Levels Of Celiac Sensitivity

[kimchrista70]

I was just diagnosed with Celiac in August of 2014, so not even a year yet.  I also have IBS and eating sometimes really stinks, even when I am NOT eating wheat/gluten.  I have learned what other triggers cause my IBS to kick into high gear and I avoid those things as well, but what I am wondering is if there are...and if not, why there are not levels of Celiac allergy.  I avoid all wheat/gluten in foods and drinks, but find when I go out that I don't know how to tell the chef that I have Celiac and am allergic, but I am not bad enough where I need to worry about cross contamination, they don't have to change their gloves, etc..  Is this something that anyone else has run into?  I am wondering how much food am I missing out on because restaurants are worried about getting my food mixed up with the regular patrons.  I completely understand why they do that, as I have friends who have Celiac reactions which send them to the hospital when they are "glutened", but I don't seem to have that problem.  I love eating out and was wondering if I am alone in this thinking. 

[GF-Cheetah Cub]

If you have Celiac, you do have to worry about cross contamination.  

 

My 11 year-old was diagnosed with Celiac in Feb 2014.   She does not have symptoms at all.   However even without outward symptoms, the damage to her small intestine is the same.

 

When we go out to eat, I always let the wait staff know that she has celiac disease, and that she gets very sick with gluten.   So, I lie.   This is because I want the wait staff to tell the kitchen to be careful when preparing her meal.   I would never tell the restaurant that cross contamination is okay because she won't get sick anyway.

[ravenwoodglass]

If you have celiac you HAVE to be strict. You not avoiding CC may very well be why you still have IBS. It is a pain to have to be strict with the diet and avoid things like CC but it is something you have to do to heal. Any amount of gluten will keep those antibodies active and attacking you.

[bartfull]

Please read the Newbie 101 thread in the coping section. If you continue to get low level hits through CC you are risking all kinds of complications, from rheumatoid arthritis to lupus, from thyroid problems to cancer. You need to be 100% gluten-free!

[nvsmom]

Yeah, I'm afraid that the others are right.    A celiac does not always get extreme symptoms from a glutening but exposures will damage your health unless you are very careful to avoid cc.  

 

Anything under 20 parts per million (20ppm) is deemed safe for the typical celiac.  Anything more than that, which works out to approximately one crumb of bread per day, is enough to get a celiac's autoimmune reaction going.  That autoimmune reaction may or may not include one of the 300 symptoms of celiac disease such as,anemia, vitamin deficiencies, diarrhea, constipation, stomach aches, fatigue, headaches, anxiety, confusion, ataxia, arthritis pain, muscle pain, rashes, and depression.  Repeated exposures, from cc in restaurants or kitchens, can lead to other complications.  If you look around the board you'll find that many of us, especially those who went undiagnosed for many years, have more than one autoimmune disease because of (the inflammation from) untreated celiac disease.

 

Some celiacs are more sensitive and find that they react to less than 20ppm.  Those poeple need to be even more careful.  Those with no obvious symptoms (silent celiac) - like yourself- also need to be extra careful because your body may not give off the signals that you're being exposed to gluten.

 

I don't get horrible symptoms when glutened either.  I tend to get bloated, tired, a headache, my BM's get messed up for a while, and my arthritis comes back.  It wasn't life threatening otherwise I wouldn't have been able to live with it for over 35 years.  I was still able to work, have kids, run half marathons, play sports and enjoy life - I just felt under the weather more than most.  Because I was undiagnosed for so many years I ended up with other permanent health problems that I could have avoided if gluten had been avoided; I now have thyroiditis, a blood clotting disease that would have killed me if I'd been born a decade earlier, and arthritis that has me moving like an 80 year old rather than the 41 year old I am.... Avoid taking risks so you can preserve your future health.  

 

And ignore those celiacs who cheat (hate them).  I have met people who don't take the cc risks as seriously because they have met celiacs who cheat ("I can't pass up that stuffing"); a cheating celiac puts the wrong message out there, and makes the world less safe for the rest of us.  KWIM?

 

Be strict. You may have to pass on some foods or bring your own on some occassions.  Yuck, I know, but you'll get used to it after a few months.  Hang in there.

 

BTW, celiac disease is not an allergy.  It's an autoimmune disease (like lupus or type 1 diabetes) that is often described as an allergy so others can understand.

[gilligan]

Listen to the above advice.  My brother doesn't have symptoms either, and eats out all the time.  I'm afraid it's going to catch up with him.

[Jays911]

Best to be careful. I sometimes think I am not that sensitive, but other times get glutened when I don't think I should. Some friends who run one of my favorite restaurants, a farm to table place, told me last week that my soup and salad were gluten-free. I got very sick after eating, and asked them to double check. Turns out there was some soy or soy sauce in the curry soup. They simply didn't know.

[kimchrista70]

Thank you all!  It's nice to know that I am not in this alone, even though this is not what I wanted to hear,  I am grateful that you all took the time to respond..it helps a lot. 

 

Honestly, I've had stomach problems all my life and when I was FINALLY diagnosed it was a relief to know that it wasn't in my head and I wasn't imagining this.  I am diligent about not purposely eating gluten, but I will take your words to heart and work harder.  NVSMOM, all those symptoms you mentioned, I have had most of them and this could be why...I just always assumed it was something else  I am just taking this one day at a time at this point and learning as I go.