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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Cow's Milk Protein Intolerance In Infants Of Mothers With Celiac?
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11 posts in this topic

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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