Casin

[Deby]

I've been hearing a lot about casin free lately. What exactly is that. I have celiac as do my 2 sons. My sister is alerigic to cheese. Is her alergy related to celiac disease as something to do with casins? Just curious since blood tests don't show any antibodies for celiac disease but she has some symptoms, though she doesn't seem to specifically react after eating wheat.

Monica

[gf4life]

Casein is one of the main proteins in milk. It is in all forms of dairy, including the lactose free ones. It causes similar gastric problems in many people with celiac disease. Most doctors do not test for a casein intolerance, only lactose intolerance. Dr. Fine at Enterolab does a test for milk intolerance that can tell you if casein is your problem. Many of us had that test done at the same time as out gluten intolerance tests.

Do you mind if I ask what your sister's reaction to cheese is? I think cheese has a higher concentration of casein in it. Also it is posible for your sister to be only dairy intolerant, or both dairy and gluten intolerant, or gluten intolerant with a dairy allergy, etc. She wouldn't necessarily have symptoms that could be directly tied to the gluten consumption, since the damage happens when you eat the gluten, and then the symptoms come later. Only a few people react immediately when they eat gluten. For most of us it is a few hours, to a day or two later. For some it is a week or more after the fact. The blood tests have been wrong in the past. Sometimes it takes a very large amount of damage in the intestines before the antibodies will leak into the blood stream. That is what I liked about the Enterolab tests. They measure the amount of antibodies in the intestines (where the gluten reaction happens!) and I believe this is more accurate, and gives us a chance for a much earlier diagnosis. The sooner we start the diet, the healthier we are...

God bless,

Mariann

[Deby]

Thanks for the response.

My sister has nausia and fatigue after eating hard cheese only. Soft cheeses don't seem to bother her. Her other symptoms are general fatigue, IBS with bloating, cold like nasal symptoms and vertigo. Her blood sugar is also slowly rising and she has pain in her kidneys, especially the right one. She has asked for a biopsy but her insurance refuses her because of a negative response to the antibody test.

BTW, my antibody test also came out negative. I'm pretty sure I developed celiac disease after almost losing my kidney and having to have emergency surgery at age 21. I couldn't even leave my house after getting out of the hospital! I lost a lot of weight going from a size nine to a size 2. After years not knowing what was wrong with me, I finally just figured this was my bodies reaction to the kidney function problems (even though I didn't lose my kidney and the size and function, through testing, had returned to normal)

After my twin boys were diagnosed through a research study, CEDAR, I looked up the symptoms on the web and figured out my own problem was gluten. I had the genetic marker but no antibody as the CEDAR study had screened my whole family since my boys were entered in the study.

I just took myself off of wheat and have been feeling so much better. Though this was at age 35 and much damage had been done already. I'm 38 now and have been strictly gluten free for 3 years. I was dairy free and corn free too, but have been able to tolerate these in limited quantities now.

My mother has celiac symptoms but will not stick to the diet since her antibody test came back negative. By brother has HD and sticks to his diet.

I'm actually surprised by all of the people who don't show on an antibody test but have celiac.

Monica