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Article from celiacchicks:

Here Elisabeth Hasselbeck and friends listen intently to the brewmaster. I met Elisabeth later that evening and she was super nice. She told me to tell you that The View is doing an in depth segment on celiac disease this next Wednesday March 14th. Also, remember my little stunt at The View? Well, she actually did get the CeliacChicks tshirt! She explained that the reason it's taken her so long to "come out" about celiac disease, was because she was self-diagnosed and until she was able to get the gene test to confirm it, she didn't feel it was very responsible to claim she had a "disease" when she wasn't sure. That makes sense to me, especially for a public figure.

I can't wait to go home and watch The View! I set up the tape for it a week ago

All the marshmallows I've seen are gluten-free. A lot of recipes say use gluten-free everything, which I always think is kindof silly because I wouldn't put something with gluten in a gluten-free recipe! Do they honestly think we're not going to check the gluten status of the ingredients?

I really like Food for Life brand bread. It's pretty common in mainstream grocery stores. Except the mainstream stores always have the brown rice kind which I don't like. I like the red and black rice so I have to go to a gluten-free store. You could also try making your own bread. I recommend any of the breads in The Gluten Free Gourmet Cookbook. I recommend all the cakes and cookies in that book, too

I always drink vodka when I go out. I haven't had trouble with any brands. I may be one of the lucky ones who can handle distilled alcohol. I'm wondering if it might just be the alcohol. Sometime having a few drinks will upset the digestive tract even if they are gluten-free.

I have some ideas, they may not be good ones and I mean no disrespect. I could have it all wrong, but here goes.

"...Ds is not on a gluten free diet but we eat alot of the same foods".

That kind of sucks for him. Gluten-free food is mostly terrible. My wife has her own cereals, breads, crackers, cookies, etc. I even make her gluten stuff, get her normal pizzas etc.

"...poor kid can't get through a whole box of cereal all by himself without getting sick of it."

Let him have whatever kinds of regular cereal he wants, several boxes. If you end up throwing some away, no big deal. It's cheaper than gluten-free anyway.

"...I don't want him to be eating sugary cereal or other sugary processed foods all the time."

Regular cereal never killed me or my kids. Tens of millions eat it every day. At least he'll be eating something. And it's not all the time, just breakfast.

"...I don't mind buying nonGF bread but that gets old and isn't very nutritious."

It's very nutritious compared with nothing. Make real toast (not pop-up); butter bread first and then cook only topside in oven toaster or oven broiler. Let him pick out various jams & jellies, or honey & syrup to put on it. Good stuff!

"...I'm not ready to try gluten-free oats yet"

What does that matter; I thought we were worried about his eating enough. Let the kid pick out a variety pack of real instant oatmeal.

Sorry, sounds brutal. My kids are grown so I didn't have to go throgh what you are. But if he doesn't have celiac, why should he have to suffer. Let him be as normal as possible I say.

best regards, lm

I disagree with some of your points. Although ds is not gluten-free, no one *needs* gluten to be healthy. I would also worry about the risks of CC if ds is eating gluten foods. Kids (and adults, too!) are notorious for dropping crumbs all over the place.

Although sugary cereal won't kill the kid, I think the american diet these days has way too much refined sugar. I think ds will be healthier without excess sugar. There have been many studies conducted in recent years about the effects of sugar on children and many behavioral and learning problems disappear when a child is feed a lower sugar, whole grain, high fruit and veggie diet. Don't have time to look any up right now, maybe someone else has some links?

I also disagree that gluten-free foods are mostly terrible. I've found some excellent gluten-free foods. I bake a lot of breads and sweets and my gluten eating friends can't tell the difference. There are a lot of yucky gluten-free foods out there, but if the stuff you're eating is terrible, you should keep looking. There are good gluten-free foods out there. I don't consider the gluten-free diet to be suffering.

I also don't think putting her back on gluten will help her recover from a non-celiac illness. If she does have celiac, putting her back on gluten will completely overload her immune system, and it will be hard for her to get better. If she doesn't have it, well, not eating gluten isn't going to hurt her body's ability to fight the illness. Nobody needs to be eating gluten to have a healthy diet.

I agree with Richard. If the doc means that one of her biopsy sites was positive for celiac and showed villi damage, she's got it.

I was prescribed pain meds just before I went gluten-free because of joint pain. I was also diagnosed with fibromyalgia. Now that I've gone gluten-free, all the fibro symptoms have gone away so I obviously didn't have it, but at the time that was what the pain was like. I am assuming your brother has similar pain. It might be worth it to peruse some fibromyalgia message boards to get a sense of how debilitating and painful it can be. For a few months I took pain killers most days. It really helped me get though the first month or two while my body healed. Now I just have them for the times when I'm accidentally glutened.

