seaking

I have a nephew who almost died at 18 months, they did every test in the book, they were sure he had celiac, but the tests were deffinately negative... In the end we found out he had severe cassin and soy allergies/ sensitivities and his system just shut down. It seems to be almost the same mechanism that causes celiac but a different protien. They never said there was a specific name for it. But we put him on goat milk, and cut soy out where ever possible and he's okay now. anyway the point of this story is that maybe she's having the same symptoms as celiac with a different trigger.

Good luck!

I'm wondering the sam thing about my 2 yr old! I am gluten-free since June, and so my 2 yr old doesn't get alot of gluten cause I try not to have it around, but I realized today that he's getting really cranky & having diahrea the day after he has alot of gluten, little bits don't seem to affect him much but he's never been completely gluten-free. I'm trying to decide whether I'm being neurotic or not. My kids also get the celiac disease genes from their father's family, I think he has celiac disease but he refuses to be tested but others in his fam are positive. Does this give my kids a double whammy? If they have it, I deffinately want an official Dx though, because schools are not going to be very accomidating about mom saying they don't eat gluten cause I think they have this but I never got them tested. If you have a DX they're protected under the people with disabilites legislation and the school has to make appropriate accomidations to keep from making them sick, providing gluten free areas in the lunch room and keeping gluten out of the class room. I know for myself even slight cross contamination makes me sick for days. If my kids have this, I want to have the paperwork to back me up and keep them safe and healthy away from home., just my little soap box dance, in my personal opinion, the dx isn't that important, if you feel better on the diet, more power to you, but I know from hard experience that doctors and schools and work, even friends and family will not respect that, but if you have the Dx they have to shut-up and respect the problem.

good luck!

Thanks alot for the input, I'm glad I'm not alone in that reaction! I do have a diagnosis, I was a "silent" celiac for 17 years, with migraines, mood problems, hormone problems, fertility problems, weight problems, joint pain, and fatigue. I never had much in the way of gi problems beyond reflux & what could be atributed to having my galbladder out & not eating right. I was having trouble with my reflux & food getting stuck in my throat so my gp sent me for an egd to get my throat streached & make sure there was no tumor or anything & it came back with celiac disease. I continued in denial until I saw the gastro and got a positive blood test. So there's really no doubt about it. I was really shocked by the dx, it didn't help that my husband left the same week! But I've tried hard to be good at the diet, and for the most part I feel 1000x better & I've lost 50 lbs. I'm just really irratable with everything this week. I will try to find somewhere else to go, or maybe just not eat when I'm at my mom's I'm afraid anything I bring will be contaminated by the flour in the air. It's hard enough to not be able to eat all of my favorite gluteny foods anyway, but to go without and still get sick, it's like taking a recovering alchololic to a bar, making her watch everyone else drink without touching a drop and then she still gets stuck with the hangover & the dui in the morning, how fair is that?!! and yes I know lifes not fair, I'm just being GRUMPY today, Thanks

I have been gluten free since july and I've done pretty good, I've had a few "mild" reactions, mainly from cross contaminations. I usually react within a few hours, and I get the stomach cramps, headache exhastion dh and all that but only the fatigue has lasted more than a few hours. So on sat night I was feeling tired & iratable, crampy ect, just thought it was PMS, but then I woke up at 2 am with dh, kept me up ALL night, all day sun I just fasted, but I still had dh, and then I got horrible headache and body aches, worse than I've ever had with the flu, and I was just shaking & crying. I finally took a couple benedryl & slept in the afternoon, then I ate before bed & I was up all night again. Mon I wasn't nearly as bad, just so tired and still crampy ect.

Anyway, I'm pretty sure it was a gluten reaction, I had some chili at wendy's that night which is usually fine, I eat it alot, but it tasted a little different, I think some "Helpful" person contaminated it.

I'm supposed to be going to my mother's for thanksgiving, & they're not too supportive, even though I have a Bro in law who is gluten-free too. I was really worried about getting another reaction like that, I can't take it, it was aweful, & I'm a single mom I can't afford to be that sick! I know I can bring my own gluten free stuff, that's not a problem, but my mom grinds her own wheat and makes home made wheat rolls right before dinner. I KNOW that's going to contaminate EVERYTHING in the house. I tried to talk to her but she didn't believe me that the reaction was that bad or that I could be so sensitive, she tends to think I'm a hypocondriac, or just generally mentally ill, she says the celiacs she knows don't have problems that extreme & aren't that sensitve, so I must have had a stomach bug instead, and besides, a gluten reaction would just be stomach stuff not the headache and joint aches, so that proves it wasn't gluten.... and she's a NURSE I'm so frustrated I'd like to hit her over the head with my gluten free cook books! I thought about just not going to thanksgiving, but it's hard enough being the first holidays since my dx and divorce, I just don't know what to do. I wanted to have it at my house & just have her bring the rolls from her house, but she won't hear of it, I even have a bigger house! any suggestions, or moral support? does anyone else get reactions that bad? did I just have a flu? I don't really think so but I've been wrong before.

Thanks

Vitex will help with those problems, but it has another affect, it increases fertility, so just be warned. Another herb that helps a TON with all that is Red raspberry leaf, in a tea or in a pill form. I've had problems with horrible cycles from hades ever since I started having kids 10 yrs ago, the first 3 months gluten free were even worse, but the last month was pretty manigable, knock on wood, I'm not sure what I changed, or if it's just a matter of my hormones changing as my bod heals.