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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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C-Girl

How Do I Stop The Worrying?

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Since my celiac diagnosis, my DH has been really stressed out and worrying about me constantly. With every new obstacle, he dotes even more, asks me how I'm feeling like every 10 minutes to the point that I had to ban him from asking me that. I mean, it's not as if I'm dying - I just feel like crap sometimes. I still work out, I still live life (except for a few nights when I went to bed at 7pm just because I was sick of feeling bad). I try to reassure him that things will be fine, that I'm fine but I get the sense he's always waiting for something else to go wrong. The last thing I want is for him to get himself sick by worrying so much but I can't get him to stop.

 

Advice?

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remember   how  hard  it is  to  understand  this  illness even,  celiac  folks  have  trouble  understanding  this  at  the  beginning...as  annoying  as  being  asked  constantly  how  you  are  someone  truly loves  you &  cares  for your  well being....&  if they are not  experiencing  the  symptoms  how  could  they  understand  when at  times  we  question  ....

It could  be  worse,  as  many  face  this  new  lifestyle  alone  because  family & friends  think  they  are  just plain crazy....not  normal....

My suggestion  would be  gather up some  good  reports  about  celiac  &  have  a  conversation  & learn  about  celiac  , extending  conditions  that often  follow celiac....have   answers  to  all the  questions  ..

Do you have  a good  support  group  you all can lean on  ?  Finding  a  seasoned  faithful  gluten-free  support  person  is  a  GREAT asset  to  you & family/friends.....

 

hth

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I sometimes think I should always be waiting for another shoe to drop, my life isn't what it was 6 years ago when I got married. I had a full time job and was physically active enough to hike the entire Provo canyon end to end. The canyon trail (in the canyon) is 7 miles end to end and I didn't think anything of heading up in the morning and hiking one end to the other and back again as a leisurely day stroll. Today I can't hold down a real part time job and can't make the walk from one park to the next and back again. I've spent the past 5 years trying to pin down a neurological issue. I'm finally at the point that maybe we're close and in the course of this I've recently got incredibly scary, possibly life-altering news.

 

And so what do we do to keep from worrying about every last thing? We just don't worry. If I get a cold, it's probably just a cold. Sometimes the big D and some stomach pains are just a bug and everyone gets sick, don't freak out until there's brain fog. Also, don't panic then either, just deal with it. Sure, I should probably just be waiting for it to rain dropping shoes at this point. And what'll I do? I'll have awesome shoes. If you're going to be sitting by your phone waiting for bad news, it should be because your doctor told you to expect a call. Without that, live life without being caught up in what's coming because it'll keep you from enjoying the moment.

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remember   how  hard  it is  to  understand  this  illness even,  celiac  folks  have  trouble  understanding  this  at  the  beginning...as  annoying  as  being  asked  constantly  how  you  are  someone  truly loves  you &  cares  for your  well being....&  if they are not  experiencing  the  symptoms  how  could  they  understand  when at  times  we  question  ....

It could  be  worse,  as  many  face  this  new  lifestyle  alone  because  family & friends  think  they  are  just plain crazy....not  normal....

My suggestion  would be  gather up some  good  reports  about  celiac  &  have  a  conversation  & learn  about  celiac  , extending  conditions  that often  follow celiac....have   answers  to  all the  questions  ..

Do you have  a good  support  group  you all can lean on  ?  Finding  a  seasoned  faithful  gluten-free  support  person  is  a  GREAT asset  to  you & family/friends.....

 

hth

It's true, I am really lucky to have a supportive spouse who went gluten free (when home) out of sympathy and who cares. I just wish I could stop having these issues so he doesn't have to keep on worrying. I swear - when I went to the GI doc I had some diarrhea that was annoying, but otherwise I felt fine. I juiced, ate healthy etc. Then when I gave up gluten I have had to slowly remove every other damn thing from my diet in order to not have some crazy problem or another. I've tried the probiotics, enzymes, food log, blah blah blah and am really at the point of just eating what the hell I want (aside from gluten, I'm not an idiot), side effects be damned. I could just pretend I wasn't having issues, right? Isn't that supposed to work - visualize success and it will come?

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First, I would give him a big hug and let him know how much you appreciate his concern. Then, as Mamaw suggested, educate him as much as you can. Let him know that although you still have bad days, you ARE on your way back to good health. And then promise him that if you are having a bad day or feeling crappy, you will let him know so he can pamper you.

