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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.

Severe Chronic Constipation
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I've seen some really brave posts on here recently, so I am going to talk about my worst symptom. Severe Chronic Constipation. More people seem to have D on this site, and I never do, so I've been embarrassed to bring up my problem. I've been having severe constipation for three years, trying to figure out why. Then I found out about my gluten intolerance, and started eating gluten free. I start to have normal bm's then get "glutened" again when I try a new food because of leaky gut, and my body has to start over and hasn't really had time to heal enough to see good results long term, even though I've technically been gluten free almost five months.

I occasionally I have a bm on my own, but mostly I am dependent on plain water enemas and occasional colonics. Please no comments from people concerned about that. It's not dangerous or habit forming like docs will tell you. It's perfectly fine to do as long as I need to. I'm also not looking for constipation remedies. I've tried everything that helps most people. Walking, more water, fiber, medications, you name it, I've tried it. It doesn't work for me. I'm not careful about always eating organic though because I can't believe that could be enough to cause this.I take probiotics. I eat nothing other than fresh fruit, raw vegetables, beans, nuts, and water. That's all I can eat with having a horrible gluten like reaction. I use evap cane juice in my smoothies and salad dressing, sea salt, pepper, olive oil. Right now I'm drinking Kangen water to see if that helps.

What I would like to know is has anyone else experienced this symptom like I have from an intolerance to gluten or leaky gut? Did it get better? Can anyone relate? I'd like to know I'm not alone, and it would be encouraging to hear any comments about anyone who's recovered from this. Between the constipation and gluten symptoms, I'm sick so much, I have no life to speak of. I'm happy if I can make it to work.

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Hi Sara-

You are not alone in having chronic constipation rather than diarrhea with celiac. I've battled different degrees of constipation my entire life. My celiac doctor was the first doctor that ever wanted to have a detailed discussion with regard to constipation - very frustrating to get docs to understand. Many doctors still don't know that constipation is a symptom of Celiac Disease.

When I first went gluten free I did have a brief period of perfect - every day regular - no problems - that only lasted a couple months. Then progressively got worse again. I was fairly regular for nine months last year when I removed all possible food intolerance, but had another horrible fibromyalgia/celiac flare in March with no explanation (was still on very restricted diet) -- became extremely constipated once again. Did find out that I had extremely slow/sluggish bowels - my doc finally understood when the bowel prep for a colonoscopy took 8 hours to start working for me - if you've never had the pleasure -- bowel prep usually clears you out rather quickly ;). After that I had a test where you swallow a pill with markers and then they x-ray 5 days later to see how far the markers have traveled (normal folks would not have any left - I had a lot). Doctor could only suggest possible SIBO as the cause of many of my unresolved digestive problems.

In July I took a course of antibiotic in case SIBO (Small Intestine Bacteria Overgrowth) is the culprit. Since finishing with the antibiotic I have continued with probiotic along with pepperment and oregano oil supplements...have had improvement over the past month - but am no where near regular. I am hopeful this trend with continue to improve.

I'm also looking into Thyroid -- many of my lifelong symptoms have been those of hypothyroid -- docs have run TSH every year or so because symptoms have always been there. My TSH is always in the "normal" range. I did some research and asked that they run Free T3 and Free T4 along with Thyroid Antibody tests. I do have very low thyroid hormones which can indeed indicate hypothyroid (constipation is a symptom of hypothyroid) -- so I'm looking into Thyroid Hormones.

So while I can't tell you when or how it will get better - I can tell you it can get better and you are not alone with this problem. Maybe some others that have improved completely will have other suggestions.

Ever hopeful :)

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p.s.

Also noticed that you went gluten-free in March of this year...it is possible that you simply haven't had enough time to heal. Depending on the damage to your intestines it can take a very long time to heal completely.

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What about increasing healthy fats like olive oil, flax oil and avocado? I did some checking on causes of constipation in vegetarians (from your list I assume you are) and it appears to be a fairly common problem if you don't consume enough of the good fats along with your high fiber diet. It would be an easy thing to try anyway.

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I eat two avocados and and a tablespoon of olive oil every day. Increasing my olive oil consumption daily is one thing I haven't tried consistently. My weight has been consistent, but lately my scale will show I've gained 5-10 lbs, but I think I'm retaining water. Maybe I should have one avocado a day and increase my olive oil. Once I tried drinking 1/4 cup of olive oil - I read that it should produce a bowel movement within hours, but nothing happened.

