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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Brain Fog And Seeming Dementia....
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Hi, everybody,

Tonight, I am concerned about my brain with good reason. I started complaining to my doctors about 5 years ago that I was having problems pulling words out of my head, had horrible short term memory and long term memory that became increasingly worse. Over the last year, I would be talking and suddenly sound like a robot running out of juice, become incoherent and unable to recover my thinking for a short spell - very embarrassing. This, while trying to work in a leadership role.

Now, 3 months off work and into my new diet, it seems it has only gotten worse. I know I have made mistakes with my diet and am still learning all the ins and outs of protecting myself from CC, but I am becoming so concerned about my inability to carry on decent conversations. It seems I'll be singing along and out of nowhere, I get that same running out of juice pattern of speech, slurring my words and misusing words. It comes on so fast - like a light switch being flipped. About that time, I'll get a headache - like a vise grip on each side of my head. That is usually followed by the need to lie down and immediate sleep. Sometimes, the sides of my head will actually be sore to the touch. Like there is a problem at scalp level.

I'm having a hard time with this. I don't know if its related to some kind of dementia or, extreme fatigue and/or primarily a symptom of celiac disease that will get better. Are these symptoms what everyone is referring to when speaking of brain fog/fuzzy thinking? I'm worried that it's not going to go away and will instead get worse. I find myself avoiding ppl for this reason a lot, feeling I have to hide from these inadequacies. I feel Alzheimer's bound, often confused and incapable of following/keeping with a thought pattern.

For instance, the other day, I gave my toaster away to a neighbor, walked it over and handed to her. We stood and talked for a few minutes and then, in closing, I totally forgot I had given it to her and commented that I would find someone else to give it to. For some reason, I was thinking she didn't want it and forgot she already had it.

Is this what others go through? Does it get better? Are there tests I should be asking for to check brain function? I go to the doctor tomorrow and want to bring this up, but am afraid I'll sound half crazy.

Any help, comments, clarifications of neuro symptoms, stories of having similar experiences or, suggestions would be much appreciated.

Thanks.

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This was one of the worst problems I had before diagnosis. I was very fearful that I would never get better. I had gotten to the point where I couldn't even read and just trying to get the words out to tell someone to get something for me was impossible. I was a chef and had to tell people what to pull for orders. By the time I could find the words I could get the item myself 3 times. I had times when I would sit in my car with the key in my hand and not know what to do with it. It was very, very scarey and had even more impact on my life than the constant D and all the other pain.

It did take a long time to resolve but it did get better. Adding sublingual B12 seemed to help speed the healing along but it did not improve quickly. Be patient, be extremely strict with the diet and make sure you are taking some supplements. Hopefully this will improve for you also. My comeplete recovery from this was measured in years not months but things did improve steadily. I have now recovered enough to be back in college and earning A's. Hang in there.

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This was one of the worst problems I had before diagnosis. I was very fearful that I would never get better. I had gotten to the point where I couldn't even read and just trying to get the words out to tell someone to get something for me was impossible. I was a chef and had to tell people what to pull for orders. By the time I could find the words I could get the item myself 3 times. I had times when I would sit in my car with the key in my hand and not know what to do with it. It was very, very scarey and had even more impact on my life than the constant D and all the other pain.

It did take a long time to resolve but it did get better. Adding sublingual B12 seemed to help speed the healing along but it did not improve quickly. Be patient, be extremely strict with the diet and make sure you are taking some supplements. Hopefully this will improve for you also. My comeplete recovery from this was measured in years not months but things did improve steadily. I have now recovered enough to be back in college and earning A's. Hang in there.

Absolutely! I haven't had the headaches you describe, though. But, I've been worried about the same issue. Taking wrong turns when driving to regular places...I know I'm preoccupied, but geeeezzzz!

I'm going for food allergy testing this Saturday because though I'm gluten free, i'm still experiencing what could be considered more of an allergy-type symptom(s) (runny nose, sneezing, inside mouth sore).

As hard as we try to go totally gluten free in the beginning, we do make mistakes. But, I was wondering if before these headaches come on, and you're sure you haven't had any gluten, could it be another food allergy? Like, I've known I'm allergic to melons for years now and steered away from them. But, since being gluten free, I bought a watermelon, and the very same symptoms and even more, showed up.

Just a thought.

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What you describe, the fog, forgetting what I was going to say or unable to find words and all the rest has been a part of my life, too. Part of the problem has been stiffness in the muscles of my neck which hindered the blood flow to my brain so I have learned to relax and strengthen those muscles by massage and exercises. Whenever I'm exposed to certain chemicals my neck muscles immediately become tightened because (so a chiropractor told me) it is instinctive to jerk the head back as if to avoid the chemical. I react to perfumes, motor oil, gasoline and any organic solvent, glossy magazine covers, new furniture and rugs, rug cleaners and deoderizers, chlorine, many cleaning solutions, auto and motor exhaust and more. I have read about other causes - and there are both medical and alternative remedies for having a buildup of toxins and pollutants in the body, improving both liver and kidney function helps, making sure out bodies are slightly alkaline rather than acid, treating various intestinal bacteria, yeasts and parasites which produce toxins which are adsorbed into the body.

