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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.

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10 posts in this topic

It occured to me that Celiac doesn't control my life!!--I do! :P

My whole family has been gluten-free for 6 years now, and now it is no problem

for me/us to shop in regular stores, eat out, go to parties, go on

trips, have a gluten-free hospital stay (we just had our 2nd little Silly

Yak!!),bring snacks for a group, and pack daily gluten-free snack bags for any of us!

So, to all you newbies out there, I just wanted to say that it does

get easier and easier--and better! Now-a-days there are sooo many

mainstream foods we can eat! :D

If you are still struggling, try to remember that soon you too will

be an old pro at this!! It won't take long...

If you are sad at the loss of your old life-style, know that you will now be far healthier than ever before.... Things will be different, but chin up, have courage, and look on the bright side! ^_^

Connie

gluten-free since 1-'98

--sitting with homemade pizza and beer, reflecting....

B)

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Hi Connie - thank you for these encouraging words. :D Lately I have been feeling down and this is just the "pick me up" I needed! :)

Thanks again!

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Hi,

Thanks to both of you! Connie, you are right there are a lot of easy gluten-free foods out there!

After a year gluten-free (diagnosed April '03) I find ways to prepare for outings and I am way better at asking the right questions in restaurants. And I feel better! I had forgotten how bad it was and then two weeks ago I got Celiac-Whacked twice I think in two days (accidental gluten ingestion). I'm still in some pain, but healing. I know how nice it is to be healthy again!

I having been gaining weight consistantly since fall. No more ribs poking out! I have energy! And I have answers (to why I was sick for so long)!

When I/we cook at home it is easy to forget that our kitchen is any different from anyone elses.

Best Wishes All!

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I totally agree! I've been gluten free for about 7 years and I think of myself as normal as anyone else. I am confident when I go out to eat that I can have a safe gluten free meal. I'm still working on the kitchen part since I still live with family that eat enough gluten to feed a small village for a year!!! There is hope for everyone, it takes work but it's worth it!! ;)

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Oh my, I'm glad I found this board. I took wheat out of my diet at the suggestion of a friend last August and within days felt wonderful! Unfortunately, when I finally got around to asking a doctor about it I'd been (relatively) gluten-free too long. My gastro-doc wanted me to go back on gluten for 4 weeks before the endoscopy after inconclusive blood work. I made it for all of two days. I guess that makes me part of the self-dianosed group! Connie, thanks for the encouragement! And "veggf" thanks for the new term..."Celiac Whacked" says it all!

Thanks again!

Lori

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Connie,

I just have a question. How long did it take you to feel better? I started feeling better immediately after going gluten-free, but I still am not where I need to be. My biggest problem has been chronic diarreah, and that has improved, but I still feel like sometimes I question if I have had gluten accident or not. I don't think so, but I will have diarreah or something. Is that common, to have good days and bad days even being completly gluten-free??? Just curious your opinion.

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Hi Laura,

I wish I could be of help on this one, but I never felt bad... But, I do remember feeling much better (if that makes sense!) :D

Yes, you will have good and bad days. And, you will still learn a lot more about celiac and the diet. It takes some longer than others to undo the damage a life full of gluten has done. And, it will take a bit yet to understand where hidden glutens lie...

And, once you become better and truely gluten-free, you will discover secondary food allergies that you have! :P

But, soon, you will be over the D, and writing to others on this board with helpful hints and suggestions!

Were you doctor diagnosed? Were other causes of diarreh ruled out? Are you still eating dairy? Do you kiss a person who eats gluten? Have you checked all your makeups for gluten? Sooo many places for gluten to hide!! Trace amounts might give you D...

Well, you've already done the best thing you could do--you joined this board!!

Keep reading and trying to figure it out and you will!

Good luck!

Connie

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Been gluten free for almost 4 months. Not really having a bad time of it. Like someone said there are so many mainstream products out there that you can eat. I e-mail everyone and ask if the products are gluten free. I'm learning how to make bread and its really not bad. Good thing you don't have to knead the dough because thats where I'd probably kill it. Bought a cookbook at the gluten free mall .I do have to say that to get started it's a bit pricey, but very challenging. Also someone stated that when you go somewhere you might have to bring your own food. I go to McDonald and bring my own bread. It's really pretty good. Pizzas not bad of course its not dominos but edible. You adjust to it. Don't let eating rule your whole life.

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Thanks Connie.... Yes I was Dr diagnosed, but blood work only. My Dr did not 2nd guess the tests and although he recommended that I get the biopsy's done, I decided not to. As soon as I went gluten-free I started feeling better. I apparently have been misdiagnosed for most of 10- years. 4 mo ago I had extreme chronic D..., a week into the gluten-free diet, I started noticing an improvement. OF course from where I started I have a LONG way to go. with in a month 1/2 or so I had mostly solid stools ( although still much to be desired). All of a sudden I started back to D and I have really been stuggling to get it under control again. As far as I know I did not have any gluten. Of course contamination is always a possibiility, but I try to be very careful, you would think that I would have had more contamination in the beginning when I had no idea what I was doing. Normally a gluten accident will noticeable immedicately...as in an hour. I did eat out a couple times, but did not notice anything that would have suggested an accident. So here I am 2 1/2 mo into a strict gluten-free diet, having been making improvements almost daily, back to where I started. I do think possibly today I can say maybe I noticed improvements from the last week or so, but it's been most of 3 weeks since everything went array!!!!! I dont' know what happened!

I know it's a slow process. It's just odd, and I don't know how to fix it. Even when things were going great, I would have one day with really solid stools, and the next with D... and then back to solids again for a week, and then D... Im so confused :angry:

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Laura,

I have no idea whether this could be the case for you, but with my son the longer he has been on the gluten-free diet, the smaller the amount of gluten accidentally ingested it takes to have a reaction. Actually, not only does it take less in quantity (because now just trace amounts are enough) to cause a severe reaction, but his reactions are now worse with quite an acute initial phase, and generally last about a week. I have heard about this phenomenon from a number of people, so it

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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