kbtoyssni

It is frustrating that the doc insisted it's not celiac, but I'd agree that a endoscopy isn't a bad idea. What's the age you're supposed to start getting those anyway? Since it seems suspicious that your husband has it, I don't see a problem with his sisters getting tested. Maybe they don't have it and they go on with their lives. Maybe they do and you can save them years of misery.

I think I'm in the minority, but I eat out more post-diagnosis than I did pre-diagnosis. I'm sure part of that is my symptoms of glutening aren't that bad so if someone does screw up, I'm at least still mostly functional. I have places I trust that I go to a lot, and I've gotten good at asking for things that will be safe and knowing what ingredients to question. It's risky, but I also want to live my life. I live alone in a completely gluten-free house, so eating out is my only risky behavior.

Yes, it is very possible that he has it even without any family history. Many times family members will have it but not be diagnosed. Or they will carry the genes and never develop celiac.

The GI will not be able to diagnose via traditional tests (blood and scope) if he's not eating gluten. You have to be eating the equivalent of several slices of bread a day for 3-6 months to have hope of testing positive. But traditional tests aren't that accurate, especially in young children. He just isn't old enough to have enough damage to test positive (which is a good thing!)

As for needing a positive result - I don't see why you need it. A positive dietary response is a perfectly reasonable way to diagnose, and it sounds like you're going to keep him gluten-free no matter what the tests say. Some people need a doctor's diagnosis to stay on a strictly gluten-free diet. Some want it so it's easier to get a doctor's note for school-related things, but your pediatrician sounds like she'd be ok diagnosing. There's the other theory that you don't want a diagnosis on his medical records so he won't have problems with health insurance in the future. If you'd like to do some testing, enterolab is one way to do it. You send in his stool and they can diagnose gluten intolerance.

How strict do you have to be on a gluten free diet?

-Very strict. Like no cheating EVER. I think everyone else covered this. I know this seems very, very overwhelming at first, but it will get better.

So far the gluten free foods I have bought don

I looked at the research studies on this site about autism and celiac. Here's one whose conclusion is: "when the intestinal wall is not healthy and the brain is vulnerable, the brain is affected directly". To use this argument, you would be making the assumption that someone without celiac is still being affected by gluten and casein, which I think most here would agree with but I don't have any medical studies showing that. Maybe just the number of undiagnosed celiacs would mean a lot of autistic people are celiac and don't know it, but again, that doesn't cover non-celiac autistics.

https://www.celiac.com/st_prod.html?p_prodi...-06107572945.56

And here's another that says there's no link between celiac and autism, but this is more of if you have autism you aren't any more likely to have celiac and vice versa, but the issue you are arguing is not whether people have both diseases, but whether Gluten-free Casein-free helps for autism regardless of whether a person has celiac.

If you could find some studies about gluten's affect on the brain that might help. Especially if they study celiacs and non-celiacs.

But autism being genetic and can't be changed with diet??? Celiac is genetic and can be changed with diet so I don't think that logic holds.

I also fail to see how she has proved that Gluten-free Casein-free is harmful for autistics. I don't think eating Gluten-free Casein-free is harmful for anyone. Anyone can have a perfectly healthy diet that does not include gluten and casein - there's no nutrients in these two items that you can't get from some other food.

I would ask for her medical study references.

They don't have Chebe here either, but a warning about Kinnickinnik...they smell bad. I would call it a stench. Maybe I'm the only one, but I'm sure glad I don't have to eat them. I made Ty a bunwich one time, and just about choked on the smell of them. I think he ate it all. I know they come in a package of four for around $6 or $7 and he only ate three. We threw the rest out. Check with Kinnickinnik eating friends to see what they think of the smell. It's entirely possible that I'm super senstive to smell. I can't be in the room if someones making Kraft Dinner - that horrible fake cheese smell. Blech!

Meanwhile, we are still looking for a decent hamburger bun (that doesn't smell bad) that is either reasonably priced or easy to bake AND tastes good.

