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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.

Am I Going Crazy?
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Jen85    1

Hey everyone-

 

I am starting to feel like I am seriously going crazy? I have been diagnosed with celiac disease a year ago and after some struggle I  seem to be doing great with my gluten free diet now. It is so nice not to go through a day without feeling sick to my stomach anymore. BUT i am having some other issues and I'm hoping someone can give me some advice on if this has something to do with having celiac or if I'm going crazy. I am 27 years old I just got married we have three kids. My life is not overly stressful. I think I live a pretty happy life. But I will cry at the drop of a dime if someone looks at me wrong somedays? I am OVERLY emotional, I am starting to stutter when I speak to people I don't know or if I am nervous about something. I can remember things that happened 3 years ago but have a hard time remembering conversations i had 2 days ago and its getting progressively worse. I just feel like I am off and I can't explain it to anyone with out sounding like a mental case. Does anyone else suffer from any of these symptoms, Please Help

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bartfull    565

Have you had your vitamin levels checked? If you have deficiencies, that could be the problem. B12 in particular, can be a problem. Even if you eat right and take a multi, it's hard for us to absorb enough. They make sublingual tablets that really help.

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w8in4dave    75

Make sure they are Gluten free!! I bought some the other day. Looked just like the ones I had at home and pffttt they say Contains Wheat Pffttt !! So I have a friend I can give them to :) 

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Jen85    1

I take B12, K, D, calcium and Iron and they are all gluten free. It is getting so frustrating. I feel like I am in a constant fog. I am ready to quit my job. Not having a good memory is making it difficult to get my job done at this point. I am runnign to the bathroom multiple times a day to hide the fact that I am in tears. I was never like that before. My husband can send me a simple text that says I love you and I am tearing up. It is frustrating becasue after the fact I'm like that was really stupid and get mad that Im letting things get to me like this. And the stuttering is getting embarrassing I notice I am starting to become the Shy girl because of it. THAT IS NOT ME. I'm out going and loud and fun. What happened??? GRRRRR

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Pegleg84    50

For me, anxiety with no reason is always a sign that either I got glutened, or something else is off. It was one of my more serious symptoms before going gluten free. Thankfully, I only have a real "attack" maybe once a year or so. That's a big change from once a month and feeling iffy all the time.

Anyway, B12 definitely helps, and Vitamin D (especially in the winter), but get your levels checked out before supplementing, and talk to your doctor about the right dosage. We Celiacs tend to need a slightly higher dosage because we don't absorb things as easily, but also don't want to overdo it.

It's always a good idea to check around for hidden gluten, and, of course, maybe have a good talk with someone you trust to make sure there's nothing emotionally that could be contributing to it. I know what it feel like to be stressed/anxious about something in particular, and expecially what it's like to be anxious for no reason at all. There's a difference.

 

Anyway, no, you're not crazy. Look into what your body is missing/getting too much of, and hopefully it'll all straighten out.

Cheers

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Pegleg84    50

Sorry, Jen, I was typing at the same time.

It's also possible that you could be developing another intolerance. Are you having symptoms other than the anxiety and brain fog? As I said, check everywhere possible for hidden gluten, but also think about things like dairy, soy, etc. Anxiety SUCKS, and when you can't pin it to something it's even worse.

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Jen85    1

I will check around maybe I am missing something....The only symptoms I am experienceing right now. Is extreme fatigue which i have just grown to be used to, the crazy emotions, the stuttering and slurring speach, clumsy, the brain fog, and i guess i have been getting migranes lately just the past couple of days tho. You know it's one thing that i notice it but when my husband comes to me and says i think there is something wrong your emotions are a little out of control it really bothers me. He is the sweetest man and would do anything for me to make me feel better but he is worried which of course makes me even more emotional lol. UGH this is getting over whelming

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notme!    287

sounds like you are still getting gluten from somewhere?  maybe not every day, but just enough to keep you messed up.  before i was diagnosed, i would just fall down.  for no reason.  or just drop stuff, my muscles were out of my control.  and gluten makes me sad and crazy....... 

