Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is It A Casein Issue?


pinktroll

Recommended Posts

pinktroll Apprentice

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Casein is the phosphoprotein in dairy products. We usually just say protein for short, but it is the casein that is so bad for us. The lowest casein content is found in butter. Some of us tolerate butter. Which by the way i think you should only use butter, if you can have dairy, that margarine stuff is really bad for your arteries etc.

Yes, for some of us dairy is as bad as gluten. I would recommend that you take all the dairy out of the child's diet. She should improve quickly. she might be able to tolerate butter in homemade cookies that kind of thing. I seem to tolerate it okay. But have been off dairy for quite a while.

After maybe a year or so your child might be able to tolerate limited amounts of things like cheese. Or maybe even sooner, depends on your child... I would never give her milk, better to use coconut milk in cooking. You can also use almond milk, but please do not give her soy. Soy is really bad & can cause worse problems... nutritionally she does not need milk or soy to be healthy, despite what the prevailing big money dairy lobby would like you to think...

It seems that it is really hard for us to give up dairy. But it is like gluten, it has that addictive property. It takes about 2 weeks of dairy free to get over the craving. But once you get used to not using dairy it really is not that bad, just put plenty of roasted veggies & fresh herbs etc & lots of meat on her pizza, grated carrot looks good on tacos, a salad with at least two meats gives a taste variety & you will not miss the cheese. I make frito pie with no cheese, layer fritoes with Hormel Chili WITH Beans (the only one that is gluten-free) & bake in oven till bubbly, if your child likes onions you can layere those in also, same thing with enchiladas, just heat your tortillas dip in the above chili fill with shredded chicken & onions, roll up place in casserole dish top with rest of the chili & bake till bubbly.

I am reading the book "Good Calories Bad calories" this is a serious read & long but well worth it, along with this book, from what I have learned so far, when you cut out dairy I would make sure that you give your child plenty of animal fat, such as bacon & fatty steaks etc. contrary to what the food myth is to eat low fat, it really is not healthy. Like most of us already know it is the white flour & sugar that is so bad for ones health, really the "fast carbs". So when your child has any carb it is good to include fat & protein with it. A pizza loaded down with pepperoni and bacon with a little dipping sauce of herbed olive oil is a good thing...

hathor Contributor

Regular allergy tests won't show a problem with casein, if one exists. You can tell this by dietary test and/or by testing by folks such as Enterolab.

The very lowest casein content is in ghee, which is so clarified that no protein remains. I react to butter.

I disagree with gfpaperdoll's conclusions about a healthy diet BTW But this really isn't the place to argue about that. Anyone who wants to can do their own research and draw their own conclusions. (I would direct interested people to McDougall, Ornish, Esselstyn, Barnard, Novick, Fuhrman, Shintari, etc.) We do agree about some things, though, like milk, trans fats, and refined carbs.

ShayBraMom Apprentice

Well, probably to feel normal and like all the other kids she may possibly actually sneaking some food there, I mean eating it instead of always having her own separate food. the temptations with all those glutenous snacks and foods right infront of her nose at school where she's all on her own is tremendous. It makes me afraid of when my little one is gonne go to school!

Let me tell you something! If she only has an sensitifity to thoses things, it's NOT an Allergy and won't show on Allergy-Test! My daughter just had all the tests done, asnd little did you know- she's basnned from Wheat for lifetime now due to her being Celaic, but she's not the least allergic at all to it. If it wasn't for her Celaic amijhng her sensitive to it she would not ever have a issue with it. Sadly she's not alelrgic to anything rpetty much BUT gets all the Gastrointestinal symptoms she gets with beeing glutened when she ingests anything dairy, anything goatmilk anything soy- rpobalby the worst soy. It is extremely hard to feed her overall, since there is sooooooo much she has trouble with digesting or dealing with!

Go for the Allergytest, but if you see something that turns up cero but you feel like it's an issue put her on a dairyfree diet for a while as well to see if she gets better! As for the Antibodies to stuff, some people just don't produce enough to have elavated levels and will always come up negative, that's why the Biopsie is still goldstandart in diagnosing celiac!

PS: Have a talk with her again, as well with her teacher keeping an eye on her for a week if she's getting food from others or really sticking to her own stuff. If she's good with her own stuff it's very like that she's getting crosscontamination! That possibility starts already with the soaps on Schoolsinks which often contains gluten to the kids simply NIOT washing their hadns after eating, touching things she touches and voila, you have her already glutened!

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!
gfpaperdoll Rookie

Hathor, you should read "Good Calories Bad calories" he has referenced every study (well almost) since the 1800's. there are at least 100 pages in the back of references. This book is a very technical read & not for everyone, but it will give you some good insight as to what really goes on with a lot of these studies & the NIH and other organizations that SHOULD be protecting our health & keeping us informed. When you read this book you will see that will never happen...

Nic Collaborator

We had the same problem with my son. After going gluten free he was doing fine until about 6 month later when all the symptoms came back. He had a RAST test done (allergy test) and came up negative to everything. Suffered on for another 2 years before he had his second colonoscopy which showed white bumps in his colon which the doctor said signified an allergy to something. The first thing I did was take away milk and all the symptoms went away. He now drinks rice milk and also uses it in his cereal (it is fortified with calcium and all the stuff in milk). I also use it to cook. We have found a dairy free butter called earth balance which tastes just like butter. For ice cream I use Toffuti brand dairy free ice cream treats. They also make a good sour cream. So he is not missing much as long as we are eating in. I will also add that since he started back to school in September I have seen some unexplained return of symptoms including a new one, weird red rings that appear on his face out of no where and then disappear in a few days, only to return again. He swears he isn't cheating but I wonder about the cc issue in school, he is in first grade.

Nicole

Lizz7711 Apprentice

My 8 year old and I are both gluten and casein sensitive per entero lab. As others have said, getting used to non-dairy isn't so bad after a while. There are also some decent Rice Dream ice cream flavors! We use the earth balance butter also...it's soy but small amounts. Ghee would be better I guess but I haven't seen it yet to buy it.

One thing i've noticed big time with my daughter is a major emotional/behavioral reaction to food additives like food colorings (especially red#40 and yellow#5, but also the others), MSG, etc. so you might want to check how much candy/pop/colored juices/punch etc she might be getting which has those things in it. I think with the intestinal damage, you have leaky gut which allows these big molecules to go out of the intestine, into the bloodstream, and cross the blood/brain barrier. My daughter has tantrums that only 2 year olds should be having on the occasions when she gets too much of these coloris/etc. BTW, parmesan cheese is extremely high in MSG (free glutamate) and i've seen my daughter react to that as well in the past when we were still eating dairy.

good luck!

Liz

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.