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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.

For Long-time Strict Gfers With Depression/anxiety
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23 posts in this topic

A woman in our local support group was diagnosed at the Mayo Clinic and was told that it would take her 18 months strict gluten free before her mental symptoms would resolve. She said she got some better before 12 months but that it did seem to take her a good year and a half before she felt her old, pre-symptom self.

I'm asking this because I'm 7 months out gluten-free and 6 weeks casein-free without much mental improvement. My GI symptoms were much better within a few weeks gluten-free, but there's no change with mental symptoms.

Am looking for some hope!

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In my case, they were right about on target.

It took me about 18 months to finally get a handle on my anxiety and to a lesser extent, depression.

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In my case, they were right about on target.

It took me about 18 months to finally get a handle on my anxiety and to a lesser extent, depression.

Thank you! In the middle of waiting, with depression and anxiety as symptoms, some days I can't see the light ahead. I feel like I've worked so hard for so little at this point. I'm glad gut symptoms are better, but I'd happily take back the Big D (got better within a couple of weeks) in exchange for the head stuff.

Your feedback is encouraging.

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Thank you! In the middle of waiting, with depression and anxiety as symptoms, some days I can't see the light ahead. I feel like I've worked so hard for so little at this point. I'm glad gut symptoms are better, but I'd happily take back the Big D (got better within a couple of weeks) in exchange for the head stuff.

Your feedback is encouraging.

I honestly felt the same way as you do at that point in my recovery. I'm glad that you are feeling encouraged, and I hope that yours resolves even sooner! :)

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Hi Laurie, sorry you're in such a pit....

My recovery was much shorter - but came in fits and starts. I did really well for a few months, then plummetted, then better, then plummetted deeply last summer....and now, I do have my moments, but seem to be holding steady. January of this year was one year gluten-free. :) And I absolutely know what you're saying about exchanging the D for some mental rest - - - the stomach stuff was easy compared to the depression.

I am wondering, are you eating any processed foods? things w/ MSG, hyrolyzed proteins, hydrogenated oils? because I have cut out almost all but the purest foods. When I lapsed over teh summer, and went into the pit, my eating was becoming very sloppy and more processed. Just a thought.

Hang in there, I absolutely do think you'll get better.

Blessings -

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I was 'lucky' the depression lifted fairly quickly for me. Within a couple of months my periods of depression and anxiety were gone unless I was glutened. I should mention that my depression was off and on. It seemed to be more like bi-polar (actually a prediagnosis diagnosis until they decided it was seizures), I was either full of energy and lots of plans or so depressed and anxious I could barely get out of bed. I find now that depression hits me about 24 hours after I injest and leaves just as suddenly about a day after it comes with anxiety hanging on a bit longer.

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It's tough for me to say exactly why my depression and anxiety stopped when they did (there were a lot of really stressful, awful things going on in my life for a while), but I definitely felt like a completely different person at around 10 months.

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Thanks for the responses and encouragement ...sorry I'm late acknowledging them (my hard drive crashed and I just got my 'puter back yesterday).

I can't begin to tell you how much it means to come here and find that others persevered and finally found recovery. This place is a haven from frustration!

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A woman in our local support group was diagnosed at the Mayo Clinic and was told that it would take her 18 months strict gluten free before her mental symptoms would resolve. She said she got some better before 12 months but that it did seem to take her a good year and a half before she felt her old, pre-symptom self.

I'm asking this because I'm 7 months out gluten-free and 6 weeks casein-free without much mental improvement. My GI symptoms were much better within a few weeks gluten-free, but there's no change with mental symptoms.

Am looking for some hope!

I am going through the same thing. I get anxiety/nervousness symptoms that really began after the first few weeks of being gluten-free. I guess my body really "misses" that stuff. I am getting better - I can function at work now, despite the anxiety, but I also cannot WAIT until that glorious day when the mental stuff lifts away and we are back to normal. It definitely is a process...I also lost a lot of weight after going gluten free and found that I had other food sensitivities/allergies in addition to the gluten, that may have contributed to the anxiety/nervousness. When your immune system is constantly on the "alert" mode, it's going to cause anxiety. I have had to take on tai chi and meditation to manage the anxiety... and even some anti-anxiety DVDs. I wish there was a booklet that explained the mental health changes that accompany dietary and allergy discoveries so that we would not have to see this in isolation, but just what it is... a body-transforming process that affects the mind.

