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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

The Honeymoon Is Over
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ker0pi    3

I have determined the HONEYMOON is over. I am approaching 5 weeks gluten free and the first 4 were blissful. I have enjoyed watching all my crippling pain vanish and my bm's become regular for the first time in my life. I had oddles of energy and just couldn't slow myself down. Well now, I feel a bit crummy. It is no where near the crippling pain and unbearable lethargy I was feeling, not by a long stretch. But now, now I have awful painful gas, my stomach just feels soar. I wake up tired, not OH MY GOD I CAN'T FACE THE DAY tired, but tired. My tummy is not happy about some foods, all gluten-free of course. I feel a lot like I did about 7 years ago, vague symptoms of feeling not so hot most days, I would push threw and try not to let it slow me down. Well about 4 1/2 years ago I GOT slowed down by this and was certain I was dying of some obscure incurable disease, well that was sort of right, only I'm not dying and though incurable it is treatable. Will I get my zestfull honeymoon phase back? Am I having withdrawal or is this my new norm? Sort of crappy but still able to live, unlike the past 4 1/2 years. Or am I insane to think I would feel fabulous after just a month. Oh, excuse my rambling, my biggest problem, impatience. Just needed to vent a bit. Was is very up and down for you in the beginning too?

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Cait701    0

I don't have much insight to offer on it if it gets better, but know that I'm feeling the EXACT same thing. I'm pretty sure my downward slump came from getting glutenated, is it possible you got hit and didn't know it?

Sorry I can't be more help about what to expect. But it helped me to see that you're feeling the same way I am. Hopefully you'll take comfort in the fact that at least one other person out there is missing the honeymoon phase, too.

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ker0pi    3

I don't have much insight to offer on it if it gets better, but know that I'm feeling the EXACT same thing. I'm pretty sure my downward slump came from getting glutenated, is it possible you got hit and didn't know it?

Sorry I can't be more help about what to expect. But it helped me to see that you're feeling the same way I am. Hopefully you'll take comfort in the fact that at least one other person out there is missing the honeymoon phase, too.

It does help. Everything I have read on this forum that leaves me thinking, "It's not just me!" Makes me feel a little better. I keep telling myself not to mark of days but weeks and then stretch it to months. I don't think I got CC, but I plan on refraining from the wine next week at communion, I get my own special gluten-free wafers. I had a moments pause when I ate some apple slices during coffee hour, there was nothing else on the table that had been cut with a knife so I figured I was safe and we are fully gluten-free at home. The only question mark would be Saturday, my son's birthday party, my hubby made regular bread PB&J's for the kids and then I handed them out. I didn't eat anything after touching the sandwiches and washed my hands as soon as we got home. Everything else at the party was gluten-free. I will keep pondering this.

Good luck to you too, may we both find our honeymoon phase again.

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IrishHeart    1,634

I don't think I got CC, but I plan on refraining from the wine next week at communion.

Think about it. If others who took in the gluteny hosts sip from the shared cup, then you do, what can happen?

Sit up front and ask the priest to let you take the communion wine FIRST or refrain from it altogether.

And secondly, c'mon now, sweets, we have discussed this, :) but I will tell you again ....healing takes time, often 6 months to 2 years.... or more.

Ditch the dairy, if you haven't already. Stay the course.

Repeat after me...."this is a long up and down road to recovery. I need not get discouraged. I am healing." ;)

hugs, IH

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IrishHeart    1,634

we are fully gluten-free at home. The only question mark would be Saturday, my son's birthday party, my hubby made regular bread PB&J's for the kids and then I handed them out. I didn't eat anything after touching the sandwiches and washed my hands as soon as we got home.

He made them, you handled them and waited until you got home to wash your hands?

My guess is during that time, you probably touched your face approximately 20 times and did not even realize it.

Did your son eat those too? Did he give you hugs and kisses?

CC happens so easily.

If you are gluten-free, your home is gluten-free and everything else at the party is gluten-free, then all it takes if those gluten sandwiches to undo it all.

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ker0pi    3

Sit up front and ask the priest to let you take the communion wine FIRST or refrain from it altogether.

I do get served first after my priest and the acolyte, my priest has been wonderful, her dear friend and fellow priest is a Celiac so she immediately spoke to her about how to handle my communion, there's a laminate step by step instruction on how to avoid cc with my wafers posted in the Sacristy. It's the ceremony part where she breaks the wafer, I'm concerned crumbs end up in the wine and I dip instead of drink to "minimize" potential exposure. I'm still going to pass next week and see if I feel better on Sundays, it's also my errand/shopping day and I do the most physically demanding things that day. I may just be wearing myself out on Sundays and feel oogggyy come Monday.

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ker0pi    3

He made them, you handled them and waited until you got home to wash your hands?

My guess is during that time, you probably touched your face approximately 20 times and did not even realize it.

Did your son eat those too? Did he give you hugs and kisses?

CC happens so easily.

If you are gluten-free, your home is gluten-free and everything else at the party is gluten-free, then all it takes if those gluten sandwiches to undo it all.

We were at the beach so I had my hubby pour water over my hands so I could clean them as best I could. When we got home I took my son straight to the shower for de-sanding and I do not recall any hugs or kisses before the shower. My hubby gave me "a talking to" after I handed out the sandwiches. He did the first round and was busy when I got asked for seconds.

It is entirely possible that is part of why I feel crummy today.

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IrishHeart    1,634

Just trying to sort it out with you and from your replies, it would seem as if you have been exposed to several sources of CC---as we all do, in our every day lives--so, take communion and skip the wine, is all I can offer.

From all you have told me, I am guessing you are possibly OVERDOING it PHYSICALLY because you are so excited that you feel better, so my honest advice is.....slow it down. Your muscles were deeply impacted.

