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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.

Feeling Almost Worst On gluten-free Diet...say What!?!
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18 posts in this topic

If I have been eating gluten for a while and abruptly stop...why do I find that I actually feel WORST instead of better? For instance, it seems as though I get the initial s/x of the runny nose/congestion (I also have yeast allergies), sore joints, and maybe a little stomach pain (nothing big like n/v/d). I then feel "better", or maybe more like myself, for a couple days but then find that I gradually develop MORE s/x that I know are r/t my gluten consumption, such as fatigue, "brain fog", headaches, increased anxiety and mood swings, etc. These neurological s/x always seem to last for the longest in duration.

But, if I stop eating gluten, shouldn't I be feeling better initially? Does anyone else experience "long-term" symptoms, so to speak, after eating gluten?

Or is this my body's natural "withdrawal" reaction from gluten intake, so to speak? When any individual eats gluten, I know there are exorphins released in the body that react with certain opiod receptors, and it is possible for some people to form an "addiction" to gluten as your body demands more of the gluten protein. Am I on the right track here? Other suggestions, comments, and questions are most welcome.

Thank you everyone...

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Many people have reported withdrawal symptoms that can be mild to severe. They usually just say you have to wait it out. Also consider you might have some other foods you are sensitive to. Some, like dairy, you may need to leave alone for awhile but maybe can tolerate after some healing. Some you may have to always avoid and still others can only be eaten in moderation. At the least you should probably cut out the fresh dairy for now if you haven't already. It could help. I hope you're feeling better soon.

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Many people have reported withdrawal symptoms that can be mild to severe. They usually just say you have to wait it out. Also consider you might have some other foods you are sensitive to. Some, like dairy, you may need to leave alone for awhile but maybe can tolerate after some healing. Some you may have to always avoid and still others can only be eaten in moderation. At the least you should probably cut out the fresh dairy for now if you haven't already. It could help. I hope you're feeling better soon.

I'm lactose-intolerant as well and use soy as a substitute for milk, and tofu as a substitute for cheese. How long will these withdrawal s/x last for? Thank you for the response, by the way :-)

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I'm lactose-intolerant as well and use soy as a substitute for milk, and tofu as a substitute for cheese. How long will these withdrawal s/x last for? Thank you for the response, by the way :-)

I`ve been gluten-free for almost 5 years. I was really really sick when I finally figured it out and got off. It initially took about 4 days until my tummy and joint pain settled down, but the brain fog and the irritability actually increased for a while. I think I was somewhat in a withdrawal from the gluten. I went through a period of craving carbs and gluten soooo bad. The only thing that got me through was eating mass amounts of rice cakes. The mind and rashes slowly calmed down, and at about the 8 week mark, I all of a sudden could tell it was totally out of my system and the cravings totally stopped. I used to absolutely die to think of living life without going out for pizza and beer. That was the worst. Now I don`t even care about bread, pastries, pizza, etc. The first year, I was a big baby when going out around others eating the stuff and once in a while I would say heck with it and cheat. Then pay the very very big price for a week or 2. Not worth it. The symptoms will slowly go away, for me, 8 weeks. In the mean time, stock up on gluten-free snacks for the craving period. You will probably be irritable for a while until your body switches over.

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I can't give you personal info on that, I was very lucky and just felt better each day. But I've read other posters say anywhere from a few days to a few weeks. I think the PP's advice was good. Just make sure not to let yourself get hungry as you can be very tempted to give into your withdrawal and cheat. Visual gluten foods as something disgusting like dog poo. Always have safe food around you. I know when I reduced my sugar intake a few months ago I definately felt the withdrawals! It took me about a week and half to feel normal again.

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I feel your pain!! I've been gluten free for just 6 days, and today my anxiety was through the roof! My muscles feel weak, I've got brain fog and extremely irritable etc etc etc. I picked my husband up from work and while we were in the shops he said to me 'i think you need to have a lie down dont you?'! I couldnt get my words out properly at all (now this is nothing massively new for me as I get this every now and again, but today just seemed a lot worse than usual). I actually stopped at a junction and just sat there and hubby looked at me like I was stupid... in my head I was waiting for the traffic lights to change... but there werent any?! Hubby took over driving on the way home!

Its hard to believe that going gluten free will help when you start off feeling worse. I'm so over this anxiety (been going on for 4 years now) and would love to just be 'me' again... the old 'me'. I've treated my thyroid, my adrenals and now we're onto this ... My bloods came back as negative but my doctor is convinced I'm gluten intolerant, especially given the fact I have had 6 miscarriages and have thyroid disease. I guess I should put my faith in him and keep at it.

How're you feeling now ladycyclist?

