I stopped eating wheat yet still have problems??

[Dd89]

Around a year ago I got a very painful and patchy tongue that would resemble geographic tongue. I saw a naturopath and she assumed it was celiac/candida so I followed her guidelines on what to eat and supplements to take. It was such a limiting diet no sugar no coffee, nothing acidic no dairy/wheat etc. After about 5 months of taking her advice my tongue did show signs of clearing up visually but still would bother me on the right side. Now I don’t get as much tongue patches it kinda of resembles scalloped tongue on the sides. So I felt I wasn’t getting anywhere with the naturopath and it was costing me to see her so I stopped. Since then I still don’t eat wheat and have a very limited no sugar no coffee or anything acidic diet (other than steak). I still feel pain that comes and goes on the right side of my tongue despite my limited diet. The only vice I have in my life is smoking cannabis and when this started I couldn’t bare to smoke anything cause of the pain. Now I find it doesn’t hurt finally and it relieves me of any tongue pain plus makes me hungry which is great since I don’t have a big appetite to begin with. If I’m sober I feel it bothers me more my tongue. I do feel the gut and the tongue are related and I do get some digestive issues whenever I deviate from my diet. The last time I ordered wings I had diarrhea for 3 days and noticed they were not gluten free. I believe I could have celiac because once something I eat doesn’t sit well mentally I feel really negative until the bowel moments over. I’ve tried b12 supplements and still no improvement and my doctor said it must be allergy of some sort if b12 didn’t help. My dentist just noticed tooth decay and assumed silent reflux but didn’t find anything serious during my appointment with my tongue. The last doctor I talked to believed it was an auto immune disease like celiac but at this point I’m not willing to eat any gluten just so it shows up on the blood test. Yet I’m still so confused ..I feel I’ve changed a lot over the year to find the answer.. it’s definitely improved the tongue pain but I don’t know the cause. Thanks for reading any help/experience is greatly appreciated.

[Scott Adams]

It sounds like you don't wish to eat gluten for 8 weeks to get tested for celiac disease, but have symptoms of gluten sensitivity. It also sounds like your diet may not be 100% gluten-free, and whether you have celiac disease or gluten sensitivity, your diet needs to be 100% gluten-free.

Here is an older article on geographic tongue, and how it might be related to celiac disease, but I've not seen much more published on this connection since then:

You may want to try an elimination diet and keep a food journal to see if it might be linked to things that you are eating.

[trents]

Welcome to the forum, Dd89!

Why haven't you been tested for celiac disease? Several medical professionals seem to have guessed that you have it but you do not mention every having actually been tested for it. The first stage of testing is simple blood draw sent to a lab to test for antibodies associated with celiac disease. If this blood test is strongly positive then a second stage of testing is often ordered by a doctor which involves an endoscopy/biopsy to check for damage to the small bowel lining. Of course, for either  test you would need to have been eating a significant amount of gluten on a daily basis: at least 6-8 weeks before the blood test and at least 2 weeks before the endoscopy/biopsy.

The phenomenon with the tongue you describe is not one I have ever heard before in connection with celiac disease. Certainly, it is not a classic symptom. 

The final thing I would say is I wonder if you really have been eating gluten free. That requires more than eliminating major sources of gluten like bread and pasta. It also involves eliminating micro amounts of gluten such as occurs through cross contamination or even small intentional amounts that manufacturers put in food such as "malt flavoring" that is often found in breakfast cereals or in pills for filler.

[Dd89]

Hey guys much appreciated, thanks for the comments and information. I did the food journal approach and couldn’t find the culprit either, I’ll definitely check out that article thanks! I haven’t been tested because like I mentioned don’t want to eat gluten for that long and risk my tongue getting worse like it once was( like I said it has improved). I have been eating gluten free for at least 8 months and it’s a strict diet.. I make all my food myself it’s very rare that I order out( not much options anyway). I just mentioned I ordered out to describe possible celiac symptoms I could have had( burning diarrhea basically). I have done a lot of research on geographic tongue and most people say it’s nothing to worry about and there’s no cure, yet there’s a lot of different opinions on what it’s caused by. Most people don’t change their diet at all and don’t think it’s linked to the gut which I don’t believe, since acidic/citrus effects it.  It’s nice to know it’s not a major symptom of celiac if that’s the case, since that’s been the majority of the suffering this last year. Once again thanks!

