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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Kirstie

Just Started Gluten Free Diet, Withdrawal Symptoms?

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Hi Everyone :)

For the past few years I've been struggling with a large range of seemingly unrelated symptoms. Nausea, bloating, constipation and sometimes diarrhoea, fatigue, amenmia, random bouts of vomiting (especially after eating pasta or a lot of bread) excess mucus (nose constantly running) bad cramps, and general aches, pains, mental fog and headaches! I'm only 19 years old and although I have always eaten healthy (always avoid fried, fatty foods, eat plenty of fruit and veg and drink tons of water) I have always been so sickly and unwell. I'm only 5'2, very pale and have always been told I am underweight by doctors.

I am really so tired of feeling this way and so frustrated with my body. But I've been to the doctors countless times in the past few years and not one of them has offered any help or guidance. I've been accused of suffering depression, making up the symptoms and having an eating disorder. But I know that is not the problem!

Has anyone else, who has been diagnosed with Gluten Intolerance suffered from symptoms like these?

If anyone could offer me any advice I'd really appreciate it, I'm desperate for answers!

Thank you

Kirstie

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Yes, exactly the same symptoms! Mine started when I was about 17 when I had shingles, I'm now 27 and just this year got a positive biopsy, although my Celiac blood panel was negative. I've met with countless doctors over the years and they just say, IBS, acid reflux, depression, chronic headaches, etc. The last doctor I saw was supposed to be a "specialist" but he was so blatantly rude, I left there so pissed off. After that, I immediately started a gluten free diet. I'm on day 14 and have had some withdrawal symptoms of headaches everyday and I'm not sure if this is related, but my back and neck continue to go out of wack, so I've seen the chiropractor every week lately. I know my body is just trying to get all of the toxins out, but I have noticed that my BMs are half way "normal" and I haven't had any acid reflux. Get testing done before you go gluten free but if doctors refuse, it's worth a try to take a few months and just see how you feel. Good luck!

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Yes, exactly the same symptoms! Mine started when I was about 17 when I had shingles, I'm now 27 and just this year got a positive biopsy, although my Celiac blood panel was negative. I've met with countless doctors over the years and they just say, IBS, acid reflux, depression, chronic headaches, etc. The last doctor I saw was supposed to be a "specialist" but he was so blatantly rude, I left there so pissed off. After that, I immediately started a gluten free diet. I'm on day 14 and have had some withdrawal symptoms of headaches everyday and I'm not sure if this is related, but my back and neck continue to go out of wack, so I've seen the chiropractor every week lately. I know my body is just trying to get all of the toxins out, but I have noticed that my BMs are half way "normal" and I haven't had any acid reflux. Get testing done before you go gluten free but if doctors refuse, it's worth a try to take a few months and just see how you feel. Good luck!

Thank you so much for replying, I'm relieved that I have probably found the root of my problems! Yes, not one doctor has been able to diagnose me, most just blow it off and I'm left feeling sick and angry!

How were you diagnosed with Celiac? I have began a Gluten Free diet and been on it a week now and I'm already feeling better, but suffering from withdrawal symptoms like a lot of other people! I realised that I shouldn't have gone gluten free without being diagnosed properly, but I've been so unwell and not one doctor has managed to help! So I'm switching surgery's next week and hoping to see someone then.

What withdrawal symptoms have you been suffering from?

Thank you again!! :)

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Yes.

Have you requested a full panel of Celiac tests from a doctor? Have them run and see what comes up.

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf.

I haven;t because up until two weeks ago I didn't know what a gluten intolerance was! Although I have started a gluten free diet and been on it for a week and already feeling better, I will go again to a new doctor and see what they say!

Thanks for your advice

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Thank you so much for replying, I'm relieved that I have probably found the root of my problems! Yes, not one doctor has been able to diagnose me, most just blow it off and I'm left feeling sick and angry!

How were you diagnosed with Celiac? I have began a Gluten Free diet and been on it a week now and I'm already feeling better, but suffering from withdrawal symptoms like a lot of other people! I realised that I shouldn't have gone gluten free without being diagnosed properly, but I've been so unwell and not one doctor has managed to help! So I'm switching surgery's next week and hoping to see someone then.

What withdrawal symptoms have you been suffering from?

Thank you again!! :)

Since November I have just continued to get a lot sicker and demanded a colonoscopy and scope. I had to ask for the Celiac biopsy, which came back with "villous atrophy" which means the villi are flattened and damaged. They then did the Celiac blood panel but that came back negative. I've heard of a lot of false negatives and all of my symptoms point to gluten so I either have Celiac or Non-celiac gluten intolerance. Either way, the treatment is a gluten free diet. I was just sick and tired of doctors saying it's just IBS which they don't know what causes it and you can only treat the symptoms which obviously wasn't working.