I had the test where you swallow the markers and the x-ray 5 days later showed that the majority of them passed, indicating my motility isn't too bad. I had a colonoscopy and cat scan. No functional abnormalities or obstructions. When I was first diagnosed gluten intolerant, I tried several things to clear out the stuff that was stuck inside but even a colonoscopy prep kit didn't work! The only thing that did start to clear out the old stuff stuck inside was starting a raw food diet along with regular colonics.

Ten years ago I was diagnosed with slow transit constipation and prescribed Miralax daily, which worked for seven years, then stopped working at all. I stopped it when I went on the raw food diet, in case it was irritating my intestinal lining.

My doc is testing me for hypothyroid including Hashimotos this week, but I don't have any other low thyroid symptoms other than constipation.

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Have you had all of your vitamin levels checked? Many vitamin deficiencies can cause constipation. I was severely constipated for several months when I had never had any issues before...in fact I always had the opposite issue. After checking my levels it turned out I was B12 deficient. Since starting treatment I am back to normal. Hope you find something that works. Constipation is miserable. :(

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Hope you find something that works. Constipation is miserable. :(

Thanks for saying that, because it is miserable, and discouraging. When my bowels don't move, I feel depressed, then when they move again, it's like a dark cloud has lifted and I'm back to my optimistic self again. The psychological and physiological parts go hand in hand.

I am having blood work next week to check all my vitamin and mineral levels and all the usual things. I've taken 1000 mcg of B12 daily ever since I was also found to be deficient years ago.

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Raw food diet can be tough on a healing gut. I'm not suggesting it is the cause of the constipation - just it can be tough for your body to handle all raw vegies right now.

In your first post you said between constipation and gluten symptoms - are other symptoms improving on your current diet?

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I don't have much to add only that I've had this problem most of my life as well as my Dad...So for fifty years plus I've had this problem. Some days are better than others but I do have a a routine that helps but it has never went away...

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Raw food diet can be tough on a healing gut. I'm not suggesting it is the cause of the constipation - just it can be tough for your body to handle all raw vegies right now.

In your first post you said between constipation and gluten symptoms - are other symptoms improving on your current diet?

After about 8 colonics over 2 months, then a colonoscopy prep, magnesium citrate, nothing would move. A cat scan showed there was still an impaction, so my doc said if it wouldn't move after all that, a liquid diet would be necessary.

At that point I was on my third colonic technician and she suggested the 30 day raw food diet, because there are more digestive enzymes retained in the food which would be destroyed when cooked. The second day on the diet the old buildup finally started to dislodge! It was like a miracle. As I continued on the diet, all the old fecal matter came out, little by little. After 2-3 weeks on only raw fruit and vegetables, I needed protein, so I added nuts, then beans. I started to really improve. My body really liked the diet.

Then I tried to add new sources of protein and the problems started again. I started to get the same symptoms as when I had eaten gluten from several new foods. Over the 5 months gluten free, each month I would try to add a new food, and be sick again for a month with all the same symptoms. So, I have only been reaction free for a week now technically, after identifying the last problem food.

The raw food diet as I originally started it, with nuts and beans included still makes me feel really good. My body likes it. I can't tolerate anything else. I'm not going to try any new foods for the next six months, and I hope my gut will finally have time to heal enough for the constipation to improve.

Before my first constipation symptoms started 10 years ago, then worsened 3 years ago, I was as regular as can be. I don't know if it was may age, I'm 47 now, but they could never find a reason why it started. Now I wonder if it was gluten all along.

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Hello FruitEnthusiast, Just writing to let you know that you are not alone. I have the exact same problem and my mother says it has been since birth. I am now 25 years old. I have only been diagnosed this year and have been only on the orad to recovery for a little over 3 months. I am on a similar diet as you, I have eliminated a lot of foods and I am still constipated. I take RestoraLAX which I am pretty sure is the same as Malirax that smoe people on here take. That did help but lately I find that I have to up my dose to keep it working. Unfortunatly that is all I have to offer right now. I am in the same boat as you and really hope to fine a better solution

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At one time a few years ago I had alternating C and D. Then it slowly changed to C, all of the time. When I was DXed with Celiac about a year ago, the GI said the C should clear up on it's own over time, but I should be sure to drink plenty of water.

I've struggled to regain my health since my Dx. I eat non processed foods. My only gluten-free item is cereal. My only grain is brown rice. I had some tests at Mayo this spring. It was determined that I had SIBO, and it's suspected that it's a severe case.

