• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 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

The Most Annoying Thing About Celiac Is...
0

Rate this topic

60 posts in this topic

Recommended Posts

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:


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:


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

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

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:


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

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

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


Ads by Google:


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

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

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

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
      108,133
    • Total Posts
      939,841
  • Member Statistics

    • Total Members
      66,113
    • Most Online
      3,093

    Newest Member
    cb1105
    Joined
  • Popular Now

  • Topics

  • Posts

    • We were in Santorini and Athens in August 2015.   We found eating gluten free easy in Greece.   Their cuisine involves fairly simply ingredients, olive oil, salt, and herbs.   My celiac daughter can eat almost all the grilled meats and vegetables.   Obviously you have to avoid the pita.   Also, be careful of the gyro meat, because some places threw beer in their marinade.   My daughter enjoyed lots of grilled fish, seafood, and meats there. We found the Greeks very friendly and accommodating, when we explained that we have to avoid gluten, the servers knew what that is, and were happy to accommodate us. Airport is different.   I have the habit of calling the airline a couple of week before the flight to make sure they have gluten-free meals for my daughter.   But I always pack backups for long flights.
    • You'll get to the point where you can eat other things, you just have to give it time. Can you do eggs? Hard boiled eggs. They make fast snacks and are highly portable. If you make nut butters, you can just eat it by the spoonful.  I don't like "normal" coconut macaroons, too wet for me, ick! I found this recipe though which drives me insane --- sooooooo good I about swallow my tongue. http://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139 Don't know if you like them or not but re-fried beans. I NEED my carbs!!!!! If I don't get carbs, I will get weak & shaking 30 minutes after eating. I can't eat every 30 minutes!!! So I eat a lot of re-fried beans. I make a big vat & then portion into containers & freeze. If you have or get a stick blender, it will make super fast work of mashing those beans up. Only takes 2 minutes or less. I use olive oil in mine & lots of it -- need that fat. 
    • Coconut, almond butter, and cocoa nib fat bombs...I use plant fats to do it. You can make some great snacks out of fresh almond butter, shredded or coconut flour, and cocoa nibs. Sweeten with stevia for little dough like balls of goodness. Oh you miss potato chips, two options here I like to make my own protein chips with pea protein, or I can have 2-4 protes chips (vegan pea protein  chips made by a company) but they have to be eaten in moderation. Coconut chips....yeah I get Lets' Do Organic ones I can snack on a hand full of them or throw a handful of cocoa nibs in my mouth for snacks. If you like meat, try making jerky. get a dehydrator season your own and just do it.....lucky you can eat meat. I miss making roast in a crock pot....I used to make some of the best shredded meats. My old smoker.....I could make some of the best ribs and roast EVER. The jerky can be made and taken for snacks on the road or while out, crack open a can of spinach (canned unsalted delmonte does not bother me) or pack some stewed greens and have some jerky tear it up stir it in canned keto on the go. Other lovely thing are tuna and salmon if the canned bother you I often find them too salty to enjoy I have taken some and smoked it or dipped it in liquid smoke then cooked in a baking dish then loaded in to the dehydrator. I find doing this I can have that little bit of fish when I want without worry of spoilage (sucking on it and chewing it for a long time make it really satisfying for me) ....SOO doing this next week to try the fish again. Speaking of fish...since I perfected keto bread in my bakery this month......I think I might try making a tuna sandwich with avacado mayo....not had a tuna sandwich in over 5 years.....
    • I am a newly diagnosed celiac and am traveling abroad for the first time since starting the diet. I will be going to Greece in the spring. I was wondering if anyone had any tips for eating gluten free abroad or at airports? Thanks! 
    • Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
  • Upcoming Events