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

Question About Casein

misgiss

Recommended Posts

misgiss Apprentice
misgiss
Posted

We have been doing gluten-free diet for about 4 wks now with 3 y/o. Have seen some improvement in stool which is ecouraging but still a little frustrated. We're living in Japan and are VERY limited with foods he ca eat. My mil just sent a HUGE box of gluten-free food so we're set for about a month or so. Ane we're going home in about 6 wks so he'll be 100% gluten-free then. Anyway, dh and I are doing our best but still think he's getting gluten here and there because there's no way we can be 100% sure some of the things he eats is completely gluten-free.

He has dairy and casein allergy and there are these little hot dogs that he's been eating. The only meat here that isn't processed is ham. Everything else either has a sauce on it ot I don't know what kind of meat it is. Dh took package of hotdogs in to interpretor and there's no wheat but there is casein. Could this be contributing to his stool problems? I gotta tell you though, that even when he was completely dairy free he still had D.

We're doing diet because we're waiting until we get back to US so we can see doc and do tests and all that. Which reminds me of another question. We are also thinking about doing Enterolab (have read good things about it here). If we did and he came back positive will his ped accept that as valuable or legit info? I got a couple names of celiac docs from this site and was also wondering if we should go straight to them or start with his regualr ped? We have done blood tests here in Japan and everything came back normal but dh and I both have a feeling he is celiac.

I hope I wasn't too all over the place. Thanks for any help.

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

Celiac.com Sponsor (A8-M):


lorka150 Collaborator
lorka150
Posted

Hi there,

I am not a parent but I, myself, am casein free. I have similar symptoms when I consume casein or gluten (some seperate, too), but diahrrea is one of them that occurs in both. I wouldn't doubt that it could be from them, and if he has a casein intolerance, i really suggest you stop letting him eat the dogs. They'll just hinder his healing. I understand you're in a tough spot, but I hope that it can be figured out and he'll feel better soon. Good luck!

Eeyorific Rookie
Eeyorific
Posted
We have been doing gluten-free diet for about 4 wks now with 3 y/o. Have seen some improvement in stool which is ecouraging but still a little frustrated. We're living in Japan and are VERY limited with foods he ca eat. My mil just sent a HUGE box of gluten-free food so we're set for about a month or so. Ane we're going home in about 6 wks so he'll be 100% gluten-free then. Anyway, dh and I are doing our best but still think he's getting gluten here and there because there's no way we can be 100% sure some of the things he eats is completely gluten-free.

He has dairy and casein allergy and there are these little hot dogs that he's been eating. The only meat here that isn't processed is ham. Everything else either has a sauce on it ot I don't know what kind of meat it is. Dh took package of hotdogs in to interpretor and there's no wheat but there is casein. Could this be contributing to his stool problems? I gotta tell you though, that even when he was completely dairy free he still had D.

We're doing diet because we're waiting until we get back to US so we can see doc and do tests and all that. Which reminds me of another question. We are also thinking about doing Enterolab (have read good things about it here). If we did and he came back positive will his ped accept that as valuable or legit info? I got a couple names of celiac docs from this site and was also wondering if we should go straight to them or start with his regualr ped? We have done blood tests here in Japan and everything came back normal but dh and I both have a feeling he is celiac.

I hope I wasn't too all over the place. Thanks for any help.

Please forgive me, this reply may be "all over the place" Stayed up way too late watching a baseball game that lasted wayyyy too long, then followed that up by getting up before daylight. lol so please bare with me.

Prior to my ds (who's turning 4 next month) going gluten-free, all forms of milk including casein would cause him the big D) 2 years into a gluten-free diet, he's still CF but his symptoms when given casein are no longer the big D. (more sinus/reflux now) But as they say, anythings possible. One thing to consider, is cross contamination with gluten.. for example. We were giving DS a jelly (this is before he went corn free on top of gluten-free/CF) Gluten cleary was not an ingredient. But he was going days and days with major D. I searched through and tore apart everything I was giving him at that time. It turned out, that the jelly was made on shared lines with gluten, and had just enough CC to stir a muck and do damage. So that's always something to consider.

A few things to consider with tests when you get back to the US. is one has to be consuming gluten for the celiac blood panel and/or the Endoscopy to be accurate. We did not know this until it was too late for our son. While his IgG were pos. they didn't run the TtG or the other one that is specific to Celiac (which is slipping my mind at the moment, I think it's EMA, but too sleepy to be sure) until AFTER he was already gluten-free for a year!!! OF course they were both Neg at that time. Now the Entrolab will be ok to do at any time, but most doctors do not support Dr. Fine and or his tests. I know everyone we've seen doesn't. Now, my son's ped ran genetic tests of her own on both of my kids, and they both have the marker for Celiac as well as Gluten sensitivity, this isn't enough to dx one with celiac disease or GS, but you can't have celiac disease without the genetic marker... so that may be one route for you. I hope this helped some.

Kristie

CarlaB Enthusiast
CarlaB
Posted

I was diagnosed casein and gluten intolerant by Enterolab. It doesn't matter if the doc accepts it or not because it's all dietary changes and you are in control of that! Also, without an official diagnosis you don't have to worry about insurance denials for pre-existing condition!

If he's not 100% gluten-free, then he would still have symptoms. I had worse symptoms when I cut down on gluten than when I consumed it all the time. I have just as bad of diarrhea from casein as from gluten.

The other benefit of Enterolab is that you don't have to torture your son for the next month by having him eat things that make him sick! He would have to be consuming gluten for it to show up in the current methods of testing. I think it's ludicrous! We would never tell someone to keep smoking till their emphysema test!! <_<

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.