Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Hi Karin, Thank you for that valuable information. Marcia Mom to Sara (DS) and 5 and Lucas 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Karin, I need some info on Celiac Diesase, do you know of any web sites or resources. My sister just called me 3 days ago, they just found out that both of her kids has this diease, and she's in really stressing out. She lives in a small town in Washington and is having a hard time with resources. I don't know much about this diease, but she did say they will also be testing them for cystic fibrosis which has the same symtoms. So, please share your personal experience with me, I really need to help her. Thanks Ginene Tyre 9, Tyrey 4(DS) & Tyren 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Hi, I just look up some info on Celiac ..you can go to www.celiac.com also Dr,Leshin has some info on his sites.. at http://www.ds-health.com and go to Celiac disease. Hope this helps Re: Celiac Disease >From: EYN@... (GINENE Mills) > >Karin, > >I need some info on Celiac Diesase, do you know of any web sites or >resources. > >My sister just called me 3 days ago, they just found out that both of >her kids has this diease, and she's in really stressing out. She lives >in a small town in Washington and is having a hard time with resources. > >I don't know much about this diease, but she did say they will also be >testing them for cystic fibrosis which has the same symtoms. > >So, please share your personal experience with me, I really need to help >her. > >Thanks >Ginene >Tyre 9, Tyrey 4(DS) & Tyren 4 > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Hi All I know a few children in our speech language group have Celiac disease and the improvement after their diet was changed was dramatic. We also supply gruten free products to some of our customers in our Bakery and I found this great website for supplies of gluten free, wheat free, etc products - might be worth a look: www.glutenfreemall.com Carolyn Mum To on, , Emma (3 3/4)ds and Nicki (2 1/2)ds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 GINENE Mills wrote: > > From: EYN@... (GINENE Mills) > > Karin, > > I need some info on Celiac Diesase, do you know of any web sites or > resources. > Yes, Karin go to Dr. Len Leshin's web site http://www.ds-health.com he explains alot there.......good luck! Gail > My sister just called me 3 days ago, they just found out that both of > her kids has this diease, and she's in really stressing out. She lives > in a small town in Washington and is having a hard time with resources. > > I don't know much about this diease, but she did say they will also be > testing them for cystic fibrosis which has the same symtoms. > > So, please share your personal experience with me, I really need to help > her. > > Thanks > Ginene > Tyre 9, Tyrey 4(DS) & Tyren 4 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 thanx for that info! do all Dr's know how to test if i mention it to them? My son has had runs for a week now...i hope its not this! Man it stinks! but i dont think it floated??? He is off milk for now...what is gluten? bread products? what cant they eat? does ur son get used to eating the food he needs to eat? Thanx again... --- Aasknc@... wrote: > HI guys, > > My 11 yr old son, (DS), has Celiac disease. > He was diagnosed at age > 6 after being sick for years with no diagnosis. He > only weighed 25 pounds > and was really small. Usually (but certainly not > always) kids with Celiac > are thin, have big bloated tummies, a smooth tongue, > sores around the mouth, > like in the corners, have pale greasy stools that > dont really smell like > normal bm but have a really putrid, rotten smell > (and it floats). They tend > to be irritable too. One thing about them though, > they have a HUGE appetite, > want to eat alot and often. The reason for this is > because they are not > absorbing the food, it is passing right through > them leaving them just > starving. Literally, they are malnourished even > though they eat a ton. > > This feeding clinic sounds like a horror to me, what > better way to totally > turn your child off to food??? Force them to sit > there???? That sure goes > against everything we have ever been taught about > kids and food, and obesity > too!! Remember you aren't supposed to make them eat > if they dont want to, > not supposed to make them clean their plate. I > struggle with 's (DS, > 13) weight enough as it is, I can't imagine what > forcing her to eat when > small would have done for her now! > > Celiac disease is definitely related to DS, they > have just become aware of > this over the last few years.... was the > first child diagnosed at > Duke in ten years and now over the past five years > sooooo many kids with DS > have been diagnosed there. They have known about > the relationship between CD > and DS in Europe for a very long time and routinely > tested all kids with DS > for it. It is just finally recognized here, and > dont let anyone fool you, > it's not rare, it's just very under diagnosed! ALL > kids with DS are supposed > to be screened for it now, beginning at age two. If > your child has not been > eating gluten containing food it will come up > negative though so you need ot > wair until your baby eats different foods before > testing. IF negative they > need the testing repeated a few years later. If > posiitve they usually retest > evey year to be sure there are no antibodies which > would mean the diet isn't > completely gluten free. > > The gluten free diet is the pits. It's hard and I > hate it. If I had CD I > would be sick all the time, I couldn't stick to the > diet. > > Get your kids tested!!!! > > Karin > ===== mom to Katy (10) and Denton (5) both DS. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 > . Autism and CD....would > Loriann care to comment on her findings, since wasn't she the one who said > since she put her kid on the gluten free diet, that he has shown no more > autistic tendencies?? Hi, Everyone.............I did not mean for this to be a topic of discussion. It was told me and I was surprised of her statement. I agree with Joan.......if the parents see improvement on dietary changes, then who is anyone to question them? I don't want this to be argued........I think it is like a lot of other theories. What works for one child doesn't work for the next....be it meds, diet, ABA, vitamins, etc. Take care, Everyone. Margaret > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 In a message dated 4/4/01 12:59:13 PM Eastern Daylight Time, jmedlen@... writes: << I don't like to comment for LoriAnn. I think she's moving! But I want to point out that (and his little brother) have tested positive for Celiac disease... >> Joan, Just to confuse YOU a little bit....LOL....Didn't Loriann say that there was some disagreement among the docs about the biopsy? I thought I recall her saying that she'd keep on a regular diet until they finished moving, and then they were planning on a re-biopsy. And I don't recall getting a biopsy. Anyone remember if he did? Anywhoos!! I'm sure she'll be back on soon enough to clarify all this for us. And I'm totally confused on the autism dx with . I don't *think* it was taken away YET. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 In a message dated 4/4/01 1:52:21 PM Eastern Daylight Time, duffey48@... writes: << Joan, Just to confuse YOU a little bit....LOL....Didn't Loriann say that there was some disagreement among the docs about the biopsy? I thought I recall her saying that she'd keep on a regular diet until they finished moving, and then they were planning on a re-biopsy. And I don't recall getting a biopsy. Anyone remember if he did? Anywhoos!! I'm sure she'll be back on soon enough to clarify all this for us. And I'm totally confused on the autism dx with . I don't *think* it was taken away YET. Donna >> Well, ya both confused me!!!!!!!! LOL I thought never had an autism dx or a CD dx, but had a different one. LOL See how well I retain information? LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 At 11:53 AM 4/4/01 EDT, you wrote: > >> . Autism and CD....would >> Loriann care to comment on her findings, since wasn't she the one who said >> since she put her kid on the gluten free diet, that he has shown no more >> autistic tendencies?? I don't like to comment for LoriAnn. I think she's moving! But I want to point out that (and his little brother) have tested positive for Celiac disease...that was why she took him off the diet so they could have an accurate Celiac Dx. Therefore, the Gluten Free diet is essential for 's health--and when he's not feeling good, I would expect behavior. That doesn't necessarily take away the autism dx (but I can't remember if he actually ahs one?). It is possible to have celiac and autism. Their incidence is unrelated. However children with DS have a higher incidence of Celiac. Just to confuse you a bit. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 At 01:49 PM 4/4/01 EDT, you wrote: >Joan, > Just to confuse YOU a little bit....LOL....Didn't Loriann say that there >was some disagreement among the docs about the biopsy? Yeah...I can't keep it straight. I know it was **awful** that's what I know for sure to have all those changes going on. Yep...that was it. It's all so confusing. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 Yes Joan, and for those of us with kids with ds/autism/ and CD the diet does help in differing areas as with any child. JJ's behavior did improve with the diet but he is still autistic. Health is better. Now , not autistic but ADHD, has had no change with behavior since starting the diet. & Garry, parents of (10 ds), (9 ds), JJ (7 ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted. ---------- >From: Joan <jmedlen@...> > >Subject: Re: Re: Celiac Disease >Date: Wed, Apr 4, 2001, 8:52 AM > >At 11:53 AM 4/4/01 EDT, you wrote: >> >>> . Autism and CD....would >>> Loriann care to comment on her findings, since wasn't she the one who said >>> since she put her kid on the gluten free diet, that he has shown no more >>> autistic tendencies?? > >I don't like to comment for LoriAnn. I think she's moving! But I want to >point out that (and his little brother) have tested positive for >Celiac disease...that was why she took him off the diet so they could have >an accurate Celiac Dx. Therefore, the Gluten Free diet is essential for >'s health--and when he's not feeling good, I would expect behavior. > >That doesn't necessarily take away the autism dx (but I can't remember if >he actually ahs one?). It is possible to have celiac and autism. Their >incidence is unrelated. However children with DS have a higher incidence of >Celiac. > >Just to confuse you a bit. > >j > > > Checkout our homepage for files, bookmarks, and photos of our >kids. Share favorite bookmarks, ideas, and other information by including >them. Don't forget, messages are a permanent record of the archives for our list. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 , there might be some info at gluten-free.org??? At 12:15 AM 6/17/01 -0400, you wrote: >Can you resend the web site for celiac disease and seizures? > >Thank you > > >_ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Hi, Last October we found out that tested positive for celiac, which both the doctor and dietician said was common in people who have Down syndrome. We have gradually taken away the culprit foods which aggravate it and it hasn't been easy since the grain/cereal/bread group has always been his favorites. He is doing very well and has had not had any bouts of diahhrea in almost ten months (some people with celiac experience chronic diarrhea while others experience chronic constipation and a few show little if any symptoms). One thing that has happened--he has put on weight. He has gained almost 12 pounds since Christmas. A doctor in June said this is probably due to reaction to the new food she is eating. Many special foods are also available for people with allergy to wheat/gluten. He does not have diabetes among his litany of ailments. We hope that does as good as has done. Dad to , Kristi, (all three Ds) and (Cri du chat) Husband to C. Celiac Disease > Hi, > We just found out that tested positive for celiac disease. Which > means that she has a possible allergy to wheat/gluten. She needs to have an > endoscopy by a pediatric GI. Her endocrinologist suggested the test because > he said it is common in children with type 1 diabetes. > > I also discovered that it is common in people with DS - does anyone have any > exprience with this and know that it is something that maybe should have been > checked for in the past - especially since amanda has never eaten bread > products in her life - not pizza, or a bagel or italian bread ever. Imagine > living in NY and not eating that stuff! LOL > > Really, if anyone has or is familiar with this, please email me. I already > started researching it myself! > > ~ Mom to 11 DS and Diabetes Type 1 and 8 NY > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 I may be just having a crossed neuron moment but I think I just read a synopsis of a study on children with Celiac and the predisposition to increased diabetes in that group. I know there is higher percent of kids with DS that have CD and kids with Ds that have diabetes (immune system compromised?) Does anyone else remember seeing this info just recently? Cheryl in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 In a message dated 8/14/2002 11:04:55 PM Central Standard Time, linman42@... writes: > Hi, > We just found out that tested positive for celiac disease. HI I am so sorry for .... And you. I do have a few questions was there a reason to test or was this routine? and is this a forever thing like diabetes? Kathy mom to Sara 10 ............ not sure if Sara's ever been tested for this Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Hi, Thanks to everyone who responded about celiac disease (CD for short). I am learning as much as I can about it and Dr. Len does have an article about it at <A HREF= " http://www.ds-health.com/ " >Down Syndrome: Health Issues - Medical Essays…</A> One other site I looked at had both diabetes type 1 and ds as sub topics. had the test done because it affects the immune system and diabetes is that type of disease. It has not been routine for people with DS in the past few years. A blood test will detect if someone is positive for CD or not and then further testing by and endoscopy is needed to determine if there is damage to the small intestines. And yes, it is life long - a wheat/gluten free diet needs to be maintained for life. Ahhhh poor amanda - yet another thing. ~ Mom to 11 DS and Diabetes Type 1 and 8 NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Gluten Free Pantry (glutenfreepantry.com I think) has a lot of gf plus egg free products. Their Tinkyada noodles are rice noodles and taste just like " real " noodles. this diet seems hard when you look at it the first time, but it gets easier. I remember the first time I thought about it for , I just got totally overwhelmed. Just start slow. I started by replacing obvious culprits, rice noodles, rice spaghetti, then started reading labels to get rid of the trace stuff. By the time I started the diet, I was used to it. Loriann AKA Flitter the Christian clown Wife to Dewight Mom to , 12 years, Down Syndrome, PDD-NOS and Celiac Disease. , 3 years and Strong Willed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 --- linman42@... wrote: It has not been routine for people with DS in the past > few years. A blood test will detect if someone is > positive for CD or not and then further testing by > and endoscopy is needed to determine if there is > damage to the small intestines. It is now being recommended for any child with ds having GI problems. Bridget has chronic constipation and we had the blood work for celiac disease done as a percaution. If you are having this test make sure an IgA level is also drawn. The test is based on IgA (an immunogflobulin) levels and ds can cause the normal to be either a little too high or low which can cause the test to be false positive or negative. This is from our GI doc. It is a simple blood test (as if it is simple te get blood from our kids, lol), so it was reccommended to us. mom to Bridget 9ds....still not liking school __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 In a message dated 8/15/02 10:44:11 PM Eastern Daylight Time, hsmyangels@... writes: > I started by replacing > obvious culprits, rice noodles, rice spaghetti, then started reading labels > to get rid of the trace stuff. By the time I started the diet, I was used > to it. > > So, Loriann, you are on the diet too? How did you know? Got some rice noodles, spegetti today. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 That would be me. I'm pretty sure I replied but if I didnt I'm sorry. 