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Oh thank the Gods. I thought it was me. Eighteen months? Then I have - pulls out fingers and toes - NO, SEVEN MORE MONTHS? That's a long time. Every time I feel the anxiety or depression I start trying to figure out if I glutened myself somehow. So perhaps that's not the case.

With regards to feeling like my pre-Celiac self, I don't think I know what that will feel like. I don't remember really what it feels like to not have the depression off and on and the anxiety. It's gotten much better in the last eleven months, but I had kind of accepted that this was as good as it got. So maybe not, maybe it gets better? That would be nice.

Violet

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ugh, so I also have about 7 months to go? :unsure: well not completely gluten free though because I had a few unfortunate glutenings that of course were not intentional, but let me tell you I would have the worst anxiety when i got glutened. Now I'm on Clonazepam for panic attacks and in like a month I'm going to see a psychologist I am happy about that though and have good expectations that it might help a bit. but im so tired of being depressed, its been so many years and anxiety too of course, now its better than it used to be a year ago before i got diagnosed but still my mood swings up and down so much even my family talks about it, one minute i'll be so energetic and happy and the next i'll be pissed off or completely depressed to the point i want to give it all up, and today is one of these days... i just want to cry and go to sleep just for no reason, ugh... :(

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With regards to feeling like my pre-Celiac self, I don't think I know what that will feel like. I don't remember really what it feels like to not have the depression off and on and the anxiety.

VioletBlue,

I feel that way too. As a child my friends called me moody. I have been dealing with this for 22 years!!! I don't really know who I am entirely without out being poisoned. I guess time will tell. I'm okay with it as long as it keeps getting better. I have only been gluten free for 7 weeks, but I can already tell the difference during my pms time. I am more emotionally stable then then I use to be. The one time I think I got glutened off hershey kisses and hershey hugs and kisses, it was horrible. My worst symptom was my mood. It was a nightmare. But then it passed after 2 days.

P.S. I LOVE the name Violet. That was to be my son's name if he was a girl.

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Try cutting out more foods. I cut out gluten, dairy, etc, and still felt horrible. I had to resort to only eating veggies, rice, and white meat and my symptoms went away within a day.

It takes a while for your intestines to be able to handle certain foods, so that may be why it takes so long for some people. If I ate beans right now, I'd get horribly depressed and tired, just not as severe as when I eat gluten.

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A couple simple things that have helped me, on top of all the other good suggestions: taking a vitamin B complex, and eating food rich in good fats. Think sardines, leafy green veg, cold pressed rape seed oil (better ratio of the different fats than olive oil), avocados... a favourite of mine is making a salad with all of the above, so a green salad with sardines and avocado and a lemon juice and rape seed oil dressing.

Pauliina

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I'm not too sure of the responses on this thread.

I don't see why it would take 18 months for the intestinal tract to heal.

Are we saying that the serotonin-making cells take 18 months to re-establish themselves in the gut, so that they can then begin to start making serotonin again?

Its been awhile now since I posted. I was off gluten for a long time.... then one pizza party night I gave in and ate like 10 slices of deep dish pizza. I had no problems.

I then started playing with it again and found I did start getting symptoms again...but I find its complicated. I don't know if I've been healing and thats why I'm getting less symptoms, or if there is more to it.

I was reading Psychology Today today (older issue) and it was talking about how inflammation in the body is picked up in the mind, and the body goes into depressive and anti-social crawl-in-a-cave-mode in order to heal itself from the sickness.

I get this when I eat gluten... seems I can tolerate a bit of gluten...but if I go over my limit, it seems my intestines start inflamming...and then I get that "sickness behavior"... because I need to heal. I had this for at least 15 years constantly...caused so many issues with my life. Extreme depression etc.

For instance the other day I was having really suicidal thoughts... Because I had been eating too much gluten again...

I think part of the problem with gluten is related to how gluey it is... It seems to really get stuck in the digestive tract....and its this paralysis that causes lots of issues.

