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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? - 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 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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tennisman

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Hi , I was diagnosed with celiac disease in 2003 and the last 8 years I have had a lot of other health problems mainly back and stomach problems . After about a year and a half on the gluten-free diet I started getting depression and anxiety nothing to bad just a couple of days but the last few years since really since late 2008 it's been getting worse and worse , I have been to counselling many times and I'm currently going at the moment . I was told by the counsellor I need tablets for depression and anxiety . I have been to my GP and have been prescribed Citalopram but I really don't want to take it because of all the side effects.

I'm 100 % sure my depression and anxiety is related to celiac disease or maybe a vitamin deficiency ? I have got a vitamin D deficiency and haven't been able to take vitamin D since february because of kidney stones . But I wonder about other vitamin deficiencies causing the anxiety or depression is that likely ?

I have also read many article's about having celiac disease causing depression and anxiety . I just want to drink alcohol as that helps my stomach and my mind but that's not a good solution . I think it's the gluten-free diet that caused all the problems and after almost 10 years i'm really fed up with the gluten-free diet I really hate celiac disease. Does anyone have any advice to what is causing the depression and anxiety and if it could be connected to celiac disease or some vitamin deficiencies etc ?

Thanks :)

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It may not be the case for you but for me it was realized that my main issue was the anxiety. I was a bit depressed but that was a direct result of the anxiety issues not due to a brain imbalance. When given the drugs that are combo drugs for both I not only didn't get any better I got worse. Once the anxiety was taken care of I was then able to do more of the things I wanted to do without fear and life became much better. I take a minimal dose of alprazolam (generic Xanax cause the name brand is not gluten free) and I have my life back.

Have you had your doctor check for other vitamin deficiencies? Sometimes stress level B's might help. When you were taking D was it one that is just D or did it have calcium in it? If it had calcium talk to your doctor about taking just D3.

You mention drinking makes you feel better. What are you drinking? Some of us will have trouble with distilled gluten grains even though most tolerate them. If you are drinking a distilled gluten can you try drinking something else? Or doing something like going for a walk or doing another activity instead of taking a couple of drinks.

Also take a good look at what and where you are eating to see if any gluten could possibly be sneaking in. When we have neuro effects from gluten we many times have to be super strict with the diet which does mean going with as clean of a diet as possible.

I know how tough these issues are and hope you can find something that helps you feel better.

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I agree, B-vitamins may help and cutting out alcohol can help too. It wouldn't hurt to go to a doctor and get your vitamin levels checked. Soy or nightshades may cause symptoms too.

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I can relate to some of what you are going through.

I spent at least 15 years undiagnosed. I ate and drank the things that were damaging me as they caused me momentary relief.

I'm only diagnosed for a couple of weeks, so I don't know what the future holds for me.

My problem is that I don't absorb any nutrients, so taking a vitamin is useless.

I'm hoping that changes in the coming weeks.

I think it is, because I'm noticing I don't need to eat as much - I can eat a little meal and I'm not hungry again for hours. I can start re-introducing exercise already. I went to the gym and did a brisk walk on the treadmill for an hour - this would have left me in bed for 2-3 days just few months ago before I was completely bedridden. I was up at 5am and felt the normal pain of a workout, not the excruciating pain that I'd come to know. To think I ran marathons at a 7 minute mile pace just 15 years ago would be impossible for anybody that saw me today could believe.

I lost my job, I lost my wife - people only will stick by you so long before they write you off as a lost cause.

Keep going to the DR. and ask for specific blood tests - like hypothyroid panel - something in addition to gluten is causing your body to not process nutrients.

I know at my worst these past 6 months all I wanted to do was drink - just enough to numb the mind.

That will not fix anything, and will create problems of its own - it's just another grain and I'm seeing grains aren't good for me, you, us.

I hope I am near the end of my dark tunnel, and I hope that you can get some discovery going in your own world. Then I will play you at Tennis, TennisMan.

Ron

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It may not be the case for you but for me it was realized that my main issue was the anxiety. I was a bit depressed but that was a direct result of the anxiety issues not due to a brain imbalance. When given the drugs that are combo drugs for both I not only didn't get any better I got worse. Once the anxiety was taken care of I was then able to do more of the things I wanted to do without fear and life became much better. I take a minimal dose of alprazolam (generic Xanax cause the name brand is not gluten free) and I have my life back.

Have you had your doctor check for other vitamin deficiencies? Sometimes stress level B's might help. When you were taking D was it one that is just D or did it have calcium in it? If it had calcium talk to your doctor about taking just D3.

You mention drinking makes you feel better. What are you drinking? Some of us will have trouble with distilled gluten grains even though most tolerate them. If you are drinking a distilled gluten can you try drinking something else? Or doing something like going for a walk or doing another activity instead of taking a couple of drinks.

