Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 It's a chronic infection to certain protein chains like gluten! Here is a web link for you to check out to see if there are any symptoms in your family. Apparently there is an increased incidence in children with DS but it is still quite rare. I have heard the biggest clue is their motions.....soft and foamy, a strange colour and really smelly! Takes a blood test to diagnose - don't worry - Tara won't have it and I'm sure Nicki doesn't either!!! http://homepages.ihug.co.nz/~sylph/faq.html Carolyn Mum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds celiac disease? > From: GVanHouten <rjvh@...> > > Hi All! > Carolyn, what is celiac disease? Is it something with the small bowel? > Why would that effect stature of a child? Last time we checked Tara's > thyroid profile it was OK{6 mos ago}Maybe I should ask about that > disease to her ped at the up coming well visit! Hope IT will be a WELL > visit! > Gail.......Bobby 6, Jillian 3 1/2, and Tara{Ds} 1 soon! > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > 1/937/0/_/598201/_/952549950/ > ------------------------------------------------------------------------ > > http://DSyndrome.com/Multiples > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi Anne, here, we just went through testing for Celiac Disease with our 8 y.o. daughter. She does not have it but we had tried the diet last summer to see if it would make a difference. is a very hard child to feed, she didn't like anything except the rice cereal( mini Chex ) she also has allergies to eggs and milk so she is very suspicious of food, especially if it is new or different. the fact that Asher is younger may make it easier. There are a lot of web sites out there for Celiac Disease. My OB has Celiac and he said he gets all his food from a company In Canada and the food is wonderful. If Asher turns out to have it I can get that companies name and address for you if you want. Just let me know whenever. Our prayers are with you. mom to IgA def, asthma,GERD, chronic sinusitis Celiac Disease? Hi, My son, Asher, who is not primary immune deficient is being tested for celiac disease. I thought I'd ask you all if any of your children had this and what it's been like. Ash has had one positive test for celiac disease: IgA and IgG anti-gliadin antibodies. I don't know much about this disease at all. He's to have a small bowel biopsy next week. I haven't talked about him much with this group b/c he's not diagnosed as PID (He actually makes IgA and now it's attacking his gut- at least, we think it is). My older son is, like me, IgA def. and has IgG2 subclass def. The ped. gastro doc said that if Asher does have it, that both myself and my older son need to get a biopsy too b/c it tends to run along with IgA def. Asher has had a host of difficulties, partic. muscle weakness, etc. Do any of your kids have Celiac Disease? Is the gluten-free diet difficult to do with children? Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 Hi Anne...sorry for the late reply to your post. Have not had a chance to catch up with emails all week! We went through this testing with ...she went from the 97th centile at birth for height and weight to below the 0.2nd centile by 2 yrs...loads of loose often bloody stools...she turned out not to have celiac disease but has eosinophilic enteritis...ironically (as well)she has part of her immune system infiltrating her bowel causing inflammation and bleeding. The docs believe it to be an allergic thing...so was on an elemental diet (no food/synthetic formula) and now has a very limited diet and has a G-tube for neocate feeds. She copes with her limitations very well...though does scavenge at times...we just tend to try to keep her filled up with the foods that she can eat to reduce her cravings for the foods she can't! Good luck with it all...it made a huge difference to us just to have a diagnosis..something concrete to deal with! Mum to Jay (8), (PID, IVIG and EGE, G-tube neocate) and Max (4 months) > Hi, > > My son, Asher, who is not primary immune deficient is being tested for celiac > disease. I thought I'd ask you all if any of your children had this and what > it's been like. Ash has had one positive test for celiac disease: IgA and IgG > anti-gliadin antibodies. I don't know much about this disease at all. He's to > have a small bowel biopsy next week. I haven't talked about him much with this > group b/c he's not diagnosed as PID (He actually makes IgA and now it's > attacking his gut- at least, we think it is). My older son is, like me, IgA def. > and has IgG2 subclass def. The ped. gastro doc said that if Asher does have it, > that both myself and my older son need to get a biopsy too b/c it tends to run > along with IgA def. Asher has had a host of difficulties, partic. muscle > weakness, etc. > > Do any of your kids have Celiac Disease? Is the gluten-free diet difficult to > do with children? > > Anne R > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 from Dale, Mom to Katy, CVID, age 20 Connie, celiac is a disease that changes the celia (tiny hair-like projections in the intestines that aid in absorption. Celiac is very common in kids with IgA deficiency, but not as common with CVID. However, the way I understand it is that some kids are still helped with the special diet even though it is not celiac. The diet includes avoiding everything containing gluten which is found in most grains. There was a recent post listing the diet and a web site for celiac. Hopefully you can find that -- if not, let me know and I'll dig it out for you. Chronic diarrhea is often another symptom of PID. I can't remember what stage you are in in diagnosis or treatment so I can't be more specific. I've also recently posted a lot of stuff on chronic diarrhea. Let me know if you need that reposted. In His service, Dale sewmommy.geo wrote: >Has anyone ever heard of celiac disease? 