I didn't think they smelled bad! I did think they were crumbly and if you put any toppings on your burger the bun will fall apart. I'd rather just go without.

Awesome! Thanks! I have not had "real" seasoned taccos in years!

Old El Paso taco seasoning is gluten-free as well.

I'm not sure if gluten is still present in smoke if you burn it. Ironically, there have been studies showing smoking can decrease stomach problems and hold off the onset of celiac. I'd assume second hand smoke would have the same effects. I'd also lean more towards this being from breathing in all those chemicals all night.

Margaritas are usually ok, especially at mexican places where they mix their own. I was at one place that added beer to theirs, though, so now I always ask about that. I get some strange looks because no one adds beer to margaritas! Somehow I stumbled on the only place in the country that does it.

If you want to make them at home, here's a delicious recipe that doesn't use a mix. I get asked for the recipe every time I make these.

-4 shots tequila

-2 shots triple sec

-1 can frozen limade

-some frozen strawberries

-ice

Blend it up and enjoy!

I don't mind the red rice, black rice and pecan kind. I buy mine frozen, too, so I have to toast them. They are a very dense bread. Some loaves crumble and some are just fine.

I rarely eat bread, but if I were going to eat it frequently I'd make my own.

I'm not a fan of fasting because of what it does to your metabolism. Your metabolism will decrease if you fast and can often take up to six months to recover (depending on the person and the length of the fast). I wish I had some research to refer to here.

However, it seems like you want to do this to get your digestive system back on track and working properly again. There has to be something you know is safe for you to eat. I'd recommend avoiding the top eight allergens: Milk, Eggs, Peanuts, Tree nuts (such as almonds, cashews, walnuts), Fish (such as bass, cod, flounder), shellfish (such as crab, lobster, shrimp), Soy, Wheat. You might also want to add casein and maybe nightshades to the list. This way you'd be able to give the digestive system a rest and still get enough calories to keep the metabolism up.

The "stereotypical" celiac is underweight due to malnourishment, but many celiacs are actually overweight. One theory is that if you're not absorbing enough food, your body is in starvation mode so your metabolism plummets and you hold on to everything.

Blood tests commonly give false negatives.

And I also think it's common for one or two gluten foods to make celiacs sick while other ones don't appear to cause symptoms. Just like your daughter and the sub sandwiches, I had the same thing with pizza. I could eat several slices of bread and feel fine but pizza always gave me stomach problems.

Since you are on a tight budget, I'd recommend just trying the diet rather than pursuing more medical testing.

Gosh, that would grate on my nerves so much! You're obviously not going to be able to change his attitudes towards food or make him understand celiac, but you did get him to stop feeding your dog which indicates he's trainable Now, you just have to figure out how to keep his gluten away from you. Establishing a gluten-free Zone around your desk is a good idea. And if the kitchen is that bad, I see no reason why you shouldn't have your own microwave and mini-fridge in your own area. And I love the headphones idea. I also wear headphones with no music sometimes just to help block everything out. In the end, you've got to find someway to transfer this negative energy towards him into a realization that it's not your problem if he's eating himself to death so you don't give yourself an ulcer over this.

Thank you so much for the responses. From these and reading other threads on this board I have learned a ton. I think I was making it more difficult than it is. I noticed while shopping yesterday that a ton of Walmart brand stuff has gluten free on the label. From looking at everything I think I should be able to buy my regular stuff with a few substitutions like the pancake mix, bread and pasta but I can successfully replace Jasmine rice for any pasta because I have always loved that rice. I didn't realize gluton was in so much stuff, even like the chapstick and shampoos. Do all of you have reactions if you use shampoos and stuff like that with gluton? I think I do when I think about it. Along with classic Celiac disease symptoms I have had many, many others. I have actually been on a search for why I am so sick for years. I've been trying gluten free for only 2 days and I'm hoping to feel better soon. What shampoos and soap do you use? Did all of you have to replace toasters and utensils?

Jamie

Yes, you absolutely have to replace your toaster and wooden spoons/cutting boards and probably your collender and other strainers. Other items can be a judgment call depending on how scratched up they are.

