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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is It A Casein Issue?
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7 posts in this topic

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!

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Casein is the phosphoprotein in dairy products. We usually just say protein for short, but it is the casein that is so bad for us. The lowest casein content is found in butter. Some of us tolerate butter. Which by the way i think you should only use butter, if you can have dairy, that margarine stuff is really bad for your arteries etc.

Yes, for some of us dairy is as bad as gluten. I would recommend that you take all the dairy out of the child's diet. She should improve quickly. she might be able to tolerate butter in homemade cookies that kind of thing. I seem to tolerate it okay. But have been off dairy for quite a while.

After maybe a year or so your child might be able to tolerate limited amounts of things like cheese. Or maybe even sooner, depends on your child... I would never give her milk, better to use coconut milk in cooking. You can also use almond milk, but please do not give her soy. Soy is really bad & can cause worse problems... nutritionally she does not need milk or soy to be healthy, despite what the prevailing big money dairy lobby would like you to think...

It seems that it is really hard for us to give up dairy. But it is like gluten, it has that addictive property. It takes about 2 weeks of dairy free to get over the craving. But once you get used to not using dairy it really is not that bad, just put plenty of roasted veggies & fresh herbs etc & lots of meat on her pizza, grated carrot looks good on tacos, a salad with at least two meats gives a taste variety & you will not miss the cheese. I make frito pie with no cheese, layer fritoes with Hormel Chili WITH Beans (the only one that is gluten-free) & bake in oven till bubbly, if your child likes onions you can layere those in also, same thing with enchiladas, just heat your tortillas dip in the above chili fill with shredded chicken & onions, roll up place in casserole dish top with rest of the chili & bake till bubbly.

I am reading the book "Good Calories Bad calories" this is a serious read & long but well worth it, along with this book, from what I have learned so far, when you cut out dairy I would make sure that you give your child plenty of animal fat, such as bacon & fatty steaks etc. contrary to what the food myth is to eat low fat, it really is not healthy. Like most of us already know it is the white flour & sugar that is so bad for ones health, really the "fast carbs". So when your child has any carb it is good to include fat & protein with it. A pizza loaded down with pepperoni and bacon with a little dipping sauce of herbed olive oil is a good thing...

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Regular allergy tests won't show a problem with casein, if one exists. You can tell this by dietary test and/or by testing by folks such as Enterolab.

The very lowest casein content is in ghee, which is so clarified that no protein remains. I react to butter.

I disagree with gfpaperdoll's conclusions about a healthy diet BTW But this really isn't the place to argue about that. Anyone who wants to can do their own research and draw their own conclusions. (I would direct interested people to McDougall, Ornish, Esselstyn, Barnard, Novick, Fuhrman, Shintari, etc.) We do agree about some things, though, like milk, trans fats, and refined carbs.

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Well, probably to feel normal and like all the other kids she may possibly actually sneaking some food there, I mean eating it instead of always having her own separate food. the temptations with all those glutenous snacks and foods right infront of her nose at school where she's all on her own is tremendous. It makes me afraid of when my little one is gonne go to school!

Let me tell you something! If she only has an sensitifity to thoses things, it's NOT an Allergy and won't show on Allergy-Test! My daughter just had all the tests done, asnd little did you know- she's basnned from Wheat for lifetime now due to her being Celaic, but she's not the least allergic at all to it. If it wasn't for her Celaic amijhng her sensitive to it she would not ever have a issue with it. Sadly she's not alelrgic to anything rpetty much BUT gets all the Gastrointestinal symptoms she gets with beeing glutened when she ingests anything dairy, anything goatmilk anything soy- rpobalby the worst soy. It is extremely hard to feed her overall, since there is sooooooo much she has trouble with digesting or dealing with!

Go for the Allergytest, but if you see something that turns up cero but you feel like it's an issue put her on a dairyfree diet for a while as well to see if she gets better! As for the Antibodies to stuff, some people just don't produce enough to have elavated levels and will always come up negative, that's why the Biopsie is still goldstandart in diagnosing celiac!

