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

Gfcf Diet


dalma

Recommended Posts

dalma Newbie

I don't have any problem as far as I know with milk or dairy products, but I was tested positive for casein antibodies. I was wondering if I need to be cautious about consuming hidden casein as I need to be with gluten?

Thanks!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I would concentrate on the gluten because that is the bad guy that does the damage. As you heal from the gluten damage, you may find that you become more sensitive to casein. To my understanding, gluten will cause damage, but casein causes symptoms and not intestinal damage. I am not 100% on that, though.

Others are more informed.

CarlaB Enthusiast

If you have a casein intolerance, you need to read ingredients.

I tested positive for casein intolerance, went casein free for six months, then challenged it. I don't have any problems with casein. I noticed no difference whether I was consuming it or not.

dalma Newbie

Thank you very much for your replays. I am really not sure if any of my symptoms are either casein or gluten related but I am giving it try. It has been only couple of weeks since I've been on diet and don't feel any different yet, but I am willing to try.

kookaburra Rookie
If you have a casein intolerance, you need to read ingredients.

I tested positive for casein intolerance, went casein free for six months, then challenged it. I don't have any problems with casein. I noticed no difference whether I was consuming it or not.

What is the test for casein intolerance? Thanks!

dalma Newbie
What is the test for casein intolerance? Thanks!

I had Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value from Enterolab. This test includes: Antigliadin, anti-tissue transglutaminase, malabsorption test, gene test, and milk sensitivity test.

CMCM Rising Star

I thought my entire life until last year that I had severe dairy problems. Last year I tested positive for casein and gluten. I eliminated both for quite some time, then later discovered that when not eating gluten, I actually did fine with somewhat limited casein (dairy) in my diet. However, I questioned Enterolab about this, and they told me that if one tests casein sensitive, you should not eat dairy any more than you should eat gluten, that eating casein could also do damage. I don't know what to think at this point, but for what it's worth, my obvious dairy problems seemed to be linked with eating gluten. I seem to do OK with limited dairy, but if I have too much, I do get digestive and D problems with it. :(


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



Celiac.com Sponsor (A8-M):



dalma Newbie
I thought my entire life until last year that I had severe dairy problems. Last year I tested positive for casein and gluten. I eliminated both for quite some time, then later discovered that when not eating gluten, I actually did fine with somewhat limited casein (dairy) in my diet. However, I questioned Enterolab about this, and they told me that if one tests casein sensitive, you should not eat dairy any more than you should eat gluten, that eating casein could also do damage. I don't know what to think at this point, but for what it's worth, my obvious dairy problems seemed to be linked with eating gluten. I seem to do OK with limited dairy, but if I have too much, I do get digestive and D problems with it. :(

I pour regular milk by mistake (hard to get used to all this) in my gluten-free cereal. Didn't want to waste so I ate it, I didn't think it would hurt. Soon later I got nauseated and my heart started beating harder, not so much faster, but stronger. I wonder if that was because of the milk? I would need to do it again just out of curiosity.

Nancym Enthusiast

I tested positive for casein and I "cheat" every now on then, on the casein. I usually end up with a good case of "wind" (shall we say...) if not worse. So there's definitely stuff going on down under that brings on some stormy weather.

hathor Contributor

At first it would probably be good if you were as strict with the casein. You can always challenge later once your system is doing well on a Gluten-free Casein-free diet. You won't know if CF will make you feel better if you never truly go CF.

Just because you never noticed a problem doesn't mean it doesn't exist. I never noticed a problem with soy. But my test results said I had one. I cut out soy and found a few things improving that I had no idea were related. But since I was having soy all the time before, I never knew.

Another thing to consider is how high your score was and how much casein you had been having before the test. I was having very, very little casein and yet my score was pretty high. If you are used to lots of casein and your score was just over the threshold I don't know if you should be as concerned. Just thinking out loud ... I don't know if one can interpret the test results the way I am :rolleyes:

My husband and I are still arguing about whether I have a problem with yeast or not. My test result was just over the threshold. When I cut out yeast, I saw no impact. I also read of a test where a number of newly diagnosed celiacs also had yeast antibodies; after a year on a gluten-free diet, some of them were no longer creating them. I suppose the same thing could happen with anticasein antibodies, but I haven't run across any studies showing this happening. Yeast is the one I am planning on challenging at some point myself.

dalma Newbie
At first it would probably be good if you were as strict with the casein. You can always challenge later once your system is doing well on a Gluten-free Casein-free diet. You won't know if CF will make you feel better if you never truly go CF.

Just because you never noticed a problem doesn't mean it doesn't exist. I never noticed a problem with soy. But my test results said I had one. I cut out soy and found a few things improving that I had no idea were related. But since I was having soy all the time before, I never knew.

Another thing to consider is how high your score was and how much casein you had been having before the test. I was having very, very little casein and yet my score was pretty high. If you are used to lots of casein and your score was just over the threshold I don't know if you should be as concerned. Just thinking out loud ... I don't know if one can interpret the test results the way I am :rolleyes:

My husband and I are still arguing about whether I have a problem with yeast or not. My test result was just over the threshold. When I cut out yeast, I saw no impact. I also read of a test where a number of newly diagnosed celiacs also had yeast antibodies; after a year on a gluten-free diet, some of them were no longer creating them. I suppose the same thing could happen with anticasein antibodies, but I haven't run across any studies showing this happening. Yeast is the one I am planning on challenging at some point myself.

Thank for you the reply.

I am trying to avoid soy too because I have hypothyroidism and I know it's not good for me. I am not 100% soy free, though. I cook a lot but when you have to do it every single day it's not fun any more.

I was not high at all in any of antibodies that I have been tested positive. I had some milk on the day or the night before of the test.

Fecal Antigliadin IgA 23 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow

sfm Apprentice
I don't have any problem as far as I know with milk or dairy products, but I was tested positive for casein antibodies. I was wondering if I need to be cautious about consuming hidden casein as I need to be with gluten?

Thanks!

I was diagnosed casein sensitive, as well - but I notice that as long as I don't overdo it, I'm okay - where with gluten the slightest bit makes me violently ill. So I don't think it's the same - at least for me.

Sheryll

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    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.