Search Results for 'celiac'

[Anonymous]

i heard once that the reason that it is difficult to diagnose celiac disease when kids are really young is because sometimes they don’t start to produce Ttg antibodies until they are a little older.

i like gluten free pretzels better than wheat pretzels, but i can’t afford to eat them—-i only buy a couple of small bags for my girls.

i wish i knew which of us, kevin or i, carries the celiac gene–not that it really makes any difference—but at least our families might think to get tested if they started to get unexplained medical problems.

one of my celiac girls is not allergic to wheat, either—but she is the only one that has had food allergy testing. my dad seems to be allergic to wheat—he sometimes will have almost an anyphilactic reaction—i know i murdered the spelling of that word.LOL!!!

my mother had some blood allergy testing done and she also reacted to wheat.

if i forget to get the danish recipe posted for you—-please remind me—-my memory is kind of bad.

[Anonymous]

Yes you have it right Johnny, Maggie and Liam. They are 99% sure with Maggie that she has it. The blood test was positive. She had a bad reaction to wheat in August. We controlled her vomiting with cereal. The zegerid helped a lot but she still would spit up every 5-10 minutes 24 hours a day. She had no quality of life. One day I gave her malt a meal and she had a bad reaction an hour or so later and it lasted 4-5 days. She vomited and had horrible diarrhea. She does not have a wheat allergy. Then they did the blood test and it came back positive. I understand with celiac disease that it usually is not caught until age 5. What I have not figured out is if it takes the drs that long to diagnose it or if it does not appear until that age. Anyway, since I have been gluten free she has done really good. She is still on zegerid but I am starting to wean her off. She is our gluten meter (not that I do intentionally). If I eat something with gluten in it she will start to spit up (she is breast fed). A month or so ago we went a few days with her spitting up all the time I could not figure it out we finally realized it was from the envelopes I had been licking. Who knew.

When I say Liam does not eat I mean he does not eat. He did not eat his Halloween candy, special treats etc (I bought two donuts for him and his brother today. Liam’s is sitting on the table with the a bite taken out of it that will probably be the only thing he eats today a bite). Right now he can have whatever he wants gf or non gf (yes we know we are poisoning our kid). He still is not eating very much not enough to sustain his 50 pounds. Like I said we are waiting for the GI clinic. Liam has always had eating problems since he started on solids. Now looking back on it I know he has celiac’s disease from a baby on. Liam has JA also so he does not know what it is like to feel good. We know now all of his problems are from celiac disease but he has texture issues and he also has super taste buds so a slight variation in food taste off for him. Anyway what we are thinking (pediatrician and us) is that he will go onto a feeding tube and we will go 100% gluten free. We can take the stress away of forcing him to eat. I cannot tell you how stressful it has become in our house convincing him to eat and its a loosing battle based on the amount of weight he has lost. It is insane trying to get any calorie in him. He loves water and life would be good if we would just allow him only to have water. We went to the movies for Thanksgiving and my husband tried to convince Liam to have juice or soda. Liam wanted water. I am sure the people around us thought we were crazy as Liam said I just want water and John was NO you need to have a sprite, Liam no just water will be fine and John was NO Liam mom says you have to have a sprite or juice.

I am not sure if I said or not but my husband started getting sick in September. All the classic symptoms of celiac’s disease of course he does not think its celiac’s. Finally convinced him to go to the dr. we got referred to a GI dr. and we say him last week. He wants to do a colonoscopy immediately. His next day for that is on Thursday. We actually like this GI dr. He was knowledgeable (shocking a dr. actually knowing what he practices ) and he had good people skills. I wish we could take Liam to him but he only sees adults.

I would love the recipe for the fruit and cheese danish. Liam will not eat it but I will. Funny thing is my son Levi who is 15 months older loves most of the gluten free food I have found.

[Anonymous]

heidi—do i have athis right—it is maggie, liam and johnny that have celiac? how were they able to test maggie at such a young age—i assume by biopsy since the blood tests are not very accurate that age—-although i figure thy must be positive for the kids that are really sick and have a lot of damage.

so withliam, do you mean they are allowing him to eat whatever he wants that is gluten free, or anything that he wants, period, gluten free or not?

i’ve got a great recipe for a fruit and cheese danish that is gluten free if you think that might tempt him.