I went on several different anti-biotics with no noticeable change. I was told there are many strains of bacteria, and the anti-biotic should be geared towards whichever one they are trying to fight. In my case it would just be guesswork, so after 3 failed I was told to just take probiotics along with digestive enzymes. Both of those help to knock out the bad bacteria, and the digestive enzymes help break down your foods so they're more easily digested and move along better.

I was told this would be a slow process to rebalance my system, but I have been noticing a bit more regularity and not as much firmness. Dare I say..I'm almost becoming normal? B)

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The raw food diet as I originally started it, with nuts and beans included still makes me feel really good. My body likes it. I can't tolerate anything else. I'm not going to try any new foods for the next six months, and I hope my gut will finally have time to heal enough for the constipation to improve.

Before my first constipation symptoms started 10 years ago, then worsened 3 years ago, I was as regular as can be. I don't know if it was may age, I'm 47 now, but they could never find a reason why it started. Now I wonder if it was gluten all along.

Sounds like a good plan to stick with the diet that is making you feel good and not challenge anything for at least six months.

I am 47 too - the constipation definitely got worse the 5-10 years before I was diagnosed at 43. I have no doubt that undiagnosed celiac / gluten ingestion was the problem for me all along.

Hang in there - sounds like you are on the way to healing :)

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Thanks so much everyone. I do feel cheered up hearing that it's not just me.

My switch to Kangen water a week ago might be making a difference. Given what my bm looks like now, I would usually be feeling sick today, but I feel pretty good. It's possible that reg tap water after it's gone through the Kangen filtering machine, making it alkaline, antioxidant, w/ smaller molecule clusters, really is more easily absorbed and is helping my body cleanse faster and more completely than before. Some don't believe in it, but I met someone recently who swears by it, so she's been giving it to me from her home machine. She says she would only have a bm once a month before this water, and nothing helped. Now she goes every day! If anyone would like more info on it, I can post more.

I've learned not to count my chickens before they've hatched, so when I've been using the water longer, I will post more on my progress with it.

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What I would like to know is has anyone else experienced this symptom like I have from an intolerance to gluten or leaky gut? Did it get better? Can anyone relate? I'd like to know I'm not alone, and it would be encouraging to hear any comments about anyone who's recovered from this. Between the constipation and gluten symptoms, I'm sick so much, I have no life to speak of. I'm happy if I can make it to work.

Sara,

You are not alone. I rarely have diarrhea, my norm is chronic constipation. I went to my Dr. with that for years, and he just advised stool softeners and laxatives after having me do a colonoscopy (never mentioned celiac, or tested me).

When I get poisoned, I will generally be affected for 48-72 hours, then another 24 hours to recover. Most of the time I will spend 2-3 hours a day on the toilet for the 3-4 days trying to "go".

What I'm trying now - well, besides trying to not get poisoned - is when I do have a reaction, is to just acknowledge what is happening and skip the toilet until I can't skip the toilet.

It is amazing when healthy - going in sitting down, "going", and being done in like 2 minutes? It seemed freaky at first, getting something that most of the population takes 100% for granted. It was such a treat to get back 2-3 waking hours a day.

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I too have had C my entire life. Unlike others, I tended to go about every other morning, but it always felt like my gut was just clearing out just enough to make more room to pack in more. It hurt my gut when it would try to get moving the night before. My only relief would be around "that time of the month" when everything would get cleared out by the hormones but I was bloated in other ways so it wasn't much of a reprieve. I hope you get relief soon! It's annoying to feel like the stereo typical grandma in a lodge who thinks about BM's all the time... especially when I'm barely middle aged. LOL Hugs.

I have been gluten-free (except for a couple accidents) for only two months and have noticed only minimal improvement. Recently I discovered my thyroid isn't working well (I assume it's hashimoto's) so I'm hoping that once I start treating my thyroid, and give my adrenal a break, I'll get some improvement.

My thyroid problem was found with a high TSH, but I didn't realize that TSH tests are notoriously unreliable so I think I've had a thyroid problem for a few years since I've requested thyroid tests (docs ran TSH only) a couple of times over the last 10 years due to symptoms that caused me to suspect a problem...

Sorry, I can't offer advice. Your doing the right things already. I just wish you luck. :)

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I have seen so many posts lately dealing with severe chronic constipaion. I have suffered from it all my life and thought I was the only one who went gluten-free only to find the constipation became worse! I too have tried everything..tones of water, fresh fruit, veggies, nuts, beans, oils, etc, etc. Nothing worked. It got so bad that at one point 3 ducolax laxitives wouldn't move (!) me.

RonSchon - I am exactly the same if i get glutened. Two to three weeks to get on a somewhat even keel again.

