• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Here, Please Help
0

8 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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! <_<

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Acidy stuff burns my tounge up!

Here is the Frito-Lays list:

http://www.fritolay.com/fl/flstore/cgi-bin...odID_352992.htm

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.

0

Share this post


Link to post
Share on other sites

Lays discussion

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,378
    • Total Posts
      935,770
  • Member Statistics

    • Total Members
      65,070
    • Most Online
      3,093

    Newest Member
    Catseyez
    Joined
  • Popular Now

  • Topics

  • Posts

    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
    • Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.)  Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 
  • Upcoming Events