I feel like I wasn't listening to my body so now it's really speaking up and saying, "HEY! you're poisoning me! If you won't listen to me, I'll make things worse and really knock you on your butt!" So I'm finally listening and trying Gluten Free. At some point you just realize you don't need a piece of paper or doctor saying you have "whatever it is" and you take matters into your own hands. If gluten free doesn't make me feel better after a few months, then I'll consider going back for more testing.

My main withdrawal symptom is headaches everyday for the 2 weeks I've been gluten free. Hopefully it'll subside soon.

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Since November I have just continued to get a lot sicker and demanded a colonoscopy and scope. I had to ask for the Celiac biopsy, which came back with "villous atrophy" which means the villi are flattened and damaged. They then did the Celiac blood panel but that came back negative. I've heard of a lot of false negatives and all of my symptoms point to gluten so I either have Celiac or Non-celiac gluten intolerance. Either way, the treatment is a gluten free diet. I was just sick and tired of doctors saying it's just IBS which they don't know what causes it and you can only treat the symptoms which obviously wasn't working.

I feel like I wasn't listening to my body so now it's really speaking up and saying, "HEY! you're poisoning me! If you won't listen to me, I'll make things worse and really knock you on your butt!" So I'm finally listening and trying Gluten Free. At some point you just realize you don't need a piece of paper or doctor saying you have "whatever it is" and you take matters into your own hands. If gluten free doesn't make me feel better after a few months, then I'll consider going back for more testing.

My main withdrawal symptom is headaches everyday for the 2 weeks I've been gluten free. Hopefully it'll subside soon.

Where the tests painful at all? I'm definitely going to a doctor because I feel so frustrated with it all! It seems like many people feel this way, but doctors obviously don't know much about it.

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It is very hard to find a doctor who knows anything about it. I had the colonoscopy and scope at the same time, so I was put under with IV sedation, so I don't remember a thing. I think if you just get the scope/biopsy they might not put you clear under, but I've heard it's not bad and doesn't hurt. Talk to the doctor before hand and make sure he will take at least 10-12 different samples during the biopsy for accurate results. If you are lucky enough to find a doctor who knows about celiac, then they should know that.

Have them draw enough blood to do all of the Celiac blood panel so that you only have to have it drawn once. Also have them do genetic testing to see if you have the gene that says you are likely to have Celiac.

Since you've only been gluten free for a week, I'd try eating gluten until you can have those tests done, otherwise they are pointless to do. I've read that you only need to eat about 1 to 2 slices of bread a day to have enough gluten to get accurate test results. I know it might make you feel like crap again, but hopefully you can get in soon.

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It is very hard to find a doctor who knows anything about it. I had the colonoscopy and scope at the same time, so I was put under with IV sedation, so I don't remember a thing. I think if you just get the scope/biopsy they might not put you clear under, but I've heard it's not bad and doesn't hurt. Talk to the doctor before hand and make sure he will take at least 10-12 different samples during the biopsy for accurate results. If you are lucky enough to find a doctor who knows about celiac, then they should know that.

Have them draw enough blood to do all of the Celiac blood panel so that you only have to have it drawn once. Also have them do genetic testing to see if you have the gene that says you are likely to have Celiac.

Since you've only been gluten free for a week, I'd try eating gluten until you can have those tests done, otherwise they are pointless to do. I've read that you only need to eat about 1 to 2 slices of bread a day to have enough gluten to get accurate test results. I know it might make you feel like crap again, but hopefully you can get in soon.

Okay that's great, thank you for your advise I will write it all down and mention it when I see a doctor.

Are you seeing a dietician now you have been diagnosed? How are finding sticking to a gluten free diet?

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... Since you've only been gluten free for a week, I'd try eating gluten until you can have those tests done, otherwise they are pointless to do. I've read that you only need to eat about 1 to 2 slices of bread a day to have enough gluten to get accurate test results. ...

One slice of bread only contains 2.5g of gluten.

According to my doctor, after being gluten free, for accurate test results one must eat 30g/day gluten for at least 6 weeks (but 3 months is the recommended period).

That is about 2-3 times a normal consumption amount.

Gluten powder (75% gluten) is an easy way to eat that much, if you can stand the taste of it and your body's reaction to it.

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One slice of bread only contains 2.5g of gluten.

According to my doctor, after being gluten free, for accurate test results one must eat 30g/day gluten for at least 6 weeks (but 3 months is the recommended period).