Two years gluten-free and I am starting to improve. My daily routine: 3 flax seed oils, priobiotic 2x's a day, 4 oz aloe 2x's a day, liquid iron, powdered vits, metamucil 2x's a day, as close to a gallon of water as i can get,fruits, veggs, no junk food and a herbal tea every other night. I know it is all working to heal because I have been faithful to this routine for the past year and wghere I was taking the tea every night I am now able to take it every other night and once in awile am able to "go" on my own without the assistance of the tea. That is huge progress for me. I am not suggesting that anyone start taking a herbal laxative tea, just saying what has helped me.

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Me too, I drink 85 ounces of water every day. Occasional colonics have made a huge difference to get things moving. Before I found out I was gluten intolerant, I used MIRALAX daily for several years and it worked like a charm. Since my diagnosis, I stopped using it in case it was irritating my already inflamed intestinal lining. My colonic tech suggested I give that stuff a rest for now.

Does anyone know about using MIRALAX during healing from gluten damage? Good luck, bad luck? I'd love to hear about anyone's experience with that.

When I become really backed up, I become so depressed from it. It's becoming my worst symptom. I don't mean bummed out because I can't go. I mean the actual physical brain changes that occur when the toxins build up too much. My ND calls it leaky brain. I can tell when I've reached my toxic limit. Irritability comes first, followed by anxiety, then hopelessness. It's getting really hard to take. Then once I go I'm my usual cheerful self again.

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I was, by no means, as C as everyone posting above but I can say that every time I pick up an exercise routine my c clears up.

I started working out 4 weeks ago - and my "better" bm's became even more regular. So, that at least is consistent pre and post gluten-free.

Also, sugar gives me C. It's painfully (hah!) obvious now that my diet has changed so much.

Before I started thyroid meds C was bad. Real bad. Meds helped quite a bit - gluten-free helped more. Exercise makes them dang near perfect.

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Hmmm... more helpful info, thanks!

It's true I haven't had the energy left over lately to exercise and I SO want to get back on my exercise bike. I've been walking 10-20 min some days. I actually crave more vigorous exercise. It does wear me out when I do it now, but 5 min a day on the bike might be do-able, but when I ache all over most days lately, I just don't want to.

I was tested for Hashimoto's this week, along with the usual lab work, including the vitamins we tend to be deficient in, and another Celiac blood test (tested negative the first time months ago). So I will find out how my thyroid is doing and if there is med that can help me.

I believe I will be regular again. I do have a few days here and there when I go completely normal, like I used to until I was 38. Those were the days when I didn't even think about it, and would go 3 times a day. I still have hope and I'm feeling pretty good today.

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I also have the constipated version of Celiac. My mother had the diarrhea version. Go figure. :huh:

Painful bloating, stabbing cramps, flatulence, headaches, lethargy and depression. Fun stuff. :blink: For a few months after going off gluten I was regular, for the first time since I was a kid. About 7 months after quitting gluten, the constipation came back with a vengeance. I've now been off gluten for a year and I'm still struggling with C. I'm hoping it passes, that it's just a phase my body needs to go through while it's healing. I've had other symptoms clear up nicely, so I'm not going to give up hope just yet.

Best of luck to us all and may the banana and flaxseed smoothies flow freely :D

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I've seen some really brave posts on here recently, so I am going to talk about my worst symptom. Severe Chronic Constipation. More people seem to have D on this site, and I never do, so I've been embarrassed to bring up my problem. I've been having severe constipation for three years, trying to figure out why. Then I found out about my gluten intolerance, and started eating gluten free. I start to have normal bm's then get "glutened" again when I try a new food because of leaky gut, and my body has to start over and hasn't really had time to heal enough to see good results long term, even though I've technically been gluten free almost five months.

I occasionally I have a bm on my own, but mostly I am dependent on plain water enemas and occasional colonics. Please no comments from people concerned about that. It's not dangerous or habit forming like docs will tell you. It's perfectly fine to do as long as I need to. I'm also not looking for constipation remedies. I've tried everything that helps most people. Walking, more water, fiber, medications, you name it, I've tried it. It doesn't work for me. I'm not careful about always eating organic though because I can't believe that could be enough to cause this.I take probiotics. I eat nothing other than fresh fruit, raw vegetables, beans, nuts, and water. That's all I can eat with having a horrible gluten like reaction. I use evap cane juice in my smoothies and salad dressing, sea salt, pepper, olive oil. Right now I'm drinking Kangen water to see if that helps.

