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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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jebby

Cow's Milk Protein Intolerance In Infants Of Mothers With Celiac?

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I am a pediatrician and I take care of predominantly newborn infants. I have been seeing more and more infants with cow's milk protein allergies/intolerances over the last 5 years than in the past. I am interested in this diagnosis because two of my four kids had issues with milk protein as infants (before I was diagnosed and gluten free). I have been unable to find any research linking cow's milk protein problems in babies with maternal celiac disease. I suspect that the 2 problems are linked and am considering doing a research study on this. In my case, my babies reacted to milk protein which passed into my breastmilk. Have any of you mothers on here had babies who do not tolerate cow's milk protein? Please message me if you can. If there are enough of us, then it will tip me toward trying to examine this scientifically.

Thank you!

Jess

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Investigate, please!!!

My son had bad colic and always had a bad reaction to formula. I did mixed feeding, breast and formula. He hated cows milk. He now eats yogurt and ice cream but no milk or cheese.

He now has asthma eczema hayfever and severe nut allergy, all classic atopic stuff.

When I was pregnant with my daughter, a colleague who specializes in nutrition suggested I avoid cows milk and products and had goat. She has no problems so far at 3.

Can't prove anything, not scientific. But I am glad I did the experiment.

I am going through celiac diagnosis.

This is a bit to the side of your question, but so many things are interrelated.

I wish there were more doctors like you who notice these things.

Good luck

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Definitely! I was un diagnosed at the time, but had celiac since childhood. With my first baby, she would scream after every nursing, I finally narrowed it down to my eating dairy. When I avoided it, she was fine. She is 13 now, also celiac, and reacts to casein with eczema, edema, fatigue and ADHD/OCD behaviors. My son also reacted to dairy as a baby, was dx with reflux, would scream in agony with every bowel movement even though he was breastfed. I was told he just had a small colon. He developed severe suicidal depression by the age of 6, as well as ADHD, sensory processing disorder and peripheral neuropathy. He was also anemic and pre-diabetic. Dx as celliac at age 7. gluten-free diet helped some. Removing all trace casein resulted in complete reversal of all symptoms. He is a happy healthy 9 yr old now. If he gets even small amounts of casein he reacts with violent mood swings and crying.

I definitely think there is a connection, and really wish someone would do serious research into it to spare others!

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FWIW, I'm gluten-intolerant (I went gluten free prior to testing, which was inconclusive, so I'm not really diagnosable :) ), and my daughter doesn't appear to have a problem with cow milk.

That said, I *do* have trouble with cow milk, and stayed completely dairy free during pregnancy and for many months afterwards, and then added small quantities of goat milk. So she didn't have any exposure to cow milk protein for the first many months of her life. She did get regular yogurt starting at 7 or 8 months, though, and loved it and didn't have any trouble. She still prefers to drink my almond or coconut milk, and doesn't really like fluid cow milk, despite liking other cow dairy products (cheese, yogurt, ice cream).

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My son is strongly casein-intolerant (and likely celiac, though undiagnosed) and I was undiagnosed celiac when pregnant. He was always fussy as a baby and never felt "well" as a child, but we didn't isolate his reaction to cow's milk protein until he was 15.

I'm glad you're interested in that type of research - very helpful. I'm trying to get my son (who wants to be an MD) to go into celiac or genetic research.

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My birth mother (deceased) had a "problem with wheat" according to my dad. Whether Celiac or NCGI we'll never know. I went gluten-free before testing and then could not take on a gluten challenge due to my reaction to gluten when ingested; that was all the test I needed. However I had the genetic testing done and came back double DQ7 (one from each parent), which is associated with cow's milk intolerance. Indeed, dairy is harder on me in the short term than gluten. Exploring the possible connection between a mother's Celiac and child's casein intolerance would be fascinating and valuable research!

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I was an undiagnosed celiac until I was 38 so I was eating gluten while pg with my children. My oldest son, we are just now starting to realize, seems to have a problem with milk. He told me he sometimes gets stomachaches after drinking milk, and often gets headaches.

He has a few other health problems which has prompted me to start him gluten-free even though he tested negative. My concerns and past problems:

Colicky breast fed baby (cried about 3-6 hours an evening)

Aspergers (did not complete diagnostic process since we homeschool and there would be no benefit to further testing - it is mild)

Allergies (tree nuts and environmetal)

Asthma (mild)

Minor GI issues (infrequent stomaches and C)

Headaches (infrequent)

I plan to remove milk products from his diet this fall. I'll do it slowly since he does not do well with change and has a fairly limit palet.