That is about 2-3 times a normal consumption amount.

Gluten powder (75% gluten) is an easy way to eat that much, if you can stand the taste of it and your body's reaction to it.

But I've only been on a gluten free diet a week (and have accidentally eaten gluten a few times anwyay!) and I'm seeing the doctor on Monday and organising a test soon, surely since I've eaten gluten my entire life a week won't do much harm!

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But I've only been on a gluten free diet a week (and have accidentally eaten gluten a few times anwyay!) and I'm seeing the doctor on Monday and organising a test soon, surely since I've eaten gluten my entire life a week won't do much harm!

You'd be surprised at how fast those antibodies can leave your system. The celiac tests are not that sensitive to begin with. They are fraught with problems because of so many false negatives. So if you are gluten free for a week, your tests might come back negative yet you could still have celiac.

Endoscopy is also fraught with problems, but it might show up celiac. Trouble is, they usually don't rush that. It takes weeks or even months to get the appointment.

This is your dilemma. You have had immediate positive results from the gluten free diet. Going back on gluten is probably going to make you very sick. So what do you?

Here is what I would do. You have to make your own decision after weighing all the pros and cons. I would get the blood tests right away, but I would not go back on gluten. To me it wouldn't be worth the suffering and potential damage of eating gluten for a few months to get a test result. There are some doctors who actually have a clue who will diagnose by dietary response. Whether or not you have that doc remains to be seen.

There is much discussion about whether there really is gluten intolerance or if it's all just celiac and the tests aren't sensitive enough. MY opinion, maybe not other people's, is that in the future they are going to devise better testing and find out that lo and behold all those intolerant people do have celiac afterall. Or they will find a different kind of celiac that doesn't show up on the crappy tests.

So for me, if I were in your shoes I would be thrilled that I have relief from the diet and I would call myself celiac and move forward with my life.

If you choose to diagnose by diet either in cooperation with a doc or on your own, you must NEVER tell family and friends the particulars. Always tell them you had a positive blood test because otherwise you will get people giving you crap, not believing you, not supporting you or worse, glutening you on purpose to prove you are wrong. I've seen it all and more on this board.

My son's tests came up negative and doc diagnosed him by dietary response. My husband, myself and the pediatrician are the only people who know that. It's nobody else's business.

Also, any new doctors are not going to ask for "proof" you have celiac anymore than they would ask for it for another disease. I go to a new doc and say I have hypothyroidism, they give me refills on my meds. Make your life easier and just say you have celiac. Nobody takes gluten intolerance seriously unless they are the ones who have it and are on the toilet all the time.

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You'd be surprised at how fast those antibodies can leave your system. The celiac tests are not that sensitive to begin with. They are fraught with problems because of so many false negatives. So if you are gluten free for a week, your tests might come back negative yet you could still have celiac.

Endoscopy is also fraught with problems, but it might show up celiac. Trouble is, they usually don't rush that. It takes weeks or even months to get the appointment.

This is your dilemma. You have had immediate positive results from the gluten free diet. Going back on gluten is probably going to make you very sick. So what do you?

Here is what I would do. You have to make your own decision after weighing all the pros and cons. I would get the blood tests right away, but I would not go back on gluten. To me it wouldn't be worth the suffering and potential damage of eating gluten for a few months to get a test result. There are some doctors who actually have a clue who will diagnose by dietary response. Whether or not you have that doc remains to be seen.

There is much discussion about whether there really is gluten intolerance or if it's all just celiac and the tests aren't sensitive enough. MY opinion, maybe not other people's, is that in the future they are going to devise better testing and find out that lo and behold all those intolerant people do have celiac afterall. Or they will find a different kind of celiac that doesn't show up on the crappy tests.

So for me, if I were in your shoes I would be thrilled that I have relief from the diet and I would call myself celiac and move forward with my life.

If you choose to diagnose by diet either in cooperation with a doc or on your own, you must NEVER tell family and friends the particulars. Always tell them you had a positive blood test because otherwise you will get people giving you crap, not believing you, not supporting you or worse, glutening you on purpose to prove you are wrong. I've seen it all and more on this board.

My son's tests came up negative and doc diagnosed him by dietary response. My husband, myself and the pediatrician are the only people who know that. It's nobody else's business.

Also, any new doctors are not going to ask for "proof" you have celiac anymore than they would ask for it for another disease. I go to a new doc and say I have hypothyroidism, they give me refills on my meds. Make your life easier and just say you have celiac. Nobody takes gluten intolerance seriously unless they are the ones who have it and are on the toilet all the time.