Also take a good look at what and where you are eating to see if any gluten could possibly be sneaking in. When we have neuro effects from gluten we many times have to be super strict with the diet which does mean going with as clean of a diet as possible.

I know how tough these issues are and hope you can find something that helps you feel better.

I think my anxiety is probably worse than my depression , I think the depression is probably due to all the ongoing health problems I have but the anxiety could be caused by a few things . I have read on anxiety / depression forums the tablets can make worse and have some nasty side effects , it seems kinda wrong risking new symptoms and getting worse to get better . Did it take long to get rid of the anxiety ?

No I did check magnesium levels once but haven't checked anything else apart from vitamin D . When my GP said I had a vitamin D deficiency she thought I may also have vitamin A , K and E deficiencies but she left and I never got them tested most doctor's don't listed when I say about vitamin deficiencies . I'm not sure really I was taking Adcal D3 lemon tablets I will have to take a look , I wouldn't mind getting injections but no doctor's have offered vitamin D injections yet .

I drink cider I usually stick to a couple of brands and check online to make sure they are gluten-free some brands have suitable for coeliac's on them . Many people suggest walking but because of my anxiety I really don't like going out and it usually makes things worse , I did buy a swingball for light exercise but it's difficult to use as my stomach is hurting most of the time , I have been trying to learn italian for something to do but find it very difficult to concentrate .

I think my diet is very strict I have had tests to see if i'm accidentally eating any gluten always come back normal , I find these days i'm eating more fresh foods but seem to be allergic to a lot of fruit which is annoying , I don't eat out a lot . I have been making gluten-free cakes as I find that quite relaxing and enjoyable .

Thanks , and Thanks for the reply :)

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I agree, B-vitamins may help and cutting out alcohol can help too. It wouldn't hurt to go to a doctor and get your vitamin levels checked. Soy or nightshades may cause symptoms too.

I will ask my doctor about B vitamins , I see some gluten-free products I get on prescription from Juvela have vitamin B added too them but I don't get the products much only a couple every 6 weeks . I have cut alcohol out for a while before but it didn't make any difference really . I have done a few elimination diets with the dietcian and potatoes was something we tested seems i'm ok with them and I don't really eat many other nightshades or soy . I do have a problem with some fruit such as pears , peaches , uncooked apples , I get a sore throat and a little swelling but doesn't seem to affect my stomach . I am going to an allergy clinic soon to test the fruits and a possible latex allergy I have read certain foods can hurt the stomach with the latex allergy

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I can relate to some of what you are going through.

I spent at least 15 years undiagnosed. I ate and drank the things that were damaging me as they caused me momentary relief.

I'm only diagnosed for a couple of weeks, so I don't know what the future holds for me.

My problem is that I don't absorb any nutrients, so taking a vitamin is useless.

I'm hoping that changes in the coming weeks.

I think it is, because I'm noticing I don't need to eat as much - I can eat a little meal and I'm not hungry again for hours. I can start re-introducing exercise already. I went to the gym and did a brisk walk on the treadmill for an hour - this would have left me in bed for 2-3 days just few months ago before I was completely bedridden. I was up at 5am and felt the normal pain of a workout, not the excruciating pain that I'd come to know. To think I ran marathons at a 7 minute mile pace just 15 years ago would be impossible for anybody that saw me today could believe.

I lost my job, I lost my wife - people only will stick by you so long before they write you off as a lost cause.

Keep going to the DR. and ask for specific blood tests - like hypothyroid panel - something in addition to gluten is causing your body to not process nutrients.

I know at my worst these past 6 months all I wanted to do was drink - just enough to numb the mind.

That will not fix anything, and will create problems of its own - it's just another grain and I'm seeing grains aren't good for me, you, us.

I hope I am near the end of my dark tunnel, and I hope that you can get some discovery going in your own world. Then I will play you at Tennis, TennisMan.

Ron

It's not fun is it , sorry it took you so long to get diagnosed . You should start to absord better once your villi have healed . Do you think vitamin injections would help you absorb ?

That's good you can start exercising again hopefully you will be running the marathons again soon . Sorry about your job and your wife . I feel like a write myself off a lot , most people don't actually believe I have health problems they just think i'm being lazy :S Which is kinda annoying if only we could pass celiac disease onto other people :)

I will ask the doctor about the hypothyroid panel and the vitamin deficiencies . I find drinking calms the stomach pain down usually 1 drink before dinner helps the mind and stomach and don't really drink a lot when I drink just one or two . I drink cider so no grains just apples .