 

that being said:  sweetie, have you gone to the doctor in case you really do need some help?  i would look around and find somebody who understands that gluten can affect your nervous system.   how much "me" time do you get?  can you get some time alone when you feel down and maybe take a walk in the woods or something?  it sounds like you have a wonderful husband who loves you lots :)  so, maybe some ;);)  - you know, get some - can't hurt and it boosts all your good chemicals in your brain :) 

 

i hope you feel better ((((HUGS)))))

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cyclinglady    718

I'm adding my two cents -- I think you're getting a small amount of gluten.  How's your daughter doing?  Is she having symptoms too?  

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Jen85    1

sounds like you are still getting gluten from somewhere?  maybe not every day, but just enough to keep you messed up.  before i was diagnosed, i would just fall down.  for no reason.  or just drop stuff, my muscles were out of my control.  and gluten makes me sad and crazy....... 

 

that being said:  sweetie, have you gone to the doctor in case you really do need some help?  i would look around and find somebody who understands that gluten can affect your nervous system.   how much "me" time do you get?  can you get some time alone when you feel down and maybe take a walk in the woods or something?  it sounds like you have a wonderful husband who loves you lots :)  so, maybe some ;);)  - you know, get some - can't hurt and it boosts all your good chemicals in your brain :)

 

i hope you feel better ((((HUGS)))))

 

 

I haven't been to the doctors because my husband currently started a new job and we unfortuanately are waiting for insurance to kick in. When I get time alone is the worst because that's when I become a complete basket case lol. It is now hunting season so my husband is gone a little bit more and every other weekends  our kids go to their other parents so I am all alone every other saturday for most of the day which i thought would be great ...ummmm NO. I get upset with my husband about not spending time with me. I make plans and then back out on my friends because I am too tired or just don't feel like it. My husband spends pretty much all of his time outside of work with me except for this one day every other week. SO he deserves it. This is his hobby and its what makes him happy. Sometimes i feel like when I am all emotional it's like a complete out of body experience but then i'll snap out of it and be fine and happy and in a great mood. I really dont get it. I know i sound crazy when i talk about it but i don't feel crazy i just feel like there is something off and i cant figure out how to fix it.

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Jen85    1

I'm adding my two cents -- I think you're getting a small amount of gluten.  How's your daughter doing?  Is she having symptoms too?  

 

 

My daughter gets a lot of stomach aches and she has psorasis...but i had her blood work done and they found nothing. Now at my house pretty much every one eats gluten free with out realizing it because i do the cooking...unless they go and make themselves a sandwich or something. I do not make them eat gluten free but if they are eating what i am cooking its gluten free whether they realize it or not. But at her dad's its all kinds of bread and pasta and i feel that there is an issue there but my ex doesnt believe it but thats a whole other issue lol.

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bartfull    565

It could be something as simple as one of the family "double dipping" in the mayo or what have you, when they make a sandwich. They might not want to mention it because they don't think it would hurt, and "Mom's already emotional enough". Or it could be kissing your husband after he eats a sandwich. Or the kids after they have been eating gluten.

 

And psoriasis IS a symptom of celiac. I know. I have it, and after going gluten-free it went away. It comes back if I've been glutened.

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Jen85    1

It could be something as simple as one of the family "double dipping" in the mayo or what have you, when they make a sandwich. They might not want to mention it because they don't think it would hurt, and "Mom's already emotional enough". Or it could be kissing your husband after he eats a sandwich. Or the kids after they have been eating gluten.

 

And psoriasis IS a symptom of celiac. I know. I have it, and after going gluten-free it went away. It comes back if I've been glutened.

Well now i will have to investigate farther because whatever it is i need to find it and get rid of it. Thanks for all the advice. I have the psorasis too...i know she will eventually diagnosed with celiac but of course when the blood work came back negative her doctor and dad both just looked at me like i was crazy.