All this learning about gluten, and paying attention to my intestines...has made me realize how I "feel" is directly related to the status of my intestinal tract. If i feel bad, I literally -AM- bad. To me I can then logically realize that my intestinal tract is probably dry, has food stuck to it, needs to be cleaned out, etc.... or if I feel like -poop- (there is a difference usually)...that usually means I have even MORE food stuck in my tract... literally I feel like poop because i AM full of poop. lol... ever say a person is full of poop? They probably are..!

I think since we have stress coming at us multiple times a day, we are constantly getting our digestive systems shut down... so we end up having food getting stuck alot in our tracts fermenting, etc etc... David Wolfe says the problem with America today is we have too much constipation and not enough sex...lol...

Think about it... we eat so much stuffy foods all day long, and then get bombarded by stress all day long... so we just are constipated...

Anyway, so now I know what to do with my stomach... if I feel bad... that means I usually drink a diluted hot tea...or just a few glasses of water. That helps push the digestive tract to keep moving...and moistens the food and tract itself. Smoking a cigarette also helps push it along. Going for a walk helps push it along.

I also make a decision if I just need to eat less food for a good half of the day...or maybe to just drink water and have some fibrous vegetables for 4 or 5 hours. Anything to help clean out or get the digestive tract moving or both.

Too much caffeine for me causes my digestive tract to quiver too much. it gets the job done but I don't need that much. Tuning into how my digestive tract works has allowed me to once again use caffeine...but this time for the purpose its good for...keeping the tract moving. I've had to shy away from it before for a long time since I thought it caused me anxiety. But now I realize its only because my tract was sensitive to it and didn't need that much. Again, too much makes the tract quiver too much and my mind picks up on that as anxiety. I usually drink tea... just diluted.

Then again, I bet if you had a really stuck constipated digestive tract you could tolerate more caffeine because you had more to clean out. Maybe thats why the Italians drink espresso shots morning noon and night...its all that highly glutenous wheat they eat constantly...

I still think that gluten probably does cause a inflammatory reaction in me...it does seem to be different than just having too much food in my tract.... But there does seem to be a certain amount I can eat before it causes a reaction... although I'm not going to test this out...

I think next time I eat gluten I will have a few donuts and then see how my days go for a week...

But now I wonder if I will start feeling better as the months go by? I really felt good when I was on Paxil 4 years ago. I've taken it several times in my life and those were the best times of my life for the last 15 years. I've taken it a total of 2 years probably. I stopped taking it because I never wanted to be dependent on that stuff...and then only 3 months ago really stumbled onto this gluten thing...

So I wonder.... will I ever be able to just feel as good as I did when taking Paxil? Do I just need to give it more time still for my digestive tract to fully heal? For my villi to fully heal? For the leaky gut to heal (if I have that?)...for the serotonin making cells to re-establish themselves? How long would this take?

Just some thoughts and questions I've been having the past few months as I've gone about my daily life and observed different things.

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As soon as I got my cholesterol up I feel better. My cholesterol was 98 due to malapsorption, now I still have to struggle to keep it about 150. Low cholesterol has been linked with depression, suicide-but there is an incredible amount of controversy about this so all I can really go on is my own personal experience.

For every study like this

http://news.bbc.co.uk/2/hi/health/352216.stm

There is another study (generally funded by the cholesterol lowering drug manufacturers) refuting it.

So I strongly second aikiducky's good fats recomendation! :)

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Many have found by doing SCD or Paleo type diets and dropping virtually all carbs and sugar and just eating plain foods that the first things to resolve are the 'mental' problems, often even before the GI problems.

I am convinced that so many of us are actually carb intolerant rather than just Gluten, which would explain why so many have an initial improvement but then start to regress as they end up replacing the gluten with different carbs that they then also become intolerant to.

It may be that once the gut is healed and bacterial issues are resolved we can cope with some carbohydrate - the problem is that in what is considered to be a 'normal' diet we actually consume far more than the body can cope with and that is why it gets out of balance and becomes sick. Communities that do not eat the type and/or quantity of Carbs that we do, do not suffer the 'Western' diseases that we do.