 

This reminds me of a song my friend Craig Caruthers wrote, called "Don't Pick Me Up Before I Fall". He wrote it for his wife who was feeling a bit smothered by Craig's tendency (a tendency that it seems most men have), of wanting to fix everything. It's great to be loved so much, but it can be overwhelming sometimes.

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This reminds me of a song my friend Craig Caruthers wrote, called "Don't Pick Me Up Before I Fall". He wrote it for his wife who was feeling a bit smothered by Craig's tendency (a tendency that it seems most men have), of wanting to fix everything. It's great to be loved so much, but it can be overwhelming sometimes.

"Wanting to fix everything"= exactly! He's good at fixing things - bikes, plumbing... but not me I guess! He just wants the doctors to do the fixing for him, but all they seem to want to say is "give it time", and that's just not acceptable. :-/ I suppose we both could learn to be a little bit more patient.

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I think one  of the  hardest  lessons  in life  is: we  can't  fix  everything &  make it all better ie: loosing  a loved  one to  cancer  for instant.....

Do  consider  that  you are  having  issues  because  you  are  still knew  to the  gluten-free ....not  everyone  gets  better  at t he  same  rate...some  have  a  quick  turn-a-round  others  it  can take  a  year  or  even  three to  get  feeling  back to a  normal  being....and  sadly  enough  once  celiac  dx'd  some of  us  get  dx'd  with other  autoimmune  issues....

It  does  take  a  detective  at  times to try to figure  out  what  is happening  to us..Trial & Error... Not  fun  but  many  of  us  had  done  just  that....I would not  give  up the  digestive  enzymes  or probiotics .....I react  to  things  others  never  have  &  at  times  I  can eat  a food  by itself  but  add  another food  to it  & bingo I'm down & out .....

It  sucks  that  foods  can  be  the  staff  of  human life  but  it  also  makes  us  very  ill....Dead  if  we do  & Dead  if we don't ....

I  think your  body is just  fighting  back at  the  changes ... It  does  take  time &  is  a  royal pain  ...Keep  fighting  &  you will learn  to  read  your  body  & understand  what  it needs  & wants.....it  may not  be  even  anything  that  has to do with  gluten. ie: sugars, carbs, histamine  junk that is  also causing  you  grief....

 

hang in  there.... 

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It's really sweet that he's taking your diagnosis seriously. I think for most, a lack of understanding can be an issue with a new diagnosis for a couple. I know mine was.  :( It took nearly a year of talking and educating not only my SO but also his family to understand what it meant when I would get sick from eating any gluten containing foods. I think it's important to give it time, especially if your diagnosis is recently new? He's just concerned about your well-being. Which is great! Of course, you will still feel like crap occasionally and your body needs time to heal when you make the switch to a gluten-free diet. So, this is something you should really emphasis with him. 

But like I said before, it's really great that he's supporting you. That just means he'll be making sure everything is extra gluten-free whenever you guys go out to eat. :D

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The most difficult thing about healing from celiac damage is being patient. It's the mother of all exercises in patience.

Believe me. It took me a long time to see some stability in my bowels, the neurological issues, the insomnia, the....everything.

I am still trying to get my hair to thicken up.

 

I hate to say this but, you will be healing  for a long time. Reversing damage takes time....so there is absolutely no point in anyone fussing about every tummy rumble, D episode or anything else. This is a process, not a quick fix.

 

It's better to have someone who cares about you than someone who doesn't.

That said, tell him what my Gramma used to say

"don't borrow trouble".... meaning, save the worrying for the important stuff.

 

My wise hubs says 99.9 % of the stuff we worry about never comes to fruition. He's right. He had a difficult time when I was very ill for 3 years before diagnosis, telling doctors to do something for his wife, dammit!  (and me worrying he would strangle some of them..lol)

but once we had the DX, he relaxed. He still worries about me, on some level, but he accepts the time/heal thing and has relaxed about it all.

 

Give him a giant hug and be grateful he loves you so much. I know some people whose spouses walked when the bad shyte hit the fan and their lives were altered horribly. 

 

You're going to be okay! hang in there.

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It might help for him to read a book on celiac disease so he understands the disease better.  It is a lifelong condition so it is worth spending some time reading about it.  Celiac is not like a cold that you get over fairly quick.  The fact that you are aware of the condition now and are taking steps to learn how to eat gluten-free and avoid cross contamination is the most important thing.  In time you will get better at being gluten-free and your body will heal.  Your DH needs to learn also and adjust.

