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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.

Gluten Withdrawal?
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Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet? I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas. Anyone else have similar symptoms? Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.

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Yes, I went through gluten withdrawal symptoms to. It's a big adjustment for your body so you do have to give it time. I can't say how long it will last because everyones symptoms go away in different times.

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I recently went gluten-free with three other family members. None of us experienced what you described. Maybe you're not getting enough vitamins. Our menu hasn' t changed, just the omission of gluten and most dairy. I use all gluten-free substitutes for our regular gluten full menu. Plus, with the elimination of dairy, I added one spinach/lettuce salad every evening. The kids may eat a half a cup of this, my and my husband more. But there's lots of nutrition is a salad. And we haven't had any cravings for gluten. I'm eating far less though. My kids are eating a little less and not asking for snacks between meals as much. Maybe I'm dishing out larger portions?

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HI carriecraig,

I was wondering if it's possibe the you may still be getting gluten somewhere. It seems strange to have a negative gluten withdrawal reation. :( Usually people who are celiacs have a wonderful positive response when they give it up. :)

Have you checked your medications or vitamins? Maybe recheck all your products, toothpaste, lotion, ect. and recheck all your food stuffs.

Maybe you need more vitamins. You could try liquid or sublingual ones.

Maybe you went from eating alot of bread products to eating lots of fruit and vegies. When your system isn't used to it, fruit and veggies can cause alot of bloating and gas.

What about protein, are you getting enough? check to see if you are iron defficient. I would also recommend taking Omega 3 fatty acids. (fish oil). You can get good gluten-free ones (in caplet form) from whole foods. They help every system of the body from your heart to your joints, to your hair and fingernails. But best of all they really act as a brain food. Studies show it can alleviate things like depression, ADD, Bi-polar disorder, and improve Alzhiemers, (sp) brain fog, ect. Great stuff!! :D

Hope you feel better soon, Wendy

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Our endocrinologist says it is almost like the body is addicted to the gluten and reacts much the same way as an alchoholic when they stop drinking. It is a true withdrawal process. It does go away and life gets much better. The amount of time it takes varies from person to person.

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I didn't see the dramatic withdrawl from gluten at all. Twice I've gone gluten free in the past year and neither time did I feel even slightly like I was going through withdrawals. My husband and two other non-celiac kids also just went gluten free...about a month ago, now. They all say the same thing. No cravings or need for gluten. Do you suppose it could be from the leaky gut syndrome where peptides are leaching into the bloodstream? Maybe the addiction is to the peptides? But not the gluten itself? That would explain why a celiac would experience withdrawal symptoms....Not from gluten, but from those peptides?

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:)

Regarding Gluten withdrawal, I remember asking the same question earlier this month, but I can't find the post. I went gluten-free on June 16th this year and my energy level was like a yo yo, and I was surprised that I felt worse instead of better.

My son-in-law (LPN) suggested that maybe I was missing some carbs and to check and make sure I was getting a good balance between carbs, fats and proteins.

For me it turned out to be carbs were missing and I started eating brown rice. That really helped. Also bought a pancake mix from Red Mill and that seemed to really satisfy what my body was asking for. It's different for everybody. In week 5 of gluten-free, my energy began to level off and this whole week I've felt well in just about every way. So hang in there and do your research. Discover for yourself what it is your body is needing. When you find that out, you'll be on your way.

You will get tons of answers by doing a search. I found all these postings to be interesting on that subject. I just entered "gluten withdrawal" and it came up with 11 pages on the subject. I did my search in "all forums", and "most relavant. Here is the link to the search results.

http://www.glutenfreeforum.com/index.php?a...uten+withdrawal

Hope this helps.

Maryellen

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I had some of the withdrawls too - it lasted about 2 weeks for me. Depression, fogginess, anxiety - all that fun stuff! Maybe this will help you understand what's going on - This is from the book "Dangerous Grains":

The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath. If you are a member of this group, the very fact that you are experiencing many of these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawl of detoxification from gluten-derived opiods and brain neurochemical imbalances. The evidence suggests that about 70 percent of celiac patients will experience these symptoms when beginning a strict gluten-free diet.

...

Most individuals who have celiac disease or non-celiac gluten sensitivity are also addicted to gluten. The morphine-like peptides from gluten frequently stay intact because the bonds between some sequences amino acids are quite resistant to digestion. Those who have leaky gut will allow these opioids and other large peptides to enter the bloodstream. The addictive process has probably been at work in most gluten-sensitive and celiac individuals for many years, probably since childhood. This makes elimination of gluten a great deal more challenging than might be expected.