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I feel your pain!! I've been gluten free for just 6 days, and today my anxiety was through the roof! My muscles feel weak, I've got brain fog and extremely irritable etc etc etc. I picked my husband up from work and while we were in the shops he said to me 'i think you need to have a lie down dont you?'! I couldnt get my words out properly at all (now this is nothing massively new for me as I get this every now and again, but today just seemed a lot worse than usual). I actually stopped at a junction and just sat there and hubby looked at me like I was stupid... in my head I was waiting for the traffic lights to change... but there werent any?! Hubby took over driving on the way home!

Its hard to believe that going gluten free will help when you start off feeling worse. I'm so over this anxiety (been going on for 4 years now) and would love to just be 'me' again... the old 'me'. I've treated my thyroid, my adrenals and now we're onto this ... My bloods came back as negative but my doctor is convinced I'm gluten intolerant, especially given the fact I have had 6 miscarriages and have thyroid disease. I guess I should put my faith in him and keep at it.

How're you feeling now ladycyclist?

Oh my...I know right where you're coming from tygwyn. Not getting the words out right, not making sense to a lot of other people, inattentiveness/"spacey" mood...I feel that's the worst thing for me when I've eaten gluten, because I can't even have control over my own mind.

Well, it was the beginning of August when I started this thread, and I'm doing a lot better now. Over-riding the cravings is very hard for me, but once I can get past that stage I'm fine. The more time that passes by, the less intense the cravings get. It doesn't really help that I have an impulsive personality either, but I just try to remind myself that I'd rather be healthy and thinking straight (not making an idiot out of myself and hurting loved ones with my fluctuating mood swings). I also try to remain faithful to the motto, "eat to live, NOT live to eat."

Thanks so much to everyone for the responses!

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Hello, everyone.

I'm new to this, and let me tell you, I'm feeling very emotional about it all, and am now going through some withdrawal issues I guess. I do feel hopeful, finally, after getting an answer, but also I get anger about all the misdiagnoses I've had. Now doing the research, I see how many people are affected by this, and I think something needs to be done on a larger scale. I realize a lot of the companies are very helpful and good at labeling their products, but I just think it needs to be addressed more. This is so serious, and my heart goes out to all of you, but I am so glad, also, all of you have learned what you have learned. It is scary to think about how many are still out there going from doctor to doctor, feeling awful, not knowing what is going on with them.

Anyway, I have had anxiety/depression issues most of my life, to some degree, but only in the past two years has it gotten so severe to the point that I'm nearly housebound. I had repeatedly gone to doctors complaining about other problems, such as skin reactions and digestive issues, and severe aches and pains I've been having. Each time, and by a number of doctors, it was either labelled as IBS (as related to the digestive issues), or they basically shrugged it off knowing I had anxiety, saying it was probably just in my head. After finding out about my gluten problem, I am just angry. I know I will get over it, but I feel like why didn't anyone ever suggest this to me or test me before this? *Sigh*

But yeah, as to the withdrawals, I had a MONSTER panic attack yesterday. I deal with attacks regularly, but this one was out of control. It started because I started having a slight allergic reaction feeling and the fear escalated from there. After having four consecutive good days, and feeling like I was on top of the world for possibly learning of a solution, that just mentally really set me back. Now today, I feel so achy from head to toe. Some of it could be from the bad attack yesterday and all the tensing up, but I have gone through tons of attacks, and never felt this way the next day. I feel fatigued and even just typing this post seems like work,and even my fingers (along with my entire body) just ache, with occasional shooting pains in certain joints. It's strange. I'm guessing this may be related to the withdrawals, and I suppose as you move on in your diet, any of the built up gluten in your body starts leeching out. Am I correct in this assumption?

Oh, another question......for a while now, although I have always eaten lots of fruits and veggies and drink a ton of water, I've had constipation issues, and I was hoping this would have cleared up a bit by now. Has anyone else experienced constipation associated with celiacs? If so, did it improve, and how long did it take before you noticed a difference? When I was diagnosed with IBS, it was cuz of the constipation and pains in stomach and intestinal area. That surprised me, because initially I only thought of IBS as involving diarrhea.

I know it's just a situation of waiting it out and getting past these beginning days, weeks, and months. I have such hope that this is the beginning of something great, and even through these rough days, I need to stay positive knowing this won't last forever. I hope and pray all of you are feeling better and that each day gets easier until this POISON is out of our systems and out of our lives!!