[Anonymous]

We are really struggling right now. Maggie our baby was a peice of cake and she improved 1000% being gluten free. She still takes zegerid but I have started to tamper it down.

Our 8 year old has been a nightmare. He has only eaten about 10 foods in his entire life. We have struggled off and on with him going days not eating. When we went gluten free he stopped eating and lost a bunch of weight. He is small to begin with. I guess Liam looks like the classic poster child of a celiac’s kid. Both our rheumatologist and pediatrician have referred us for emergency help at our Children’s hospital for the GI clinic. We are part of the rheumatology clinic at Children’s and Liam has been seen in GI clinic before so we were suppose to be fast tracked there. I was told by the apt person Children’s hospital’s policy is to have the apt made in 48 hours that was 10 days ago. I have all kinds of issues with Children’s GI clinic after Maggie was hospitalized there. Thankful Dr. Philips helped us at Marci and Maggie is doing awesome. 21 pounds awesome at 6 months 3 weeks. Pretty good for a baby who would not gain weight and was in newborn clothes until 4 months old. Anyway, just from reading on line at Columbia University has people on staff that deal with kids like Liam so if we have to fly NY we will. I will be calling on Monday. Our pediatrician and my husband and I get that Liam needs to be gluten free but when he goes 7 days without eating we have problems. Right now he is allowed to eat whatever he wants when he wants no limitations. I can name everything he has eaten in the last week on my two hands.

[Anonymous]

we make the pumpkin muffin recipe out of our old better crocker cookbook and we add chocolate chips to it—this is one of our favorites. we double the recipe and add about 1 tsp. of xanthan gum. we used 2 cups of bette hagman’s featherlight mix and 1 cup of sorghum flour,we brought them to our first informal celiac groupl meeting tonight. i think one of my girls said one of the non-celiac kids ate about 5 of them.

[Anonymous]

heidi—we cook all of our meals gluten free at home—so nobody gets a choice for meals. we do keep some crackers, bread and cereal that have gluten for the other kids because it helps with the grocery bill.

oh yeah, after about a year of being gluten free, both of my twins were able to go off of prevacid. they only get an occasional flare of reflux, now.

[Anonymous]

Anne wrote: My ds was tested for celiac and the blood test came back negative. However, he has severe reflux, is on meds, and is at the least gluten intolerant. He is also dairy/soy/beef intolerant. He has failed food tests recently. When he eats gluten products he has horrible time sleeping and gets a little pustule/pimple like things on his legs. He screamed through every night until age 17 mos when we took gluten out of his diet. Things steadily improved from there-on. Just thought I would share. It’s an interesting thing to consider. I haven’t yet even thought about what to do with another child if/when we have another with food introduction…

Columbia University has done studies on the high false negatives in this country. Just because you get a negative blood test does not mean you do not have celiac’s disease.

[Anonymous]

Well our long journey has ended. I have 5 kids with reflux. 3 who still suffer from it. GUESS what? They have tested positive for celiac’s disease. My husband is being tested on Wed. The only one who is gluten free is Maggie. We are struggling with our 8 year old to get him gluten free and 17 year old thinks well its all hookie. He is in college so its not like we can tie him up.

[Anonymous]

Thanks for all the great hellos Kim, Ann Marie, Christine, and Laura!! I can’t believe that most our little kids are already (or almost) 4! I hope everyone had a wonderful and happy holiday!

Christine — Sylvia’s weight seems pretty good for her height, but I definitely understand your concern about weight and about celiac. I haven’t been great about the diet and I know that I need to do better. Generally I feel pretty good just doing a mix of grains, but I’m sure I could cut out a lot of my sinus/cold issues if I went cold turkey on gluten. I’d love to “talk” with you more off forum. The best email address for me these days is attached to my profile. If you can’t get me through that let me know here. Congratuations by the way on the bigger house! It must be nice having more room for everyone.

