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Some Pics Anyone Have These?

Applegirl

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Applegirl Rookie
Applegirl
Posted

Hey there I'm new..So I've been sick for 6 years with "vague" symptoms as my doctors call them. I've had EVERY test in the universe done I swear, biopsies of sores, blood, mri mra cat scans echo cardiograms etc. No answers other than Dysautonomia. However I have these sores, and spots on my hands that don't fit into dysautonomia but I think they do with Celiac. I'm wondering if anyone else has these? I don't have pics of the spots but I can describe them .They're more like red lumps that come up on my fingers around the joints never past the lowest knuckles. Sometimes they pop up inbetween the joint. They dont'blister just stay red lumps and are painful. I can't find any rhyme or reason for them .The other thing I get that no one can figure out are these sores on my tongue. I was told it could be Geographic Tongue but that thats not a painful condition.. These hurt. I also have had constant dizziness for 6 years which I've read some can have.. Help do these look familiar? I had the blood test done today for Celiac but I won't get results till Mon. or Tues. Thank you!!

This is pretty mild as far as the sores are concerned they can really get big and they'll be all over.

DSCI2421.webp

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GFinDC Veteran
GFinDC
Posted

Well, first off, you should learn to stay away from frozen metal poles. Ok, kidding. I got nothing. :)

Did you have the antibody blood tests? The next thing they often do is an endoscopy to see if there is blunting of the villi in the small intestine. If they want to do an endoscopy you will need to keep on eating gluten like usual until it is over.

There are so many different possible symptoms of celiac disease that I wouldn't be surprised if your tongue problem is one of them. I read a thread a while back about someone having mouth blisters and the thinking was they had a wheat allergy.

There is a condition called dermatitis herpetiformis (DH) that some celiacs get. It affects the skin but I am not sure about the tongue. There is a dedicated DH section of the board on this site. There are some threads in the DH forum with pics of the skin blisters also.

Welcome and glad to have you here. Someone smart will probably come along with insight soon... :-)

Nice picture! :P :P :D

Heidi S. Rookie
Heidi S.
Posted

I don't even know how to start this. I know how you feel my sister and I both used to get them too. My sister worse than me. They are ugly and sore, like patches of sores that travel. They come in bursts and make your tongue super sensitive to heat or salt etc. My sister was told by a doctor that they were a sign of an immune deficiency. She has a primary immune deficiency and celiac diease. I have gluten intolerance but no proven celiac diease (do not carry the gene) with no other diagnosed immune or auto-immune deficiencies. Since going gluten free both of our tongue spots have disappeared or changed to very slight outbreaks!!

Additional question: Do you ever get red rings around your lips? Like super dry chapped lips but over the top of your lips? I know I am not describing this correctly but do you ever get really bad chapped lips that seems more than most people???

I recognized the tongue pictures right away!!

Dixiebell Contributor
Dixiebell
Posted

I saw a new Mystery Diagnosis the other day. The episode was "The Girl With No Bowel". The second half of the show had a lady with strange bumps on her face and hands.

Applegirl Rookie
Applegirl
Posted
  • Author

I don't even know how to start this. I know how you feel my sister and I both used to get them too. My sister worse than me. They are ugly and sore, like patches of sores that travel. They come in bursts and make your tongue super sensitive to heat or salt etc. My sister was told by a doctor that they were a sign of an immune deficiency. She has a primary immune deficiency and celiac diease. I have gluten intolerance but no proven celiac diease (do not carry the gene) with no other diagnosed immune or auto-immune deficiencies. Since going gluten free both of our tongue spots have disappeared or changed to very slight outbreaks!!

Additional question: Do you ever get red rings around your lips? Like super dry chapped lips but over the top of your lips? I know I am not describing this correctly but do you ever get really bad chapped lips that seems more than most people???

I recognized the tongue pictures right away!!

I don't get rings around my lips but I ALWAYS have super dry chapped lips.Doesn't matter how much chap stick I use.

ksymonds84 Enthusiast
ksymonds84
Posted

I get these on my tongue too and they hurt. Always told it was geographical tongue. I just got over a bad spell of them so I did some digging and found these articles stating that dermatitis herpetiformis can indeed happen on the tongue

Open Original Shared Link

you will find it under clinical manifestations

Open Original Shared Link

and this one is from the Celiac Sprue Assocation. I bolded whats important.

What are the Symptoms of Dermatitis Herpetiformis?

Typically, DH can be characterized as an intensely itchy skin eruption distinguished by the formation of small papules or vesicles. The patient may perceive having red bumps and blisters. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the extensor surfaces of the body: over the elbows, knees, buttocks, scalp, posterior, neck, sacral (lower end of the spinal column) and shoulder areas. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth. Although its severity may vary, it persists indefinitely and is a lifelong condition. There are only a few patients in whom the disease remits for long periods of time.

Mine are just about gone but they were very painful and itchy looking like yours but covering most of my tongue, not what you usually find with geographical tongue.

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