• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 Most Annoying Thing About Celiac Is...
0

60 posts in this topic

Recommended Posts

GFreeMO    113

The most annoying thing about celiac is...

Being glutened and having NO CLUE as to what zapped me this time!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Ads by Google:


Diane-in-FL    28

Finally living in a place with lots of fabulous restaurants and not being able to eat at most of them. :(

Share this post


Link to post
Share on other sites


Ads by Google:


beebs    61

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

Share this post


Link to post
Share on other sites
beebs    61

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Share this post


Link to post
Share on other sites
Gfreeatx    9

Chad, your last comment made me chuckle. :) For me, it is the lack of spontaneity. I am a real foodie and I miss walking through the city I live in exploring new restaurants without having a care.

  • Upvote 1

Share this post


Link to post
Share on other sites

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!

Hon, you're never too old to learn :).

Share this post


Link to post
Share on other sites


Ads by Google:


GuyC    2

having to pick up regular pizza for my family and knowing I can't have any.

Share this post


Link to post
Share on other sites
Googles    27

The crushing depression(physical and mental)that comes when I get glutened (even from CC).

Share this post


Link to post
Share on other sites
ThatGuy    0

The smell of Wetzel's Pretzels. I've never eaten there but I like to stand in front of them for a few minutes and imagine tasting whatever that scent is.

Share this post


Link to post
Share on other sites

That we can't even trust the "gluten free" options at most restaurants. Well meaning friends say, "such and such a place has gluten free pizza now!" Not a chance my super-sensitive celiac husband could eat it safely. Stupid cross-contamination.

  • Upvote 1

Share this post


Link to post
Share on other sites
TTNOGluten    0

Feeling helpless, depressed, and tired of being in constant pain, enough so, that I have a hard time even enjoying my own beautiful children and not being the father I should be

Share this post


Link to post
Share on other sites
beebs    61

Pseudo-Celiacs

Hate that! I just had an argument with someone today who says that her whole family has coeliac but none of them has been tested (along with a myriad of other medical complaints)- then she tells people on the internet just to go gluten free without testing. Drives me mad. Its like she wants her family to be coeliac. Whereas my family have been in sickness hell for years with two sick children in and out of hospitals and heaps of tests, borderline results. A) I would never dream of just deciding its Coeliac (although I think it is) and B) I would never tell anyone not to get tested. What if its something else? Something worse that is making the kids sick???

Share this post


Link to post
Share on other sites
mushroom    1,205

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

  • Upvote 1

Share this post


Link to post
Share on other sites
beebs    61

But what if it is gluten intolerance and you can make them better just by not giving them gluten? I would never tell someone not to get tested, but I would never tell someone to poison their child just for the sake of a stupid test which might not be accurate and which may not mean that it is not gluten that is the problem either. Adults can make up their own minds whether or not to poison themselves, for testing, but forcing your kids to be ill is a different question in my book. There are no accurate tests (yet) for ncgi.

No, she was telling people even before going gluten free to not get the blood test. No one is saying do a challenge. We are talking about chronically ill children as well - so what if it isn't even anything to do with celiac - or what if its celiac and something else? My son had a borderline celiac tests - he is much much better gluten free - but it has become clear that there is also something else going on. How would you ever know any of that with no testing. All I was saying is do the blood test and if its neg then go gluten free - but do the test first. Also - she keeps going on about how Celiac is an allergy etc. She doesn't know anything about it and yet she is giving advice on it? There is nothing worse than people talking about anything medical when they know nothing about it.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,874
    • Total Posts
      938,425
  • Member Statistics

    • Total Members
      65,773
    • Most Online
      3,093

    Newest Member
    nicorinse
    Joined
  • Popular Now

  • Topics

  • Posts

    • ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 
    • Hello everyone.    Ive been diagnosed with celiac for about 4 years now. It's been a rough road but I feel like I've gotten as good as I can get with eliminating gluten completely from my diet.    I am an undergraduate student with a driven passion to become a nurse (I'm a guy, I know). I love the field and can't wait to help people every day.   As some of you may know, the nursing curriculum is extremely intense. I have an very strict routine and schedule where I can handle the rigor of my classes, work, and fitness (I am really into health and fitness, it's the best release from the stresses induced from school. I get 6 hours of sleep on the dot and manage to work, volunteer, study, and eat decently well. I love my life when it's on this routine and am so happy and social with people around me. I'm making progress, I'm moving forward, making something of my life.    But lately I've been suffering. I've been getting sick a lot more often from what seems to be random uncontrollable cross contamination from various things. When I get sick, my routine gets all messed up, I fall off my schedule, and things start going downhill. I like to call it the "celiac rut" I get stuck in. When I'm sick I can't work out, without working out I get extremely stressed and can't sleep. Without sleep I can't focus on my school and you know, the slippery slope that pretty much leads to lots of depression and anxiety.    This. Absolutely. Sucks. I fall behind in school and have trouble focusing on my priorities because I need more sleep to heal, and I can't go to class or the gym when I'm throwing up or spending hours on the toilet. Plus the mental symptoms turn me into an angry antisocial gluten monster. So that's always fun.   I really don't know how to manage this. I feel like at this rate I won't be able to keep up with my daily life. I physically can not handle the lifestyle I have when I get sick, and it piles up because when I get better I'm like weeks behind in material in my classes.    I am am normally a super happy outgoing guy, I love being the person I truly am. But gluten is singlehandedly tearing my life apart and the depression is starting to take it's toll.    I honestly dont know what to get out of posting this. I just hope that someone has some sort of trick or secret to get through this awful "celiac rut."
    • Hello, I have the same issue with the hair loss a few months after going gluten free, I have been getting the b12 shot and was also told to take Vit D and Calcium, Also told it was because my guts are still not happy after all i put them thru, It's very upsetting losing the amount of hair I have, my right side of my head is about 65% thinner then the left...Was told it see a Diet person right away. 
    • There is sort of a detox/withdrawal thing for the first few weeks for most. Keep a food diary, often after a glutening a new intolerance will creep up for awhile. Sort of your body associating another food with gluten, and or it just being picky while damaged. Write down everything you eat, how you fix it, seasonings etc. Change up the diet, and look for patterns.  My own gut is being picky today and had D after 2 meals so I am rotating up and narrowing down the culprit tomorrow myself....only see 4 common things in my food dairy.
    • Thanks for your reply. I'm currently grain free, although I ended up making kitchary because I needed something of substance in my stomach. Seems to have helped. Some other symptoms coming on strong, so just hoping I have some answers soon, to make sure I'm at least on the right path!
  • Upcoming Events