Wow, thank you so much for all of your advise, this really makes sense. You've said exactly what I've been thinking but been unable to articulate!

So far the people I've discussed Celiac with don't think much of it or think I just think I have it, unlike those I've spoken to who are actually sufferers.

I will have blood tests done as soon as I can (even though I hate needles! :( ) and I will continue on a gluten free diet, even though its just been a week, the thought of purposely eating something thats been making me so ill makes me sick!

Thank you again for all of your advice, I agree with what you've said about just telling others I am a celiac regardless of tests, I can imagine others not taking the illness seriously!

What has your experience with doctors been? Mine has been horrible! I have yet to meet one who will listen and take my symptoms seriously, instead of waving me away like a silly girl and blaming it on my period and PMS! :(

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Wow, thank you so much for all of your advise, this really makes sense. You've said exactly what I've been thinking but been unable to articulate!

So far the people I've discussed Celiac with don't think much of it or think I just think I have it, unlike those I've spoken to who are actually sufferers.

I will have blood tests done as soon as I can (even though I hate needles! :( ) and I will continue on a gluten free diet, even though its just been a week, the thought of purposely eating something thats been making me so ill makes me sick!

Thank you again for all of your advice, I agree with what you've said about just telling others I am a celiac regardless of tests, I can imagine others not taking the illness seriously!

What has your experience with doctors been? Mine has been horrible! I have yet to meet one who will listen and take my symptoms seriously, instead of waving me away like a silly girl and blaming it on my period and PMS! :(

Before diagnosis my experience with docs was horrible. My OB thought I had celiac 7 years before my DX, sent me to a GI doc and he talked me out of testing. He was so fatherly and reassuring that there was no way I had celiac. It was just IBS and lactose intolerance and sent me on my way, so happy that I didn't have to do the gluten free diet. I got progressively sicker for years, lots of ER trips and tons of symptoms including dizzy spells, trouble breathing, constant sinus infections, feeling like heart attack, anxiety and panic attacks. I finally ended up in an ER thinking I was dying. I said goodbye to my husband and told him to please take care of our children if I died. The ER doc diagnosed me and saved my life and my sanity.

I had a positive blood test but only on one of the 5 tests they run. I refused endoscopy, went gluten free and never looked back.

Now I get treated great by docs because I'm not in testing hell.

So no matter what NEVER tell a doc you are diagnosed by dietary response. They will not know the difference. I was hospitalized last fall for adrenal insufficiency. Nobody questioned my celiac diagnosis. Nobody asked me for original blood tests. The GI doc said how were you diagnosed. I said blood tests and he marked it on his chart. That was it.

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Before diagnosis my experience with docs was horrible. My OB thought I had celiac 7 years before my DX, sent me to a GI doc and he talked me out of testing. He was so fatherly and reassuring that there was no way I had celiac. It was just IBS and lactose intolerance and sent me on my way, so happy that I didn't have to do the gluten free diet. I got progressively sicker for years, lots of ER trips and tons of symptoms including dizzy spells, trouble breathing, constant sinus infections, feeling like heart attack, anxiety and panic attacks. I finally ended up in an ER thinking I was dying. I said goodbye to my husband and told him to please take care of our children if I died. The ER doc diagnosed me and saved my life and my sanity.

I had a positive blood test but only on one of the 5 tests they run. I refused endoscopy, went gluten free and never looked back.

Now I get treated great by docs because I'm not in testing hell.

So no matter what NEVER tell a doc you are diagnosed by dietary response. They will not know the difference. I was hospitalized last fall for adrenal insufficiency. Nobody questioned my celiac diagnosis. Nobody asked me for original blood tests. The GI doc said how were you diagnosed. I said blood tests and he marked it on his chart. That was it.

Wow you've really struggled with this! It seems like so many doctors don't understand or have much patience with this.

I really appreciate your advise and I'm hoping to see a doctor today, but I'm sticking to a gluten free diet as it makes sense!

I'm still feeling unwell but I realise its only been a week or so gluten free and my body needs to heal after years of eating gluten.

How long did it take you to feel human after going gluten free? Did you have any gluten withdrawal symptoms?

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    • Hi Gemma, Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public   If you're interested in learning more, there's some good resources collected here:  Feel free to add or just post there if you like.  It's great that the diet is working for you. The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope: https://foursquare.com/top-places/berlin/best-places-glutenfree-food https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways? Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better  Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app. And post here, lots of good people with advice and support. Best of luck, Matt  
    • Hi All,  Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear). I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms.  From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?)  The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet).  I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed?    Xxx
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