PS: Have a talk with her again, as well with her teacher keeping an eye on her for a week if she's getting food from others or really sticking to her own stuff. If she's good with her own stuff it's very like that she's getting crosscontamination! That possibility starts already with the soaps on Schoolsinks which often contains gluten to the kids simply NIOT washing their hadns after eating, touching things she touches and voila, you have her already glutened!

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!
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Hathor, you should read "Good Calories Bad calories" he has referenced every study (well almost) since the 1800's. there are at least 100 pages in the back of references. This book is a very technical read & not for everyone, but it will give you some good insight as to what really goes on with a lot of these studies & the NIH and other organizations that SHOULD be protecting our health & keeping us informed. When you read this book you will see that will never happen...

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We had the same problem with my son. After going gluten free he was doing fine until about 6 month later when all the symptoms came back. He had a RAST test done (allergy test) and came up negative to everything. Suffered on for another 2 years before he had his second colonoscopy which showed white bumps in his colon which the doctor said signified an allergy to something. The first thing I did was take away milk and all the symptoms went away. He now drinks rice milk and also uses it in his cereal (it is fortified with calcium and all the stuff in milk). I also use it to cook. We have found a dairy free butter called earth balance which tastes just like butter. For ice cream I use Toffuti brand dairy free ice cream treats. They also make a good sour cream. So he is not missing much as long as we are eating in. I will also add that since he started back to school in September I have seen some unexplained return of symptoms including a new one, weird red rings that appear on his face out of no where and then disappear in a few days, only to return again. He swears he isn't cheating but I wonder about the cc issue in school, he is in first grade.

Nicole

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My 8 year old and I are both gluten and casein sensitive per entero lab. As others have said, getting used to non-dairy isn't so bad after a while. There are also some decent Rice Dream ice cream flavors! We use the earth balance butter also...it's soy but small amounts. Ghee would be better I guess but I haven't seen it yet to buy it.

One thing i've noticed big time with my daughter is a major emotional/behavioral reaction to food additives like food colorings (especially red#40 and yellow#5, but also the others), MSG, etc. so you might want to check how much candy/pop/colored juices/punch etc she might be getting which has those things in it. I think with the intestinal damage, you have leaky gut which allows these big molecules to go out of the intestine, into the bloodstream, and cross the blood/brain barrier. My daughter has tantrums that only 2 year olds should be having on the occasions when she gets too much of these coloris/etc. BTW, parmesan cheese is extremely high in MSG (free glutamate) and i've seen my daughter react to that as well in the past when we were still eating dairy.

good luck!

Liz

My 6 year old has been on a gluten-free diet for the last year. We had her blood tested twice prior to that but each time it came back negative. My husband as well as several extended family members have Celiac so I decided to put her on a gluten-free diet due to her behavioral symptoms. It made a huge difference in how she physically and emotionally felt as well as her behavior. Obviously we kept her on the gluten-free diet. In the last 6 months, some of her symptoms have returned. She has some of the same behavioral issues and has started to havae headaches and stomach aches again. I am very careful about gluten and the whole family eats gluten free. I guess it is possible that she is getting some somewhere but I don't know where. As I type this I realize that her symptoms have returned since school started back up in september. Hmmm. Well I have also noticed that she seems more irritable after she has milk-like in cereal, or lots of cheese-like on pizza but not so much if it is cooked in something. I recently read something that said that 50% of people with celiac also have problems with casein. I am wondering if she may have a problem with casein? I am planning on having some allergy tests done at her next checkup but should I try just eliminating it in the meantime? How is casein intolerance identified? Is it like gluten tests that aren't always accurate? Is dairy and casein the same thing? Going dairy free is my worst fear! If anyone can shed some light on the whole casein issue I would appreciate it sooo much!
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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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