Jnkmnky - you don't have gluten-intolerance or celiac disease, do you? Maybe that's why you didn't present the withdrawl symptoms. You might want to put a note on your signature that you don't have celiac disease so that people wont assume that you are speaking from the perspective of someone who has it, but rather from the perspective of someone who loves & cares for someone with celiac disease ;)

- Michelle :wub:

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Thanks everyone! Today I have actually felt like a normal human being. I'm hoping that it will be clear sailing from here. Have a great weekend.

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Yeah! Doesn't it feel good to know you are gettting better?

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I've been gluten-free free for four weeks and I have been violently ill most of this time except the first week when I felt pretty good. I do have a long history of being very ill with chronic congestion, lymph nodes swollen, antibody deficient etc. so perhaps it is why. I have had an extremely clean organic diet for many years so it's not a lot of detox per se of junk but if my body has been so sick and it can now heal it makes sense this would be happening.

I'm glad to have found this board and information in regards to getting ill when removing gluten. It helps me keep some focus that there is the other side of this.

Is there anyone who had chronic congestion and lung infections that can tell me their experience when they went gluten free? My body sure is spewing stuff out that has probably been low grade chronic for years so it is a good sign, I think? lol

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My daughter was diagnosed a few months ago, and I've finally decided to go strictly gluten free myself. I am fairly certain I have it as well....but I'm not going to get tested. I want to keep under the insurance radar at the moment. They aren't even covering all of my son's vaccines, so I figure as little testing I can have done, the better.

Anyway, I'm just beginning the second week into the diet, and I have definately felt what I would call withdrawl. I have been very irritable lately, just ask my poor kids! The fatigue has been worse than usual on some days, where I've had to put everything down that I was doing and close my eyes, just to get through the day. And, the headaches have been different. It's the same kind of throbbing headache I get if I miss my morning cup of coffee......the kind where nothing I take will make it go away. I've also been way more sensitive to dairy than before. I used to be able to tolerate a glass of milk with dinner, but if I do that now I wake up with terrible congestion and drainage, and I feel bloated. I definately feel like there is a change taking place, because occasionally I will feel really good, and just plain "happier" than I have in a long, long time. The other night, we had some family over. I was having such a good time, and just hysterically laughing out loud. It has been years, I can't even remember the last time actually, that I felt free enough of my anxiety and stress to really let loose and laugh out loud like that. It's a small thing, but it was definately an eye opener for me that I am on the right track here.

Sad to think how many people are going around popping antidepressants, or various other pills....when the treatment could be as simple as a diet change. Granted, it is a drastic diet change, but far better than the alternative.

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I've had my depression worsen since going gluten-free. I just chalked it up to stress at work which has gotten much worse the last few months (I walk out of there feeling like I've been beat up--I get verbally abused every day over the phone working in the repair department of a phone company) and to the fact that I've had to change my whole diet, and that has stressed me out. Maybe it is partly those things, but maybe it is due to withdrawal. I've also had about 4 migraines since going gluten-free, never had them before- ever. Just had one last night as a matter of fact. That I'm pretty sure is due to the change in diet, since it was so extreme.

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I went through a very severe depression for a few months after going gluten-free. Looking back I think it was a combination of physical and psychological reasons. It eventually got better and my life has never been better. Keep at it because it will get better.

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Sometimes, someone writes something you specially need to hear that day and today for me it was Ian's post. I had one week during my six/seven week now gluten-free were I felt totally content with life, happy, lots of self-esteem and clear-headed. I hadn't felt like that in many years. But then I went back to my old dreary self again...bummer....so reading that Ian improved just made me feel some hope again. Thanx

Misa :D

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Sundance:

Our asthma and sinus problems went haywire the first month we were gluten-free, then they stabilized slowly. They are also some of the first symptoms if we get glutened. I think it is just that this is our bodies' way of trying to deal with the immune system reaction.