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notme!    287

I haven't been to the doctors because my husband currently started a new job and we unfortuanately are waiting for insurance to kick in. When I get time alone is the worst because that's when I become a complete basket case lol. It is now hunting season so my husband is gone a little bit more and every other weekends  our kids go to their other parents so I am all alone every other saturday for most of the day which i thought would be great ...ummmm NO. I get upset with my husband about not spending time with me. I make plans and then back out on my friends because I am too tired or just don't feel like it. My husband spends pretty much all of his time outside of work with me except for this one day every other week. SO he deserves it. This is his hobby and its what makes him happy. Sometimes i feel like when I am all emotional it's like a complete out of body experience but then i'll snap out of it and be fine and happy and in a great mood. I really dont get it. I know i sound crazy when i talk about it but i don't feel crazy i just feel like there is something off and i cant figure out how to fix it.

i likes my alone time - maybe because my house is like grand central.  i got a few things done this morning, but at 2 i go and pick up the grandkid, 2:20 my neighbor comes over to borrow a drill, which involves txtng husband (where is your drilll) climbing up in carriage house rafters to retrieve said drill, figuring out how to unlock the safety thingy, annnnd (this is the longest part) listening to her latest story about her youngest.  so then she leaves, and my sil arrives....... it's 330 and i am just now eating my lunch lolz

 

i am married to a hunter, too - for years YEARS! i would start a huge fight with him before he went hunting.  why?  i finally figured it out:  he spent sooooo much time and effort (and forethought!) getting ready.  i mean, this is a guy who can't decide what he wants for dinner and here he is, WEEKS beforehand, making lists and sub-lists, he does his own reloading so his bullets are *perfect* - FIVE DAYS before he is slated to go his bags are packed precisely.  drove me nuts but worse was it was a major stresser to our marriage.  we had a huge fight, a huge talk, and i was out of line.  you are right, he works hard and he deserves to go enjoy something he is obviously passionate about.  i was just jealous that he could feel that strongly about something that didn't involve me.  so, now we say a prayer (i still miss him because he gets zero cell service where he hunts) and every year he has been fortunate enough to get venison to fill the freezer.  i still do the wah poor me's, but i wait until he's gone LOLZ

 

and i feel for you about your daughter - at least you have a say because you're in a position of authority.  my grandson would probably benefit from a gluten free diet, but they had him tested (i don't even know what test :( ) and it came back negative.  so:  the end.  i can keep him gluten free when he is here because i have him during the week so they can work, but when he goes back to them he will be glutened and all is for naught. 

 

keep a food journal and write down everything that passes your lips!  even the kissing and such.  have you changed your shampoos/personal care items?  lip gloss and the like.   new cutting boards for the kitchen, wooden spoons, etc.  

 

i had a very hard time learning not to lick my fingers.......  <_<   dumbest thing ever.  but it was keeping me sick and i did it so absent mindedly that i hardly remembered doing it.

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notme!    287

oh, and hand sanitizer is not your friend - use soap & water.  that was a stumbling point for me, too.  hand sanitizer won't get rid of gluten, just makes it really germ-free gluten :)  you have to wash it off :)

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Pegleg84    50

Yep, it really does sound like something (likely gluten) is sneaking in somewhere. It just takes a tiny bit. Give your hub/kids a good lecture on keeping things gluten free (so mommy doesn't get more crazy! that's a good enough threat)

I'm going through a bit of a rough patch myself right now, just up and down, emotional out of the blue, nothing serious, but I put it down to a: something I ate, and b: change of season. Kind of depressing.

Anyway, aside from finding and eradicating the culprit, if being alone makes it worse, then you'll have to find a good distraction. Go for a walk, plan to do the shopping, go out for coffee, sit around with a good book or a good movie. I need my alone time, but sometimes getting out is the best thing.

I've been there, and you're not alone. But you'll get on top of it.

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anti-soprano    12

Dear Jen,

I sincerely hope these symptoms are merely being caused by gluten that is making it into your diet uninvited. However, if you don't find a source of CC quickly, please go directly to the doctor in case this has nothing at all to do with gluten. My husband has had some serious issues with his brain and I have seen many neurologists with him. Your list of symptoms (mood changes, speech difficulties, short term memory loss, trouble concentrating) are alarming to me. It's true that these things can occur with gluten exposure. In fact, one of my main symptoms is anxiety during a glutening. But not every health issue we encounter will be caused by gluten, although it will always be more likely. Please see a doc if you can't figure it out sooner rather than later.