 

You may find that your body doesn't tolerate a lot of different foods at the beginning first 6 months or more.  But that you can slowly get more foods back as the healing continues.  Patience with your body is worth developing.  It's a long, slow slog for some of us, not a sprint.  But it is very possible to feel much better in time.  We all learn as we go.

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I probably sound like a broken record with this, :D but I HIGHLY recommend Real Life with Celiac Disease by Melinda Dennis, RD

and Daniel Leffler, MD. Covers every topic you can imagine, written by over 50 celiac disease specialists and the articles are easily digested.

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Great advice from some wise women :D With all this snow on my hands here, I thought I'd stop by for a few.

 

Give that DH a huge hug! It took me a while to realize my body was damaged badly and it would take me some time to feel better. Almost at my 4yr DX date. I'm a single Mom, so these ladies and others here really helped me in my newbie year. Much appreciation to this forum.

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Great advice from some wise women :D With all this snow on my hands here, I thought I'd stop by for a few.

 

Give that DH a huge hug! It took me a while to realize my body was damaged badly and it would take me some time to feel better. Almost at my 4yr DX date. I'm a single Mom, so these ladies and others here really helped me in my newbie year. Much appreciation to this forum.

 

 

C-KIP!! holy smokes...why....hello, babes! how the heck are you? Must be good? I have not "seen you" on here or GD.

 

So happy you are doing well, dear girl!! whoohoo!!!!! Snow? what is that ??(yeah, I did it, I moved to FLA...but I digress!) LOL

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I felt as though I was road kill for the better part of a year. It does take time. I am also trying to unravel some other issues that are affecting my health at 18 months after dx. You will have more energy for figuring out your other food intolerances later. For now, just let your internal injuries heal. I've recently adopted a viewpoint about food that has been helpful to me,  that is to look at food as a way to heal the body instead of seeing certain foods as evil. I think the positive outlook is helping me in general. Every time I eat something that I know is anti-inflammatory, I think of how good it is for my body. 

 

You are loved, and there's nothing better than that!!  My husband is a brain cancer survivor, so I have the unique experience of being on both sides of this issue. Trust me when I tell you your husband NEEDS to tell you he loves you and that he wishes he could fix things. Allow him to do this. It's how you receive it that will make the difference for you both. 

 

All this positivity is unlike me. I must be really Zen tonight! Either that or shoes are about to drop. Oy.

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Hi there IrishHeart!! I'm doing ok, still bad days and good one. Appreciate the good ones! FL...welcome to the South! ;) Soon things will slow down for me and I'll be back more. I keep up with GD and enjoyed when he asked for your help :)  You lovely ladies take care and I'll be around.

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I felt as though I was road kill for the better part of a year. It does take time. I am also trying to unravel some other issues that are affecting my health at 18 months after dx. You will have more energy for figuring out your other food intolerances later. For now, just let your internal injuries heal. I've recently adopted a viewpoint about food that has been helpful to me,  that is to look at food as a way to heal the body instead of seeing certain foods as evil. I think the positive outlook is helping me in general. Every time I eat something that I know is anti-inflammatory, I think of how good it is for my body. 

 

You are loved, and there's nothing better than that!!  My husband is a brain cancer survivor, so I have the unique experience of being on both sides of this issue. Trust me when I tell you your husband NEEDS to tell you he loves you and that he wishes he could fix things. Allow him to do this. It's how you receive it that will make the difference for you both. 

 

All this positivity is unlike me. I must be really Zen tonight! Either that or shoes are about to drop. Oy.

Thank you all so much. DH made it the weekend without asking me how I was, and it seemed to help. He does tend to get hyperfocussed on one thing, and it helped him stop a bit.

I do feel lucky to have him, but he's more fun to be around when not sad and fretting :)

I ate a few different things this weekend and was fine, until I had a nut bar that had chocolate. I was up three times in the night with D. Lucky he slept through it! But now I know, chocolate isn't agreeing with me because the last two times it happened I had eaten a Zgf brownie in the afternoon, around the same time as the bar. I hope to god that will change soon.... I really don't want to lose chocolate!

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Most (not all) chocolate has soy lecithin. Could just be the soy in chocolate that is bothering you. Also, I have noticed with myself that if it doesn't have soy, I can eat a LITTLE, but if I have too much I get sick.