's pediatrician is >testing him for this since he has taken a dive on the growth curve >and has diarrhea all the time. > >I'm having a hard time finding information on it, and I was wondering >if any of you knew anything about it. > >Thanks! >Connie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Hi Dale, Thanks for responding. has low IgG and his pediatrician considers him to have " Mild Immune Deficiency " . He's had chronic diarrhea for a long time. At 15 months, he was in the 75th percentile for height and weight, and now he is down to the 25th (at 19 months). Our next step toward a diagnosis (after this bloodwork comes back) is to have him get the pneumacocal vaccine and then check his reaction to it. However, she doesn't want to do that until he is 2 years old. Thanks for the information, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 from Dale, Mom to Katy, CVID, age 20 That doesn't sound good at all -- sounds like what Katy was doing before she was diagnosed -- digesting her insides, but hers always showed blood when it was tested. Food just poured through her - often intact. So, you've got 6 months to play " wait and see " and that's not going to be fun. One of the things you might try is to avoid things that are hard to digest and try to puree stuff for him so that it's easier on the gut. I don't know how you get a 19 month old to eat it!! I could put it into soup or muffins for Katy. She would eat anything that was in the shape of a muffin! We spent 2 years trying to figure out what was wrong with her gut -- when what was wrong with her gut was her immune deficiency. Things greatly improved after being on IVIG for several months. But I know it's terrible to have to wait. Also, Katy improved using milk-free Acidophilus capsules -- again -- I don't know how to get that down a baby, but probably your doctor does. Make sure you always check with your pediatrician or immunologist before using a supplement or alternative medication. The only thing I can suggest is to encourage your doctor to call the Consulting Immunologist number and see what recommendations they would make. That consult is free to any physician (but not available to mommies!) That number is 1-877-666-0866. I hope that his own immune system will kick into gear soon and you can look back on his terrible first 2 years and smile and say, Whew! I made it! All of us on this list want that for ! In His service, Dale sewmommy.geo wrote: >Hi Dale, > >Thanks for responding. has low IgG and his pediatrician >considers him to have " Mild Immune Deficiency " . He's had chronic >diarrhea for a long time. At 15 months, he was in the 75th percentile >for height and weight, and now he is down to the 25th (at 19 >months). > >Our next step toward a diagnosis (after this bloodwork comes back) is >to have him get the pneumacocal vaccine and then check his reaction >to it. However, she doesn't want to do that until he is 2 years old. > >Thanks for the information, >Connie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 I have it as does my daughter and several family members. A good place to start would be www.celiac.com Celiac Disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Betty, Anyone here with Celiac Disease? I have to go in for a test at the hospital for it. Apparently my blood tests results show an elevation for Celiac Disease. I'm thinking that I won't be able to eat my wonderful multi-grain sourdough bread? Quite a few here found they react to gluten or have the predetermining genes. There's a sister list Gluten Free Casein Free Native Nutrition GFCFNN Wanita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 On 2/23/06, Wanita wrote: > > > Betty, > Anyone here with Celiac Disease? I have to go in for a test at the > hospital > for it. Apparently my blood tests results show an elevation for Celiac > Disease. I'm thinking that I won't be able to eat my wonderful multi-grain > > sourdough bread? > > Quite a few here found they react to gluten or have the predetermining > genes. There's a sister list > Gluten Free Casein Free Native Nutrition > GFCFNN > > Wanita > > > > GFCFNN/ Steph :-) -- http://www.PraiseMoves.com The Christian Alternative to Yoga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 There's an interesting book " Brain Allergy " by Dr. Philpott about food intolerances. He says when you're allergic to something, sometimes you can completely avoid it for 3 months and it extinguishes the intolerance, as long as when you resume eating it you only eat it once every 4 days. It has to do with the immune system and I understood it when I read it but can't do it justice now. It doesn't work for everybody, and doesn't always work in 3 months - some have to go 4, 6, 9 months, etc. If you're getting tested for Celiac, I'd suggest you also get tested for candida. Something may have made your gi permeable so the undigested gluten got through into your blood, causing the allergic reaction. Candida is a likely candidate, tho there are other things that can cause it. Celiac is just a symptom of something else messing up your healthy balance. - Renate --- In , " Betty Pearson " <betty@...> wrote: > > Anyone here with Celiac Disease? I have to go in for a test at the hospital > for it. Apparently my blood tests results show an elevation for Celiac > Disease. I'm thinking that I won't be able to eat my wonderful multi-grain > sourdough bread? > > Betty in Lehi > Protect photos from natural disaster > Store on free website: > http://bettykarl.myphotomax.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Hey everyone! I hope you have all been well and maybe some of you are getting this nice, fall weather! Once again, I am confused about some lab results lol. I requested a celiac disease panel being done from one of my Dr.'s because I was under the impression that it can cause hashi's and low iron (both of which I have). The results are s follows: IGA, SERUM 94 / range = 81 - 463 Tissue Transglutam AB IGA < 3 range = <5 Gliadin Ab (IGA) <3 range = <11 Does anyone know why my IGA serum would be pretty low? Also, since Celiac is another autoimmune condition, could it just be that I wasn't having an antibody flareup at the time blood was taken, but at other times there are antibodies that are causing my IGA, serum to be low? Does anyone here have Celiac Disease? Thanks everybody, any help would be greatly appreciated! ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
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