Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here, Please Help


kellyk

Recommended Posts

kellyk Newbie

I was diagnosed with Celiac disease in early Oct this year. Had the symptoms all my life. blah blah, I'm gonna leave out the details now, becuz I have a specific question I need some feedback on, and if I let myself ramble I will...

so

being gluten free for about 3 months now, except for the occasional slip up, I'm wondering what is going on with my mouth, or my tongue rather. I have always in the past sporadically encountered mouth sores, sensitive tongue, glositis (the temporary flattening of the tongue due to many things, acidity, spicy foods...etc.), however, about a week ago (I noticed after chowing down on frito baked lays) my tongue got the glositis, where it became sore and raw feeling. It went away for a few days, then just yesterday came back with a vengence. Not only my tongue, which feels swollen and sore, with what looks like an inflamed tastebud on it, but the insides of my mouth are a little torn up...(I've been chewing on candy though all day today and yesterday).

I'm thinking that's the cause of the mouth soreness. The weird thing is is that I can't quite locate the specific spot of burning and soreness, its pretty general. I'm thinking it could be a combo of the lays and the fact that, even though knowing I would suffer in some way, on Tues. of this week I ate out, makng my own salad at this salad bar using the balsamic vinegerette that they had (to steer clear of any gluten) and then drank "Fizz" along with it, a natural fruit carbonated drink.) Would the acidity from all of that really cause me this much discomfort...this is really bad, I don't remember it acting up like this before...I did read that celiac can cause this though...what do you all think, I really would appreciate your feedback. Do any of you get this? Thank you.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest Leidenschaft

I've had my tongue split right in the middle when I've had too much acidic candy, juice etc. such as throat lozenges, Neocitrin, etc. As you maintain a gluten-free diet, your sensitivity level increases (some more than others, I'm fortunate that I'm not highly sensitive) so you may notice more severe reactions now than before.

Not sure where you're from so don't know your labelling laws, but in Canada, the baked Lays do list wheat right on the ingredients...

I used to enjoy the BBQ flavoured corn chips, and then one day a friend asked how I knew if they were safe, I told her I just have to read the labels all the time. As I was about to put a chip in my mouth, it occurred to me that I hadn't checked these in awhile. Sure enough, the ingredients had changed, and they now contained wheat! :( I gave the bag to my friend and stuck to the kettle chips I had brought as well! It was a close call that reminded me to always check labels! I do still forget at times! <_<

kellyk Newbie

Thanks for your feedback. I am actually from Chicago Illinois, in the States, and to tell you the truth I'm still doing my research, still trying to get used to all this. The reason I mentioned the chips was becuz I literally noticed, that since I was lstuffing my mouth! I could feel my tongue burning after a couple dozen, as if the salt or some indgredient was causing a reaction. Just as if you were slamming down a salad with lots of acidy dressing in it, ya know. I have read some posts on here that mentioned Lays are wheat free.

It could be that I'm just more sensitive after being off gluten for awhile now.

No more of those chips for me that's for sure.

It's just really uncomfortable to have my tongue swell and be like this.

Thank you so much for the response though, the support on this board is amazing.

MySuicidalTurtle Enthusiast

Acidy stuff burns my tounge up!

Here is the Frito-Lays list:

Open Original Shared Link

However, they do say:

"*The above products do not contain gluten nor casein; however, they are produced on the same line as our products that do contain gluten and casein. Although the lines are washed between batches, a slight residue may remain on the lines. Individuals who are extremely sensitive may be affected."

I have been glutenfree for well over a year and get sick when I eat their products so I stay away from them.

Guest Leidenschaft

Open Original Shared Link

Hi Kelly, the link above will take you to previous discussions on this board for this topic. The only ingredients list I can find on the Baked Lays is US label which does only list "modified food starch"... personally if it doesn't list the source, I don't take the chance.

I've eaten the Lays Original, the good old greasy ones, without problem. although sometimes I think I get a bit of lactose reaction from them. I'm almost positive the one and only time I picked up a bag of Baked Lays in Canada, it listed wheat right on the label. I just haven't found an ingredients list for Canadian Lays online anywhere! :unsure: I am at the grocery after work tonight so will check then. Curiosity you know! ;)

Looks like there is plenty of info on this forum already though to meet your question. I will try to add Canadian info when I can get it!

kabowman Explorer

My doc seems to think that my mouth sores and tongue problems may actually be a B deficiency. I take (1,000% each pill) a B Complex Complete twice a day and then they get better for a while - along with my mulit vitamin. Someone suggested that it may be due to citric acid but that level stays pretty constant in what I eat/drink and the sores come and go.

I can go for a month without any problems then they start again. I then go back on the mega doses of B. In the meantime, my tongue is swolen and sore, I have bunches of sores, hard to eat, etc. I didn't have any problems until I went gluten-free last year. It is crazy...I don't know what else to do. Sometimes I even carry my bottle of Chloroseptic (sp???) with me to work so I can eat! I am just getting over another round.

-Kate

Rikki Tikki Explorer

I agree with the mouth sores. I think they are related to a vitamin deficiency of some sort. Every once in a while it happens in my mouth. I then make sure I am taking my vitamins and eventually it goes away.

The last time it happened was about a month ago and it seemed to spread into cold sores then eventually went away.

Until I read it on here I didn't relate it to the celiac.

Thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kvogt Rookie

I suffered a lot of mouth/tongue sores. I had two different things going on: 1) generally a single spot on the tongue, usually on the side, swollen, extremely painful like the nerve was inflamed. These went away about 6-9 mopnths after going gluten-free. They can come back only occasionally when I get run down (best I can determine). 2) oral lichen planus (a.k.a. OLP), on the gums and lower inside cheaks. Got better when I went gluten-free; healed completely when I went casein free (CF). Only had one flair up since CF when I got a flu shot, which I attribute to stressing my immune system.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,317
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.