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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

    4. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

    5. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,074
    • Most Online (within 30 mins)
      7,748

    Ieuan
    Newest Member
    Ieuan
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • 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.