This did not happen overnight and it will not resolve that quickly either.

Sorry, but patience, patience, patience....make this your mantra.

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GFinDC    609

Yep, starting out is kind of an iffy process. Things are changing in gut-land and that is touchy business. Many people report being much more sensitive to gluten after going gluten-free for a bit. Small amounts of gluten may be getting you that wouldn't have bothered you before, Gluten kisses could be a problem too.

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LauraB0927    31

I think I am going through the same thing right now - after 3 months of being gluten free I'm starting to not feel as great and notice I'm much more sensitive to things. My GI system was never sensitive to gluten before my diagnosis. I cant seem to put my finger on what's not making me feel right and I think I will just have to be as careful as possible and hopefully things will work themselves out. So if its any comfort to you, I think my honeymoon is over too! Best wishes to you!

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RuskitD    2

I will share my favorite mantra, learned here....

keep a food diary. You do not have to log how much you ate. Just note everything you put in your mouth. Then log how you feel. Even the slightest 'off' symptom. I made notes all day long on how I felt.

You may be surprised to learn you have had another food intolerance develope that has nothing to do with gluten.

I kept my diary, as per suggested here. After reactions, I found it wasn't gluten at all. I developed other intolerances/sensitivities.

Then cut that food out for 2 or 3 weeks and go back and try it again. You will have your answer quickly on whether or not that food can be tolerated.

We cannot begin to understand how complex our bodies are. It seems very common that after stopping gluten, and our body adjusts to NOT being poisoned by it, and having to live in PROTECTION FROM GLUTEN mode, that our body decides there are other foods we are putting in there that it just doesn't want.

When I quit gluten, I munched popcorn and corn chips, thinking this would be simple to live without gluten. Then in less than a month, BAM! I began reacting to it.

Corn and soy make me 'feel' just like gluten, except I don't get the "D". Soy will make rumbles in the depths of my body, as well as make me feel tired and lethargic. Corn (any form of it) gives me heartburn in 1/2 hour, and then makes me feel exhausted, foggy, despondent for days.

For your health, please look deeper into what you might be reacting to, and don't just assume its gluten.

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ker0pi    3

I will share my favorite mantra, learned here....

keep a food diary.

When I quit gluten, I munched popcorn and corn chips, thinking this would be simple to live without gluten.

For your health, please look deeper into what you might be reacting to, and don't just assume its gluten.

This theme keeps coming up for me, I kept a sleep journal during the worst parts to be more clear with my doctor about the insomnia and what specifically was causing me to wake up 5-6 times a night and which supplements/meds seemed to help. I have been thinking the same thing, no gluten, piece of cake. We already eat an organic whole foods diet and my local Co-Op is the most Gluten Free friendly place to shop with every gluten free item labeled on the shelf with a gluten free tag and every product thoroughly researched before it receives that label. And if there is a question they will research it right there at customer service and get you your answer. I have gone into this already spoiled by the ease of cutting out the gluten, I'm afraid it could be something else. That would be more difficult and involve more research and leg work on my part *sigh*. I'm not normally a lazy person but yeah, this whole label reading and watching absolutely everything you eat or touch, like the shared break room kitchen at work that causes me to nearly hyperventilate when people fix there gluten food right there is draining. I have always brought leftovers from home and simply dump my food on a plate, cover and then microwave, I don't fix anything on the counters. I did skip the wine last Sunday and have felt really good all week. But a food diary to identify other possible allergies is an excellent suggestion, now I need to make myself do it.

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T.H.    404

I hate to say this, but if you don't find any other answers, you may want to take a look at the gluten free communion host. I am assuming you are Catholic, yes? The gluten free host - for the Catholic Church - is around 100ppm of gluten. That would not be considered gluten free by the standards the FDA is considering, and does not meet the gluten free standards in the UK, either (which are <20 ppm).

It IS a very small amount of gluten, because it's only the small communion wafer, but that can still cause problems for some people (Biagi F, Campanella J, Martucci S, et al. A milligram of gluten a day keeps the mucosal recovery away: A case report: Nutr Rev. 2004;62(9):360-363 ).

I've heard that some folks in this situation spoke to their priest and arranged to have a separate small cup of consecrated wine put aside for them, so it wasn't contaminated by the sharing.

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ker0pi    3

I hate to say this, but if you don't find any other answers, you may want to take a look at the gluten free communion host. I am assuming you are Catholic, yes? The gluten free host - for the Catholic Church - is around 100ppm of gluten. That would not be considered gluten free by the standards the FDA is considering, and does not meet the gluten free standards in the UK, either (which are <20 ppm).

It IS a very small amount of gluten, because it's only the small communion wafer, but that can still cause problems for some people (Biagi F, Campanella J, Martucci S, et al. A milligram of gluten a day keeps the mucosal recovery away: A case report: Nutr Rev. 2004;62(9):360-363 ).

I've heard that some folks in this situation spoke to their priest and arranged to have a separate small cup of consecrated wine put aside for them, so it wasn't contaminated by the sharing.

Thank you for the tips. I'm Episcopalian, not Catholic, often referred to as Catholic Lite, we do have communion every Sunday. I spoke with my priest today and the wafers she got for me were rice flour no gluten, Episcopalian's don't have that no wheat means it's not communion issue I've heard Catholics say. I skipped the wine again and we talked about it. I'm going to just keep skipping for now and in a few months we'll talk about getting my own cup as you mentioned. I'm going to check out that book you sited.

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T.H.    404

Thank you for the tips. I'm Episcopalian...

Oh great! That's wonderful. Yeah, Celiacs get kind of screwed in the Catholic church, IMO. About one half my extended family is Catholic, living in countries that are ALL Catholic, and some of them are Celiac as well. It's very difficult for them. So glad that your wafers are gluten-free! :-D

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