If his celiac is bad, he probably will need to eat more calories to avoid malnutrition and keep weight on. I don't think drinking tons of soda is a good way to do it, but his stomach may still be pretty upset to the point where he can't stomach food. Again, when I get glutened, I start the day off with a nice sprite just because it goes down easily. I used to drink a lot of gatorade to keep weight on because I think it's a bit healthier than soda; maybe you could suggest this.

I also had insomnia plus chronic fatigue which is a bad combination. Again, the sleep aids may be a good idea in the short term until he heals.

The thing that sticks out for me is that you don't seem to have very good communication. You are obviously very concerned about your brother and want to help him. I'm guessing he is feeling very overwhelmed. The diet is a lot to figure out in the beginning and if he's still feeling sick it may be more than he can handle. You may be able to help him with calling companies to find "safe" brands, finding recipes for him, cooking for him, etc. I would also suspect depression. This is a major life change and being sick for so long can make you not want to get out of bed even when your body heals enough that you are physically able to. If he's not getting better, he may also have a temporary issue with dairy. That can be very hard to digest until the body heals.

My first line is that I'm allergic to WBRO. For most people, I don't need to go into details about how it's not really an allergy. Allergies they understand. My second line if they ask questions is that I have celiac. I'm self-diagnosed so it's possible I *only* have gluten sensitivity, but again, it just doesn't matter. The symptoms and treatment are the same so I don't bother differentiating.

For a while last summer I was getting symptoms of glutening and couldn't figure out where they were coming from. I soon realized that peanuts give me the same symptoms. I didn't figure this out until 10 months of being gluten-free and 6 months after feeling completely better from going gluten-free. I'd consider other foods. Has your diet changed *at all* in the past few months? The reason why the peanut thing showed up for me when it did was because I moved out of my parents house and started eating peanut butter sandwiches for lunch. I rarely at PB at my parents'.

Lucky you that your story only has two doctors! I think doctor 2 is absolutely correct, but that doctor 1 didn't mean any harm. Most docs aren't well educated on the disease and simply don't realize that if you're not eating gluten the tests will come back negative. Most blood tests will show up positive no matter what you're doing to your body so celiac testing is unique in that regard. The best part of celiac is that once you're diagnosed, most of the damage that has been done will generally be reversed within a year or so. As long as you stay gluten-free, you will be able to be perfectly healthy.

I'm not sure what he'd find in a colonoscopy. Most celiacs get endoscopies (intestine scope) to test for damage (which would also be likely to come back negative for you).

You might want to consider cooking mostly gluten-free for the kids, too. Most meals can be made gluten-free without too much effort. Do you have some favorite meals that you're having trouble finding substitutes for? We can help with that Because I eat pretty much what I used to eat with a few modifications.

For flavor, I add spices to everything. Plain spices are generally gluten-free. And I love Lowry's seasoning salt. Bullseye BBQ sauce is gluten-free. It takes a while to get the hang of which brands are gluten-free, but eventually you'll have your brands that you always go to. I used to buy the cheapest thing off the shelf, now I buy the safest brand off the shelf. Some generic brands I don't trust so I won't buy them.

Both yesterday and today I went to cnn.com and there were articles on celiac! For the first time I felt like this was common and that people know about it. It was awesome. I, of course, emailed all my friends in excitement!

Yesterday it was a video on a mom and son who have celiac (sorry, don't know how to post video links).

Today it wasn't so much about celiac but about the boom in gluten-free food products: Open Original Shared Link

Yes, your children should get tested if you have it. But dietary response is enough to diagnose (in my opinion). If you feel better gluten-free, why make yourself miserable for a few more weeks just to take a blood test? Depending on how open your son is, he may get tested even if you go the dietary response route. A blood test isn't too big a deal so I don't see a problem with them getting the test even if you haven't done it. If your son will be super skeptical an not get tested unless you have a positive from a doctor, then you might want to go with the blood test. You could also ask your doc if you can get in sooner. If it's just a blood test, you may not even have to see your doc. I called my doc asking for a blood test, and I saw the nurse who takes all the blood at the clinic the next morning without even having an appointment with my doc.

You might initially start feeling better if you just cut back on gluten, but it's still doing damage to your body and you will still be at as much risk for complications like cancer, brain fog, depression, osteoporosis, malabsorbtion, etc. And eventually I would think you'd start feeling just as badly again. Your physical symptoms may not be the best indication of how much damage you're doing to your body. Some celiacs are asymptomatic, and they're still doing damage.

It is entirely possible your symptoms are from lactose or casein. You may be temporarily intolerant to lactose while your body heals as well and you'll be able to go back on it in a few months.

Oh, cars is another tricky thing for me! I can never find my car. I moved to Minnesota from Wisconsin last year and the only way I could find my car was by WI plates. I've had MN plates for a week now, and I've had trouble several times finding it.

