Probable celiac, sore tongue!

[Sarah9858]

Hi all,

I am new to this forum and decided to join as it is becoming more and more likely that I have celiac and will probably need lots of advice as frankly it scares the hell out of me! 

So it all started in Dec last year. Up until that point I had NEVER had any digestive issues. At the beginning of Dec my family all got a stomach bug. Me my other half and my son who is nearly 3 had diarreah. My son's and partner's symptoms stopped after 4 days and mine carried on. 

I went to the gp and had blood tests done which showed a 'slightly elevated' ttg (I think) of 12. I was referred for a colonoscopy and gastroscopy. Colonoscopy came back completely normal which thankfully ruled out colitis or chrons. The gastroscopy showed inflammation for which I am currently taking omeprazole and they did biopsies for celiac and I am currently waiting for the results. 

Since the gastroscopy on 20th April I have been suffering with a VERY sore mouth and tongue. It started off feeling like it was burnt and then the surface sort of came away and I'm now left with a smooth patch at the back and down the middle of my tongue which doesn't hurt and a rough bit at the front which is so painful. I cannot taste properly so eating is not an enjoyable experience! 

I haven't gone gluten free yet as I want to wait until I have the results back. 

Has anyone else suffered with this tongue problem and have any tips on how to deal with it please? I am due to have a blood test on weds to check my iron levels but I have read that a sore tongue can also be a symptom of celiac. 

My other symptom (diarreah) gradually got better since Dec to the point where I have now had normal bowel movements for over 2 weeks, before that it was once a week whereas when it first started it was pretty much every day. 

Sorry for such a long post but I wanted to give a full history.

I know I need to wait for the biopsy results but how likely do you think it is that I have celiac? Any support would be appreciated please. Thank you. 

[cyclinglady]

Welcome to the forum!  Unfortunately, symptoms for celiac disease can overlap with many other illnesses.  The blood test and intestinal biopsy can help to diagnose celiac disease.  You will just need to wait.  ☹️  Consider asking for the complete celiac panel, if you still think it might be celiac disease.  

 Please do not discount Crohn's disease which can affect your complete intestinal tract starting with your mouth!  Ask your doctor too about Burning Mouth Syndrome:

Open Original Shared Link

I wish you well!  

 

[Posterboy]

8 hours ago, Sarah9858 said:

Hi all,

I am new to this forum and decided to join as it is becoming more and more likely that I have celiac and will probably need lots of advice as frankly it scares the hell out of me! 

So it all started in Dec last year. Up until that point I had NEVER had any digestive issues. At the beginning of Dec my family all got a stomach bug. Me my other half and my son who is nearly 3 had diarreah. My son's and partner's symptoms stopped after 4 days and mine carried on. 

I went to the gp and had blood tests done which showed a 'slightly elevated' ttg (I think) of 12. I was referred for a colonoscopy and gastroscopy. Colonoscopy came back completely normal which thankfully ruled out colitis or chrons. The gastroscopy showed inflammation for which I am currently taking omeprazole and they did biopsies for celiac and I am currently waiting for the results. 

Since the gastroscopy on 20th April I have been suffering with a VERY sore mouth and tongue. It started off feeling like it was burnt and then the surface sort of came away and I'm now left with a smooth patch at the back and down the middle of my tongue which doesn't hurt and a rough bit at the front which is so painful. I cannot taste properly so eating is not an enjoyable experience! 

I haven't gone gluten free yet as I want to wait until I have the results back. 

Has anyone else suffered with this tongue problem and have any tips on how to deal with it please? I am due to have a blood test on weds to check my iron levels but I have read that a sore tongue can also be a symptom of celiac. 

My other symptom (diarreah) gradually got better since Dec to the point where I have now had normal bowel movements for over 2 weeks, before that it was once a week whereas when it first started it was pretty much every day. 

Sorry for such a long post but I wanted to give a full history.

I know I need to wait for the biopsy results but how likely do you think it is that I have celiac? Any support would be appreciated please. Thank you. 

Sarah9858,

I used to have many of the similar issues.  When I had "tongue" flare ups it was usually related to canker sores.

Taking the Amino Acid Lysine can help with Canker sores so in theory it might help your "sore tongue".

If you can stand it swilling with salt water it will help sores heal quicker.

Here is a livestrong link about the issues of taking Lysine and possible interactions with some antibiotics.

