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Driven Mad By Celiac
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It still gets to me how people are ill informed about serten allergies.There are so many.Peanut allergy is the most herd about.Nuts this,nuts that.YES it is vary importent.But so is CELIAC/COELIAC''uk''and it shoud be known the world over without the strang looks from those you try to explane to.Gluten is toxic!We all have our stories on how we found out about ''THE SPRUE''and how doctors.famlies,friends thought we were crazy.DH just as hard to explane.Gets some fired to all because it looks like your not taking care of your self.Its all just mading!!!!!!!!!!!!!!!

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A pill cannot cure it, so there is no incentive for pharmacy companies to educate people about it. No one has committed a horrific crime and blamed on celiac disease, so there is no publicity value in it. We just have to do our best ourselves!

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Yes, this bothers me too. Sometimes when I tell people or I ask if something is wheat free/gluten-free at a restaurant people don't understand. I feel like people sometimes think I'm on some new age diet, when really, if I eat that stuff I'll be sick for days and days.

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You're right. Until I knew what it was I too thought it was a "new age" fad diet (really did). Like low carb. Now I call myself the Celiac Ambassador as I try to educate all who'll listen as to what it is, etc. I know I am boring some people, but maybe it'll stick in their heads & they'll recall the info later on if they hear about it again or if a relative comes down with it.

I pass out brochures from the Celiac Sprue Assn. I've even written up my own one page hand out and I leave copies of it at the supermarket.

I feel like an evangelist and celiac disease is my religion -- I will set you all gluten free!

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I educated the local butcher about it this morning. He can get me beef and pork that is only grain-fed, with none of the hormones and other garbage, but I will have to buy 1/2 of the animal to get it. I am calling all of my family to see if they want in on it. Meat with no additives is such a blessing for me!

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celiac disease,

I totally agree with you. It's very annoying (to say the least) to have to go through a detailed account of exactly what Celiac Disease is etc... I think it is getting better though 'cause now I run into people who say "oh yeah I know someone who has that." So time will tell I guess. :huh:

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    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
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