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Thank you all so much. DH made it the weekend without asking me how I was, and it seemed to help. He does tend to get hyperfocussed on one thing, and it helped him stop a bit.

I do feel lucky to have him, but he's more fun to be around when not sad and fretting :)

I ate a few different things this weekend and was fine, until I had a nut bar that had chocolate. I was up three times in the night with D. Lucky he slept through it! But now I know, chocolate isn't agreeing with me because the last two times it happened I had eaten a Zgf brownie in the afternoon, around the same time as the bar. I hope to god that will change soon.... I really don't want to lose chocolate!

i had trouble with chocolate, too - it was The Evil Soy & his cousin Soy Lecithin  :(  soy wonks my guts out.  it isn't as long lasting as a glutening and it doesn't do gut damage but it will give me the big D and if i eat enough of it, it'll cause inflammation in my joints....  me and soy are not friends.  in fact, the more i stay away from The Evil Soy, the better i feel  :)  somebody on here turned me on to 'enjoy life' chocolate chips soy free, dairy free, gluten free.  hershey chocolate syrup is gluten-free, s/f also their cocoa powder for baking.  i have had to re-think my chocolate delivery system, ie, no soy........

 

it *is* sweet but i completely understand.  my hubs is a worrier, too, but i can tell when he is really concerned he goes out and cleans guns/reloads ammo (like he is going to be ready to fight whatever is hurting me, i get it, honey....)  give him a little time to get used to it  :)  better than him not caring.  seen many relationships end on here because s/o's wouldn't learn or didn't care  <mostly that)  when their wives/husbands were dx'd.  you are on the good side of the spectrum  ;)

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Most (not all) chocolate has soy lecithin. Could just be the soy in chocolate that is bothering you. Also, I have noticed with myself that if it doesn't have soy, I can eat a LITTLE, but if I have too much I get sick.

lolz, barty, great minds and all that.  no hershey syrup for you:  it has corn syrup!!!

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Soy is not my pal.  Never has been and I do not care. Read "The Whole Soy Story" and you'll never eat it again.

Enjoy Life chips RULE!! LOL

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:( I wish I could get Enjoy Life here. :(

 

(But then again, I guess I don't need the extra calories.)

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:( I wish I could get Enjoy Life here. :(

 

(But then again, I guess I don't need the extra calories.)

there is another brand that was good - i want to say 'rice dream'  ?  i'll; look next time i'm at the krogers.  it was good, too :)  (they're little, tiny candy bars, barty - hardly worth mentioning - i don't think they have any calories....... ^_^ )

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I buy expensive chocolate when I buy it, and frequently find chocolate that doesn't have soy. Amano makes the top of my list by a long stretch. (I believe there is a warning on their packages because they use antique equipment, but they do not use soy.) I'm lucky to live a few blocks from a grocery store that considers fine chocolates to be important and they carry dozens of choices in high end chocolates. While I understand my situation is probably unique, if you shop online finding high quality chocolate without soy should be easy as pie without being reduced to mass produced drivel. And the dark chocolates are all automatically dairy free. Needing allergen free chocolate doesn't have to reduce any of us to barbarism. I also find that every grocery store in my area has at least a small selection of semi-decent chocolate in the candy aisle. Maybe most people can at least find that if they aren't online shoppers.

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Put a moratorium on health related questions and talk. (if possible) Then, busy yourself. (to the extent possible)  For me, the busier I am, the less I think about negative things.  The less I notice aches.  The less I question every quirk in my body.  It doesn't magically fix things but it sure does seem to help.  I know that sounds so easy but I understand that its not.  When the DH kicks in, you're reminded of it every time you get out of the shower.  I get spots all over my body during/after a shower.  I started putting on lotion BEFORE getting in.  Over the last two months it has cleared to the extent that I can take a few showers without lotion and not notice the spots.  Maybe that will help you too?  I don't know.

 

Call up some friends you haven't talked to in awhile.  Go to a restaraunt you deem safe.  Force yourself to break out of your routine however that may be.  I put 10,000 miles on a motorcycle last year.  Why?  I didn't stress about my uncontrollables.  I was too busy leaning in curves, watching out for cars and potholes, etc.  Find something that when you do it, you're immersed and not reminded.

 

I hope you get relief of your stress.  I spent a full year being miserable.  Pull yourself up!  :-)

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