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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Depression

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Hi all, I hope I am doing this post correctly :o - I have been reading the posts on sleep and drinking. I have been a die hard white wine drinker for sometime, and I can admit that I rely on it to calm me down so I can relax and let my brain and body take a break. I am not saying this is a healthy way to take care of the problem, but for me it works. You are right about the blood sugar levels dropping if you over due it, and it can take days to get out of your system. Anyway, I had another question for all of you. I have been gluten-free since April of 05, for the first several months I was pretty much on top of the world, my tummy didn't hurt, I wasn't frantically keeping track of where the closest rest room was AND I started to drop a couple of pounds and feel less bloated. All good stuff! That is all changing for me now. I have read that celiac disease is associated with mood swings and fatique, but I can't find the way around them. Has anyone else had this problem?

Denice

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I have been gluten-free since April of 05, for the first several months I was pretty much on top of the world, my tummy didn't hurt, I wasn't frantically keeping track of where the closest rest room was AND I started to drop a couple of pounds and feel less bloated.  All good stuff!  That is all changing for me now.  I have read that celiac disease is associated with mood swings and fatique, but I can't find the way around them.  Has anyone else had this problem?

Denice

<{POST_SNAPBACK}>

When I've been glutened, the depression and rage really show up. Then I have to just tough it out for 12 to 24 hours before I feel emotionally more stable. Are you being glutened from some source? When did your mood swings and fatigue come in? The fatigue is a definite sign of ingesting gluten. How long were you sick before going gluten-free? The healing time is different for everyone, so maybe you aren't as far along with your healing as you thought you were.

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When I've been glutened, the depression and rage really show up.  Then I have to just tough it out for 12 to 24 hours before I feel emotionally more stable.  Are you being glutened from some source?  When did your mood swings and fatigue come in?  The fatigue is a definite sign of ingesting gluten.  How long were you sick before going gluten-free?  The healing time is different for everyone, so maybe you aren't as far along with your healing as you thought you were.

<{POST_SNAPBACK}>

The bbest we can figure out is that is was a min of 6 years, but more likely 10+, they just told me I had IBS and to treat it with amoniam AD. Since finding out it was celiac disease, I feel like I have been pretty failthful. I do keep finding "stufff" that shocked me had gluten in them, my cream rinse for one. The mood swings and fatique showed up about 6 or so weeks ago. My medical doc just wants me to get into counseling, and I am willing to give that a try - just thought if somewhere out there one of you of a better solution. I would listen up

Thanks, Denice

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Guest BERNESES

Denice- I have suffered from depression since my early twenties (convinced the onset had something to do with being undiagnosed Celiac) and when I first went gluten-free in February, about 3 weeks in, I started having unbelievable mood swings and I realized it was happening when I was ingesting gluten so I got really strict (I still had so much to learn at this point) and it calmed down until about June. Then again, I realized I was becoming MUCH more sensitive to even tiny amounts of gluten than I ever thought possible and they started again.

I am on medication for it (depression), but when I get glutened, even increasing the medication doesn't help. I just take something to help me sleep and hope that I wake up feeling better the next day. At first, i was confused but now that I know that it's gluten, I can remind myself it will pass. That doesn't always work either though.

Therapy has actually helped me tremendously- I've been able (most of the time) to step back, look at the reason for my moods and more often than not, realize that food=mood. But it's been really good to hjave a professional to talk to. Hang in there, B

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Denice- I have suffered from depression since my early twenties (convinced the onset had something to do with being undiagnosed Celiac) and when I first went gluten-free in February, about 3 weeks in, I started having unbelievable mood swings and I realized it was happening when I was ingesting gluten so I got really strict (I still had so much to learn at this point) and it calmed down until about June. Then again, I realized I was becoming MUCH more sensitive to even tiny amounts of gluten than I ever thought possible and they started again.

I am on medication for it (depression), but when I get glutened, even increasing the medication doesn't help. I just take something to help me sleep and hope that I wake up feeling better the next day. At first, i was confused but now that I know that it's gluten, I can remind myself it will pass. That doesn't always work either though.

Therapy has actually helped me tremendously- I've been able (most of the time) to step back, look at the reason for my moods and more often than not, realize that food=mood. But it's been really good to hjave a professional to talk to. Hang in there, B

<{POST_SNAPBACK}>

Thanks B,

I do think having someone to talk to will help - just reading these different posts helps when I am feeling "down"!!! I also and started to believe that I need to increase my carbs and that might help. Anyway, I am going to keep plugging away! Thanks to all who answered, and an especial thanks to everyone who posts their knowledge and experiences on the message boards!

:rolleyes:

Denice

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Hi Denice,

I feel in a similar position as you, I've been gluten-free for a couple of months, but it isn't really helping with my mood swings. I feel like I'm being really careful with what I eat, but it doesn't seem to help. I've been struggling with depression for the last eight years (I'm 26) and was hoping that a gluten-free diet would really help. My physical symptoms are a lot better, but not my emotional ones. I guess it can take quite a while to recover, so maybe that's it. I'm in therapy and that does help, and I've been on antidepressants in the past - I just don't want to go there again. Recently I've had these fits of anger - which is so out of character for me - usually I just cry. Oh well, roller-coaster! I'll wait and see!

