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      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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Symptom: I Can't Talk
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11 posts in this topic

I have been playing with gluten free on and off over the past few years. I even have an Enterolab diagnosis. I don't know what it's going to take to get me to stick with it. I have had terrible psychiatric problems over the years; you'd think staying out of the psych ward would be reason enough to keep me gluten free (i always feel better sans gluten).

Anyway, I've had this strange symptom in the past that I'm curious about. Normally I am extremely good with words and very verbal. I am a great conversationalist normally.

But I have had periods in the past when I just can't talk. It's like the verbal part of my brain is impaired or something. Can gluten cause this type of symptom? I liken it to being somewhat autistic. I just can't communicate when I get like that.

Hmm??

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Hmmmm??

At times when I get glutened I feel like I am tripping over my words, or trying to speak too quick. I usually know what I want to say, but have problems getting the words out correctly, on top of that I do feel dumb when that happens and sometimes simple words are lost, I can't think of them.

So I imagine it can be the gluten doing that to you as well.

Cathy

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I used to get that too. Since being gluten-free I haven't really had that problem except for sometimes when I'm glutened. For me it's part of the psych symptoms I get.

The last couple months I was eating gluten (while I was waiting for my biopsy), I also had tongue swelling, and my teeth would scrape the edges of my tongue when I talked.

Gluten is a scary thing. I'm not sure if this is true at all, but it seems like a lot of the people who get really bad psych symptoms are also more prone to developing neurological, mobility and pain symptoms. Maybe there's an autoimmune reaction in the brain as well as the digestive system?

I'm sorry you're having a hard time staying gluten-free. Have you been gluten-free for a long period of time at all, or have you been going back and forth a lot?

Nancy

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Recently I have begun to "lose" my train of thought/words as I am speaking and have started to stutter a little when I'm confused. I know it is much worse when I am glutened because I get dizzy and an overall cruddy feeling but even though I am 100% gluten free right now it continues, although not as horrible (but it is still obvious). I didn't associate any of this with the gluten before reading this. Interesting.

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There are neurologic and mental issues associated with celiac, and this wouldn't surprise me to occur in some people. Seems like it could be related to the 'brain fog'. (I get this with a bad migraine, myself, even if it's not strictly a pain cause. It's kinda odd, you just can't figure out how to put words together into a sentence.)

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I have this problem too and I do not think I have to be glutened for it to happen. Or maybe other intolerance's can cause it to happen also. I am dealing with many intolerance's now and some days I find this to be a big problem for me.

I work very hard at keeping things easier for me. Everything has a place and I keep things in that place. I immediately put things away at work, or I will lose them. An example, just the other day, I finished the accts payable for work and took it to the doctor, he looked it over and laid it back on my desk. At this time, the acct's receivable was not finished, when it was handed to me, I added it to my accts payable sheet and returned it to the doctor. Later in the day, he asked me for it again and I could not find it, I actually could not remember him returning it. Yet, because of my fogginess at times, I decided I misplaced it, he was adamant in saying he gave it back. I searched and searched for it, I worried about where I had put it all night. Upon returning to work, I started searching again, finally giving up and deciding I would have to redo it all. I have a daily deposit book, it's a full size notebook type ledger, I pulled it out to call the bank for the daily deposits, opened it, and there was the sheet. He had stuck it in the book, then put the book back in my drawer, without telling me the paper was there. I was "just a little upset" over that and yes, I did let him know what he had done. I try so hard to keep things easiest for me to deal with and this type of incident can throw me for days.