I have been gluten-free/DF for nearly 2 months and doing the SCD for 2 weeks and am beginning to see a benefit already as I am now able to tolerate a few more foods than I was. I am sleeping better, my restless legs have calmed down, my heart is no longer pounding and I am less stressed. I will keep it going for some time at least until I have the bacteria under control and my gut has healed and see if I can then start to introduce and cope with other foods.

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I had significant improvement in my depression and anxiety about 3 mo in . .. i cut out dairy and gluten at the same time, and adding b12 seemed to help. However, i'm on a much stricter diet now (only eating about 25 foods) and i dropped all supplements becuase i want to add them like I would a food. I'd been doing better, until hay-fever season hit. I had a manic evening 2 weeks ago, and I've been feeling occaionally depressed recently, tho I think its partly because I'm having so much trouble breathing, and also because I'm so down about being on such a limited diet and still being sick. My stomach has hurt non-stop for 2 days and I have no idea why . . . well, unless its the meat I finally added back in to my diet .. . grrr.

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I'm not too sure of the responses on this thread.

I don't see why it would take 18 months for the intestinal tract to heal.

.

Celiac is a lot more than just a gut problem-its a systemic autoimmune disease which can have a profound neurological impact. This is an interesting article on anti-gangloside antibodies causing neuropathy in celiac....

http://www.celiacdiseasecenter.columbia.ed...od_in_neuro.pdf

its really complicated.

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I am so glad my depression lifted. i suffered from it in all my 53 three years and then last year Is tarted to eat gluten-free and it lifted...in a few weeks. And also my compensating compulsive erotical manias subdued or diminished. I never have been so healthy - I also stopped all acidic food (because I have polyurea - intersticial cystitis). I am frightened when i hear about cases where the depresive moods did not lift. i hope mine stays as it is now - lifted. (I lose this when I get - involuntarily - glutened but only for a day). Geo Kozmos

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My anxiety about traveling continued for a quite a while and still pops up some 7 years later. My wife also has to point out every now and then that I'm hoarding/buying too much food, something I didn't use to do. Overal,l though, my mental state was much better in about a year.

richard

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Many have found by doing SCD or Paleo type diets and dropping virtually all carbs and sugar and just eating plain foods that the first things to resolve are the 'mental' problems, often even before the GI problems.

I am convinced that so many of us are actually carb intolerant rather than just Gluten, which would explain why so many have an initial improvement but then start to regress as they end up replacing the gluten with different carbs that they then also become intolerant to.

It may be that once the gut is healed and bacterial issues are resolved we can cope with some carbohydrate - the problem is that in what is considered to be a 'normal' diet we actually consume far more than the body can cope with and that is why it gets out of balance and becomes sick. Communities that do not eat the type and/or quantity of Carbs that we do, do not suffer the 'Western' diseases that we do.

I have been gluten-free/DF for nearly 2 months and doing the SCD for 2 weeks and am beginning to see a benefit already as I am now able to tolerate a few more foods than I was. I am sleeping better, my restless legs have calmed down, my heart is no longer pounding and I am less stressed. I will keep it going for some time at least until I have the bacteria under control and my gut has healed and see if I can then start to introduce and cope with other foods.

Ditto on cutting down on carbs. Medical science used to lump depression and bipolar disorder into a catchall called "mitochondrial disease" .....meaning the mitochondria you inherited from your mother was inferior at turning food into energy. And that disturbance led to others.

There's also lots of recent research showing that omega 3 fatty acid is instrumental in reducing depression and bipolar disorder. Why? The jury's apparently still out, but here's my guess. Celiac disease is a disease of the membranes. Lipids control chemical access to and through membranes, especially in the central nervous system. Fatty acids are the building blocks of lipids, and the remover of spent lipids.

Omega 3 oils are needed to make these processes work properly.

I've challenged myself with omega 3 oil, and with removing Omega 3 oil over several-week periods. There's a subtle but extreme difference in my mood and overall inflamation on and off of omega 3 oil.

..

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I was helped a lot when I quit gluten and some other foods. But my spells of despair didn't go away until I figured out all the food intolerances. It took me about 3 years.

Good idea to do an elimination diet, in other words.

I was probably also helped by taking omega-3's. I take a kind that's made from algae, with EPA and DHA, from water4.net.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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