I don't really want the law hurried up, either, for the reasons that mommyagain stated. In the end, I only trust myself to make the decisions about what I will and will not eat. I do not want to put that trust in large corporations and with this new law I feel like I'm being forced to trust them more which I am not happy about.

Even if a products says gluten-free, I still read the label. Someone on her reported finding a product labeled gluten-free the other day that had oats in it! So you still have to check.

I think some companies label both gluten-free/wheat-free because there are people who are just allergic to wheat and can eat foods with barely, rye and oats. They maybe just look for a wheat-free label and don't think about gluten-free also being wheat-free.

Here's some lists of safe and not-safe foods: https://www.celiac.com/st_main.html?p_catid...-49107278781.c7

If you want to make your own bread, I'd recommend the recipes in "The Gluten Free Gourmet" cookbook. They're all really good and cheaper than store bought. But be prepared for a few failed bread-making experiments! You can use the failures for breadcrumbs.

The first few shopping trips can be very hard. But it will get much easier. And to reduce sticker shock, I'd try to avoid buying a lot of the gluten-free substitutes. Think about what you used to eat and be creative with replacement foods you can find in a regular grocery store. I often get asked "where do you shop?" when I tell people I have celiac. My reply is always that I shop at the same place they do - the local grocery store. I rarely go anywhere else. If you know your brands, it's not too hard to find mainstream food that's gluten-free. Do some searching on this site for safe brands. NoGluGirl posts a good list so you can search her posts.

Yeah, I'm skeptical. I'd love to see more information on how they determined she no longer has celiac. I would imagine if they took care of her other health problems, her immune system would be more tolerant to gluten for a while so I'm not believing this right away.

Love,

That annoying person who tells you "oh, I used to have celiac when I was a kid, too!"

In Canada, we can claim our gluten-free food on our taxes. A poster here said this was not the case in the U.S., but I *just* saw an article that said gluten-free food CAN be used as a tax credit in the U.S. I will try and find that article for you. Have you checked with the government to make sure it's NOT considered a disability? The diet IS a medical necessity if you have Celiac Disease. I am pretty sure that even people here on welfare get money for the diet.

P.S. Here is a link to a posting that mentions gluten-free deductions...apparently it's a little more complex in the U.S. than Canada, but hey, it's better than nothing:

Open Original Shared Link

The article talks about you only being able to claim the difference between the cost of a gluten-free item versus a gluten item. I think there's also something about medical expenses having to take up a certain percentage of your income to claim it, too. I don't know the specifics, but I know it's a fairly high percentage which excludes most people from claiming. Since you have a lower income and lots of kids, though, you might qualify.

I'd disagree, too. By the time food waste has made it through the stomach and intestines into the colon, it's just waste. Even if there were some nutrients left, the colon's job isn't to absorb nutrients so I doubt it's going to be doing much of that. I see it more as you've got waste products sitting around in your body for longer - and that can't be a good thing!

Your story of how you felt better gives me hope. Thanks. Would you say you feel uh huh, okay, good, great, of fabulous now?

Most days I feel fabulous, with the occasional day of good or great. I do seem to have a more sensitive stomach than most people I know (or maybe I'm just aware of the fact that upset stomachs aren't normal and there should be a solution), but it's not too bad. I'm also lucky that my gluten reactions aren't *too* bad. I know when I've been glutened, but I'm still functional. My biggest problem is that when I do get glutened I pick up every illness going around (like right now I have Whooping Cough!) I suppose I used to feel this good way back in the day, but I was too young to even remember those times so this is certainly the most healthy I can ever remember being.

No, Ezra isn't currently gluten-free. He was about 99% gluten-free during the summer, because his brother is 100% gluten-free, and they ate the same things. Every once in awhile he might get a pack of crackers (Ezra.) But then in August, he started pre-school where he eats breakfast, lunch, and a snack. I've looked at the menus, of course, and there is gluten at every meal. I don't know if gluten is the culprit, but Ezra has been sick ever since he started school.