Open Original Shared Link

but  unless you are taking antibiotics (usually those ending in (cin like neomycin etc. see the link) taking Lysine is very safe in general.  Amino acids like B-vitamins are water soluble and are not stored in the body for long periods of time.

When I used to have canker sores taking 500mg to 1000mg Lysine (depending on how bad my outbreak was) up to 3 to 4 a day 2 to 3 hours apart usually got rid of my canker sores in a couple days time.

It can be taken prophylacticlly as a preventive to avoid future outbreaks if  this helps.

Citric acid in some (trigger) foods can also aggravate this condition.

see this livestrong article about it Open Original Shared Link

Tomatoes where always my trigger (even though) I love tomatoes they don't always love me back. 

***** this is not medical advice but it is probably worth a shot.

I hope this is helpful.

posterboy,

 

[ravenwoodglass]

12 hours ago, Sarah9858 said:

Since the gastroscopy on 20th April I have been suffering with a VERY sore mouth and tongue. It started off feeling like it was burnt and then the surface sort of came away and I'm now left with a smooth patch at the back and down the middle of my tongue which doesn't hurt and a rough bit at the front which is so painful. I cannot taste properly so eating is not an enjoyable experience! 

 

 

This sounds like a reaction to the numbing agent they would use with the endoscope. Have you called your doctor's office about this? If not call and ask to speak to a nurse.

[Sarah9858]

Thank you for your responses. I managed to get my blood test done today so I am hoping by middle of next week I will have some answers. The blood tests are for a full blood count, TSH (thyroid I think), B12 and folate and iron. 

I know it seems gross and sorry in advance but I have attached a pic of what my tongue looks like at the moment. The pink bit doesn't hurt but the whiteish bit is sooo painful! The dip in the middle is from an old piercing! 

[Sarah9858]

5 hours ago, ravenwoodglass said:

This sounds like a reaction to the numbing agent they would use with the endoscope. Have you called your doctor's office about this? If not call and ask to speak to a nurse.

The endoscopy was done transnally so I only had something sprayed up my nose? Do you think it could have got on my tongue that way? 

[cyclinglady]

4 hours ago, Sarah9858 said:

The endoscopy was done transnally so I only had something sprayed up my nose? Do you think it could have got on my tongue that way? 

A month is a long time to still have an allergic reaction.   I am not a doctor, but your tongue looks an awful lot like the Burning Mouth Syndrome images.  Of course it could be celiac related.  Who knows?  I think your doctor is your best bet!  ?

[Sarah9858]

1 hour ago, cyclinglady said:

A month is a long time to still have an allergic reaction.   I am not a doctor, but your tongue looks an awful lot like the Burning Mouth Syndrome images.  Of course it could be celiac related.  Who knows?  I think your doctor is your best bet!  ?

Thank you, I will be sure to update next week when I get some results back. 

[Beverage]

Hi.  Did you doc see your tongue?  Did he/she check you out for oral thrush?  

[Sarah9858]

Hi all, 

So I got my biopsy results and basically they were inconclusive! The actual wording was 'cannot exclude celiac but cannot confirm diagnosis'. 

So i am still in limbo. Still having issues with my tongue although it has got better since I last posted. I stopped taking omeprazole as i felt it was making me have a dry mouth. My mouth does feel better now but still smooth and sore. 

Spoke to the doctor today who is referring me to a maxillofacial consultant to see if they think the tongue issues are celiac or something else. 

 

So yeah still don't know what's going on. On the plus side I have had D for over 3 weeks now! 

[Sarah9858]

Spoke too soon! Diarreah again this morning and generally feeling rubbish!! 

[Victoria5289]

On 5/5/2017 at 9:56 AM, Sarah9858 said:

Thank you for your responses. I managed to get my blood test done today so I am hoping by middle of next week I will have some answers. The blood tests are for a full blood count, TSH (thyroid I think), B12 and folate and iron. 

I know it seems gross and sorry in advance but I have attached a pic of what my tongue looks like at the moment. The pink bit doesn't hurt but the whiteish bit is sooo painful! The dip in the middle is from an old piercing! 

 

On 5/5/2017 at 9:57 AM, Sarah9858 said:

The endoscopy was done transnally so I only had something sprayed up my nose? Do you think it could have got on my tongue that way? 

This sounds like a liver issue