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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

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  1. Anyone else have a child that clearly was getting gluten through breast milk and very seriously reacting?    That's how it all started with us.   No one ever suggested I take gluten out of my diet and I had no idea what Celiac even was.    It got so bad that my LO stopped eating for days before the doctor finally had me put him on hypoallergenic formula.    I get so many comments from doctors like "gluten can't pass through breast milk" to "kids can't get Celiac symptoms until they're much older"  which is all clearly untrue.   Just wondered if I'm alone over here! 
  2. I was diagnosed with Celiac in December 2011. I believe I had symptoms for 5 years prior to diagnosis (beginning very mildly and progressing to rather severe). I became very ill before my diagnosis and am confident my stomach was heavily damaged. I follow a strict gluten free diet and our home is completely gluten free (including non food items). After going gluten-free, my stomach was still sensitive so I was cautious about what I grains, no to little dairy. As time passed, my stomach felt better, but didn't get to 100%. I became pregnant in July 2012. I felt great throughout the pregnancy. I maintained the strict gluten-free diet, but found other foods no longer bothered my stomach. The baby came about a month early. No issues, completely heathy, great delivery. My milk came in great, I had the engorgement that I read about everywhere. The first two weeks started great. Not the greatest latch, but well enough given he was a smaller baby. This all gave me high hopes that breast feeding would go well this time around. With my first child, I was undiagnosed and now realize I had low milk supply. I suspected then, but just thought I had issues with pumping. After about two weeks, the baby started occasionally needing a formula supplement at night. Then it became every night. Then it was occasionally during the day as well. It it just kept getting worse. And i could tell my milk supply was less. Around the same time, I stated experiencing what I called my healing symptoms: slight stomach irritation after eating, slightly bloated stomach that gets worse throughout the day, gas (though I didn't have issues with that after going gluten-free). I am now almost 10 weeks postpartum, and the baby gets a supplement at almost all feedings. It's actually as if the breast milk is the supplement, because he gets more formula than breast milk. I have followed up with my gastroentologist....blood work is great. Best ever. Creatinine is a bit low and that's it. He thinks my symptoms could be hormone related. I've been working with my local breast feeding clinic at the hospital. My first visit they determined I'm only producing 1 ounce per feeding. They put me on Domperidone. My second visit (1week later, about 5 days of Dom.), I was producing 2 ounces. My third visit, 1 1/2 weeks later, I'm closer to an ounce again. I had nursed about an hour or hour and half before the appt, but the RN thought I should have reproduced by then. They basically sent me on my way with no further advice other than feed the baby and pump when I can to help with demand. I nurse on demand, and also nurse first every feeding before supplementing. I try to make sure he nurses long enough and assist with breast compressions to make sure each breast is fully emptied before given the formula. I'm a thin person naturally. I've always been able to eat what I want and not worry about weight...I lost a fair bit a weight (10-15 lbs) when I got really sick and had only gained 5-10 back before conceiving. I only gained ~20 lbs with the pregnancy. At my 6 week postpartum checkup, I was back to my normal presickness weight. I had not been hungrier then normal, but still added an extra snack to try to consume extra calories to support nursing. After starting the Dom. I am a lot more hungry and have been eating more. I have a very clean diet....little processed food, lots of nutrient dense foods (eggs, clean meat, fruits, veggies, seeds, nuts). Our pediatrician, who is also my primary care dr, commented today at the baby well appt that he's not surprised I'm having nursing issues....with a high metabolism I probably struggle to get enough calories for myself he said. I would love to be able to exclusively breast feed my baby, but I have no idea if my body is capable of that at this point. Any suggestions or thoughts? Can this be as simple as I need to eat more? Most people already think I eat a lot for my size. (Haven't done a calorie count). I keep thinking it's somehow related to the celiac because of the changes that occurred together after 2 weeks postpartum. Thanks!
  3. Okay I have Celiac disease and I think there is a great likleyhood my mother does as well. To be honest listing all the things that have gone wrong with her health since I've been alive (39 years) is like writing a poster for Celiac symptoms and complication. Most recently she went in to have cataract surgery in November and either during or immediately after surgery (unknown or at least unacknowledged at the time) she had a mild stroke. We found out about the stroke after she went to her new DO in March for weakness. She is finding it difficult to stand/walk and is often very dizzy. The DO first noticed she had a small mass in her right breast which became her immediate focus. It was a very tiny cancer and the Dr's alternated between saying it was malignant and benign but either way they insisted it must come out immediately. They also assured her this had nothing to do with the weakness. They did a lumpectomy and sent her in for an MRI of the brain to make sure the weakness wasn't brain cancer. MRI came back showing she had had a stroke a few months earlier. Now before we could do anything else including physical therapy and X-ray therapy for the affected breast she developed shingles! She was finally allowed after another two weeks to begin X-ray therapy. The oncologists are panicd because she has been getting the lowest doses possible and she is getting weaker and Mom is telling them she wont survive the treatments. The Oncologist suggested she could have an unusual case of a rare autoimmune disease called Myastenia Gravis. It usually shows itself through weakness in the eyes and her eyes look fine. So Monday the oncologist insisted her DO has to get her in to a Neurologist now! He also sent her for another MRI. We went to her DO yesterday and after a bit of poo pooing the oncologists panic the results arrived at the DO's office. There is new damage to my mom's brain. It is not a stroke but they don't have any idea what it is! The DO ordered full bloodwork (including a celiac panel at my insistence) and told us to come back in 2 weeks and by then she will have found mom a neurologist. Now when Mom went for her X-ray therapy the nurse at the oncologist said that would never do and she now has another appointment to talk to the Oncologist today.   All this to ask two things 1) The DO said that the results of the Celiac panel could come back false positive because mom is immune compromised by the X-ray therapy. Is that true? 2) Anyone have any thoughts on my mom's situation? Mom is getting very tired of not knowing what is wrong and she used to a sitter, she sat with mostly dementia patients, she's getting rather scared and so am I. Right now she is mentally on the ball it is physically she is falling apart but with it being brain damage.....she also going crazy not being able to do anything. Her arms and more so her legs are so weak she can't hardly get to the bathroom and it's only a couple feet away.     They should get the blood work back today but I don't know if they will call us with the results or not.
