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Member Since 01 Apr 2011
Offline Last Active Jan 10 2015 11:35 PM

Topics I've Started

Can Oats Or Dairy Raise Antibodies?

11 December 2014 - 10:08 PM

My 11 year old son has been feeling lousy for a few months, stomach pain, diarrhea, very tired and very depressed. Since this was EXACTLY how he was before his diagnosis 4 yrs go, I took him to the GP for bloodwork. Low Vit D, Iron and Zinc, and his ttg is sky high. Last check was about 18 months ago and everything was normal.

We have three celiacs, so the whole house is gluten-free, and we know the drill regarding cross contamination. He is homeschooled, and when he goes to a friends house the parents are very conscientious about how to feed him. We eat out about once a month, at the two places we know take extra precautions to avoid any cc- Pizza Ranch and Red Robin. His sister and I are doing fine, antibodies at zero, and I just had an EGD with no damage...so if he is getting cross contaminated somewhere, it would be unlikely that we wouldn't be also.

I do suspect a sensitivity to both dairy and oats. (dairy seems to cause skin issues, oats make him gassy.) He doesn't eat a ton of things with oats, but definitely has regular exposure to them. The ones he does eat are gluten-free oats.

I know about molecular mimicry, but am a little fuzzy on the science. If that is what is going on, could his exposure to oats and/or dairy cause the increase in antibodies? And if so, is it logical that for approx. 3 years they did NOT cause an issue, but NOW the immune system has become confused?

He will be following up with a GI, waiting for a call back, but am really puzzling over this and would appreciate your insight! Thanks

Is It Possible For A Dx Celiac To Not Have A Problem With Barley?

01 May 2014 - 07:10 AM

Monday I went grocery shopping after getting some heavy duty painkillers at the Dr for a separate issue. (don't worry, I didn't drive) Anyway, never shop for gluten free groceries when you are stoned. I bought two boxes of Kellogs Cocoa Krispies. In my head they were Moms Best Coco Krispies, which are gluten free. Kelloggs however, contains barley malt flavoring.

Tuesday I ate two huge bowls (still apparently under the influence? I dunno)

A couple of hours later my daughter comes screaming "Mom! Did you eat these? They have gluten in them!" 3 celiacs in the house, we know our stuff. Unless we are drugged.

But...I had ZERO reaction. Not an ache, or pain or itch or even a fart. All 3 of us had positive blood work and biopsies done 3 years ago, so I know it didn't go away...(in my dreams). And any time I have had any cross contamination with wheat, I barf my guts out. An accidental restaurant enchilada that was "so good I cant believe it is corn! (because it was wheat!") sent me to the hospital for three days last year. Is it possible for a celiac to be bothered by only certain forms of gluten? Is barley gluten less potent? Or is malt flavoring superheated or something? I'm kind of baffled...

Misery In Need Of Company. Worst Place You Have Been Glutened In? Please Share!

17 February 2014 - 10:58 AM

I have not posted in some time, but today am finding myself in need of support. Yesterday was my husband's company party, a beautiful dinner at a local winery. Out of consideration for me, his region manager had specifically requested the caterer to prepare several gluten free items. Since I have never even met the man, and he only knew about my celiac dx from a conversation with my husband some time ago, I was very appreciative.

Despite the effort being made, I still grilled the caterer myself regarding preparation. Since she had made everything herself, she was very informative of exactly what went into the meal. I was however, a bit careless. I did not ask her about cross contamination...did she use the same spoon as in other dishes, etc. I knew I should, but I was too self conscious, especially since thy had already gone out of their way for me. How would it look if I refused to eat the prime rib because I found out she had used a basting brush that had previously been used on gluten? So, I took a chance.

So, so stupid. I react pretty quickly to gluten, and there is no mistaking when I have been hit. It is a distinct sensation. 20 minutes after eating and I was running for he bathroom.

Except this SMALL winery has only one bathroom. Which is ten feet from the table where everyone is seated. And I am in there for an hour, sweating and cramping and desperately wanting to vomit and get it over with. And I KNOW they can hear everything. Of course when I come out, everyone notices, and there is no discreet way for my husband and I to slip out. I know I am not done yet, and am just desperate to be in any bathroom but this one. Meanwhile, a few people who apparently DIDN'T notice what was going on are trying to make small talk wih me as I fumble with my coat and try not to pass out while I am standing there, signaling my husband for the keys. Finally I get his attention and gasp about something about how I am sorry but I have to leave because I am sick. But trying to speak loud enough for them to hear, while not being so loud as to alert the whole table is difficult, so I finally just dash past everyone and head for the door. My husband offers brief apologies and finally comes out, takes me to a nearby McDonalds which at least has two stalls so I can monopolize the bathroom for another two hours.

I am beyond mortified. I know I made a scene, I can just imagine what his manager must be feeling, and I am pretty sure some people think I am just a stuck up snob because I was pretty much ignoring everyone in my effort to not poop my pants while at the table.

In three years I have had some bad glutenings, but always around friends who knew and understood for the most part. (Save for the amusement park where I laid on the dirty bathroom floor next to the toilet for an hour. Yuck.)

This time though...it just sucks. I hate having this stupid disease that makes the simplest things so complicated. I hate drawing attention to myself and feeling like everyone just hunks I WANT the attention. If I don't eat, it draws attention. If I bring my own food, it draws attention. If I make inquiries regarding the food and its preparation I look demanding.

I appreciate that I have much better health now than before my diagnosis. And I know there are far worse conditions to have. But today I am in full on feeling sorry for myself mode. The only other people in the world who can REALLY understand are right here.