Search Results for 'celiac'

[Anonymous]

Sheri,

I’m so sorry to hear what happened. I hate having to rely on others including DH to things that are important! I have the feeling the same thing is going to happen to us for our upcoming appointments with the Developmental and the Celiac MD. I wished I could just get all of the records and do it myself!! I hope everything get situated soon for you guys! Big hugs!!!

[Anonymous]

My son has silent relux – no spitting but BURPY as heck and what doesn’t get burped out turns to gas, which is worse. He got tested for celiac and food allergies which are all negative. He’s on soy formula anyway and a very limited veggies,chicken and fruit diet. He has no teeth.

He’s ok when he’s awake. If he fusses, usually burping him does the trick. Sleeping is the problem. I used to keep him propped up but he’s too mobile and the Tucker sling’s too small. He wakes up screaming and arching. If I can get a burp out, he might go back down but if it’s gas, he’s crying the rest of the night. Are there any other sleeping ideas out there?? He’s probably slept through a dozen nights in his life.

He’s on Prevacid and Mylanta. I give him Prevacid and then feed him 15 min. later – should I wait longer??? Also, what constitutes an empty stomach – 2 hours? He has several small meals so it’s hard to time it all. I give him a 5 oz. bottle an hour b/f bed. Should I aim for 2 hours before?

I just ordered Colic Calm which is homeopathic to see if it helps at all. The charcoal in it is supposed to soak up the acid. We’ll see…

I keep thinking I’m doing something wrong (I have in the past, giving him gassy foods and letting him cry at night which only gave him more gas.) I’m pretty discouraged.

[Anonymous]

i don’t, but i can try and remember to ask our ped gi. the girls have an appt. with him next week—just follow up for their celiac.

[Anonymous]

What they saw was spasming of the duodenum. My pedi consulted a pedi GI specialist (we don’t have one in my town) and he said it was most likely a protein allergy/intolerance that caused it. I have wondered about celiac myself but have read that it usually starts after exposure to gluten directly. There’s not much info about breastfeeding and celiac. I am on the elimination diet so I don’t know if she’ll react to gluten. Perhaps I should eat some flour.

Do you have any more information about spasms in the duodenum?

[Anonymous]

i’m a little confused about your test results. an upper gi can’t diagnose damage in the duodenum. damage in the duodenum would have to be diagnosed with a scope and lab tests. usually, damage in the duodenum would point to celiac disease, although milk problems have been known to cause similar damage. they say that a child cannot develop celiac until they have consumed gluten, but they also feel that it is possible that gluten can be passed through breast milk.

[Anonymous]

good info, sherri. we bake with bette hagman’s featherlight mix most of the time because the results are so good. however, since i feel like it doesn’t necessarily have the most nutrition, since it is mostly starches, i like to add sorghum flour and sometimes i add flax seed meal. example: i use the betty crocker buttermilk pancake recipe—doubled for our family. it uses 3 cups of flour. i will use 2 cups of featherlight mix and 1 cup of sorghum flour—and i had approx. 1 tsp. of xanthan gum. the pancakes turn out great. if you are also casein free, i would imagine that you could use soy or almond milk and add a little vinegar to make sour milk to replace the buttermilk.

we also keep a canister of carol fenster’s baking mix made up in the cupboard, although i do not use it as much.

the bean flours are wonderful to bake with. they really bake up nice—just don’t taste the dough when it is raw—NASTY!!!!—-but it tastes fine once it is baked up.

i also bought myself a new grinder and i grind my own rice flour and sorghum flour. i have only ground white rice, i haven’t tried brown rice yet.

a comment on tapioca flour for thickening—–it thickens, but it grosses us out to use it for thickening because it looks alot like the slime you always see dripping from any creature on a sci-fi show!!!!

this is a great topic for you to start, sherri, since i know that a number of people on here have kept their kids off of gluten, even though they did not have celiac—-their kids just seemed to do better.

we do alot of baking and we actually use most of our old favorite recipes and just use the gluten free flour blends and xanthan gum. the twins did not do alot of cookin before they were diagnosed, but they have both become excellent bakers since being diagnosed with celiac.

bette hagman’s book ” the gluten free gourmet bakes bread” is a really good book for people that have more intolerances than just gluten because she gives various substitutions for alot of different allergies or intolerances with quite a few of the recipes. i have not been able to find my copy of the book since we moved!!!

bob’s red mill is a good source for buying gluten free flours in bulk. it really brings the price per lb. down. i am going to put in an order through azure standard next month (mostly because i can get tinkyada pasta in bulk) i’ll let you all know how their selection and prices are. we have a local gal that orders for alot of people, so shipping is only about $3.

probably one of the things we bake the most are muffins—-our favorite is pumpkin chocolate chip.

we have beeen able to recreat almost everything we baked before—bread is the hardest. we make muffins, pancakes, waffles, biscuits, cake, cookies, pizza, fruit and cheese danish, sweet rolls, apple pie, pies with crumb crusts, frog eye salad and any other pasta dish.

gluten free can be inconvenient, but it is not hard.

sherri, have you tried coconut flour or hazelnut flour? they both seem like they could add some pretty good flavor.

kevieb2008-07-09 18:03:11

[Anonymous]

hi everyone! i found something on another list that i thought might help some children here on this forum…i always go back to IRF since that’s where all my kids healing first started (sniff sniff)…

here’s the link about vitamin k and nosebleeds and a variety of linkeages: http://www.ctds.info/nose_bleeds.html

happy 4th! amanda 😉

[Anonymous]

type I diabetes also runs in families—–it is piggyback on the same gene as celiac disease.

if you are worried about it—asking for testing would be a good idea. even if it shows nothing, you will have gained peace of mind which is worth it’s weight in gold.

i have heard of a child being diagnosed at a year old. i asked how they figured it out in a child that young. i was told that the baby had become dehydrated—-but i’m sure there can be a wide range of symptoms.

my brother has type I diabetes. he did not develope it until he was about 23 years old—-of course, he was old enough to say, “i’m having to pee too often and my eyes are bothering me.”