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Thanks for all of your replies! I will press forward with this project in some form and will hopefully eventually be able to report back on what I find in the future.

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I would love to know if there is any connection. My son is now 3 and I breastfed for 2.5 years. I could not have even the smallest amount of dairy or soy for the 1st year and a half of his lift. He has intestinal bleeding at 2 weeks and I found out after that about his intolerance. After i cut out the dairy from my diet is when i started have a lot of stomach issues and went through numerous test to be diagnosed celiacs. I was tested the first time 2 .5 years ago but my blood tests were inclusive because of an iga deficiency and my doctor said it wasn't a wheat issue but IBS. I the past 6 months I've had many health issues and finally a new doctor realized the iga deficiency caused the wrong blood test results and I was diagnosed a week ago. My son now has no issues with dairy or soy but I always knew dairy wasn't the best thing for me but still ate it. I am worried for him in the future and would love to know any correlation.

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I've been looking for research on the topic. My son has been suffering with GERD and Milk Soy Protein Intolerance (MSPI) since birth, now 12 months of age. I didn't realize I was suffering with celiac disease until after he was born and my symptoms went into over drive. I am interested if anyone has found any information on the topic?

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I realize this thread is months old, but I just found it and wanted to add something in case anyone reads it later. I'm a 37-year-old woman in the process of getting tested for celiac myself, after having symptoms consistent with celiac for my whole life. After three years of fertility treatments, I finally conceived my daughter through IVF when I was 32. I strongly suspect that I had very active, undiagnosed celiac during pregnancy and birth. My daughter was born just over 4 weeks early after a 30-hour labor with complications, and she almost died at birth. A wonderful team of nurses and doctors saved her life, and I am immensely grateful to them.

 

I had intense morning sickness for the first six months of the pregnancy, and consequently I ate almost nothing but soup and yogurt. In retrospect, this is probably the best thing that could have happened, since my gluten-consumption was very low due to the solid-food aversions. I exclusively breastfed my daughter, but the very day my milk came in she screamed uncontrollably for hours and hours. She was a good nurser and gained weight just fine, but she was constantly irritable, started projectile vomiting within her first month (but did not have pyloric stenosis), and had extreme sleep problems where she twitched and kicked constantly and never, ever slept more than 45 minutes at a time. It became clear within the first few months that she couldn't tolerate breastmilk when I ate any dairy at all, so I eliminated it completely. Her problems improved slightly but did not go away. By 5 1/2 months we'd seen an allergist, pediatric GI doctor, and neurologist because she also had muscle clenching, reflex abnormalities, and other signs of possible CP.

 

No one had any idea what was going on. Allergy tests were negative, though they're unreliable in babies so young (but they remained negative two years later, too). We eventually put her on Neocate formula and I stopped breastfeeding. She'd still had no solids at all. She could not tolerate Alimentum (hypo-allergenic but milk-based), but her response to Neocate was amazing. Within 36 hours, she was like a new baby! She thrived on Neocate, and within six months her neurological problems had improved enough that she tested out of early intervention and the neurologist concluded that she didn't have CP. We started solids late because she gagged and refused them until she was almost a year old, but when she finally started eating solids regularly things started going downhill again. For the last three years she's had daily stomach pains, increasing irritability and tantrums (that kept worsening even after the "terrible twos" were over), fatigue, and other celiac symtpoms. And she's never been able to handle dairy well, though we sometimes give her very small amounts. (She only drinks fortified rice milk and water.) We're seeing a new doctor next week because her old doctor wouldn't take our concerns seriously. I'm going to insist that they test her for celiac.

 

Regardless of how the tests turn out, my point is that it definitely IS possible for infants to develop food sensitivities through breastmilk alone. We had so many doctors insist that it wasn't possible, but no one could deny the evidence of my daughter's immediate improvement on Neocate. I don't know whether she was reacting to gluten in my diet, or reacting to remaining traces of dairy even after I'd stopped eating it, or whether she was simply reacting to antibodies that I was producing because of my own undiagnosed digestive problems. But please do research this issue! As a parent, it's very frustrating to be constantly told that babies can't develop allergies or food intolerances through breastmilk alone. It's a misconception that needs to be disproven once and for all!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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