that way.  Weighing the risk versus benefit of putting him back on gluten, this may be one of those cases where it isn't worth it.  

[StacyLynch]

Like I said, im really only a week or so EVER hearing about this. If the labs won't be accurate due to me keeping him off of gluten I will go with advice from the allergist. I hope they don't want to "TEST" the calm waters so to speak with gluten.  The seizures cluster was SOOOO bad over a week ago, i'm terrified.  He has had cluster seizures for 20 years and due to that he had to have a right temporal lobotomy (removed part of his brain). That was due to clusters and damaged done to that area of the brain.  If he wants me to restart gluten, what I have decide to do is ask him if we can wait it out a month. Honestly if he stops having seizures, I could really care less about a full on diagnosis.  Too risky. I am still getting educated on this.