[trents]

2 minutes ago, Dd89 said:

 I have been eating gluten free for at least 8 months and it’s a strict diet.. 

I take it you left out "not"?

[Dd89]

Nope. Read that again, gluten free

[trents]

Sorry, my bad. My eyes skipped over the word "free."

[Dd89]

♥️ 

[Posterboy]

3 hours ago, Dd89 said:

I’m still so confused ..I feel I’ve changed a lot over the year to find the answer.. it’s definitely improved the tongue pain but I don’t know the cause. Thanks for reading any help/experience is greatly appreciated.

Dd89,

Geographic tongue and mouth sores are commonly caused by Riboflavin deficiency and a Lysine deficiency.

Here is a an article about it.....part of it is behind a paywall but you will get the gist of the idea....

https://glutenfreeworks.com/health/tongue-magenta-swollen/

See also this thread about mouth sores in Celiac's...

If this don't help you can search for the Posterboy on Celiac.com and read some of my blog posts....

I was you once.....you can get better.

I hope this is helpful but it is not medical advice.

Posterboy,

[Dd89]

Wow thank you for the encouragement! Much appreciated I will check it out !

[Dd89]

35 minutes ago, Posterboy said:

Dd89,

Geographic tongue and mouth sores are commonly caused by Riboflavin deficiency and a Lysine deficiency.                                      

How much mg of each should I take a day ? Do you also take a multivitamin? Also do you have a regular diet now once you solved the tongue issue? Thanks again it’s been hard to find someone to relate to.

[Oldturdle]

If it is candida, or oral thrush, your tongue/mouth situation can easily be treated with prescription nystatin swish and swallow mouth wash.

[Dd89]

2 hours ago, Oldturdle said:

If it is candida, or oral thrush, your tongue/mouth situation can easily be treated with prescription nystatin swish and swallow mouth wash.

Thanks for the comment and info Turdle, haha cool name  I’ll look it up

[Posterboy]

On 6/2/2021 at 7:26 PM, Dd89 said:

How much mg of each should I take a day ? Do you also take a multivitamin? Also do you have a regular diet now once you solved the tongue issue? Thanks again it’s been hard to find someone to relate to.

Dd89,

I am going into the hay field again this weekend....

In order to be brief.....and tie some loose ends (threads) I have not responded back too yet...

I will just say read some of Posterboy blog posts....

If you still have questions you can always PM....

But here is a thread that summarizes my experience and will also answer some of your questions....

It is about DH a conditions that Mimic's Pellagra and the only way to see if it is Pellagra or in your case and mine too it was really probably Pellagra Sine Pellagra is to take B-Complex to see if your conditions don't improve after two or three months of B-Vitamin Supplementation.....

The main difference between Pellagra and Pellagra Sine Pellagra is the amount of Skin Issues you develop...

Pellagra Sine Pellagra will also have terrible GI problems but limited skin issues unlike Pellagra which a notice rash element/feature  and why the Horrible Mouth Sores and Geographic Tongue  is an important clue.

Your GI tract is taking the brunt of the suffering and it  hasn't gotten bad enough to include your skin yet...

This short online blog about why Pellagra affects certain body parts explains it well...

https://pellagradisease.wordpress.com/

Where ever their high Cell Division and High Energy requirements is where Pellagra shows up FIRST....

And WHY only your GI system is affected so far because BOTH requirements are MEET....

You are turning over the lining of the stomach often (and why it effects your stomach acid production first) and IT is a HIGH energy requirement.

These two Posterboy blog post might help you too!

 

I hope this is helpful but it is not medical advice.