I have Tivo and I put celiac in as a keyword to look for so I would know if it was ever mentioned on a show. Yesterday, it came up that The View is having a segment on celiac on 3/14. I used to watch The Vew but now I hardly recognize any of the people on it but I think one of them has celiac. Should be interesting to see what it is about. Hopefully, it will be good publicity.

It's Elizabeth Hasselbeck who's got celiac. There was a segment a while back when Budweiser came out with RedBridge on it:

I used to hate eating breakfast food for breakfast when I was a kid. I'd make myself grilled cheese sandwiches or salad or leftovers from the night before like pizza or lasagna. Don't feel you have to feed him breakfast food. And an 8-year-old who wants to eat fruit? You've got yourself a keeper here!

Has anyone heard of prosopagnosia? It's the inability to recognize faces. Here's some info: http://en.wikipedia.org/wiki/Prosopagnosia

I'm starting to wonder if I have a mild case of it. Last night I watched The Departed with some friends. Normally I don't watch drama-type movies and now I know why. I didn't realize until halfway through the movie that Leonardo DeCaprio and Matt Damon were different characters. Both famous people and I can't tell them apart until they end up in the same scene together. At which point I have no hope of understanding the movie. I just felt really sad and out of place when everyone was discussing the movie afterwards, and I have no clue what they're talking about.

This is not the first time this has happened. Movies and TV shows always get me. There are a couple people at work who I cannot keep straight because they have similar body types. I can't tell Chinese gymnasts apart probably because they all have black hair and similar body types.

Just wondering if anyone else has this and if they've officially been diagnosed?

I am actually much less obsessive about food now than when I was pre-gluten-free. I do read every label everytime I eat anything, but I read it once and move on. It's more of a "this is my life this is what I have to do" than an eating disorder type obsession. Part of what helps is that I live alone so my house is gluten-free, I always bring my own food everywhere so I don't have to worry about getting glutened.

My brother's college has a fridge in the back filled with gluten-free food for the celiac students and a microwave for them to use. The also have a make-your-own omlette bar and they'll give me regular eggs if I ask rather than having to use the fake-egg powder. Just depends on the school.

I make up flour mixes in big containers so I don't have to measure out six different kinds of flour each time I bake. That has increased my baking efficiency a lot.

It takes time to find a good doctor. I'd call around some of the doctors in your area and ask if they deal with celiac patients. Their response should give you a good indication of how open they will be to the disease. In my experience, younger doctors have been better. They're not set in their ways yet and tend to be open to alternative diagnoses. While you may not need a doctor to officially diagnose celiac, I prefer to have a doc who is aware of it since I will be seeing her at least once a year. I do not want to have a fight about celiac every time I go in and there are some conditions that are more common in celiacs that I'd like for her to be aware of.

The question is: do you want the tests redone? If so, you need to keep eating gluten or they will most likely come out negative. If you don't want the tests redone, a combination of Enterolab and dietary response is sufficient for diagnosis.

When you do go gluten free, you need to keep in mind that gluten is like a poison/drug to your body. If you have celiac, you're probably addicted to gluten which makes it very hard to give up at first. Cold turkey is probably the best way to go if you want the withdrawal to be over quickly. You should identify what it is that is the most tempting to you. If it's having gluten food around your house, maybe you can get rid of that food. If it's missing a certain food, let us know and we'll help you find a good gluten-free alternative.

My chiropractor asked me about my diet last night and I said gluten-free to which he replied "oh, so you don't eat many carbs, do you?" I told him I eat a ton of carbs - just in the form of rice, corn, potatoes, quinoa, veggies, etc. I'd say I eat just as many carbs as I did before.

I don't think restaurants are required to list anything on their menu. Which stinks because I don't automatically think "oh, cheese, I should ask if that contains wheat" and the servers often don't realize that something has wheat or it slips their mind when they're trying to think of gluten ingredients. I think if you ask and they say no wheat, that's not right, but legally I'm not sure if you have any grounds (I mention this because I saw your other post about FDA regulations). I just read an article about whether restaurants should be required to list ingredients (more in terms of transfats and total calories), and it's the great debate of whether people should take responsibility for what they consume or whether we should tell them straight up that they're eating unhealthy food. Obviously this doesn't apply so much to celiac, but to get ingredients required on menus, you're going to have to convince the people who think others should make their own choices about what they eat rather than having it "forced" upon them.

I find talking to the manager is almost always the best way to go. Of course, some restaurants would rather not take the risk of dealing with food allergies/intolerances and will refuse to serve you. Those are the restaurants I (and all my friends with me) steer clear of. Calling ahead of time can be a good way to get a feel for how the restaurant will react to your diet.

I think celiac only counts as a disability in situations where you would be without access to gluten-free food (which is why it's considered a disability by the military).

Working midnights wouldn't fall under this category. I wonder if you have some other condition that makes it difficult for you to work nights. If you can prove that, then I think you'd have a case.

You might also consider things like chemical sensitivity or electrical sensitivity. Or maybe mold in your house.