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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I think I am still in total denial that my DD has a gluten intolerance that will more than likely be a life long thing! I keep thinking, life will get easier. I guess it will get easier if I just accept it and move on. I've posted before that I'm not fanatical about crumbs etc but I NEVER knowingly give her anything with gluten. I am realizing that I am going to have to be fanatical. She is totally not herself today and part of yesterday and it is reminiscent of what she was like prior to being gluten free. I have no idea what she might have had but I suspect it was probably something she picked up on the floor (my DS is not gluten-free).

Anway, that was a long winded beginning to my question...I was told by several people that even though I was still nursing her, I didn't have to go gluten free. Most people on this forum disagree whole heartedly. After some thought, I decided to do it and while it is VERY hard for me, I'm coping OK (it has only been 48 hours!!)

My mom is bringing a vegetable dish to our place for christmas and it has ONE teaspoon of soy sauce in it. That is the only gluten ingredient. I wouldn't give it to DD (she's only 11 months anyway) but what are the chances that 1 measely teaspoon of soy sauce (divided by 10 servings) would ever be passed through my breastmilk?

Also, I have another unrelated question that I think I know the answer for but I'll ask anyway. Will my DD's reaction to gluten become more noticeable the longer she is gluten free? I guess what I mean is will she react more to very minor "glutening" where she might not have previously? I am wondering if that is what has happened today.

Sorry this is all over the place. I am still VERY overwhelmed with all of this and it has been over 6 weeks. I don't feel like I'm ever going to come to terms with it!

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How about asking your mom to use gluten-free soy sauce? Then you won't have to worry about it.

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How about asking your mom to use gluten-free soy sauce? Then you won't have to worry about it.

she already made it! :( What kind of soy sauce is gluten-free. I want to buy some for myself as I love it on rice and sushi (can I still have sushi?)

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you wrote: "I've posted before that I'm not fanatical about crumbs etc but I NEVER knowingly give her anything with gluten. I am realizing that I am going to have to be fanatical. "

Think of gluten like rat poison...it is a common analogy used on this board. Would you be comfortable with her getting just a tiny bit? Her body doesn't know if it came KNOWINGLY from you or through cross contamination, through a mistake or through cheating, etc. Her body doesn't distinguish the difference between how gluten got into her system, so yes, being serious about crumbs IS as important as checking ingredients. Come to my house and watch what happens if I were to get cross contaminated (which, luckily, now never happens because my whole family has it down to a science...fingers crossed!).....and you will see that crumbs ARE important to worry about.

Many of La Choys soy sauces happen to be gluten free, as are some of the store "Kroger" generic brand. The best, to me, is the wheat free (and gluten-free) sauce by San-J. They have a regular and low sodium one. Be careful-they have normal ones, too. I use the gluten-free one at my house all the time.

Be careful of sushi-imitation crab meat has wheat in it.

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LaChoy soy sauce is gluten free. Luckily that's what we used anyway so I didn't have to buy anything new for cooking.

As for your other question, I do think that a glutening is more noticeable the longer she is gluten free. That's something I've picked up on with DD. If she eats one single baby goldfish cracker, she is sicker than she seemed to be prior to going gluten free! I don't know why, though DH and I have tossed around a few theories. All I do know is that a tiny crumb off the floor gives her D for 2 days so I have to be fanatical.

One thing I bought that has helped tremendously is a Swiffer vac. It is a little battery powered vacuum with a Swiffer pad behind it. It takes only a few minutes to sweep up the entire house-it gets the crumbs and the dust & hair too! Now I run this (or have one of my older girls run it) after each meal. That way there is no chance of the baby eating a Cheerio off the floor. OTOH, the girls went gluten free over the weekend and I have seen a tremendous improvement in their behavior. The last several days have been more peaceful and docile than any I remember in recent years.

I know it is overwhelming, but it is simply a fact of life for your child. Gluten is poison and I know you are trying your best to keep it out of her body.

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Guest cassidy

I posted something about this not that long ago. http://www.glutenfreeforum.com/index.php?showtopic=27906. According to a leading celiac researcher (pediatric gi doc) based on what they know now, gluten doesn't go through breastmilk. I agree with you that everyone here seems to disagree with that. I too have read that it does go though breastmilk.

My point is just that unless there is a mom in your exact situation (not celiac herself but went gluten-free for her child) that can confirm even a small amount of gluten hurt her child, there is no way to answer that question. According to the "experts," and my celiac support group, you don't have to change your diet at all.

If you stay gluten-free I would be very curious to hear if you daughter improves. It is frustrating that doctors can't answer these questions and it takes other people suffering for us to figure out what works best.

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I posted something about this not that long ago. http://www.glutenfreeforum.com/index.php?showtopic=27906. According to a leading celiac researcher (pediatric gi doc) based on what they know now, gluten doesn't go through breastmilk. I agree with you that everyone here seems to disagree with that. I too have read that it does go though breastmilk.

This is misleading and dangerous. The person you cited has no publications and therefor has had no peer review of her work. Many other researchers have published that gliadin (the reactive protein) DOES go through breastmilk. I hate to think that you are encouraging new moms to harm their infants by eating gluten and breastfeeding.

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Based on the controversy, I'd encourage you to go to pubmed.com yourself and read the studies related to gluten going through breastmilk. There aren't a lot, but there are a few.

