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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 Symptoms?
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16 posts in this topic

Hi everyone, I've just began a gluten free diet, been a bit over a week now. The first thing to go was nausea after every single meal (which is a relief!) no vomiting or even feeling the need to vomit and my constipation has seemed to get much better.

But I am feeling very achy, moody, suffering from constant bouts of brain fog and fatigue and still suffering from bloating. My lymph nodes under my arms have swelled a bit too. I understand that my body is trying to get better, but I was wondering if anyone else has suffered these symptoms after going gluten free?

I've almost fainted a few times in the past few days and had horrible dizzy spells, but that's from me not eating enough, since I'm scared of eating and being sick again!

Does anyone else feel this way? How long did it take you to feel better after giving up gluten to suddenly, what symptoms did you suffer with?

Thanks everyone!! :)

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Hi everyone, I've just began a gluten free diet, been a bit over a week now. The first thing to go was nausea after every single meal (which is a relief!) no vomiting or even feeling the need to vomit and my constipation has seemed to get much better.

But I am feeling very achy, moody, suffering from constant bouts of brain fog and fatigue and still suffering from bloating. My lymph nodes under my arms have swelled a bit too. I understand that my body is trying to get better, but I was wondering if anyone else has suffered these symptoms after going gluten free?

I've almost fainted a few times in the past few days and had horrible dizzy spells, but that's from me not eating enough, since I'm scared of eating and being sick again!

Does anyone else feel this way? How long did it take you to feel better after giving up gluten to suddenly, what symptoms did you suffer with?

Thanks everyone!! :)

I am not an expert and am very new to this community as I was only diagnosed with Celiac three weeks ago, but I started a gluten free diet as soon as I was diagnosed and definitely think I experienced some of those withdrawal symptoms. I felt pretty foggy and a bit out of it for about 3-4 days after I started the diet and I also had some bloating as well. My stomach does feel better, but prior to being diagnosed I didn't have extreme GI symptoms. My suggestion is to meet with a celiac dietician in your area - I met with one who had celiac herself and she definitely eased my anxiety regarding what to eat. I also take time to pack my lunch the night before so that I'm not rushed into choosing what I'm going to eat the next day at work. Its definitely been an adjustment and I've been struggling as well (which is why I joined this forum) but I can say that my "withdrawal symptoms" cleared up in about 3-4 days and now I'm feeling much better. Hope this helps!

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I am not an expert and am very new to this community as I was only diagnosed with Celiac three weeks ago, but I started a gluten free diet as soon as I was diagnosed and definitely think I experienced some of those withdrawal symptoms. I felt pretty foggy and a bit out of it for about 3-4 days after I started the diet and I also had some bloating as well. My stomach does feel better, but prior to being diagnosed I didn't have extreme GI symptoms. My suggestion is to meet with a celiac dietician in your area - I met with one who had celiac herself and she definitely eased my anxiety regarding what to eat. I also take time to pack my lunch the night before so that I'm not rushed into choosing what I'm going to eat the next day at work. Its definitely been an adjustment and I've been struggling as well (which is why I joined this forum) but I can say that my "withdrawal symptoms" cleared up in about 3-4 days and now I'm feeling much better. Hope this helps!

Hi, thank you for replying! Sorry to hear that you've been struggling with the new diet, it is a big adjustment and change. Since posting this message I've began feeling much better too, it seems like being gluten free the past 2 weeks is beginning to pay off.

How were you diagnosed? I'm seeing a new doctor tomorrow and a little wary of what they might say.

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It does take a very long time, and it usually involves fatigue, brain-fog, anxiety and dizzy spells.. for a long.. looong time, to the extent that you'll be doubting that you've gotten glutened again.

It took me months to feel better when I first went gluten-free, and it now takes three weeks if I get glutened by accident (but this highly differs from person to person).

I think though that you recover from these symptoms faster when you're taking probiotics and supplements.. I've still not been to the doc so don't take anything, which means my case is different from yours if you take supplements and probiotics.. That's also putting aside how much symptoms differ from person to person.

Don't worry, the light in the end of the tunnel will eventually show :-)

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Hi, thank you for replying! Sorry to hear that you've been struggling with the new diet, it is a big adjustment and change. Since posting this message I've began feeling much better too, it seems like being gluten free the past 2 weeks is beginning to pay off.

How were you diagnosed? I'm seeing a new doctor tomorrow and a little wary of what they might say.

I was actually diagnosed in a weird way. I went to a GI doctor because I started having abdominal pains that lasted for three days. They were sending me in for a colonoscopy and had to do routine bloodwork before the procedure. I guess my doctor had also ordered a couple other labs as well and I got a call two days later from her stating that my TTG (antibody) levels were elevated to 100 when they're supposed to be below five. Not knowing what that meant, she then told me it meant that I had Celiac disease. So on top of the colonoscopy, I'm now getting an upper endoscopy to seal the deal in terms of the diagnosis. But my doctor said that I should start gluten-free now because she's confident in my diagnosis due to the TTG levels. I was told that the two things you can initially test for are the TTG and the genetic marker. Did you have those tests done?