  4. Baby Claire is my fourth baby, my “last” baby, and one of the greatest gifts of my life. She is the first baby I’ve had since being diagnosed with Celiac Disease and going gluten free. Because of this, I spent a lot of time during the postpartum period obsessing/fretting/freaking out about if/when I should expose my dear baby to gluten. I felt that I needed to do everything that I could to protect her from developing celiac disease. As usual, my husband was much more laid back and calm about the whole situation! I researched my question and discovered the following: 1. Based on the best available information, gluten should be introduced to the “at risk” baby between 4 and 6 months of age. This runs counter to the current notion that infants should be exclusively breastfed for 6+ months and not have solids introduced until after 6 months. 2. Babies should be breastfed when gluten is first introduced and should continue to receive breast milk for at least 2-3 months after the first introduction to gluten. Here is some of the science behind what I discovered: -Anti-gliadin antibodies (antibodies against the major gluten protein) are present in breast milk of all women. The highest antibody titers are in colostrum, or early breastmilk, and levels decrease with time. It is hypothesized that these antibodies, which are passed from mother to baby, provide immunity to babies when gluten is introduced. Please refer to my post from November 2012 for additional information. -Norris, et al. followed a large cohort of infants (>1500) in the U.S. who were at risk of developing celiac disease between the years 1994 and 2004. Feeding practices were analyzed and their research showed a much higher risk of celiac disease if gluten was introduced between 1 and 3 months of age or after 6 months of age. - The rates of celiac disease skyrocketed in Sweden between 1984 and 1996; 3% of children born during this time developed celiac disease. This epidemic coincided with a nationwide change in feeding practice recommendations from starting solids between 4-6 months until after 6 months of age. This led to many infants having gluten introduced after being weaned from breastfeeding. See link for more information. - The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) recommends avoiding both early (<4 months) and late (>7 months) introduction of gluten and to introduce gluten while the infant is still being breastfed. This mirrors the advice given by the University of Chicago Celiac Center (see website). The American Academy of Pediatrics emphasizes the importance of introducing gluten while breastfeeding in their 2012 “Breastfeeding and the Use of Human Milk” policy statement. Overall, there seems to be a current consensus for an optimal “window” for introducing gluten to the “at-risk” baby between 4 and 7 months. Back to sweet, little Claire. We started her on wheat-contaminated baby oatmeal at 4.5 months one time/day for about 4 weeks. She received exclusive breast milk for the next 2.5 months and is now a gluten-free baby. We’ll see what develops with time, but at if she develops Celiac Disease, at least I will know that I tried my best to prevent it!
  5. Not sure where to begin... I'm 57, had BC 3 yrs ago (Double Mastectomy, no Chemo or Radiation) and diagnosed with Lupus last year. I tried gluten-free a couple of years ago (because so much cancer info I read suggested it) and lasted all of 11 days. During that time I felt HORRIBLE, flu like, but going to the bathroom seemed to be what it ought to be. I began bioidentical hormone therapy with a top specialist in that field a few months ago and the depression (that accompanied the 20-25 hotflashes per day) is gone. This doctor said that if I had such a strong reaction when I tried gluten-free, it would probably benefit me to do it. So, I'm here now at about a month. Some feeling sick about the 2nd week, but not as bad as the time before. However, although I never got stomach problems before from wheat, now that I'm "off" it, if I have a little bit somehow (like about 5 of Arby's curly fries must have had it), I BLOW UP (gas, etc.) Is this because my gut was all leaky before and the big molecules were just dropping through, messing me up but not causing discomfort? And now it does cause problems because the lining is smoother and the big particles can't just drop through like they used to? I'd rather not mess with testing as we have a $5,000.00 deductible, this hormone specialist is costing a lot (out of pocket), and we just can't afford it. Does my situation sound like Celiac or just "leaky gut" that has probably resulted in poor absorbtion leading to the other health problems? This diet IS a pain to me: I have two special needs girls whom I homeschool and it's hard to fit in all the cooking. My family will NOT eat gluten -free so it adds that much extra to do. I'm wanting regular buns on sandiches when I need to eat out, soft, fluffy rolls that are set on the table at a restaurant...I want to be in denial, I guess that this is what I need for my health. I hope this is the place to post this. I spent a lot of time looking for a gluten-free support group for adults and was directed here . I could find no other online group for adults on Gluten Free that weren't labeled as for "Celiacs). I live too far out in the boonies and am too busy to get to "local" groups. I appreciate any help anyone can give me with my confusion. Thanks, tklp