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When I first went gluten-free, I felt good for about a week, then got violently ill. I had low grade nausea and slight dizzyness before my Dx, after that week, I could barely get out of bed without falling on my face and was vomiting some. I had problems with congestion and got a bought of bronchitis that landed me in the hospital. I definitely think all of this was that withdrawal. It has been about three months now, and my withdrawal type symptoms have begun to recede. I also went back and forth between feeling okay and feeling lousy. I think I may be at the point where everything will be getting better from here on out!! Whoo hoo! Just try to keep up the diet as strictly as possible. I think gluten and the gluten-free diet affect everyone differently, so you may just have to wait the problems out until the start to clear up. Hang in there!

Taking probiotics and a liquid vitamin helped me out, maybe they could help you too.

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Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet?  I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas.  Anyone else have similar symptoms?  Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.

<{POST_SNAPBACK}>

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Hi,

This is new to me as well. I have been on the gluten-free diet now for about 2 months. Prior to the antibody test I had wondered if I didnt have Celiacs disease. I had felt better on some days I ate less bread products. Then one day I didnt have any obvious gluten (until that evening) and I felt soooooooo much better. That evening I had just a little and I got really bad then later in the evening. The next day I went on a gluten-free diet and felt BAD and the next was bad but not as tuff as the day before. My sis in law happened to call me one day and she told me you can get worse before you get better! That was my saving Grace Phone call. Prior to that phone call I felt that once again I was on the wrong tract. By the time I got to the Dr (3-4 days after going gluten-free) I had been starting to feel better and I had to go back to the Gluten to get tested. So, with the yo- yo of the diet at the beginning I can relate to what you are saying. I had to go thru some bad times at first!

And some of my symptoms have become way better but I still have some of them. I have my brain back for the most part and that is really nice. I had lots of memory problems and head fog prior to going gluten-free as well.

It sounds like you are starting to do better too! That is a great feeling!

Sandy

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Hello,

I've been gluten free for a month now. I still wake up an everything looks dark and gray. I still go do the things I once did, but this dark cloud depression really stinks. I feel foggy all the time..That's my most aggravating symptom. I have given up smoking, drinking, caffeine, and gluten in the past 6 mos. I'm wondering if I self medicated all those years. Since I quit, I wake up in what feels like a very dark place. I am gluten intolerant, and am wondering if that started all this. I want this to lift and by reading some of your posts, sounds like it did for most of you. I pray that going gluten free is my answer. Say some prayers for me guys and gals, I want my life back!!!

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Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet? I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas. Anyone else have similar symptoms? Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.

I know this thread is kind of old but I can totally identify with this right now...Ugh

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I can so relate...I know that this is an old thread but I am going to BUMP it. I feel it is SO important to those who go gluten free to perhaps expect. I had not idea of the power of gluten. I am 55 years old and I am just BLOWN AWAY at both the positive and negative reaction I have had with a simple change in diet. Along with withdrawal, there seems to be a Tsunami of feelings and a vague sense of disorientation, especially in the morning hours. Just knowing the reaction that I have had to gluten's departure from my life, further reinforces my need to be gluten free.

NEVER underestimate the power of gluten...that has been my lesson....it has been SHOCKING to say the least....

I am so ever grateful to have this forum, because both celiac and gluten sensitivities, until very recently have been under the radar and I for one will do everything in my power to be an advocate for both Celiac and Gluten Sensitivity awareness....

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Hi, I'm new to this whole topic. I was having bloating and indigestion very badly and I put my symptoms into a website where it tries to diagnose you by your symptoms, and celiac disease came up. I don't think I necessarily have that, but I decided to give up gluten about 2 weeks ago, and I'm now pretty sure, from the withdrawal symptoms I've had, that I am at least gluten sensitive. I've had sinus drainage, headaches, very severe muscle cramps, aching joints, and especially, a lot of bloating after my evening meal (not my other meals, just the evening one.) I figure that I should stick with it, since my reaction is so strong. And I'm noticing that I don't have food cravings like I did before. So I'm eating less! Maybe because of increased absorption? Is there any way to speed up the process and get the gluten out of my body? It's been there a long time. I'm 62. Thanks for any help I can get!

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I don't know if there's a way to speed it up, but I can tell you what happened to me, see if it helps!

I went off gluten in July, and within days felt horrible. Cramps, aching, headaches...very similar to what you're describing. It all went away, 100%, when I stopped eating - I was feeling so bad I thought I was ill, and just ended up not eating for a day or so because I felt so miserable. When I started adding in food again, I kept food log, and found out that my symptoms completely correlated with foods I was eating.

When I cut out those foods, too? I feel fine. TOTALLY fine. Even things I never would have thought of - no more headache, backache, insomnia, bloating and cramping, congestion...things I'd just taken as a normal part of my life for years now.