I do believe that some of us, if we had been dealing with vitamin and mineral deficiencies for a very long time, do not heal as fast. Some of us have damage that doesn't completely recover. I try not to dwell on it. I do my best to overcompensate for my shortcomings. I used to be a very organized person by nature, now I am out of necessity. I double check myself constantly. Yesterday, I had my hands full, got out of the car at the grocery store, locked and shut the doors and immediately realized I was not holding the keys. Sure enough, because I HAD TO HAVE A TREAT, my hand was full of M&M's. KEv was on a job and had left his phone in the truck. I was in that store for an hour and a half trying to get him to bring me the other set of keys. I couldn't call anyone else because my house key was on the same set, locked in the car. He is going to hide a key on the car for me now!!!!!! ;) I never used to lock my car for this very reason, yet since I have lived here, they remind me all the time to keep the car locked. OY!!!!!!!

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Having been a language nut all my life (I started talking at around a year and never stopped. . .you'd find me in my crib, still quite happily chattering away to myself hours after I'd been put down for a nap. . .I still find it hard to curb the habit of talking to myself and if I'm not verbalising it, rest assured it's still pattering along in my head), the most disturbing symptom of my celiac disease was my developing trouble with language.

I love words (perhaps to the point of obsession. . .I've been known to play Scrabble against myself just for the pleasure of making words) and speak several languages, and it was a terrifying experience to find myself unable to find the word that would express exactly what I meant. I would find myself tumbling off the middle of a sentence, unable to find the word that would let me continue, leaving the absence of the right word hanging in the silence. I even stopped talking to myself in complete sentences because I couldn't finish them. Going gluten free helped some, but didn't stop it altogether. I started to stutter and stumble over simple words, and it felt worse because I could hear the stutter start in my head before my lips and tongue actually created it.

Thankfully, the stuttering and verbal problems stopped altogether when I went gluten, corn, and soy free and my body had had a chance (about four weeks) to clear all the crap out. It just provides the extra incentive now to stay absolutely 100% with my diet. I was too scared by it not to do something right away, but I suspect if I'd kept eating gluten, I might have ended up where you are, unable to communicate on some days. (And yes, I'm familiar with the 'somewhat autistic' feeling. . .when I get severly glutened, you could be forgiven for thinking I am autistic)

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Well, gluten does cause brain damage in many people. You might want to read up on that, perhaps it'll inspire you to stay gluten-free. It can be permanent too, so this isn't something you want to flirt with thinking you'll get better later on, you might not.

The link in my siggy "The Gluten File" contains oodles of information about brain related issues. And then I just found this Dr's blog, The Renegade Neurologist and he has an article talking about some of the latest from a neurologist that studies the link between gluten and brain disease. http://renegadeneurologist.com/?p=11

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I have similar problems, and I just need to vent a little.

My job depends on my abilities to think critically, and respond immediately, articulately, and eloquently. How in the heck can I do that when my brain isn't functioning properly and my brain-mouth coordination is dismal, at best? I do trip over my tongue, can't think of the words I want, lose my train of thought completely and make a fool of myself regularly. Needless to say, my job is in jeopardy.

Some days are good, and I make lots of brownie points. But no one really understands why I can't consistently perform at that high level. Management assumes that if they see that once, they can expect to see it on command, but my healing has not yet reached the point where that is a reasonable assumption.

Thanks for letting me vent. Some days I really wish that my symptoms were mostly GI.

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Exactly how I feel Sillyboo, exactly.

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You may be mildly dyslexic. One of the symptoms can be difficulty recalling common words (like "fork"). When I'm tired I have a much harder time with words.

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    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.  Book a double appointment as we say in the UK (but that isn't always possible!)  I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by by celiac disease, another medical condition or just being a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
      Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.
    • celiac disease is psychosomatic
      I read a summary report a doctor wrote about me. I thought doctors were more knowledgeable about celiac disease these days, but I guess not. The doctor diagnosed me with psychosomatic disorder when I told her the symptoms (including anxiety since the intestines regulate this) I had from years of undiagnosed celiac disease that affected my ablity to function. Please let me know if you had any disabling symptoms. I have heard stories of how others felt like they were dying. I felt the same way. I didn't mention that I felt like I was dying to my doctor, though. I just can't believe she thought my symptoms from celiac disease were all in my head like celiac disease isn't a real disease.
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