All my best,

Shellie

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anti-soprano    12

Just reread another of your posts: slurred speech, clumsy, migraines. I don't mean to alarm you, but Please get to a doctor. Sirens are going off for me...

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IrishHeart    1,634

Slurred speech and migraines, brain fog and loss of motor coordination surely sounds like gluten ataxia to me.

 

If you already had those symptoms before diagnosis, it would make sense they are still lingering.

but increased symptoms mean something else may be going on (or possibly, you are not gluten free enough--meaning gluten is sneaking in somehow)  This is entirely possible living with gluten eaters who may not be very careful.

 

However, it may not just be low doses of CC, but rather, something else going on. 

You should see a doctor to be checked out when your insurance is in place.

 

You may have to lay the down the law about how food is prepared in your kitchen and that your area is safe from contamination, otherwide, this

may continue.

 

I know how bad this makes you feel because I lived it myself for 3 years before DX --and it is not fun at all.-- :( But if it is related to gluten exposure, these symptoms may very well resolve shortly. .

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anti-soprano    12

Slurred speech and migraines, brain fog and loss of motor coordination surely sounds like gluten ataxia to me.

 

If you already had those symptoms before diagnosis, it would make sense they are still lingering.

but increased symptoms mean something else may be going on (or possibly, you are not gluten free enough--meaning gluten is sneaking in somehow)  This is entirely possible living with gluten eaters who may not be very careful.

 

However, it may not just be low doses of CC, but rather, something else going on. 

You should see a doctor to be checked out when your insurance is in place.

 

You may have to lay the down the law about how food is prepared in your kitchen and that your area is safe from contamination, otherwide, this

may continue.

 

I know how bad this makes you feel because I lived it myself for 3 years before DX --and it is not fun at all.-- :( But if it is related to gluten exposure, these symptoms may very well resolve shortly. .

IH-

Thanks for tempering my alarmist reaction!  I agree that these symptoms are not as concerning if Jen has already experienced them as part of her gluten reaction.  It would worry me more if they are new and she did not have them as part of her reaction before going gluten free.

Shellie

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IrishHeart    1,634

IH-

Thanks for tempering my alarmist reaction!  I agree that these symptoms are not as concerning if Jen has already experienced them as part of her gluten reaction.  It would worry me more if they are new and she did not have them as part of her reaction before going gluten free.

Shellie

I did not think your reaction was alarmist in any way, hon :) Not at all! I think it made great  sense.

and I think we said just about the same thing, really. In any case, I think she may need a second opinion--not just ours--if it continues

(after she has gluten-proofed her kitchen one more time)

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ragtag    1

I'm currently struggling with a lot of the same issues: numbness, tingling, brain fog, feeling uncoordinated... feeling worse after being on the diet for almost 5 months. My last TTG test was negative, and my household is gluten free, so I suspect that my issues are not due to continued gluten exposure (at least not in quantities high enough to affect those antibodies). I'm currently looking for a neurologist that is versed in gluten issues. I found this on the U of C Celiac Center FAQ, and thought it might be of interest in this discussion:

 

http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-peripheral-neurological-symptoms-develop-after-being-a-on-a-gluten-free-diet-for-almost-a-year

 

Is it possible to have peripheral neurological symptoms develop after being a on a gluten free diet for almost a year?

Unfortunately, yes. Neurological signs/symptoms may appear even after the diet is started, and in some cases may not be influenced by the diet because they’ve been brewing in your body for quite a long time.

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GFinDC    609

Hi Jen,  I hope you feel better soon.  I suggest you do re-check everything for possible gluten cc.  But it may be time to look at other possible food intolerances also.  Things like soy, MSG, caffeine, food colorings etc.  Can you switch to an all whole foods diet for a while?  Leave out anything processed for a couple weeks and see if it helps.  A whole foods diet definitely won't hurt you, and may help.

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Pegleg84    50

yeah, if I was going to point at another food that could cause these problems, it would be soy. Soy makes me super brain-foggy and anxious. Not a good time.

But as Irish Heart said, if you didn't have these problems before gluten-free, and you're sure no gluten is getting in anywhere, best to talk to your doctor when you can and make sure nothing more serious is going on.

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