This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My daughter has Down syndrome as well as celiac disease. Please allow yourself time to grieve and adjust to your twins diagnoses.
No it's not the end of the world. But it's not easy, and it does produce anxiety and stress for you especially as their Mommy. The path to acceptance is different for everyone and there is no right way. Some just go with things, some worry themselves to death and use a diagnosis to remain in a perpetual state of feeling sorry for themselves, but most of us continue along until one day we realize that we don't even consider their diagnosis on an every day basis anymore. Then you get to the point where one day it hits you, "Oh Wow, my daughter has Down syndrome!"....because you haven't thought about it in so long. I had one of those moments recently. I hardly even think about my girl being different anymore because it's just a part of who she is and a part that I happen to love.
I will admit that I had a harder time with the celiac than I did the Down syndrome. Odd huh? But my story is long and the DS diagnosis was prenatal and a spiritual experience for me. But the celiac was just a nuisance, another thing that she will have to deal w/that makes her different.
Anyway, don't beat yourself up for the way you are feeling. It's okay! And they will be okay too! And so will you after you take the time YOU need to adjust. Hey, and it's easier for the Dads usually because we are the primary caregiver and nutritionist in our kids lives.
Here is how I'm reading it: All input respected and appreciated so please help!
"In case of celiac disease, it means that if the mother has circulating antibodies to gliadin, these antibodies appear in the milk."
This would mean the mom herself has celiac disease....thus producing antibodies right?
"If the breast fed baby ingests gliadin (or the mother ingests accidentally and traces of gliadin appear in the milk) the antibodies in the milk blocks the gliadin and it will not able to cross the intestinal wall and meet with the baby's immunosystem."
And this means in this scenario the baby is protected even IF the baby has celiac disease and ingests gliadin him/herself?
"To answer the question: the antibodies in breast milk are protective and do not "trigger" celiac disease in genetically predisposed babies. There are several data showing that breast-feeding has a protective effect in case of celiac disease. Furthermore, it is well documented that breast-feeding in the first year of life decreases the risk of allergies by 50% in babies whose parents have allergies."
I am assuming these studies (this is not the only one I've read with similar findings) are being done because of the incidence of celiac disease being hereditary. And there is yet to be done a good study on non celiac disease mothers nursing a baby who has celiac disease...because it's harder to find that scenario. So I would liken that situation to the studies being done on babies who have food allergies like dairy...which is more commonly talked about...the mom passing on the dairy protein through her milk, and then the baby having a reaction.
I guess I would just hate to see someone not nurse because they are fearful and don't want to take on a gluten-free diet. You know what I mean?
Laura, that is the reason from my understanding that the baby would be protected. Is that what you understand the research to say too? But if the mom does not have celiac disease (and thus no antibodies) I do not think there is enough info to say whether her intake of gluten affects the baby at all. Just lots of research studying the effects of breastfeeding in general on babies who are diagnosed w/celiac disease later or at birth who do not show symptoms until they are weaned. (and I'm assuming that these mothers are not changing their diets since that is not mentioned).
I think if presented w/the dilemma (especially if the baby does not have a definite diagnosis) I would opt to nurse, remain with the same diet on my part (perhaps limiting obvious gluten intake), and watch for effects on the baby. But we all know a totally gluten-free diet is not easy.
I love breastfeeding information and hope they will do further studies now that celiac disease is being diagnosed more frequently.
Here are a couple of links:
and a bunch of articles from LLL:
While I have not seen a study breaking down the bmilk to look for gluten, and it is true that some food allergens can pass through the milk.....if you really research this you will see that moms who intake gluten and are nursing babies who have celiac disease have kids who don't have onset of symptoms until after they are weaned. I guess that is what I would be focusing on.
But in reality I guess it is something you should be aware of and watching for just in case your baby is an exception. I have nursed 4 babies long term totalling almost 6 years so far. Still nursing one. It took my 2nd daughter 14 weeks to learn to nurse but I pumped and she never got formula. So you could say I am a huge proponent of nursing! I won't hide that. So I may be skewed in my opinion, but I would definitely go gluten-free myself if I thought I needed to. As a family all of our meals are gluten-free because I won't cook twice. But my girls who don't have celiac disease get gluten snacks in between meals as do I. : Anyhow Tarenne was diagnosed at 3, and nursed until into her 2nd year...and was asymptomatic. I'm definitely not an expert, just giving my humble but heartfelt opinion.
I have a good "pizza" that all my gals love. I use corn tortillas, put mozzarella between two, then top w/prego traditional, top w/more cheese, and add gluten-free pepperoni (hormel) and put it in the oven. They eat it up. Doing the 2 tortillas helps it to stiffen up for lifting.
Also they do have to heat his stuff up if it's medically necessary for him not to eat lunch there. Or they have to provide him gluten-free food. So most schools will gladly toss it in the microwave.
