Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Crazy Casein Confusion


skikat

Recommended Posts

skikat Apprentice

Okay- Son recently positive with enterolab- gluten intolerance with IGA and also (two celiac genes). He is about to be one in Jan. currently on Neocate formula. Dtr is 3 and a half and has been on soy milk for a month, (nose stopped running now). We are getting her and spouse tested now for Gluten Sensitivity. Here is my confusion-

1. I have read that casein proteins "mimic" and look like gluten proteins and that is why the body attacks them too, just like gluten. Therefore, the recommended gluten-free/CF diet. BUT......

2. I have also read that your body doesn't process casein proteins, due to the damage in gut. Once it heals, body can then tolerate casein.

Number 1's explanation sounds like you would have to be CF permanently and Number 2 sounds like you would have to be CF only temporary. Which one is right? I am confused.

Also- what about goat's milk. I read it doesn't have casein and can be a good milk sub, but haven't found much info on this forum. (maybe I am not looking in the right place)

So- I have also read soy is not good, but dtr seems to be doing okay. Should I replace with goat's milk? Can I try the goat's milk with my almost 1 year old, when he turns one? Neocate is very expensive.

Also- what is corn gluten? We have been reading labels and seem to find it in some things. Should we avoid this? I also saw our catfood has corn gluten meal in it. Cats have smelly, yucky poops. I just saw another post about catfood. I think I may try and switch.


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



Celiac.com Sponsor (A8-M):



vanillazeis Rookie
Okay- Son recently positive with enterolab- gluten intolerance with IGA and also (two celiac genes). He is about to be one in Jan. currently on Neocate formula. Dtr is 3 and a half and has been on soy milk for a month, (nose stopped running now). We are getting her and spouse tested now for Gluten Sensitivity. Here is my confusion-

1. I have read that casein proteins "mimic" and look like gluten proteins and that is why the body attacks them too, just like gluten. Therefore, the recommended gluten-free/CF diet. BUT......

2. I have also read that your body doesn't process casein proteins, due to the damage in gut. Once it heals, body can then tolerate casein.

Number 1's explanation sounds like you would have to be CF permanently and Number 2 sounds like you would have to be CF only temporary. Which one is right? I am confused.

Also- what about goat's milk. I read it doesn't have casein and can be a good milk sub, but haven't found much info on this forum. (maybe I am not looking in the right place)

So- I have also read soy is not good, but dtr seems to be doing okay. Should I replace with goat's milk? Can I try the goat's milk with my almost 1 year old, when he turns one? Neocate is very expensive.

Also- what is corn gluten? We have been reading labels and seem to find it in some things. Should we avoid this? I also saw our catfood has corn gluten meal in it. Cats have smelly, yucky poops. I just saw another post about catfood. I think I may try and switch.

Our GI dr. made it sound like the dairy intolerance is only temporary. I will never again give my daughter a glass of milk, but i cannot wait for the day when my only concern when reading labels is gluten!!! We have recently discovered that after an occasional glass of soy milk my three year old daughter has also formed a soy intolerance. If i could go back now i would never have given her "whole soy products" If only we had soy back just as an ingredient! Everything I've read about corn gluten says it is safe. Dont worry about it. I know its hard to see gluten and not freak out. I turned all red in the grocery store last week and my husband asked what was wrong with me, and all i could say was that the cracker isle makes me nervous. All those boxes with the word WHEAT on them as large as they could possible write it. It totally freaks me out. lol.

tarnalberry Community Regular

Lactose intolerance in celiacs may be only temporary, as lactase - the enzyme that digests the milk sugar, lactose - is produced at the tips of the villi in the intestines, which are often damaged in recently diagnosed celiacs.

Casein intolerance is different. I've seen very conflicting things on whether or not casein, one of the milk proteins, is suffienciently structurally similar to the gluten proteins that celiacs react to for it to start its own reaction. It certainly doesn't look like that is the case, from everything that I've read. But that doesn't mean that you can't have a casein intolerance independently, and have difficulty with the milk protein.

All mammals - from cows, to goats, to sheep, to whales, to humans - have casein in their milk. It's one of the defining characteristics. But there are different subtypes of casein, and different species of animals produce different ratios of subtypes in their milk. So, if you are intolerant primarily to only one subtype of casein, you may find that you can handle small to moderate amounts of a different mammals milk. But there's no guarantee, and it's a "go slowly, and try at your own risk" sort of thing.