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After having four consecutive good days, and feeling like I was on top of the world for possibly learning of a solution, that just mentally really set me back. Now today, I feel so achy from head to toe. Some of it could be from the bad attack yesterday and all the tensing up, but I have gone through tons of attacks, and never felt this way the next day. I feel fatigued and even just typing this post seems like work,and even my fingers (along with my entire body) just ache, with occasional shooting pains in certain joints. It's strange. I'm guessing this may be related to the withdrawals, and I suppose as you move on in your diet, any of the built up gluten in your body starts leeching out. Am I correct in this assumption?

I would say that's a good assumption Nell. I think that your body is still working very hard to get all of the gluten that's built up out, but your mind of course notices the carbs, sugar, etc. that's now missing from your diet. I, too, go through the stage after immediately eating gluten in which I feel on top of the world -- nothing's wrong, I feel great about myself and the decisions I make, etc. But then that "high" feeling (as I call it) diminishes within a day or day and half. Then, for a good week or so, I feel very tired, "out of it", get cravings, have trouble concentrating, experience panic attacks/anxiety/depression, snappy (mostly towards loved ones :( ),and achy. Usually, the more time that passes for me, the less severe (or noticeable) the symptoms are for me. I promise you that you'll make it during this difficult time if you just stick to your diet. It does get better. Unfortunately, I don't know if it'll only take a week for you or not, but your body will let you know...

I would try taking gluten-free iron supplements (you're probably anemic, meaning that your red blood cell count is low, and could be contributing to your fatigue) to help with that "dragged out" feeling. Try to exercise (even if it's just walking) if you feel up to doing it to alleviate that achy feeling. I know I'm missing a lot of other things you should be doing (sorry), but sometimes just taking a look around some of the forums here will give you some good information. Or just ask your doctor or a nutritionist...

I hope I helped you...feel better soon!

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I would say that's a good assumption Nell. I think that your body is still working very hard to get all of the gluten that's built up out, but your mind of course notices the carbs, sugar, etc. that's now missing from your diet. I, too, go through the stage after immediately eating gluten in which I feel on top of the world -- nothing's wrong, I feel great about myself and the decisions I make, etc. But then that "high" feeling (as I call it) diminishes within a day or day and half. Then, for a good week or so, I feel very tired, "out of it", get cravings, have trouble concentrating, experience panic attacks/anxiety/depression, snappy (mostly towards loved ones :( ),and achy. Usually, the more time that passes for me, the less severe (or noticeable) the symptoms are for me. I promise you that you'll make it during this difficult time if you just stick to your diet. It does get better. Unfortunately, I don't know if it'll only take a week for you or not, but your body will let you know...

I would try taking gluten-free iron supplements (you're probably anemic, meaning that your red blood cell count is low, and could be contributing to your fatigue) to help with that "dragged out" feeling. Try to exercise (even if it's just walking) if you feel up to doing it to alleviate that achy feeling. I know I'm missing a lot of other things you should be doing (sorry), but sometimes just taking a look around some of the forums here will give you some good information. Or just ask your doctor or a nutritionist...

I hope I helped you...feel better soon!

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Hi everyone, just reading your reply's makes me feel what a long road to recovery this is.

I have been gluten free for 2 months and 2 weeks and counting!

It seems that everyday I become more intolerant of everything that I eat.

I cannot have any sugar as it makes me feel crap and during this last week I made a healthy gluten free meal with lamb chops, red potatoes, peas, carrots and cabbage and the next day I felt horrendous. Looking at everything that I ate in my nutrient book made me realize that I still cannot eat cabbage because of the Iodine in it, which stimulates my thyroid, although I haven't got an overactive thyroid, I have when it comes to certain foods, so for the next 2 days my head felt like cotton wool.

Today I woke up not feeling that good with my stomach bloated and gurgling and what made it worse was a cup of coffee substitute - Chickory, again looking in my nutrient book its a stimulant.

It just seems to get worse.

Well my head and stomach get worse but my joints are definately improving. I can now actually see where my bones are in my feet where as before they were just so swollen.

I am living on Rice Cakes, Apples, "safe vegetables" and mainly chicken and lamb. I still crave sweet foods, just hope when my gut heals these intolerances will end.

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Looking at everything that I ate in my nutrient book made me realize that I still cannot eat cabbage because of the Iodine in it, which stimulates my thyroid, although I haven't got an overactive thyroid, I have when it comes to certain foods, so for the next 2 days my head felt like cotton wool.

Cotton wool as in the mental/"brain" fog?? Because I feel like I still get the headachy, brain fogs whenever I eat gluten-free and yeast-free food. Annoying as all get out!

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I too am new to this - 1 week

I'm learning more of what to expect and why I'm going thru the changes and what it is that I'm eating that's failing me. (which in turn creates a new reaction of mood)

I'm only Gluten intolerant - and I see people talk about coffee and sugar.......does this go hand in hand with gluten? Is there a different reaction when combined?