And I have found that quino and corn noodles reheat the best. Hope that helps some! Nicole
I actually used a sharpie to write Gluten Free all over our new toaster for my daughter. Even then when my sis was babysitting she accidentally put a regular waffle in it. She bought us a new toaster before we got home. Sent her husband out. So sweet! If we double dip I use a sharpie to write contaminated on the jar and lid. I wonder if that scares my visiting family. "why do they have contaminated stuff in their fridge?"
I love the squeezable bottles for condiments...mayo, jelly etc. But with just me and my dh cooking for now it's easy. We spoon everything out.
It's amazing how we adapt for our kiddos health huh?
I have to disagree. Our dr said the same as yours. That it's not passed through. You can do a google search and find info supporting both. I would contact LLL or a pediatric gi who specializes in celiac to be sure. Good luck!
I am always amazed at the differing opinions in medicine. My daughter has Down syndrome as well as celiac disease and I am floored at the ignorance about it w/in the medical community at large even though it's the most common chromosomal disorder.
Kimberly, Thank you SO much! You don't know how much I appreciate your feedback. I'm going to give it to her and watch for signs. I'll let you know if she seems to be intolerant. HUGS to you! You made my day. Nicole
Roo, before diagnosis Tarenne for all intents and purposes had no symptoms of the disease. Now looking back I realize she was refusing some foods, and had loose, frothy stools, etc. But much of the signs can also be associated w/her extra chromosome. For instance a distended abdomen is also part of her having low tone. And many people with DS have digestion issues as well that don't have anything to do w/celiac disease.
Now when she gets gluten she has horrible diarrhea and it has almost a chemical smell, she even has vomitted before after ingestion, she'll say "Mom stomach ache, shot". So funny she equates shots with being well just from wellness visits.
I have read that once the body is cleansed of gluten it's reaction to introduction of gluten is more severe. I hope that helps! Nicole
Hi there! My name is Nicole and I have 4 little girls. My second daughter who is 5 has celiac disease. She has Down syndrome too, and was diagnosed w/celiac disease about 2 years ago. She's a doll and handles her allergies like a champ! She'll ask, "Mom eat?" and if I say it has gluten she'll say "BLAH!". Too cute! Occasionally she'll try to get what her sisters have but most of the time she really understands and monitors her food herself. When we have had accidents the gluten is obviously really toxic.
She was asymptomatic and routinely tested because it is more common in kids w/DS.
Anway I came here to post recently to find out if anyone had used Juice Plus products for the kids who have celiac disease. They say it's gluten-free but they use fiber from barley and oats. So I wanted to search more before I give them to her. The company says they test the product and it shows 0 gluten, that the husk they use does not have gluten. Hmmmm? Anyone?
Thanks! Nicole~ mom to Darrah, 6 years, Tarenne 5 years w/celiac disease and Down syndrome, Marley, 2 1/2 years and Emery, almost 1!
I just want to share my "secret weapon". After my daughter was diagnosed I had a really hard time in the kitchen. Then I bought "Saving Dinner"...a cookbook on amazon. You can check it out at savingdinner.com. It changed my life! Perhaps one of my biggest blessings as a sahm. I can easily convert the recipes into gluten-free items. They meals are tasty and I get on her site and pull off the shopping lists for the week before I head to the store. It's awesome! I have 4 little girls and they all love the menus as do my husband and I!
Also I have found if I let my kids help even a tad with the preparation they will at least try it with enthusiasm.
I won't post any ideas...you got plenty above. I have a few kid cookbooks I love too. Good luck! Nicole
Hi I'm new here. My daughter who has celiac is 5 years old, but was nursed until she was 16 months old. So this topic interested me. We did not get a diagnosis until she was 3, but she never had any related issues while nursing.
If you do a quick google search you'll find lots of good information. The general thought seems to be that nursing would actually protect a baby who has celiac disease even when gluten is introduced (so antibodies wouldn't be produced in reaction to the gluten) and that the mother does not pass gluten through her milk.
Here are a couple of links:
Hi! I'm new here. My daughter is 5 years old that has celiac, she also has Down syndrome and is a jewel and our angel. We've been gluten free for almost 2 years now, and this is the first time I've been really stumped.
Juice Plus says their vitamins are gluten-free. However when I received the products the brochure inside said they have fiber from barley and oat bran. I called back the product manager to ? him since he is the one who assured me that they are gluten-free. He read me their position statement, which basically says that the fiber they use comes from the husk of the grain which is gluten-free, they don't use the inside gluten containing part of the grain and that they have tested their product and shown 0 gluten in it. I'm not completely buying it and wanted to see if anyone has experience with this.
My daughter is super bright, will ask before she eats anything ?able, "Mommy eat?" and if we say it has gluten she will say "BLAH!". So funny! She was asymptomatic but when she has accidents now it's very clear gluten is toxic to her system. I'm extremely conservative with her diet and just don't want to give her these expensive vitamins to try to help her and have it adversely affect her. The vitaimins are more whole food in approach and I think they sound great.
Okay, I'm rambling. So does anyone have a real answer for me. I had to laugh because as I questioned the mgr. he said, "what would we have to gain by saying they're gluten-free if they're not?" HELLO the business of everyone with celiac disease.