I too hope you get things sorted Ron , Thanks and I look forward to having a tennis match , I really miss playing tennis maybe one day I will play again :)

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Hi Tennisman,

Just wondering about apples for you. You said you react to a lot of fruits now? Cider/apples could be a problem there. I have a problem with grapes myself. Any grapes, including raisins, jelly, jam, wine. They all cause a reaction for me. Goodbye Pamela's gluten-free peanut butter cookies, sweetened with grape juice! :-(

I've been there on drinking to ease the pain. Definitely makes for a nice short term solution. But in the end it leads to more pain. Alcohol is very hard on the digestive system, and it can prevent healing IMHO. It sure did a number on me with the wine making me sick due to the grapes in it.

Something else that might be causing you problems is H.Pylori. They can do tests for it now to detect it. If you do have it that might be causing some pain and digestion problems. I treated it with mastic gum. Took a while but it worked. So, just some things to think about.

@ Ron,

Hi Ron,

I am sorry to hear about your problems. Celiac can play heck with our lives. At least now you know what the problem has been and can start on the road to better health. So that's good. There are some sub-lingual options for vitamins, like B-12. It disolves in the mouth so it can start to be absorbed there, in theory. Probiotics, and digestive enzymes may help while healing. Another thing is to avoid sugar and starchy carbs, which turn into sugar very quickly. Bacteria in the gut can get out of whack with all the changes from gluten-free eating, and they love to eat sugars and multiply. Which can make us pretty uncomfortable.

Once you have been on the diet for year or so you may feel better in many ways. Your gut should be absorbing fine by then if you follow a strict gluten-free diet. The tricky thing is we tend to develop other food intolerances, or they start to show up and make themselves felt more obviously after going gluten-free. Doesn't happen to everyone though, and they are sometimes temporary.

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Hi Tennisman,

Just wondering about apples for you. You said you react to a lot of fruits now? Cider/apples could be a problem there. I have a problem with grapes myself. Any grapes, including raisins, jelly, jam, wine. They all cause a reaction for me. Goodbye Pamela's gluten-free peanut butter cookies, sweetened with grape juice! :-(

I've been there on drinking to ease the pain. Definitely makes for a nice short term solution. But in the end it leads to more pain. Alcohol is very hard on the digestive system, and it can prevent healing IMHO. It sure did a number on me with the wine making me sick due to the grapes in it.

Something else that might be causing you problems is H.Pylori. They can do tests for it now to detect it. If you do have it that might be causing some pain and digestion problems. I treated it with mastic gum. Took a while but it worked. So, just some things to think about.

Hi GFinDC

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@ Ron,

Hi Ron,

I am sorry to hear about your problems. Celiac can play heck with our lives. At least now you know what the problem has been and can start on the road to better health. So that's good. There are some sub-lingual options for vitamins, like B-12. It disolves in the mouth so it can start to be absorbed there, in theory. Probiotics, and digestive enzymes may help while healing. Another thing is to avoid sugar and starchy carbs, which turn into sugar very quickly. Bacteria in the gut can get out of whack with all the changes from gluten-free eating, and they love to eat sugars and multiply. Which can make us pretty uncomfortable.

Once you have been on the diet for year or so you may feel better in many ways. Your gut should be absorbing fine by then if you follow a strict gluten-free diet. The tricky thing is we tend to develop other food intolerances, or they start to show up and make themselves felt more obviously after going gluten-free. Doesn't happen to everyone though, and they are sometimes temporary.

'GFinDC',

Thanks for your input.

Yes, just 10 days so far, so still having issues - constipated the past 2 days. Was painful last night, but had some movement this morning.

I purchased some sub-lingual B12 last week and have been taking that daily since but still don't get any boost at all. At that time I also purchased some Culturrelle Probiotic capsules. Have been taking them daily, as well.

I'm currently stuck eating packaged foods, and have dined out at restaurants that understand gluten free twice. I have a shared kitchen with a roommate and he is a total neanderthal, so I'm also looking for a place to live solo but that will take at least a month, maybe two.

I know this will be harder before it gets easier, but having this wreck the perfect life I had diligently created over decades - I know I can get through hard, and yes, having a known enemy helps significantly. Healing, both physical and mental, can finally begin.

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Hi GFinDC ,

I first noticed reacting to fruits in 2008 at the same time my latest stomach problems started up and I have always wondered if there is a connection. But the reacting to fruits seems more like an allergic reaction with the sore throat and a little lip swelling but maybe it could affect the stomach too , my dietican didn't think it would as he said it sounds more like an allergic than an intolerance reaction . My pain never seems to get worse after drinking cider and I tried cooked apples in a cake last year and had no problems so it could be a certain type of apple or maybe the fruits are sprayed with something or possibly handled with latex gloves which is causing the problem . I'm going for allergy testing next month so maybe that could provide some answers. Sorry you have a problem with grapes how did you find that out through tests or you worked it out yourself ?