Mariah

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I've been strict gluten-free since 2/2004 and I notice (looking back) a slight depression since being diagnosed. It 's better now, for the most part, but it definitely took approx. 3 mo. to clear the worst of it. I haven't noticed any correlation between mood swings and gluten. I'll have to pay closer attention to this. I attribute my mild depression to the major life change that I have made this year with becoming gluten-free. It's altered every aspect of my life. Now that I'm coming up on one year gluten-free, I'm doing a lot better with the whole thing.

--Kelly Langenfeld

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I went through a period of severe depression after going gluten-free. My life was falling apart at the time also. It was probably a combination of the diet change and life events. However things did get better, much better. It does take time but it is worth it to stick to the diet.

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I went through a period of severe depression after going gluten-free. My life was falling apart at the time also. It was probably a combination of the diet change and life events. However things did get better, much better. It does take time but it is worth it to stick to the diet.

Hello All! :unsure:

I've been gluten free now for a little over 4 weeks, and I check everything, from food, to hair and beauty products, to laundry detergent.

I feel even Worse that I did before, after I went totally gluten free. I keep telling myself that in time I will feel better, but it really worries me. I'm really teary, and really odd things will make me teary! The holiday season has only made it worse, of course. I keep hearing stories from here on how people's depression and mood's have miraculously changed, and I just wonder, if that will ever happen to me. I do realize I'm just a little over 4 weeks into the process, and that I need to be more patient, so I try to be.

Depression ran in my family.

I guess I'm wondering if someone who has has an on-going problem with depression going to benefit emotionally from going gluten free? I'm going gluten free no matter what, my health and future are just too important, but I was just wondering if people who have been diagnosed with depression, do we have any hope of ever feeling better and maybe one day lowering if not eliminating the drugs we take for anti-depressants?

Anyone's comments would be appreciated--Kim07

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Denice,

THe same thing happened to me. I was so happy to feel better emotionally and physically once going gluten free 7 months ago. I felt great for like 4 months or more. THen all of the sudden I think I must have become more sensitive to gluten and wasn't being careful enough maybe when cooking for the rest of my family. Also was in my shampoo and I tried eating McCann's oats, which I think I must have been getting some there. I started feeling VERY fatigued, depressed, nausea on and off and return of IBS symptoms. I guess maybe the only thing I can figure is that as we get further away from going off gluten, that our bodies become ultra sensitive. I hate it that I have to analzye all of this and it consumes my life. I am happy to have at least figured out that the gluten is what causes the severe fatigue, mild depression and moodiness. Mainly depressed during that time, because I feel so rotten after getting gluttened.

SO, I guess we just need to be very careful and hope that as time goes on we will get better again.

Monica

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I've never been DX with depression, but before being gluten-free, I suffered from anxiety, panic attacks (infrequent), and depression. After about 4 months gluten-free, I felt a lot better--the anxiety was pretty much gone and I would wake up feeling more positive. I have not had an anxiety attack since I cut out the gluten. If I am glutened, I immediately begin to feel anxious again. I'm also more sensitive to gluten the longer I'm off of it. I understand that's a fairly common reaction.

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Hang in there Kim. I was really an emotional train wreck (on the inside) after my initial diagnosis and going gluten-free, much worse emotionally than prior to my dx. It progressively got better for me. As far as prexisting depression, perhaps that was gluten related and perhaps not. It's tough to try and speculate if this will improve to the point that you will no longer feel the need for antidepressants. The longstanding effects of going gluten-free for me is that I'm no longer constantly perculating, and that I'm no longer so bloated that I feel like "this is what it must feel like to be pregnant". I haven't noticed any longstanding emotional effects from going gluten-free, but depression and anxiety are certainly shown to be side effects of being glutened. Hang in there and have faith that things will improve. Things will definitely be easier for you after the holiday passes.

--Kelly Langenfeld

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Guest kim07
Hang in there Kim. I was really an emotional train wreck (on the inside) after my initial diagnosis and going gluten-free, much worse emotionally than prior to my dx. It progressively got better for me. As far as prexisting depression, perhaps that was gluten related and perhaps not. It's tough to try and speculate if this will improve to the point that you will no longer feel the need for antidepressants. The longstanding effects of going gluten-free for me is that I'm no longer constantly perculating, and that I'm no longer so bloated that I feel like "this is what it must feel like to be pregnant". I haven't noticed any longstanding emotional effects from going gluten-free, but depression and anxiety are certainly shown to be side effects of being glutened. Hang in there and have faith that things will improve. Things will definitely be easier for you after the holiday passes.

--Kelly Langenfeld

Dear Kelly,

Thank you for your kind words and wisdom. I just need to learn to have more patience with myself, during the first stages of being totally gluten free, its very possible my depression could get worse. But with my health slowly improving, I'm hoping in time my whole outlook on life will eventually improve. I know your right when you say, I might never be able to give up my anti-depressants, but at least I'm on the road of recovery from this disease, and hopefully I will be able to feel some benefits from that at some point.

I need to work on my patience, I've only been gluten free for 4 weeks now,

Anyway, thank you for responding,

Merry Christmas!!! And Happy New Year!!

Kim 07

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Guest BERNESES

Kim- hang in there! It's a huge adjustment (I'm actually just starting to realize how huge). I've been gluten-free for 10 months now (except for a ten day gluten challenge) and I am ultra-sensitive bto minute amounts of gluten. It clearly affects my mood. I think you go through a lot emotionally (and physically) when you go gluten-free. I think I was also under the impression that it would heal everything and that may not be the case. But, little by little, you get better every day. You may not notice it, but others do. my hubby tells me all the time. Happy Holidays! This is my first gluten free holiday season too.

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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