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I was actually diagnosed in a weird way. I went to a GI doctor because I started having abdominal pains that lasted for three days. They were sending me in for a colonoscopy and had to do routine bloodwork before the procedure. I guess my doctor had also ordered a couple other labs as well and I got a call two days later from her stating that my TTG (antibody) levels were elevated to 100 when they're supposed to be below five. Not knowing what that meant, she then told me it meant that I had Celiac disease. So on top of the colonoscopy, I'm now getting an upper endoscopy to seal the deal in terms of the diagnosis. But my doctor said that I should start gluten-free now because she's confident in my diagnosis due to the TTG levels. I was told that the two things you can initially test for are the TTG and the genetic marker. Did you have those tests done?

Oh wow, it's great that you've been diagnosed. I started the gluten diet myself because it has been the only thing to completely get rid of my symptoms! I saw a doctor today who wants me to eat a gluten filled diet for two weeks and then have blood tests, because she thinks I have IBS not a gluten intolerance. She chose to ignore the vast majority of my symptoms and pick out the ones that relate to IBS, so I am very confused!

Do I eat gluten and make myself sick again just to have blood work and tests done, or do I stick to my diet after finally seeing results and ignore the tests? I'm so confused :(

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It does take a very long time, and it usually involves fatigue, brain-fog, anxiety and dizzy spells.. for a long.. looong time, to the extent that you'll be doubting that you've gotten glutened again.

It took me months to feel better when I first went gluten-free, and it now takes three weeks if I get glutened by accident (but this highly differs from person to person).

I think though that you recover from these symptoms faster when you're taking probiotics and supplements.. I've still not been to the doc so don't take anything, which means my case is different from yours if you take supplements and probiotics.. That's also putting aside how much symptoms differ from person to person.

Don't worry, the light in the end of the tunnel will eventually show :-)

I am starting to feel better after being gluten free for two weeks. Did you diagnose yourself and get better after going gluten free? Or did you see a doctor? I'm not sure what the best thing for me to do is!

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Oh wow, it's great that you've been diagnosed. I started the gluten diet myself because it has been the only thing to completely get rid of my symptoms! I saw a doctor today who wants me to eat a gluten filled diet for two weeks and then have blood tests, because she thinks I have IBS not a gluten intolerance. She chose to ignore the vast majority of my symptoms and pick out the ones that relate to IBS, so I am very confused!

Do I eat gluten and make myself sick again just to have blood work and tests done, or do I stick to my diet after finally seeing results and ignore the tests? I'm so confused :(

I don't want to give advice that will make you feel sick :) but I know myself and personally, I would want the blood test to confirm if the antibodies are present. Given the fact that I can be anxious at times already I would be scared to self-diagnose and and god forbid new symptoms pop up - I would question the diagnosis all over again. I think its at your own comfort level and I'm not sure how bad your GI symptoms are to begin with when you're exposed to gluten, but I know I would personally feel more comfortable with the blood tests being completed. In fact, I'm considering having some gluten next week before my endoscopy just to give me a better chance to have a conclusive diagnosis. But again this is a very personal choice and I dont want to lead you in the wrong direction. I think you need to figure out for yourself how important it is for you to have a conclusive diagnosis. I hope this helps!

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I don't want to give advice that will make you feel sick :) but I know myself and personally, I would want the blood test to confirm if the antibodies are present. Given the fact that I can be anxious at times already I would be scared to self-diagnose and and god forbid new symptoms pop up - I would question the diagnosis all over again. I think its at your own comfort level and I'm not sure how bad your GI symptoms are to begin with when you're exposed to gluten, but I know I would personally feel more comfortable with the blood tests being completed. In fact, I'm considering having some gluten next week before my endoscopy just to give me a better chance to have a conclusive diagnosis. But again this is a very personal choice and I dont want to lead you in the wrong direction. I think you need to figure out for yourself how important it is for you to have a conclusive diagnosis. I hope this helps!

Your signature says you were diagnosed in May. What is the purpose of your endoscopy? If your blood tests were positive then it's a positive. I refused endoscopy after positive blood tests. What is the point of invasive surgical procedures just to confirm what we already know. My son's pediatrician doesn't use endoscopy unless she absolutely feels a need. She diagnoses by blood tests or dietary response. If your bloods were positive and you feel better off of gluten, and you get sick when you eat gluten what more conclusive evidence do you need?

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Your signature says you were diagnosed in May. What is the purpose of your endoscopy? If your blood tests were positive then it's a positive. I refused endoscopy after positive blood tests. What is the point of invasive surgical procedures just to confirm what we already know. My son's pediatrician doesn't use endoscopy unless she absolutely feels a need. She diagnoses by blood tests or dietary response. If your bloods were positive and you feel better off of gluten, and you get sick when you eat gluten what more conclusive evidence do you need?

I understand that it seems redundant and pointless, however I'm curious to see how flattened my villi are. Since I dont have typical GI celiac symptoms (pain, D, nausea), I'm hoping that this will give me a better indication of when the onset was. Plus, my doctor wants to do a colonoscopy anyway due to other symptoms, so I figured I'd rather have it all done at once and maybe get some answers.