Now that I've been off of gluten for a while, I note that when I accidentally get something on the 'bad' list, the reaction isn't as bad as it once was, but it's still there. It might be worth your while to do a food log - where you keep track of every ingredient - and see if you have a similar correlation.

Adding to that - it might help to get off any gluten-free foods (pastas, crackers, gluten-free breads, etc...) if you are using those. One thing I found out was that the foods I react to are ones that are more common additives in gluten-free foods, like potatoes and sugar cane. So I was getting more of these ingredients than normal when I went gluten-free.

Also, when I finally saw my GI doctor (the good one I hunted down after my celiac disease diagnosis), he mentioned that other food allergies and sensitivities are very common for people who have celiac disease, or have food allergies already. Testing me for allergies with a blood test was one of the first things he wanted to do, and it confirmed a lot of what I'd been noticing on my own.

In any case, I don't know if this is your situation, but keeping foods simple for a few weeks and keeping a food log of foods and bodily reactions certainly can't hurt, and it might help. :-) Good luck!

Hi, I'm new to this whole topic. I was having bloating and indigestion very badly and I put my symptoms into a website where it tries to diagnose you by your symptoms, and celiac disease came up. I don't think I necessarily have that, but I decided to give up gluten about 2 weeks ago, and I'm now pretty sure, from the withdrawal symptoms I've had, that I am at least gluten sensitive. I've had sinus drainage, headaches, very severe muscle cramps, aching joints, and especially, a lot of bloating after my evening meal (not my other meals, just the evening one.) I figure that I should stick with it, since my reaction is so strong. And I'm noticing that I don't have food cravings like I did before. So I'm eating less! Maybe because of increased absorption? Is there any way to speed up the process and get the gluten out of my body? It's been there a long time. I'm 62. Thanks for any help I can get!
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I don't know if there's a way to speed it up, but I can tell you what happened to me, see if it helps!

I went off gluten in July, and within days felt horrible. Cramps, aching, headaches...very similar to what you're describing. It all went away, 100%, when I stopped eating - I was feeling so bad I thought I was ill, and just ended up not eating for a day or so because I felt so miserable. When I started adding in food again, I kept food log, and found out that my symptoms completely correlated with foods I was eating.

When I cut out those foods, too? I feel fine. TOTALLY fine. Even things I never would have thought of - no more headache, backache, insomnia, bloating and cramping, congestion...things I'd just taken as a normal part of my life for years now.

Now that I've been off of gluten for a while, I note that when I accidentally get something on the 'bad' list, the reaction isn't as bad as it once was, but it's still there. It might be worth your while to do a food log - where you keep track of every ingredient - and see if you have a similar correlation.

Adding to that - it might help to get off any gluten-free foods (pastas, crackers, gluten-free breads, etc...) if you are using those. One thing I found out was that the foods I react to are ones that are more common additives in gluten-free foods, like potatoes and sugar cane. So I was getting more of these ingredients than normal when I went gluten-free.

Also, when I finally saw my GI doctor (the good one I hunted down after my celiac disease diagnosis), he mentioned that other food allergies and sensitivities are very common for people who have celiac disease, or have food allergies already. Testing me for allergies with a blood test was one of the first things he wanted to do, and it confirmed a lot of what I'd been noticing on my own.

In any case, I don't know if this is your situation, but keeping foods simple for a few weeks and keeping a food log of foods and bodily reactions certainly can't hurt, and it might help. :-) Good luck!

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    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
    • Generic meds
      Your best bet is to contact the manufacturer (as Squirmingitch suggested).   My doctor has no time to worry about medication containing gluten.  My pharmacist admitted that she does not have the time to help me, but recommended that I take responsibility and always contact the manufacturer.  My pharmacist did help by insuring that my thyroid replacement medication (Armour) is ordered in a full bottle, sealed and direct from the manufacturer.  I have to give her credit for being honest with me.  I also see her running around non-stop, so I believe that she is super busy.   Why did your doctor switch your medication?  Can you go back to your old brand?  How is your thyroid?   This is a bit off topic, but I subscribe to the Bicycling magazine.  I found this article fascinating about the impacts of cycling, swimming or running on ADHD.   http://www.bicycling.com/culture/people/riding-my-ritalin-how-one-cyclist-gained-control-over-his-adhd I hope you figure it out!  
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