MisterV

I have 2 questions about tongue sores.
When I am glutenized, I get 1 to 4 spots on my tongue, under the front tip or along the sides. They start red with a white border, then the white border spreads out leaving the red smoothness behind. They usually appear in 3 to 4 hours or if they are delayed by 2 or 3 days.  I have been very careful for 2 weeks and have had no known exposure. Then I went to a restaurant that dedicates a space to gluten-free cooking and I've never had an issue there before and had no reaction till 3 days later. I am wondering whether delayed tongue spots is a possibility>

2. question...if this is happening to my tongue, what is happening to my insides? I generally don't get many other symptoms any more that I am so careful.  Sometimes after the tongue sores start I am foggy brained or anxious for a day or two, but little digestive symptoms. I am paranoid about lymphoma now that I saw some statistic about celiacs being prone to it.

Reading this article and taking a closer look at this research feels like we're moving years backward.

Open Original Shared Link

Anyone know of any research that contradicts this or at least weakens it?

Thanks Lisa.

I get bi-weekly b12 shots and take magnesium supplements. I've never had my Folic Acid checked. I should request a complete panel test to see what's up.

Have you had a panel test for your mineral and vitamines tested? (It used to be called an Executive Panel)  B-12 and Folic Acid are common in deficiency for many of us. Your symptoms are not uncommon.  It could simply be an inbalance. Check it out.

1

Thanks Kamma for the links to those resources and for reassuring me. The symptoms have pretty much cleared up since I last posted...a couple little twitches and tongue nips every 3rd or 4th day, if that...so I must be getting clean. That the reaction is more serious the longer I'm off gluten is becoming quite evident. I'm so over not eating a gluten-filled diet that it doesn't bother me. My next step is to talk to my family doctor about monitoring antigliadin antibodies with blood tests, and if that's even an option under my healthplan. The anxiety has pretty much lifted as well...just some minor irritability left.
Again, my gratitude is boundless.

Yes, MisterV, that is entirely possible.  For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet.

 

There is less research on accidental or inadvertent gluten ingestion but in my case, I am looking at up to three weeks before seeing an improvement in the ataxia, slurring, tiredness.  It takes a while for the antibodies to leave your system and consequently for your body to quiet down. I also notice the severity in my reaction is increasing the longer I am gluten free and inadvertently get glutened.

 

A word of note:  Hadjivassilliou's research in gluten ataxia points to the fact that the damage to the cerebellum could become permanent due to the loss of the Pukinje cells which are the target of the ttg6 antibodies if gluten is continually ingested.  He highly recommends avoiding all gluten (even processed gluten free products) as gluten ataxia / neurological persons appear to be more sensitive to lower levels of gluten that some other celiacs/NGCI can safely consume.

 

I'm wondering if it's possible to have mild ataxia symptoms that last 2 or 3 weeks after glutinization. I have occasional coordination problems, and slurred speech for a while, then it stops for a day, then comes back...this lasts about 2 or 3 weeks then ends. Other neurological symptoms like twitches, tingles etc come and go too. Anxiety is heightened as well, some of it because I fear other illnesses, but even though I can talk myself out of that intellectually, the anxiety remains.

I've been searching for anwswers on this forum, but haven't quite found out what I'm looking for.

I've been gluten-free for 3 years. I went off gluten before being tested so I don't know if I am Celiac or non-celiac gluten intolerant.

2 weeks ago I unknowingly had a big dose of gluten hidden in some food...the usual symptoms GI, muscle pains, happened the next day. The usual anxiety attack happened 2 days later, but this time my tongue feels swollen, my speech is slightly impaired. I thought it was probably the gluten, but the tongue sensation has been fluctuating up and down without quite going away for about 5 days. I've been poking and prodding so much in the soft tissue under my skin that now I don't know if I'm sore from prodding or if my salivary glands are painful and inflamed.

If anyone has had slurred speech or a fullness in the tongue from a gluten reaction...can anyone reassure me that the symptom will fade eventually?

The problem is the anxiety aggravates my thoughts about what it is and of course I think it's a series of hundreds of other diseases.