What Is Casein?

[mouth]

HI all. Very new here.. What is Casein? ok, here we go. My daughter's blood work was positive since like 4 years old. All look-see was negative as were the first 2 biopsies. Then all of a sudden she gained alot of weight, and her numbers skyrocketed, 3rd biopsy looksee was negative, but the pathology was "in the grey area" dependent on the blood work. Now, I take my daughter to a peds GI at a "specialized childrens' hospital." Thank goodness there is a supermarket near me that sells gluten-free foods. IT IS EXPENSIVE= just as bad as ordering on line I think maybe, maybe not, but i have no option. What is this about "Gold Standards?" Don't understand that. Now, I was told test level below 20 was normal.. (I thought I saw somewhere else here 11 or under. ) Can other auto-immune diseases have anything to do with Celiac? My daughter has had so much blood work done, I am sure a tTG was done. I will ask though. I heard that there can be behavoiral problems with kids that have Celiac until diet is changed. Is this true and if so, how long before you see a change? On top of all this stuff, she got the curse... the doctors aren't happy about that. She is 13 but they say it is too soon for her.. Bone age is too young.. very small..Asmatha, ADD, IQ thru the roof.. immature sometimes.. does any of this sound familiar to anybody? I look forward to hearing from anybody who can help.. BTW, HOW DO I DO THE PROFILE SECTION? I can sometimes be really computer dummy

Thanx, Mouth

[lonewolf]

I'll try to answer a few of your questions.

Casein is the protein in milk. It is in every dairy product - milk, yogurt, cheese, butter - and also can be found in things with whey, sodium caseinate or milk solids.

Gluten free specialty foods are expensive, but many "normal" foods are naturally gluten-free. Things like meat, poultry, eggs, beans, fruits, vegetables, potatoes, rice, corn, etc. These aren't expensive at all and you can make all kinds of things from regular food.

The "Gold Standard" refers to the biopsy of the small intestine being the best way to diagnose Celiac. If the biopsy is positive, it's absolute proof that the person has Celiac Disease, so it is sometimes referred to as the Gold Standard for diagnosis.

Celiac is associated with many other autoimmune diseases - there's a whole section of related diseases that you can find if you go to the "Site Index" on the menu on the upper left side of the screen.

Behavioral problems can be related to Celiac - you can find several threads on this in the Parents section, which is where you are now. Just look at all the threads for the past couple of weeks and there are several.

I'll let someone else chime in on the rest.

Welcome to the site and please feel free to stick around and ask questions.

[Juliet]

A few weeks ago, someone posted a link to another post they had written about "neurological Celiac Disease" that I found fascinating. I don't have the link, but I did copy and save the info to share with others. My son hasn't exhibited any of these signs, but I know of several other children who have and overall this was a real eye-opener for me. I even met one woman who had a child who was initially diagnosed as a borderline, high-function autistic child with hearing loss who after 6 months of being gluten free was still borderline but no longer on the side of "autistic" and his hearing improved. I'm pasting the copy of the post right here:

"I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . ? ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease."

[mouth]

A few weeks ago, someone posted a link to another post they had written about "neurological Celiac Disease" that I found fascinating. I don't have the link, but I did copy and save the info to share with others. My son hasn't exhibited any of these signs, but I know of several other children who have and overall this was a real eye-opener for me. I even met one woman who had a child who was initially diagnosed as a borderline, high-function autistic child with hearing loss who after 6 months of being gluten free was still borderline but no longer on the side of "autistic" and his hearing improved. I'm pasting the copy of the post right here:

"I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . ? ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease."

[mouth]

Juliet,

thank you so much for that article.. Thank you for answering questions. Good luck, keep in touch. again, THANK YOU