I think I have had the test for H.Pylori and it came back negative could be worth repeating the test as I think it was a few years ago . Thanks for the advice :)

Hi T-Man,

One of my visible symptoms is swelling in my feet and ankles. If I get into something that sets off a reaction that is the first outward sign. So I figured out the grapes by a simple test, no swollen feet and ankles without them, swollen feet and ankles with them. I had eliminated wine for several months a couple years ago. But I didn't stop all grapes. I really thought it was the wine itself. So I was still eating grapes, and raisins etc. I was somewhat better but not completely. So after a while I started the wine again. Didn't notice a big change But things got worse so I stopped it again. Then after a while I tried something, grapes or raisins and had a reaction. Tested it again a few days later and same thing. So that clinched if for me. It's nice in a way if you have a clear symptom since it helps to identify the problem. So, the alcohol in the wine wasn't causing my swollen feet and ankles it was the grapes it was made from.

Fructose malabsorption is kind of like lactose intolerance I think. That's more of a GI distress thing. It does sound like you are having an allergic reaction to the fruits instead. It will be interesting to see what the allergist find out. Are they going to test you for fruits? That sounds kind of funny. :)

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'GFinDC',

Thanks for your input.

Yes, just 10 days so far, so still having issues - constipated the past 2 days. Was painful last night, but had some movement this morning.

I purchased some sub-lingual B12 last week and have been taking that daily since but still don't get any boost at all. At that time I also purchased some Culturrelle Probiotic capsules. Have been taking them daily, as well.

I'm currently stuck eating packaged foods, and have dined out at restaurants that understand gluten free twice. I have a shared kitchen with a roommate and he is a total neanderthal, so I'm also looking for a place to live solo but that will take at least a month, maybe two.

I know this will be harder before it gets easier, but having this wreck the perfect life I had diligently created over decades - I know I can get through hard, and yes, having a known enemy helps significantly. Healing, both physical and mental, can finally begin.

Hi Ron,

Good deal on the pro-biotics. I get a lot of Solgar brand vitamins since they do a good job labeling them for allergens. Or Nature Made.

Another thing that may help is to try some Betaine HCL once a week. It turns to stomach acid and can help with digestion and killing off stomach bugs. T-Man might try it some too.

I am adding a link to the CSA (Celiac Sprus Association) chapter index. They may have local meetings where you could get info on doctors or stores to shop at etc.

Things might be rough for a while starting out. It is real easy to make a mistake with gluten at first, and cross contamination can be a problem too. Hopefully it will go smoother for you after a month or two or sooner. But be patient with your body, as it takes time for it to heal damage. Some research says up to 18 months.

CSA chapters

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Hi T-Man,

One of my visible symptoms is swelling in my feet and ankles. If I get into something that sets off a reaction that is the first outward sign. So I figured out the grapes by a simple test, no swollen feet and ankles without them, swollen feet and ankles with them. I had eliminated wine for several months a couple years ago. But I didn't stop all grapes. I really thought it was the wine itself. So I was still eating grapes, and raisins etc. I was somewhat better but not completely. So after a while I started the wine again. Didn't notice a big change But things got worse so I stopped it again. Then after a while I tried something, grapes or raisins and had a reaction. Tested it again a few days later and same thing. So that clinched if for me. It's nice in a way if you have a clear symptom since it helps to identify the problem. So, the alcohol in the wine wasn't causing my swollen feet and ankles it was the grapes it was made from.

Fructose malabsorption is kind of like lactose intolerance I think. That's more of a GI distress thing. It does sound like you are having an allergic reaction to the fruits instead. It will be interesting to see what the allergist find out. Are they going to test you for fruits? That sounds kind of funny. :)

Hi GFinDC ,

Good job figuring out the grapes problem , must have been great to figure it out :)

Yeh :) I hope the allergy clinic will test me for the fruits , I'm going for latex allergy testing but will make sure I bring fruit with me could be interesting . I kinda wanna test wheat too just incase as I think I had the same sore throat reaction from some gluten-free bread with the codex wheat starch in , don't usually eat products with it in but have never had that reaction before . If my results are negative with the fruit it most probably is something that is sprayed on fruit causing the problem . My sister had allergy testing last year lots of fruits all came back negative . I asked my Mum to ask the doctor about getting my sister tested for celiac disease some time and the doctor doing the allergy testing did a wheat test on her that was negative and he said she didn't have celiac disease .... Luckily we found a different doctor to do the celiac disease properly .

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