I had found out that I had to quit the Wylers singles and Snapple singles that you add to bottled water with only 5 calories per serving (thinking I was on my way to a healthier habit of drinking water and not sugar) and found that if I had one, it was gone in 60 seconds and I quickly made another to the point I had 4-5 in one day of work.

I'm still lost about the ingredients that you can't pronounce which may or may not contain gluten - but I understand NO artificial coloring and NO artificial flavoring and Maltodextrose may contain gluten. I was addicted to these for a reason.

When I found out I had to be gluten-free - I went online and looked at symptoms, reactions, what is good to eat and what is not good to eat and finding that so many things are questionable and I have to start calling the companies for more information!

The hidden gluten in a form of Maltodextrose or Maltodextrin and they still don't label things as gluten free makes my life a living h_ll right now.

I checked canned chili beans to make chili and what did I find? yup. So I looked for a bag of red beans and decided I can control my intake by using what I know and using REAL foods to do it.

I thought at first that I'd have to eat only fresh meat, milk, fresh fruits and fresh or frozen veggies to survive this.

I think I'm ok to a point with that because I'd rather be healthy and know it than to be unhealthy and know it.

Yesterday and today I noticed a withdrawl symptom that only common sense tells me now. I cough and get that want to vomit sensation like a junkie that is cut off of his drugs. I gag so bad that I get nervous about the feeling.

I got so frustrated yesterday that I got angry.

Reading this forum has really helped me to understand because I am alone in this.

I have always had the house arrest feelings and fear leaving it due the anxieties - but now I need to find a support group and battle my fear of 'downtown' and scary places where they hold these meetings and battle the comfort of leaving my house - especially if I'm alone and have to tackle it by myself.

Granted I do go to work everyday and may make a random drive around my block to do groceries or pay a bill........but if I didn't have to - I wouldn't.

I don't know how long this will take for me - but I have noticed my vision has improved and I had one good day where I could smile and laugh. Feels good to be able to do that in just a week that I'm hopeful for better days ahead.

Thanks for being here for the newbies - you've become a warm blanket for such a cold experience.

Tena

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I need to change my ID because after 5 months my life has changed so much.

to make this short-

1st seven to ten days were HORRIBLE, my asthma was through the roof, heart palpitations, felt like I was losing it.

But after cutting out dairy & soy too I started to slowly get better, the dairy was really doing a number with my asthma.

5 months later-

mentally so much better

I can run, my joint pain is gone!

I went from a size 20/22 to a size 14. 35 pounds gone!

I can make a mean gluten free/dairy free pizza, peanut butter chocolate brownies...lots of "comfort" foods, not so panicky about what I'm going to survive on...the outlook on non boring food is pretty good LOL

grocery store visits no longer take 3 hours ;)

hang in there, its so worth it! I thank God everyday for this change!

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I started feeling better in gluten-free to then feel worse as the days passed by. I found out I was deficient in a lot of minerals and vitamin b's. Eat a lot of fruits, veggies, and nuts and if you can avoid all those gluten-free products. They are have awful nutritional value! It's better to eat potatoes, yams, corn on the cob, all whole starches because they provide a lot of nutrients that you may be lacking. I thought I could just take away the bread, but noooo. For some people getting this diagnosis means and entire lifestyle change. Another tip: make your own food.

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I started feeling better in gluten-free to then feel worse as the days passed by. I found out I was deficient in a lot of minerals and vitamin b's. Eat a lot of fruits, veggies, and nuts and if you can avoid all those gluten-free products. They are have awful nutritional value! It's better to eat potatoes, yams, corn on the cob, all whole starches because they provide a lot of nutrients that you may be lacking. I thought I could just take away the bread, but noooo. For some people getting this diagnosis means and entire lifestyle change. Another tip: make your own food.

You may not realize this, but you are replying to a post over 2 years old and the original poster may not see it.

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You may not realize this, but you are replying to a post over 2 years old and the original poster may not see it.

But people like me that gleen so much real information from these forums still read these very late replys.

Please dont discourage peeps from doing this - 'old' info has still been new + usefull to me.

Many thanx.

I dont Kno how to drive forum chat sites yet, so sorry if i dont respond quickly.

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But people like me that gleen so much real information from these forums still read these very late replys.

Please dont discourage peeps from doing this - 'old' info has still been new + usefull to me.

Many thanx.

I dont Kno how to drive forum chat sites yet, so sorry if i dont respond quickly.

We just want to make sure the new poster realizes that they likely won't get a response from someone who hasn't been on here in 2 years. Some people get mad that they don't get a response. Also, any product info might have changed over the years.

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