Beth—do the diabetic patients you deal with get tested for celiac disease on a fairly regular basis? i have heard that when people have celiac and type I diabetes that they are usually diagnosed with diabetes first.

[Anonymous]

hi heather,

we don’t have any history of celiac disease in either of our families, as far as we know. there is probably someone with it in both or our lines that has never been diagnosed—since kevin and i both carry one of the genes for it.

we have 11 kids between the 2 of us. kevin’s 2 older kids have not been tested genetically, but my 2 from my first marriage and the 7 that kevin and i have had together have all been tested genetically. all 7 of the kids that we have had together carry one of the genes (3 of them have celiac) and one of my kids from my first marriage also carries one of the genes. my oldest son is the only one who does not carry it. we joined a celiac study last year, so all of our genetic testing was done for free—-otherwise it would have cost a fortune.

now we know that we need to be tested periodically to see if the disease has activated in any of the rest of us.

let us know what you find out.

[Anonymous]

I just posted this under “HELP,” but I thought I’d post here too, just in case. -Thanks! Heather

My son had his endoscopy yesterday and I’m not really sure what to make of the results. The doc said that his esophagus and stomach actually look good (no signs of irritation that would suggest allergies), but he noticed some mild edema and granularity in the duodenum. He briefly mentioned Celiac disease, but went on to say that it is unlikely at this point since Colin is only 5 1/2 months and has not had any solids with gluten. He took biopsies, but the results won’t be back from the lab until next week. Has anyone else had this sort of result? If so, what did the labs show? My son is exclusively Bfed, and I have not eliminated gluten foods from my diet, so it’s possible that the gluten in the Bmilk is causing problems (I know the research on this is somewhat mixed). However, there is zero history of Celiac disease in either my or my husband’s families (still, I know that anything is possible).

I should probably just sit still and wait for the labs to come back, but I’m not very good at that…

Thanks for anything that you can share.

[Anonymous]

Hi, I do not know the answer to this, but we have a user named Christine- her username is ‘kevieb’ who has 3 kids with celiac. I don’t think she or her DH have it either. I might be wrong. You could PM her or maybe she’ll see this message. You could also copy and paste this message under our Celiac/Coeliac disease forum. I hope it’s not celiac. Good luck.

[Anonymous]

My son had his endoscopy yesterday and I’m not really sure what to make of the results. The doc said that his esophagus and stomach actually look good (no signs of irritation that would suggest allergies), but he noticed some mild edema and granularity in the duodenum. He briefly mentioned Celiac disease, but went on to say that it is unlikely at this point since Colin is only 5 1/2 months and has not had any solids with gluten. He took biopsies, but the results won’t be back from the lab until next week. Has anyone else had this sort of result? If so, what did the labs show? My son is exclusively Bfed, and I have not eliminated gluten foods from my diet, so it’s possible that the gluten in the Bmilk is causing problems (I know the research on this is somewhat mixed). However, there is zero history of Celiac disease in either my or my husband’s families (still, I know that anything is possible).

I should probably just sit still and wait for the labs to come back, but I’m not very good at that…

Thanks for anything that you can share.

[Anonymous]

I did. It was a couple of years ago now, and I did see some inital difference, and then not enough to continue, so I used up the bottle and then just stopped. I am curious now if it would have helped him better. I didn’t remember the ice pack, but it was quite a while ago. maybe three years? Carter wasn’t born yet and carter is now two so two years at least.

He does have other digestive discomfort, that I should try it again. I see alot of threads on the probiotics lately and I bet that Dylan would benefit from them. I was thinking he was having trouble with certain foods. I pm’d christine (kevieb) but haven’t heard from her in a bit, but was curious how they test for the celiac gene? I think just blood and then they need to do endoscopy and biopsy to confirm celiac? He just has had some trouble lately and a ton of carbs in his diet so something to look into for him I think….

Anyway, thanks for the info! It makes sense!!

[Anonymous]

for those interested in spec carb diet,

I just wanted to add to the SCD info that for children, they really encourage a dairy free form of this diet which means even cultured butter and natural cheeses should be delayed until the child is showing enough health to be trialing dairy. The way to get around this with the “miracle yogurt” is to use goat milk to make it. This is all pretty well emphasized in the pecanbread.com site and also in the Breaking the Viciousl Cycle book by Elaine Gottschall. Just wanted to make sure I added this as we here are all about the kids!

Hi there Ms Laura! Let me go on with the diet a bit more and see if I learn anything else to add to the booklet. Once I work out the kinks, I’ll email the list owner and see if she’s OK with starting a document bank and putting this in there. I notice lots of other lists have a doc bank and it keep the posting topics from being repeated. I know you have tons of stuff that could be made into docs with your helpful intro! Maybe one for MSPI, one for just reflux, one for allergies and so on… just a thought!

[hellbennt]

THANK YOU!!! Anything to help others! This is related to reflux as a lot of these issues are related! I wonder if there’s a way to post your booklet here somewhere? maybe you could email Karen, the site Administer/owner/creator?