[Anonymous]

christine, i have thought about you a number of times—but i didn’t know what had happened to your e-mail address. i have wondered how the celiac diet is going for you. it is good to hear that palmer is doing so well. sylvia is about as wild as a march hare. she turned 4 in october and still only weighs about 35 lbs and is just barely over 39 inches tall. i keep worrying that she might have celiac like the other kids—–especially with the enamel problems with her teeth. she also seems to have circles under her eyes these days. it is time to test the other kids blood levels again—so i think i need to test sylvia again. now that she is over 4, the test should be more accurate than when she was younger.

we have just moved into a large house with 6 bedrooms and a large family room—-it is nice to have more space for the kids to spread out.

[Anonymous]

With the solutabs I would hold it in his cheek with my finger b/c at this age he still has the toungue thrust reflex so holding it with him as flat as possible should do the trick. The powder is going to be difficult b/c of the volume involved in mixing it, we tried it and decided the solutabs were much easier. Are you spacing the Zantac and prevacid at least 4hrs apart? if not it can affect the prevacid working. I wouldn’t use oatmeal to thicken at this age as it has gluten and can increase his risk for celiac dz later in life when introduced before 6 months old. I would try to just feed without thickening unless your doc is adamant about that and if they are I would look into using something like Simply thick (gel based thickener) instead of cereal. HTH.

[Anonymous]

if they suspect celiac, she needs an endoscopy with biopsies—not a colonoscopy. she also needs to be on gluten for the tests to be accurate—whether endoscope or blood test. IgA deficiency happens more often in the cleiac population than in the regular population. one of my kids is IgA deficient, but the disease has not activated in him. also, if there is an IgA deficiency, specialized testing needs to be done to detect celiac, but the tests are not accurate before about 3 years old.

[Anonymous]

if they suspect celiac, she needs and endoscopy with biopsies—not a colonoscopy. she also needs to be on gluten for the tests to be accurate—whether endoscope or blood test. IgA deficiency happens more often in the cleiac population than in the regular population. one of my kids is IgA deficient, but the disease has not activated in him. also, if there is an IgA deficiency, specialized testing needs to be done to detect celiac, but the tests are not accurate before about 3 years old.

[Anonymous]

I’m a member of a different forum and a woman posted a question that I thought many of you would know the answers to. Any thoughts would be greatly appreciated:

I have a two and half year old girl. She started to have blood and mucus in stools at 6 weeks old. Still does. Colonoscopy revealed no source, but large kinks in bowel prevented getting up far enough. Exclusively breast-fed til one year, then allergic reactions to milk, alimentum, nutramigen. Positive skin tests to dairy, egg, negative skin tests to peanut, tree nut, soy, beef, sesame, but she gets hives, swelling, etc, when nuts, peanuts, put against cheek. Possible celiac, but off gluten for now, as second year of life she dropped from 85th to 5th percentile, chronic diarrhea, reactions to fruits, vegetables as well all that time. Sick alot also, then blood tests revealed IGA levels absent. Diet brought down to chicken, rice, potatoes, rice milk and neocate. Growth now caught up, but introduction of any new foods causes rashes, diarrhea, hives, burns and blisters and yeast in diaper area. Scalp is very bad with dermatitis/yeast since intro of foods at 1 year. (Would not even try foods until almost 1 year, aversion, maybe natural defense) IGA deficiency is certain, but what else could be going on and what could be causing the blood and mucus? Allergy specialist thinks that blood/mucus are not allergy, or IGE mediated response in system. Gastro specialist not sure. I am at my wits end. Doctors think another colonoscopy is needed soon, even though it is risky, as bowel was almost perforated last time, and daughter had to have three doses of ketamine, as she kept waking up. Please, any thoughts. Anyone else out there like this?

[Anonymous]

I don’t know if this is nation wide and won’t help most of you all right now but for the future if it is… I know the Outback steakhouse here has a gluten free menu you just have to ask for it…. I have a friend who has celiac and she eats at outback often… you may want to check into it to see for those times when eating out is the only option.