Severe severe mouth pain

[Charlie1946]

Hi, I'm new, thank you for accepting me and I apologize if this has been asked before. 
I didn't realize till recently that Celiac disease affects your teeth and gums, I have always had weak teeth and bad gums. And for going on 3 months now, I have been having such severe, throbbing, burning pain in my mouth, teeth and tongue. I have spent most of the time curled up in a ball, sobbing with ice packs on my face. It's only the left side. I have been treated for sinus infections and thrush. I had a canker sore on the roof of my mouth, my tongue was coated and I had the crusty stuff in the corners of my mouth. No one knows what it is, or how to cure it. Anyone else have this?

[trents]

Welcome to the celiac.com family, @Charlie1946! I have not experienced what you are going through except possibly accelerated loss of enamel and receding gums, to some extent, anyway. But I can tell you that thrush and canker sores have been reported by other members of this online community. Let me ask you some questions.

First, how long ago were you diagnosed with celiac disease?

Second, are you consistent with the gluten-free diet?

Third, have you recently been on a course of antibiotics? Thrush often follows on the heels of being on a course of antibiotics because the antibiotics kill off the good bacteria the keep yeast and fungi in check.

[knitty kitty]

Welcome to the forum, @Charlie1946,

How long have you been diagnosed with Celiac disease?

Do you take any nutritional supplements? Vitamins? Herbal medicine?

Do you eat processed gluten free facsimile foods?

Is your diet high in carbohydrates?  

Many vitamin deficiencies can contribute to poor oral health.  Vitamin C, Cobalamine B12, Thiamine B 1, Riboflavin B 2 and Pyridoxine B6, to name a few.  

For pain, a combination of Thiamine, B12 and Pyridoxine B 6 have analgesic properties.  They work together to relieve pain better than over-the-counter pain relievers, imho.  

[Charlie1946]

11 minutes ago, trents said:

Welcome to the celiac.com family, @Charlie1946! I have not experienced what you are going through except possibly accelerated loss of enamel and receding gums, to some extent, anyway. But I can tell you that thrush and canker sores have been reported by other members of this online community. Let me ask you some questions.

First, how long ago were you diagnosed with celiac disease?

Second, are you consistent with the gluten-free diet?

Third, have you recently been on a course of antibiotics? Thrush often follows on the heels of being on a course of antibiotics because the antibiotics kill off the good bacteria the keep yeast and fungi in check.

Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭

[Charlie1946]

@knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 

[trents]

@Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general. 

It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices.

What is causing your swallowing problems? Is it the thrush?