What I would like to know is has anyone else experienced this symptom like I have from an intolerance to gluten or leaky gut? Did it get better? Can anyone relate? I'd like to know I'm not alone, and it would be encouraging to hear any comments about anyone who's recovered from this. Between the constipation and gluten symptoms, I'm sick so much, I have no life to speak of. I'm happy if I can make it to work.

I'm curious, I too have suffered from chronic severe constipation now for a little over 4 years.  I've tried everything including the herbal teas which my gastroenterologist just recently advised me to stop.  She had originally said in 2010 when I first saw her they were fine to take since no over the counter or prescription medications/remedies seemed to be working.  You stated you had tried colonics which had provided some relief.  I live in Iowa and I've been trying to find somewhere that offers this and haven't had much success.  Can you tell me a little more about your experience with this and if you would recommend it.

Any feedback would be much appreciated!

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I suffered for years, and until being gluten-free, and going through all of my issues this spring, nothing had worked, but a year of gluten-free, things were better.  Then things were bad again, now I am somewhat regular.  gluten-free, not just grocery store purchasing gluten-free, but eating whole natural foods.  I cook almost everything myself.  Few grains.  Lots of water, only 1 cup of coffee a day, green tea or water the rest of the day.  Olive oil, increased vitamins, a glass of water with either lemon or apple cider vinegar.  I also cut back potatoes, not sure why but it was suggested.  I look for higher protein vegetables and enjoy more meats.  Good luck, what worked for me might not work for you, but I am doing better.  My husband used to joke about my bowels, now there is no joke left.  I am normal in that department.  For now anyway.  Finally.

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Yep! And check your vitamin panel. My doc. Said it was rare to have constipation than diarrhea but it didn't change the diagnosis. Your bloodwork and biopsy confirms your disease. I'm finding all of us react in different ways.

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    • Hi,   my history is the following: I used to eat a lot of foods with gluten & cheese together. They would make me seriously happy and and I was extremely content just eating a pizza and bread with cheese and things like this... Now obviously I'd have cycles... where I eat tons of gluten/cheese foods in combination... feel super content and thats it... Then the effects would wear off and I had to start a diet.. where I'd do modified versions of fasting or so for a few weeks... During that phase I'd get very depressed... but after a few weeks of no-gluten... I'd eat bread with cheese again and I felt like I was in heaven. I'd get extremely high from this stuff... like seriously I'd feel amazing... (I guess it's the morphine like effects of this foods)  but after some when I hit age 22 or so I started to get serious trouble... ....   I started getting serious neurological issues from it... like I could't put my words together... I'd have paranoia & feel like everything is unreal... I've been diagnosed with numerus psychiatric issues since then... My main problem right now is that my brain isn't functioning... I can't comprehend what people are saying and when I want to say something my words don't come easily... Like if I am in a conversation for a longer time this issues is barely noticable at all... But if I wake up... and I try to talk... there's no way.. if I haven't talked for a while it's like you could ask me and I couldn't comprehend what you say and couldn't put my words together in the way I'd like to... I feel kinda stupid sometimes... because I know I'm rather smart but when I have a conversation my speech seems very unsophisticated... --- I tried to change my diet.. with varying success... like I would feel great in the morning and feel completely depressed in the evening for no apparent reason whatsoever... at all! And I feel I can attribute this to traces of gluten which feels like this:   ---- When I have traces of gluten inadvertently... I suddenly feel like everything is kind of unreal around me... I feel depressed in a "opiate withdrawal" kind of way... I don't know how to explain it... it's just painful in the sense that I can't just enjoy having a conversation... like I have a conversation but I don't feel "the thrill"... everything is totally bland and I just feel depressed in the background... like I don't want to do anything and no matter what I do.. it feels completely pointless because I can't comprehend why I suddenly feel this way...    And it's not like I feel this way 24/7... that's the thing... it comes and goes and comes and goes... sometimes I feel completely fine in the morning or even for 2 days or so.... and then I feel completely like s$#& and devoid off all satisfaction for 3 days where I feel I'm going completely crazy & I can't talk.. can't comprehend... feel super weird when talking to people... and then the next days I just feel suddenly "normal"... like this relaxed and easy-going feeling in your body and wanting to be social and to communicate and just have fun... but then... when I eat some food and I feel it has gluten.. it hits me in a subtle way... where I suddenly loose all joy in life for days... and then it just dissapears... I've been struggling with this for years now and I can't seem to comprehend or get on top of this issue... Do some of you guys have similar experiences?        
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