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I am starting to feel better after being gluten free for two weeks. Did you diagnose yourself and get better after going gluten free? Or did you see a doctor? I'm not sure what the best thing for me to do is!

I am self-diagnosed (but my doc appointment is in a few days), and while I did feel better in the beginning, I went downhill afterwards because I am lacking supplements and I started reacting to other foods. It would have been impossible for me to understand any of it if it weren't for the people on this forum, but I'm still going through difficulties because I'm in need of supplements and probiotics that pharmacies can't offer, so I need a doc's help in order to start feeling well. I also would like to be diagnosed so that my family members will stop saying that I'm making it up because no doctor told me to do what I'm doing.

You might might be able to manage your health by taking advice from the people here, because they lived through it and know more about it than anyone else, but there might also be certain situations that you will need medical help for.

Getting a diagnosis really depends on your needs. Do your family members and friends take you seriously? Will you be needing proof to show that you need to bring your own food in certain situations, and can you do all the blood-work and tests to see if you have any secondary problems without a diagnosis?

You've only been gluten-free for two weeks, which means your reaction might not hit you too hard if you go back to gluten now, but it's your decision of course.

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I am self-diagnosed (but my doc appointment is in a few days), and while I did feel better in the beginning, I went downhill afterwards because I am lacking supplements and I started reacting to other foods. It would have been impossible for me to understand any of it if it weren't for the people on this forum, but I'm still going through difficulties because I'm in need of supplements and probiotics that pharmacies can't offer, so I need a doc's help in order to start feeling well. I also would like to be diagnosed so that my family members will stop saying that I'm making it up because no doctor told me to do what I'm doing.

You might might be able to manage your health by taking advice from the people here, because they lived through it and know more about it than anyone else, but there might also be certain situations that you will need medical help for.

Getting a diagnosis really depends on your needs. Do your family members and friends take you seriously? Will you be needing proof to show that you need to bring your own food in certain situations, and can you do all the blood-work and tests to see if you have any secondary problems without a diagnosis?

You've only been gluten-free for two weeks, which means your reaction might not hit you too hard if you go back to gluten now, but it's your decision of course.

I've booked another doctors appointment and keeping a food diary until then, still going gluten free and feeling so much better every day!

How did your appointment go with the doctor? Any closer to being officially diagnosed?

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I've booked another doctors appointment and keeping a food diary until then, still going gluten free and feeling so much better every day!

How did your appointment go with the doctor? Any closer to being officially diagnosed?

It went horribly. The doc was pushy and wasn't listening. I also didn't get the chance to talk about all the things I needed. I hope yours goes better. If you end up with a pushy doc, be as stubborn as you can, and don't leave without making sure you've said everything you wanted to say!

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I have had the exact same symptoms, about a week or so after going gluten-free, I had terrible dizzy spells, low blood sugar, etc. Eating every couple of hours seemed to help. The dizzy spells only lasted three days. I went to the walk in clinic and I think the Dr. thought I was crazy (my blood sugar was really low). Now it is 2.5 weeks later (a month now gluten-free) and the dizzy spells, brain fog, etc. have come back, almost worse than before. I feel like my head is floating in a fog, I also feel nauseated after eating. I feel better knowing I am not the only one, I thought I was over it and I'm scared these symptoms have come back. I have not felt any better since going gluten-free (I only have hypothyroid symptoms, no GI symptoms) and I hope this changes soon!

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I have been really sick for a long time but I didn't expect to feel this bad going off gluten. Maybe the longer you've been sick the worse it is going off it. For the first week I felt great because the diarrhea stopped within two days of quitting gluten. Then I became constipated. Then I started to feel horrible. Finally it dawned on me! I looked it up on the web and here and sure enough those are my symptoms. I have an appreciation now for people who quit drugs cold turkey.

The pains in my head were like lightening bolts and when one hit I thought I could feel my head move. I've had migraines my whole life and never had pains like this. Then I had trouble with double vision and brain fog. I've been nauseous and teary eyed about everything. Sugar cravings, dizziness, my joints hurt...and on and on. Sounds about right doesn't it? I think if I had to do this over I would do it slowly.

...but, there's no turning back. I'm still eating dairy but I can only do so many things at once. I went to the market today and bought a bunch of fresh fruits and veggies for my juicer. Can't get glutened like that. I'm better today than yesterday.

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6 years ago I was forced to go on a gluten free diet when my throat closed after eating a doughnut for my healthy breakfast. However, before my throat closed i had constantly had problems with my digestive tract when i ate gluten. I am currently 19 years old and ever since I was 13 i have lived with a rare anaphylactic allergy to gluten. Because of this i was made to abruptly change my diet and i went through about a 2 year period of with drawl symptoms. My stomach remained distended for months upon months. I was dizzy and constantly tired. I felt as though I had not energy to even go to school. I eyes also became very sensitive to the sun and i felt as though i was hungry all the time. However, around the third year things started to feel a lot better and i started to feel all the "positive" feelings that came from a gluten free diet. Good luck!

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