This morning I was reading some of the information at 'The Gluten Syndrome' website and saw that there is a section on why some people feel worse when they go gluten free.

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You need a neurology workup, and to be checked for vitamin deficiencies. To be honest, that sudden onset of confusion and headache with a strong need to sleep afterwords sounds a little like a mild seizure. When I'm brain fogged, I like to make a list all the details of a health problem to take in to the doctor so I don't forget anything and he/she gets a clear picture. If your doctor isn't sure, I'd suggest pushing really hard to see a neurologist.

Gluten can cause a lot of things. Sometimes it's helpful to get symptomatic treatment while you're healing and obviously you want to be sure nothing else is going on.

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Oh hon, have I been there.

My ex husband would get so exasperated with me because he swore I would talk in circles and backwards. I could understand what I was saying but no one else could. Sometimes I would pick a fork up and forget what it was used for. The same thing with a remote. I got really scared when I forgot which direction to go to work, which was just 5 miles from my house. Thankfully that wasn't all the time. It would come and go in spurts. But once i went gluten free I haven't had any of those problems except when I get severely glutened.

Keeping you in my prayers. Hope you get to feeling better.

Vicky

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Just wanted to say that, even if it is some brain damage from the gluten, you can still recover from it.

You haven't been on the diet very long yet, and you also may be having some hidden cross contamination issues. Stick with it. Eat as well as you can, re proteins, vegetables, and good fats, and be sure to take those gluten free multivitamins (B complex and vitamin D very important) and Calcium/magnesium mineral supplements. And exercise. Yoga and stretching and quiet exercise is both calming and very good for you, as is just walking or other fun sports. The more nutrients and bloodflow you can get to the brain, the better it will heal and function.

I still lag in verbal skills compared to written, but this has been lifelong and I doubt it's going away now.... especially when I've gotten to the age where the stereotype is that you don't know whether you're coming or going :rolleyes:

I was having some very strange neuro/eye symptoms years ago, and my optician, of all people, finally was able to track it down to a reaction to an over the counter antacid medication I was taking at the time, which people can react to.

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Ditto here with the brain fog. I've always felt like I was borderline autistic my whole life. just something not right with me, being contantly on edge and anxious, I can't think of a period In my life when I wasn't having anxiety fueled melt downs. @4 years ago, before I found out the half truth that I had a wheat 'allergy',( actually celiac and dermatitas herpetiformis) I was getting so frustrated with myself and my life, I just knew that there was something drastically wrong with me, other peoples lives were moving forward and I felt like I was just stuck in neutral; I actually wound up in the mental hospital once, where they told me that there was nothing wrong with me!

Although I feel like I'm above average in intelligence,And have excellent long term memory, I've always been prone to mental lapses and mistakes;

having been super strict gluten and casien free now for @8 months, and have been avoiding CC like it's the plague, my neuro symptoms have gotten better on the whole, but the brain fog has actually gotten worse, or at least I've had episodes that were the most severe and alarming so far; like totally misreading words, seeing a totally different word than the one written. Before , I would maybe just misread one letter.

I've learned to go through every thing I do a hundred times in my head so I can just function at all

it's slowly been getting better, though; I geuss all I can do is supplementing and staying strict about risking it w CC

the book "The Gluten Effect" talks about how the reaction to gluten actually reduces your blood flow, so that when you are healing, the blood flow to your brain increases, which your system is not accustomed to it, so it actually causes damage, even though it is a good thing.However, this only happens temporarily as your system adjusts to the increased blood flow. Maybe this phenomonon can have something to do with brain fog getting worse after going gluten free?

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Thanks, everyone. Sorry it took me so long to get back to you. For the most part, I've been asleep! My goodness! I do believe I'm taking the long road to recovery here. My headaches have gone away, but the brain fog still a constant. That said, I'll take whatever improvement I can get! And, I do feel some improvement and for now, I'll take your word that the rest will be forthcoming. Thanks, again. All interesting replies.

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I'm so glad you wrote because I have had many of the same symptoms--especially the headache.

I'd get the pain on the sides of my head--near the top at scalp level--and when I touched those spots they were sore! I had those headaches daily for a while--once for a whole week. They're better now, but after being gluten free for three weeks, I occassionally get them. And sometimes, very quickly after eating gluten by mistake.

I can also relate to the fuzzy brain thing----mine was so bad over the years, it's a wonder I'm not dead! Especially combined with fatigue---I'd have some very bad days. My memory is still fuzzy, but the brain fog---the kind that was so bad you'd wonder why the whole room wasn't foggy too--has improved, although not completely resolved.

