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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.

Could I Have Had This All My Life?
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24 posts in this topic

Now that I look back through my life...am I just over-obsessing to think that maybe I've been Gluten-intolerant all my life?

I always had "nervous problems" as my parents would call it. When I was a little kid I used to pull at my ear lobe until it was infected, I used to lick my lips and cover them with Chap stick til they were inflammed. I used to scratch my arm til it was pimply and moist. So, what I'm wondering, could I have been mis-diagnosed and maybe I had reactions to Gluten all this time? I always blamed everything on "Allergies". I've always had sinus problems, itchy and watery eyes, rashes.

As I grew older, I've had emotional breakdowns when I was sober and drunk. Mental fog and fatigue, confusion, depression, scattered thoughts, but also times of complete joy and a sense of carefreeness. I mean, I ate bread all my life, fast food, pizza with Ritz crackers was a personal fav!

Basically, I'm trying to figure out is Celiac Disease hereditary from your parents? I had someone tell me on another health site board that because my parents background is from western Europe it's a good possibility.

Could I have had this all my life and not know it or am I just screwed up in a mental sort of way?

I've read the some of the symptoms of Celiac Disease. I've never weighed more then 145 lbs all my life. Now I am 122.

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It is a genetic autoimmune disease. You inherit the gene from a parent. Your family members should also be tested for the disease. How are you doing on the diet? Have you found gluten free foods to eat that are helping put the weight on?

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Danceswithwolves,

I've only been *totally* gluten free for a little over a week now. My appetite is much better now that I'm not feeling sick all the time...and I've gained almost 10 lbs. already. Some of its fluid since I have malabsorption issues...so I know its not all muscle and fat I'm gaining but its *still* much more than I was able to gain with gluten in me.

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Hey Danceswithwolves,

I don't think you're overanalyzing your situation. Last week I found out I have celiac disease and I have been wondering about some of the same questions. I had rheumatoid arthritis when I was younger, frequent ear and sinus infections, and had trouble putting weight on as a child. I also see symptoms in my family members. I think everything could be interconnected somehow, perhaps through celiac disease. Maybe I had it all along? So, in your case, it could very well all be related.

:) Jen

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Danceswithwolves,

I've only been *totally* gluten free for a little over a week now. My appetite is much better now that I'm not feeling sick all the time...and I've gained almost 10 lbs. already. Some of its fluid since I have malabsorption issues...so I know its not all muscle and fat I'm gaining but its *still* much more than I was able to gain with gluten in me.

<{POST_SNAPBACK}>

Thank God is is somewhat reversible. I know that I may never be able to overindulge in my favorites again, but I don't want to be sickly looking all through my 40's either. God, I wish I would've realised what the hell celiac disease was and how to avoid it years ago. I guess the whole "stress from the new job" triggered it. It was bound to happen eventually.

I'm definitely done with beer and I guess if I want to enjoy a drink I will stick to wine (which I like anyway) or vodka drinks.

Yes...I have been constructing a gluten-free-free shop list and I did find that Kinniki( LOL ) bread available in a new store right near my home!!!!

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Consider yourself lucky, then. I can't find it in my Henry's, WholeFoods, Jimbos, Trader Joe's. At least, not consistently. SOMETIMES one of the stores will have it. I got sick of the disappointment, though, and have become a strict online orderer.

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Save your receipts, too.

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Save your receipts, too.

<{POST_SNAPBACK}>

So, you're telling me I can " write off " my Gluten? :D

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Absolutely.  If the total difference between your gluten-free food and the regular alternatives is at least 7.5% of your annual income, you can get a deduction for celiac.  You have to save your receipts, though.

<{POST_SNAPBACK}>

Minor modification - if your total medical expenses are greater than 7.5% of your income, you can add them to your itemized deductions. You can include the extra cost of foods needed to maintain a gluten free diet (the increase in price of a gluten free loaf of bread, or the whole cost of items unique to a gluten-free diet, like xanthum gum for baking) in your medical expense deduction.

So, if you make $50k a year, you would have to spend $3750 (out of pocket) in medical costs before you could take this deduction.

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I'm  definitely done with beer and I guess if I want to enjoy a drink I will stick to wine (which I like anyway) or vodka drinks.

Yes...I have been constructing a gluten-free-free shop list and I did find that Kinniki( LOL ) bread  available in a new store right near my home!!!!