's had it since september. I found lots of products at a local health food store and the manager showed me the book and ordered a bunch of things for us. A great brand is Glutano they make the best pasta. We dont feed the whole family what amanda can eat, i tried that but it doesnt work. You can use bbq sauce for grilling things and it tastes good if its a natural one. Frookies has cookies in choc chip and dutch choc that amanda likes and then theres pop corn, chips (only plain), pirate booty and smart puffs, fruit, natural icecream like breyers, Hebrew National hot dogs (no wheat fillers) and corn, rice and french fries. Email me with specific questions and check out this site: <A HREF= " http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?sid=91hH9H0WXCWd5mE- 26102477770.93 " >Celiac.com (Site Index)</A> ~ Mom to 12 DS and Diabetes Type 1 and 8 NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 , It was thought this time last year that Jordan might have Celiac, but after 4 weeks on the diet and no change in anything, she didn't have it. Any way, try going to the health food stores. They have all kinds of gluten free stuff. It's pricey ( that's health food for ya!), but it's worth it because you don't have to rack your brains trying to come up with stuff she can eat. Good luck, Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda Where ever you go.... There you are Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi, Our was diagnosed with Celiac disease in late 2001. It has been bothering him some lately and we have had to restrict all bread with gluten in it (the bread/grain/cereal/pasta group happens to be his favorite foods). He is a real trooper because he has JRA, psoraisis and a lot of other problems too but he never complains. Dad to , Kristi, (all three Ds) and (Cri du chat) Husband to C. celiac disease > hi everyone, > I was just wondering how many of your children have been diagnosed > with celiac disease? I asked this a couple months ago and got one > reply. Can you beleive I can't remember who it was that answered! > any way I have been in the kitchen on a regular feeling like a > chemist trying to get the right cosistancy to make a variety of stuff > that my daughter can eat. My other 4 kids aren't too happy about the > new taste either. Any way I would like a chance to e-mail someone > especially who has name brand products which are gluten-free. I am > overwhelmed thanks a whole bunch.lisa > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 , I am rather surprised that your patient had a gastric bypass in the face of celiac disease. If the disease is well documented and still active most would recommend a purely restrictive operation, a VBG or band. The same is true of patients with inflammatory bowel disease. Why does she not tolerate her supplements? If nausea or indigestion, simply wait a few weeks and try again. Try chewable vitamins or liquid. How long post-op? Wait at least a month. If she is having diarrhea, this is a new ballpark. She may develop more significant problems, including fatty acid deficiencies and protein malabsorption. Check frequent labs and if diarrhea is severe maybe even faecal fats. Fat soluble vit. may be a problem. Good luck. Celiac Disease > Does anyone have experience in dealing with bypass patients who also have celiac disease? I am fairly new to the bariatric field and have a bypass pt. with celiac disease that is unable to tolerate her multivitamin and calcium supplements. > > Thanks for any input. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Piece of cake ; It appears you'll be able to control the balance of the inflammation and resulting damage with the same method as for IBD. They're all related to oxidative stress. click here for details specific to celiac: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Search & DB=PubMed and enter celiac glutathione in the box. In this particular study... ____________________________________ Modern diets and diseases: NO-zinc balance. Under Th1, zinc and nitrogen monoxide (NO) collectively protect against viruses, AIDS, autoimmunity, diabetes, allergies, asthma, infectious diseases, atherosclerosis and cancer. Sprietsma JE. Bennekom, The Netherlands. Thanks to progress in zinc research, it is now possible to describe in more detail how zinc ions (Zn++) and nitrogen monoxide (NO), together with glutathione (GSH) and its oxidized form, GSSG, help to regulate immune responses to antigens. PMID: 10499817 [PubMed - indexed for MEDLINE] ________________________________ ....the bottom line is the autoimmune diseases are reduced a lot with the mineral zinc, the antioxidant glutathione, and nitric oxide increasers. The abstract goes into detail in a technical way. It's easy to increase all of these substances with a couple of supplements. In addition, glutathione specifically and generally, antioxidants, reduce or eliminate complications caused by oxidative stress in diabetics. Duncan Crow > Hi, All. > > It's been awhile since I've posted. I've been doing the Body Ecology and > Candida Control diets since September and feel loads better. I recently went > to my regular MD who doesn't believe in candida as it is only a theory (save > your comments - I thought it was an uneducated statement too). Now here's > the thing: I went to get a physical through him as my alternative dr. is > expensive and is not covered by insurance. My MD thinks I have celiac > disease as I show a high count of antibodies. Does anyone else have this? > The info I found on the disease is at > http://www.niddk.nih.gov/health/digest/pubs/celiac/#2. The symptoms are > similar as candida. The diet is also similar, which explains why I feel > better. I think I need a second opinion - this looked a little scary to me. > My husband and I are trying to have a baby - and the potential diseases > associated with this don't look too pretty. I also want to get my small > intestine checked out to find out the condition of it - I'm hoping it's not > too late for it to continue to heal itself. > > And my last few symptoms are: chronic bloating and flatulence with certain > foods. > > Thanks, All. > > _________________________________________________________________ > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
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