Posterboy,

[Shaa]

Hi, I have the exact same problem. This is what I found. I can not tolerate lactose. It causes the sore tongue and other symptoms that are more like celiac intolerance. You should eliminate foods with lactose. Unfortunately lactose is in lots of food. This means that my body can’t tolerate but so much sugar either. Too much sugar whether from lactose or other sources causes sores and tongue pain. Good news is that it goes away when you stop ingesting lactose or sugar. What made it hard to figure out was that once your gut has reached its sugar/lactose limit all kinds of foods that normally would not bother you start making the sores and pain worse. When you get the sores cut out all sugar for a couple of days and it will go away. If you want instant pain relief try this: dip your tongue in a glass of beer. Yeah that’s right, beer. Obviously don’t swallow because beer isn’t gluten free. Dip your tongue, spit out the beer and rinse your mouth so you don’t swallow any. Unbelievably this works instantly. I have only used Budweiser ( cause that’s what my husband drinks). It will soothe the pain and make the sores go away faster. Good luck, I hope this helps you. I know how miserable those sores can be. 

[trents]

Shaa, are you sure it's the lactose in milk and not the protein "casein" which is the primary protein in dairy? People can be lactose intolerant but many who blame lactose intolerance on their health issues are actually reacting to casein. It would be interesting for you to switch to lactose free milk for a time and see if your issues with milk don't resolve.

Edited June 9, 2021 by trents

[Dd89]

5 minutes ago, Shaa said:

Hi, I have the exact same problem. This is what I found. I can not tolerate lactose. It causes the sore tongue and other symptoms that are more like celiac intolerance. You should eliminate foods with lactose. Unfortunately lactose is in lots of food. This means that my body can’t tolerate but so much sugar either. Too much sugar whether from lactose or other sources causes sores and tongue pain. Good news is that it goes away when you stop ingesting lactose or sugar. What made it hard to figure out was that once your gut has reached its sugar/lactose limit all kinds of foods that normally would not bother you start making the sores and pain worse. When you get the sores cut out all sugar for a couple of days and it will go away. If you want instant pain relief try this: dip your tongue in a glass of beer. Yeah that’s right, beer. Obviously don’t swallow because beer isn’t gluten free. Dip your tongue, spit out the beer and rinse your mouth so you don’t swallow any. Unbelievably this works instantly. I have only used Budweiser ( cause that’s what my husband drinks). It will soothe the pain and make the sores go away faster. Good luck, I hope this helps you. I know how miserable those sores can be. 

Hey! I appreciate the response:) I haven’t had dairy in over a year and I  eliminated sugar for a good 8 months. The patches have disappeared from how it used to look my tongue and it is less painful with the limited diet I have been on for a year now. For some reason the discomfort is always on the right of my tongue and there’s always one or two marks on the front sides that are always there. I can definitely see how sugar can be a factor though since that’s what originally bothered my geographic tongue growing up. The last time I had chocolate mini eggs I developed some patches on my tongue but that was before I started my gut cleanse with the naturopath. I do believe I’ve been avoiding both sugar and dairy enough to know it’s not the main factor unless it’s a build up of something in my gut 🤷🏻‍♂️ Like the natropath assumed Candida. 

[Shaa]

37 minutes ago, trents said:

Shaa, are you sure it's the lactose in milk and not the protein "casein" which is the primary protein in dairy? People can be lactose intolerant but many who blame lactose intolerance on their health issues are actually reacting to casein. It would be interesting for you to switch to lactose free milk for a time and see if your issues with milk don't resolve.

Interesting point you make because I seem to have issues with lactose free milk but not lactose free ice cream. Hmmmm.🤔I figured it was sugar cause sweet tea causes the same sores on my tongue and so does soda....fortunately I have a strict diet and have not have any problems lately. 

[trents]

Many celiacs react to casein the same way that they do gluten and studies indicate casein can cause villi blunting in some people.

What happens if you consume a teaspoon of pure cane sugar? Do you get sores on your tongue? That question might help you separate out whether it's the sugar or some other ingredient or ingredients that are causing your issue. What is the sugar used in the sweet tea and in the soda? If you use the artificial sweetener versions of these beverages do you get sores on your tongue?