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Guest cassidy
This is misleading and dangerous. The person you cited has no publications and therefor has had no peer review of her work. Many other researchers have published that gliadin (the reactive protein) DOES go through breastmilk. I hate to think that you are encouraging new moms to harm their infants by eating gluten and breastfeeding.

The doctor I spoke to works for the Center for Celiac Research, it isn't like she is a quack. If there is proven research that gluten does go through breastmilk and this is commonly accepted, then why would this doctor tell me otherwise? I'm not telling anyone what to do I'm simply passing on information that a leading researcher told me. I said in all the posts that she told me "based on what we know now, so her study hasn't been peer reviewed because they are still in the middle of doing the study and looking for people to participate.

I was certainly not trying to cause anyone harm I was only trying to find out the answers for myself and posting the information that I received. I think everyone has to do what they think is best, but I don't think this is a subject that has a clear answer. If it did then celiac support groups and celiac researchers wouldn't be saying one thing when people who have been through it are saying something else.

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Here's one I was just coming on to post--

http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract

Thanks for posting the link, jerseyangel. Interesting to read...and makes me surprised, given this information is available, that the public isn't readily being made aware of it.

Michelle

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The doctor I spoke to works for the Center for Celiac Research, it isn't like she is a quack. If there is proven research that gluten does go through breastmilk and this is commonly accepted, then why would this doctor tell me otherwise? I'm not telling anyone what to do I'm simply passing on information that a leading researcher told me. I said in all the posts that she told me "based on what we know now, so her study hasn't been peer reviewed because they are still in the middle of doing the study and looking for people to participate.

I was certainly not trying to cause anyone harm I was only trying to find out the answers for myself and posting the information that I received. I think everyone has to do what they think is best, but I don't think this is a subject that has a clear answer. If it did then celiac support groups and celiac researchers wouldn't be saying one thing when people who have been through it are saying something else.

Gluten may or may not go through the breastmilk, but it doesn't matter. Gliadin, the part of the gluten complex that causes problems DOES go through breastmilk.

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I am nursing my 4 1/2 month old son, and I know that if I consume glutens it definitely effects him. Glutens turns his poop orange, VERY liquidy, and the volume increases tenfold. Also the smell is pretty bad. As you probably know, breastfed babies have a distinct smell to their poop, but it certainly isn't a "bad" smell. All of that went away a few days after I went gluten-free.

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My baby broke out with eczema whenever I ate gluten. He didn't clear completely up until I stopped eating all gluten foods.

Of course maybe it was that he recovered from his vaccinations at 2 months of age. He broke out in the rash within 2 weeks of those and hasn't received any more. j

Just seems odd to me that within days of dropping oats and barley from my diet that he cleared the rest of the way up.

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I know this is an old thread, but I will add my two cents worth anyway. Before my last dauhter was born I was very gluten light i.e. I owuld have it occassionally out, but not have it at home. My daughter 2 seemd to be doing okay. I had muffins/toast/cereal (i.e. major gluten - I did not request gluten free) the hospital when the baby was born after having dd2 off gluten for 2 mos (she was and is still nursing). She had a major reactions to the gluten - the runny nose, bowel problems, etc. Trust you observations - doctors will only tend to believ you if they have seen it a lot or have children with the same problem.

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I have a 10.5-month-old who has a gluten allergy/intolerance (diagnosed through elimination and challenge). She most definitely reacts to exposure through breastmilk, including tiny amounts (one mouthful of bread at communion). As a matter of fact, after the 10 days of runny nose, erratic bowels, rash, and irritability (aka screaming most of her waking hours) she last experienced when given gluten directly, it's the only way I'm willing to test it at present. And we'll wait quite a while. When I've spoken to the pediatrician about it, he said that most kids outgrow pediatric allergies and that he didn't think it was worth testing for at least another year. "Just avoid it," was his advice.

I wanted to come ask what the likelihood is that with gluten allergy at this age that she will eventually be found to have celiac. If anyone knows, I'd love to hear.

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I have a 10.5-month-old who has a gluten allergy/intolerance (diagnosed through elimination and challenge). She most definitely reacts to exposure through breastmilk, including tiny amounts (one mouthful of bread at communion). As a matter of fact, after the 10 days of runny nose, erratic bowels, rash, and irritability (aka screaming most of her waking hours) she last experienced when given gluten directly, it's the only way I'm willing to test it at present. And we'll wait quite a while. When I've spoken to the pediatrician about it, he said that most kids outgrow pediatric allergies and that he didn't think it was worth testing for at least another year. "Just avoid it," was his advice.

I wanted to come ask what the likelihood is that with gluten allergy at this age that she will eventually be found to have celiac. If anyone knows, I'd love to hear.

I'd be interested to hear others opinions on this too... my youngest was how you describe (runny nose, foul smelling frothy erratic bowels, rash, irritability, screaming every waking hour) every single day for the 4&1/2 months that I nursed him. Right now he has a *v* restricted diet & still isnt 100% (either that or he is just a *v* difficult baby! :blink: ) If it is celiac disease then he could be getting gluten elsewhere of course - toiletries or CC

I spoke with the dietician y/day & she seems to agree with me that there is def some sort of GI issue - & she mentioned celiac disease before I did. I assume she wouldnt have mentioned that if she felt he would outgrow the intolerances he currently has, but thats just a hunch.

I see the allergy consultant tomorrow so I will ask his opinion as to whether hes likely to outgrow a gluten intolerance (like they say can happen with other ped allergies/intolerances) - if thats all that it is...

Juliex

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