Remember too, that you are eating differently now, and I notice I am probably not eating perfectly well, which can also cause foggy thinking. Give yourself time to adjust. I know how scary it can be, so remember this is a process. It will take time to figure it all out, to get on the right path, and figure out what else may need to be done down the road or eliminated.

I'm here for you if you have any more questions!

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I know how you feel!!

I also have sore temples and the top of my head hurts and I get a "squeezing" like a vise grip on my head. It has gotten a little better, but I also have neck and jaw pain, so those may be contributing to the problem.

As for the Brain Vaseline? It scared the crap out of me.

I have been to all the specialists. My brain is "normal" on an MRI. Neurologists say I am "fine"; I am "psychologically sound", ( :lol: so says a psychologist, yet I had this strange feeling like I was sleep- walking in my own life. I felt I was going "mad". I would do things, but later wondered HOW I did them. I felt like I was high or something. I felt like things were on slow-mo or shutter speed. I became sad, anxious and felt "dark" because I did not know what was happening to me. I felt as if a curtain was pulled down every afternoon (likely after my "HEALTHY" Whole Wheat bread :angry: sandwich!)... I am normally a very happy, vivacious, chatty person so this weirdness was beyond frightening!!

I kept saying to my husband, I feel "surreal"...It came on slowly, starting in 2007 "off and on"...and by 2009, I was in real trouble. I recall writing in my journal in April '07, after a violent stomach virus..."I keep forgetting things and it's scaring me"...little did I know it was the "triggering" of 3 years of horror.

It does feel a bit like being drunk, but without the fun. I told my sister I felt as if someone were poisoning me. (I was right, in a sense) I had it so bad at one point, I felt as if I were living in a bad dream inside my own life. I would walk into the kitchen to make dinner and have to THINK about what the heck I was doing in there!! It made me frustrated and I would actually burst into tears because I couldn't handle more than one pot on a burner on the stove. (I am a gourmet cook, for pete's sake!) Thinking about what to make for meals made me feel overwhelmed and anxious. Forget doing the bills--took all of my concentration and I made mistakes all the time. If someone were giving me NEW information, I had to write it all down. This was very upsetting to me. My short term memory suffered. (I am the trivial pursuit queen, so imagine my concern when I couldn't recall simple things)

I had to stop reading because I couldn't concentrate or retain what I had just read( This is my passion; I would read 3 books at a time!) I had trouble articulating and had to search for words (I was an English Prof. who spoke in front of large lecture halls without notes!) What was going on??

Obviously, this brain fog affected my whole life!

Often, I would have to hold on to my husband's sleeve when I went out in public. (I have never been shy or afraid of anything in my whole life! I performed in plays and danced in front of many people and now, I was too scared to do anything by myself because I felt "peculiar"--how nuts is that??)

I kept saying "I don't feel like ME anymore". I developed anxiety so bad, I was shaking and would actually cry when he left me alone at home. I was so physically ill --losing 90 lbs. rapidly, my hair falling out, developing burning chronic pain--and to lose my brain function too, was more than I could bear. I thought "I'm going to die before someone figures out what's wrong with me."

I would sometimes walk sideways.

I would cry like a child because I was frustrated and terrified.

I had to stop driving. That really did me in.

My doctor recommended a psychiatrist!!. The psychiatrist, sensing I was not really mentally ill, when I kept insisting "I don't have anything to be anxious about; something is making me ill", asked me finally... "Do you have food intolerances, by any chance?" (she has them herself)...that's when I started researching, which was very difficult as I had to read things over and over again. I repeated myself while talking and in my writing....I KNEW I was doing it, yet couldn't seem to stop it. My first MIL had Alzheimer's so I knew it wasn't quite that---I thought maybe a brain tumor. I demanded an MRI (Nothing in there-- <_< )

I would ask my family members and friends..."Am I making sense? I feel like I am not speaking properly." They assured me I was...but I felt so weird. I lost track of what day it was. I barely recall most of 2009.

I just kept reading and often, my google searches led me HERE! :)

I felt as if my brain were dipped in vaseline. I felt like I was hallucinating sometimes and I was awake half the night for a year and a half because of bizarre dreams. Looking back, 2009-2010 was very difficult and frightening sometimes.

BUT...it has gotten sooo much better in just a few months since going gluten free! :D :D :D I am so happy to see that I can walk, talk and write again without fear that I will fall, bang into something, or make a fool of myself, fumbling for words. I have a long way to go and bunch of other symptoms to resolve, but having THIS BRAIN FOG clearing gives me great hope!!

I KNOW when I am accidentally glutened because the first thing that I notice is....that familiar strange sensation of "fog" rolling in...... and my mood drops like a stone. That's proof enough for me.

I will never eat gluten again because for the first time in three years, I am starting to feel "like me" again.

Hang in there, kiddo---these guys tell me it clears, and I believe them. ;)

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