Unfortunately, if I wanted to put Ezra on a gluten-free trial diet, I'd have to pull him out of school. His preschool is a state-funded program, and to have him on any special diet, anything different than the normal menu, (even if I provide all the food) I have to have a letter from our doctor ordering it, and why. I guess I'll have to take it day by day, and continue to watch him carefully.

Ezra seems to take after me a lot... I had pneumonia several times as a child, and a few times as an adult as well. The last time I had it was about two years ago, and it was very stubborn. It took a month of alternating antibiotics to get rid of it.

-Sarah

How is your other son's doctor with celiac? Would he be willing to write a note to the school saying he wants Ezra to try a gluten-free diet based solely on him being sick as soon as he starts consuming gluten? Seems like too much of a coincidence to me, and traditional medical testing isn't going to be easy at this point. That really is too bad that the school won't even let you send his food.

Celiac is real to me because as soon as I cut out gluten, I got my life back. I was bedridden before and couldn't concentrate and was depressed and in general a mess. And now I'm living my life and have more energy than I've had in years. I'm one of the lucky ones that went gluten-free and felt better immediately which I think is why I'm so positive about this whole thing. I'm lucky because I don't have any other food intolerances, except peanuts which wasn't too hard to figure out. One problem is that many celiacs have so many other health issues due to years of non-diagnosis that just going gluten-free doesn't always make you 100% better. After two months, it might be time to take another look at everything you're eating and all your pet food/pots/pans/personal care products to make sure they're gluten-free. After another month or two I think you have to keep looking for more answers in addition to the gluten. I wish I could be more helpful here.

From what I have read it sounds like grains and gluten are the same(??) So if I stop eating grains will it change the test results, if he decides to give it to me?? Also, I can't figure out what exactly has gluten in it. Is there a list someone has made of common foods you can eat? Will I ever be able to eat out again? What about cereal, are any of the common brands ok to eat? I am very confused.

Thank you

Gluten grains are a subset of all grains. You can still eat rice, corn, quinoa, and many other grains.

If you stop eating gluten and then get a blood test or scope for celiac, it will likely be negative because your body will stop producing antibodies and start healing. So if you ARE going to get tested, keeping eating gluten.

Check out the FAQ section on here - there's a list of things you can and cannot eat.

Yes, you will be able to eat out again. Many chain restaurants now have gluten-free menus and you can find gluten-free food at most other restaurants if you know what to ask for. It may take a few months before you feel comfortable eating out again, but you will be able to. Thai (rice based noodles), mexican (corn based tortillas) and Indian food are especially good. And "American" style can be ok if you get grilled chicken and veggies.

I know there's one or two mainstream cereals that are ok - hopefully someone else will post about those. Mainstream Rice Krispies and Corn Flakes are NOT ok - the contain barely malt.

For now I'd start reading posts. You'll find a ton of info about which brands are safe and which aren't. And feel free to ask anything - we're here to help. Ok, I have to run so that's it for now!

Could it be something other than gluten? What about chemical exposure or mold?

Also, employers are starting to not charge everyone the same based on health. Smoking, obesity, cholesterol levels, blood glucose levels, and blood pressure levels are all on the table as items for which to charge employees more if they don't keep them under control. And it appears to be perfectly legal. Open Original Shared Link

My company used to reimburse us if we were a non-smoker and if we took a health quiz every year. And reimburse for gym club memberships. It makes a ton of sense to do it that way. Then my company got bought out and all those nice benefits went away.

But, you can fight it. I had a friend (a bodybuilder) who got a letter from the insurace company saying that his health insurance cost was going to increase because his BMI put him in the "obese" category. He sent back a picture of himself all flexed out, with a letter from his doctor showing results of a body fat analysis (less than 5%!). They never bothered him again

This is the one problem with the BMI system. People who are very physically fit will often have a BMI that is much higher than it should be because muscle weights so much. There is a BMI formula tailored for athletes, but I doubt any insurance company uses it.