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Member Since 08 Jul 2007
Offline Last Active Feb 12 2008 01:49 PM

Topics I've Started

Nighttime Reactions

16 January 2008 - 01:03 PM

My daughter has celiac... positive blood work, biospy confirmed, but she does NOT have the "typical celiac reaction". When she gets gluten, or milk or soy it always seems like her reaction comes at 9 or 10 at night, a few hours after she goes to bed. Usually i put her in bed, she falls asleep (we still have a video monitor in there, because shes across the house) and then a few hours later she sits up in bed and starts yelling "MOMMA, i need puke!!!" Last time, it was due to a soy intolerance (soy is fairly new for us) and my husband went in and got her, and when she came in to our room her belly was the size of a basketball (literally, i wish i would have taken a picture for the other thread that needed one) and she threw up twice and went back to bed. Anyone else have a similar experience? I always have a hard time figuring it out, because her reaction could be 3 hours later or 12 hours later. Anyone else have vomiting for their main celiac reaction rather than diahhrea? I never really see anyone mention it, although i read it is a less common reaction. Anyone?

Blah Soy Intolerant Now As Well

23 December 2007 - 10:55 AM

Hi guys havent been around in a while, sorry for the long absense... i have a million excuses, but i hate texcuses, so ill skip that part :)
My little girl (3 years old, diagnosed july 07) had the worst reaction the other night. Her belly swelled up like basketball size, she was in pain, burping, tuting, shaking, she was terrified, and she was throwing up. She kept making me put her on the potty, but that was uneventful. This went on for about an hour and finally i called her GI dr. (this whole thing is going on at 11 pm on a sunday night) I really just called to ask if there was anything i can give her, but he told me to take her to the ER. We didnt go, because we had just gotten released from our week long stay with our little boy 4 days before this, and i just kept thinking there is nothing they can do, and im going to be so frustrated explaining celiac disease to people that went to medical school. So we're pretty sure that she has formed an intolerance to soy, shes already intolerant to dairy, and she had drank a glass of soy milk a few hours before this all happened. Her GI dr is letting me take her off of soy for a week, and if she has no more problems he says that we can hold off on redoing her EGD (blah) SO far so good!!! Anyone have any suggestiong for any over the counter remedies that can help make her reactions less traumatic? Homeopathic suggestions accepted as well! I wasnt sure if pepto bismal or tums or anything like that would help at all. Any suggestions would be greatly appreciated. We avoid gluten like the plague, but she keeps forming additional allergies, and i would like to be better prepared if this happens again! (if thats possible)
Thanks everyone!!!

Sooo Frustrated!

10 October 2007 - 11:19 AM

OK, i thought about putting this on a different board, but seeing as the only people that can relate are the "parents of kids or babies with celiac disease" here i am. Our 3 year old (7-23-04) is recently diagnosed with celiac (7-1-07). I asked her GI specialist about my husband and i getting tested, and his "theory" on the whole thing was- you both need a blood test, but if you have gi symptoms the blood test is not good enough, you also need an endoscopy. Well i have no GI symptoms at all, but through trial and error i have found that i can not get my insurance to pay for my blood test unless i have symptoms, so im going to wait a few months, come up with some symptoms, and get my test. My husbands test was covered, and he had it done last monday. He went to his appt. alone (my first mistake, as he knows nothing about celiac, other than not to feed our kiddo stuff i havent approved) and apparantly he told the dr. his symptoms, which include, diahrrea (pretty often), constipation, gas, belly aches, and blood in his stools (which my 3 yr old also has). Well apparantly this Dr. heard blood in the stools and completely ruled out celiac (he still did the blood test because my husband new better than to come home without doing it ;) he told my husband an endoscopy was not needed but a colonoscopy is. That frustrates me, because he sends my husband home with a pamphlet about the importance of screening for cancers when there is a problem, and im sitting here thinking, arent cancers a long term affect of untreated celiac disease!? Why not investigate what the cause may be at the same time as trying to find the problem!! My husband has had symtoms of celiac his whole life, starting from when his mother introduced solid foods, and he became lactose intolerant, she always says he got better, but then eventually formed an intolerance to soy as well. He and his sisters all had potbellies as children, although they were skinny kids. My husband and one of his sisters are also diagnosed with ADHD. His celiac blood panel came back negative today. I'm worried that his sisters and parents might think that if he showed up negative, it must come from my side, and they wont get tested. Am i overreacting? Should i drop it and give this dr. the benefit of the doubt? Should i insist they do the endoscopy when they do the colonoscopy? Should i make him switch dr's, does he sound like he might be one of those dr's that know nothing about celiac disease? Thanks guys!

How "protective" Are You

03 October 2007 - 07:44 AM

OK, protective is probably the wrong word, but for lack of a better one, there it is! What i mean is, not that any of you let your kiddos eat gluten, but how careful are you to prevent it? Are you okay with food produced on equipment that produces gluten? Made in a facility with gluten? What about restaurants, do you even let them eat things that should be gluten-free, for example veggies, salad, maybe grilled chicken? I find myself letting my obsessive side get the best of me. I've decided that it is too risky to let a restaurant prepare her food. Anytime we go out i take her a sandwich, fruit cups, veggie cups, et cetera. I am also freaked out by things that appear gluten free, but when i call them they say that they cannot guarantee a gluten status, they do clearly mark WBRO. I don't know why thats not good enough for me. We are down to a fruit/ veggie/ meat/ box marked gluten free diet. My little one is only 3, so i feel like she wont be able to tell me if something is making her sick. My plan is to start adding things back in (yogurt, cheese, everything else etc.) slowly after 6 months or so. She has only been gluten-free for a month. Am i being unreasonable? She's a good eater, and she's happy! Anyone else this obsessive!?


13 September 2007 - 12:29 PM

forgive me if this has already been covered... what do you guys think about medicalert bracelets? my three year old has celiac and asthma. necessary or no? thanks guys!!!

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