As for corn gluten, that's another issue of technicalities. Technically, in the scientific/agricultural world, gluten merely refers to a grain protein. Doesn't much matter what grain - wheat, barley, rye, rice, corn, etc. For celiacs, we only care about a few specific glutens - gliadin (wheat gluten), secalin (barley gluten), horedin (rye gluten), and for some, avenin (oat gluten). The others are still *technically* plant protein glutens, but celiacs don't need to be worried about them at all. They are structurally very dissimilar to gliadin, so much so that they cannot start the chemical reaction that is the autoimmune disease of celiac.

skikat Apprentice

Thank you for the replies, that really clears up some of the confusion I had. It sounds like dairy can be reintroduced at some point, although I will probably stay away from whole milk by the glass. Maybe dairy products like cheese and yogurt will be okay? Both children were tested for IgE milk allergy and both were negative. I read an actual casein intolerance outside of gluten issues is rare. I am wondering if anyone has any children who are gluten-free but are able to do some dairy. I guess once we find out about dtr's gluten issues, (almost positive it is there) we will give her 6 months to "heal" her gut, then maybe re-introduce some cheese and yogurt. I am kind of talking out loud, and just running these thoughts past everyone to make sure I am on the right track. Thank you for all your support!

vanillazeis Rookie
Lactose intolerance in celiacs may be only temporary, as lactase - the enzyme that digests the milk sugar, lactose - is produced at the tips of the villi in the intestines, which are often damaged in recently diagnosed celiacs.

Casein intolerance is different. I've seen very conflicting things on whether or not casein, one of the milk proteins, is suffienciently structurally similar to the gluten proteins that celiacs react to for it to start its own reaction. It certainly doesn't look like that is the case, from everything that I've read. But that doesn't mean that you can't have a casein intolerance independently, and have difficulty with the milk protein.

All mammals - from cows, to goats, to sheep, to whales, to humans - have casein in their milk. It's one of the defining characteristics. But there are different subtypes of casein, and different species of animals produce different ratios of subtypes in their milk. So, if you are intolerant primarily to only one subtype of casein, you may find that you can handle small to moderate amounts of a different mammals milk. But there's no guarantee, and it's a "go slowly, and try at your own risk" sort of thing.

As for corn gluten, that's another issue of technicalities. Technically, in the scientific/agricultural world, gluten merely refers to a grain protein. Doesn't much matter what grain - wheat, barley, rye, rice, corn, etc. For celiacs, we only care about a few specific glutens - gliadin (wheat gluten), secalin (barley gluten), horedin (rye gluten), and for some, avenin (oat gluten). The others are still *technically* plant protein glutens, but celiacs don't need to be worried about them at all. They are structurally very dissimilar to gliadin, so much so that they cannot start the chemical reaction that is the autoimmune disease of celiac.

Tiffany, your post was awesome!!! So informative! Thank you!!

dlp252 Apprentice

Well, in my personal experience, I have been gluten free for two years and still can NOT have dairy. I can't tolerate goat milk either. I can have an ocassional sheep milk yogurt, but if I have more than one in a week, I start to feel the effects. My enterolab report showed an intolerance to both gluten and casein.

skikat Apprentice

Thanks for your input. My son showed no intolerance issues with casein when tested through enterolab. So, maybe he will be okay with goat's milk next year? We are having dtr tested through enterolab for gluten, casein, and soy to see what is going on there. It is just so hard with a 3 y.o, and a 1 y.o. to figure this all out. Especially, when your one-year old is in a state of transition with foods, textures, formula to milk, etc. It is so helpful to listen to other peoples experiences. So sorry to see your list of problems. Thank you for sharing your experiences.


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice
Thanks for your input. My son showed no intolerance issues with casein when tested through enterolab. So, maybe he will be okay with goat's milk next year? We are having dtr tested through enterolab for gluten, casein, and soy to see what is going on there. It is just so hard with a 3 y.o, and a 1 y.o. to figure this all out. Especially, when your one-year old is in a state of transition with foods, textures, formula to milk, etc. It is so helpful to listen to other peoples experiences. So sorry to see your list of problems. Thank you for sharing your experiences.

I am so sorry for your situation too. It's hard enough for those of us who can communicate how we feel, I can't imagine how hard it must be to try to help a young child or baby! I agree that it sounds promising that someday your son will be able to have a bit of goat's milk!

tarnalberry Community Regular

Eh... I think the figures on the commonality of food intolerances are wrong. I say that because I think doctors and researchers are relying on markers they already know, rather than accepting there may be markers they don't know and listening to patient responses. I don't think you could give me a battery of tests and empirically determine, without talking to me, that I'm casein intolerant. But if you load me up with dairy for a week, I get more constipated than usual, get headaches, get grouchy, and don't feel as well. They can say it's not "intolerance", but I'd say that I don't tolerate it well. :P

jen2be2 Explorer

My kids have been on the gluten-free diet for a year. They have had no problems with milk products after being gluten-free for 2 months.

hayley3 Contributor

I would not give my kid soy milk. I actually gave mine soy formula and I have read so many things since that time about how soy effects the thyroid and also something about how it has estrogen effects on little ones, esp. girls. Whether it's true or not I would not take the chance.

As a menopausal female, I have read many times to take soy for it's estrogen properties, so in my mind it is not good for children, since high estrogen has been associated with cancer.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,873
    • Most Online (within 30 mins)
      7,748

    Traconeil
    Newest Member
    Traconeil
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
    • trents
      Welcome to the forum, @jnstefan! She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement. But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:  
    • jnstefan
      My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!
×
×
  • Create New...