<{POST_SNAPBACK}>

Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

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Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

<{POST_SNAPBACK}>

Does this also apply to something like vanilla extract? Is the alcohol in it grain based? All I know is I had a BAD reaction to the extract but also to vanilla flavored yogurt. I'm not sure if I'm just having a hard time with vanilla in general or if there is hidden gluten. I dont seem to react to things like gluten-free cookies which have vanilla listed as an ingredient. I'm so confused about that :blink:

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Not all extracts are gluten free-try Mccormack,s. Also check your yogurt brand-not all are gluten-free.

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Not all extracts are gluten free-try Mccormack,s.  Also check your yogurt brand-not all are gluten-free.

<{POST_SNAPBACK}>

Thanks...I called Spice Islands about the vanilla awhile back. I was told it was gluten-free but the woman was so quick to respond I sort of didn't believe her. Also the yogurt is on the Delphi list. I just bought Flavorganics Vanilla which is actually labeled gluten-free so I guess I'll have to try it and see if I react. I think its the only way I'll know for sure :(

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How do you people know so much?

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About the vanilla, it should be gluten-free if it's grain alcohol BUT you may react to alcohol or yeast, so you may be reacting to the vanilla :) Most people it seems who had celiac for a long time before going gluten-free have subsequent food allergies.

Merika

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I've always had allergies and was very "hyper" as a kid, according to my family, but I was super shy to the point of social anxiety at school. I had ADD, always ate whatever I wanted and people thought I must be bulemic because I'm so thin. I experienced a lot of mood swings, depressions etc. I also had very chapped lips as a kid and carried around a Bonne bell lip smacker necklace all of the time. Half of my family has Celiac (French,American Indian,Swedish and Scots-Irish genealogy), but I'm the only one following the diet. Crazy, I know, but my Crohn's was more of a push for me maybe. My grandfather died of lymphoma and was finally diagnosed with Celiac shortly before his death. He had a lot of problems with drinking and the other things you mention throughtout his life, and auto-immune diseases run in my family. I know untreated Celiac can cause a lot of problems. I hope you've been tested, and good luck to you. If you are diagnosed with Celiac or you're not, a good book to read is "Restoring Your Digestive Health" by Jordan S. Rubin and Joseph Brasco. Sorry if this is poorly written or hard to understand but I'm tired! :blink:

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And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

Okay, this is probably a dumb question, but I'm new to celiac disease. How can a soda fountain be contaminated?

:) Jen

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Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

<{POST_SNAPBACK}>

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<{POST_SNAPBACK}>

HI,

I was just diagnosed with celiac disease. As an Irishman I am in mourning that I will no longer be able to have a Jameson and a Guiness. Are there any whiskeys or dark beers that you know of that I can still have?

Cheers,

Duane

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Duane,

There are some special made gluten-free beers that are light at best. Nothing dark. I don't know what's available in Delaware. Maybe contact your local celiac org and find out. They will not be at your average grocery store.

Sorry, I'm not up on my whiskey ingredients. Someone else will have to chime in :)

Merika

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HI,

I was just diagnosed with celiac disease. As an Irishman I am in mourning that I will no longer be able to have a Jameson and a Guiness. Are there any whiskeys or dark beers that you know of that I can still have?

Cheers,

Duane

<{POST_SNAPBACK}>

Whiskey is a grain alcohol and supposedly any gluten gets filtered out in the distallation process. I know I haven't had a celiac disease reaction to whiskey, but for some dumb reason whiskey, even a little bit, gives me one hellacious hangover. I'm stuck with vodka and tequila.

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I thought the better whiskeys were okay. Ihaven't tried any though, I'm happy with a margarita!

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Does this also apply to something like vanilla extract? Is the alcohol in it grain based? All I know is I had a BAD reaction to the extract but also to vanilla flavored yogurt. I'm not sure if I'm just having a hard time with vanilla in general or if there is hidden gluten. I dont seem to react to things like gluten-free cookies which have vanilla listed as an ingredient. I'm so confused about that  :blink:

<{POST_SNAPBACK}>

Can you explain to me how "Columbo" yogurt gets wheat in it? I do not understand , It is not on the label of ingredients. Dairies do not use flour as one of their ingredients. What am I missing in the manuyfactuing process? There is tons of sugar for sure in with the fruit. But gluten or wheat?

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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