kbtoyssni

What age were you diagnosed with celiac's/gluten intolerance?

-23 (I'm now 24).

What were your most common symptoms?

-Fatigue, joint/muscle/bone pain, brain fog, depression, upset stomach

What are your symptoms when you eat gluten now?

-Same as before

Do you consider yourself more sensitive to gluten now that you try to avoid it?

-No, my symptoms seem to be better now. My joints may hurt and I may be slightly brain fogged, but I can still function and go to work, etc.

Did you or your doctor come up with the celiacs/gluten intolerance diagnosis?

-I came up with the dx.

Do you have any other food allergies/intolerances?

-Yes, peanut intolerance. Figured that out about eight months after going gluten-free.

Does anyone else in your family have celiacs/gluten intolerance?

-Yes, my mum. Dx after I was. I suspect her mother had it, too.

Do you consider the world celiac/gluten free friendly?

-Not particularily, but you get used to it. I would love to be able to buy all my food in a mainstreet store. And I would love for foods that are naturally gluten-free to not have gluten randomly added to them. Like corn flakes - why the heck does malt have to be added? I think foods not having as many additives would benefit a lot of people, not just celiacs. I think people would be healthier in general.

Do you think we need better food labelling laws?

Yes (and this goes along with the last question) - I would love for companies to label what their artifical flavors and food starches are made from. It wouldn't be *too* difficult, but it would make a world of difference to someone who reads every label. I'd love to be able to read the label and just KNOW if it's gluten-free rather than having to call the company to confirm... We now have the eight major allergens labeling, but I think celiac is common enough that they should add gluten to the list.

Does the world in your opinion need to be more educated about celiacs and gluten?

-Yes, it's so underdiagnosed that if people are aware of it, it might spare a lot of people suffering. A friend of mine mentioned to me years ago that she had it. I forgot about it until I realized I had problems eating wheat. I never would have thought of celiac if I hadn't been made aware of it years ago.

sorry to go off topic, but how do you make sure your meat is gluten-free? I have boughten my meat at Wal-Mart lately (only place open at 2 am lol), steak, bacon, sausages and how do I tell if they have glutened? I always get the regular plain ones, with no spices or whatever. They seemed gluten-free when I checked the labels, but I am by no means an expert yet. Are they usually?

I've been buying my meat at the local health food store where I buy all my specialty gluten-free food, and the package says gluten-free right on it. I think it's called Applewood or Applegate Farms. I get the sliced deli meat there since they only sell gluten-free meat. I wouldn't ever buy sliced meat from a mainstreet store due to the risk of CC. This store is very gluten-free-friendly - they even sell gluten-free deli sandwiches.

And thank you everyone for the links. It looks like there's a lot of good information out there, so I'll definitely be reading those.

I don't think mine are any whiter, but I wouldn't doubt that it's true. gluten-free seems to fix a lot of problems. And if the person had a lot of heartburn or acid reflux associated with gluten, that could definitely affect the teeth.

I am buying free-range organic meat. I don't think I could eat it otherwise. I don't have a moral problem with it if the animals are treated well.

I started eating it again because someone suggested it might make me feel better and it does. I still feel a little guilty when I eat meat, but the health benefits are definitely obvious. It's the one food that I can honestly say I feel full after. When I don't eat meat, I stop eating because I think I feel full - either because I think I've had enough or my stomach is just done with wanting me to put more food in it. It's a hard feeling to explain, but I think after so many years of my stomach being messed up, I've lost touch with my body's hunger signals and when I eat meat is the only time I feel like those hunger signals are functioning properly.

The part that I'm having the most trouble with is when I go out to eat. Obviously eating meat at a restaurant makes things so much easier, but I know it's not free-range so there's a definite internal struggle going on there.

Sounds like a really tough situation. Sorry you have to deal with this.

One thing that jumped out at me was that he believes his problem is due to meds, not celiac. It sounds like you will need to get an "official" diagnosis for him to fully commit to this. And I completely understand his unwillingness to add another doctor. Even if you did go to a GI and got all the blood work and scopes, you may or may not get a diagnosis. I agree with whoever suggested Enterolab that that might be the best way to go. You'll at least get confirmation of gluten intolerance if that's what it is (which is my mind is just as good as a celiac diagnosis) and you won't have to add another doctor.

I also have to wonder that if he think this is med-related, is he really 100% gluten-free?

The other thing that jumped out at me was the emotional strain this is having on you and your marriage. I think you need to focus on taking care of yourself, too. Maybe even getting a therapist would help.

I wonder if they are also being stubborn about this because they expect you to quit once you have the baby. It would be a pain for them to transfer you for a few months only to have you quit on them. If you are planning on going back to work after the baby, it may help if they are aware of this. But I'm not a lawyer, and I'm not sure of all the legal details so you might want to run this by someone else first.

I'm glad you're feeling better! And if this is what it takes for you to commit to be 100% gluten-free now, then I can't fault you for that. I'm happy that you're never going to cheat again.

I've just been arguing with my insurance over this one. I want to get tested for casein intolerance. They won't pay for something like enterolab and say I have to go to an allergist but it's not an allergy so I can't find an allergist who will do the testing... They're getting another call from me on Monday. I might get the food allergy testing done anyway and do enterolab on my own.

That's kindof what I figured. Maybe I'll do enterlab on my own. The problem is that I've been casein-free for a week, but feeling worse than ever. It might be withdrawal, it might be other food issues. Because eliminating casein means that I'm eating slightly differently. Like I'm eating more meat because I need protein from somewhere. I know you read my other post about digesting meat and how I think that's making me sick so it's hard to know why I'm feeling so bad.

I talk about it all the time, too. Not too much, but just enough so that most people I come in contact with on a daily basic coud define celiac and some of the major symptoms. I don't want to get annoying, but I think it's important that people are aware of the disease. A friend mentioned to me several years ago that she had celiac. I was curious about it so I looked it up at the time and then forgot about it. Years later I went on an elimination diet and realized wheat was a problem. I never would have made the jump to celiac if I hadn't heard about it several years before. And I'm sure I'd still be sick now because my doctors certainly weren't going to make the jump to celiac, either.

Congrats that your daughter is feeling better! It must be such a relief to you.

If the doctor asks you to put her back on gluten, think about what a positive or negative diagnosis would mean to you. A positive would only confirm what you already know. And if you get a negative diagnosis? I'm betting you'll still keep her gluten-free. A negative diagnosis only means that you're lucky she doesn't have that much intestinal damage yet. So no matter what the result she's going to be gluten-free so why would you want to make her sick for another month and delay her healing?

If he is really missing peanut butter, there are alternatives out there for his old favorites. You can buy soynut butter, if soy is one he can tolerate. Also, our school serves sunbutter sandwiches, but I don't know where you can find the butter made from sunflower seeds instead of peanuts.

ETA: You can buy it on Amazon, so I'm sure it is available at a lot of places that sell allergy alternatives. Sunbutter is the consistency of peanut butter, with no peanuts or tree nuts. HTH!

I buy sunbutter at Cub Foods, so it's pretty common. If I eat a scoop of it on its own I can tell a

*slight* taste difference, but you'd never know it wasn't peanut butter if you put it in a sandwich. Soynut butter is ok, but I think it does taste different. It tastes just like soynuts, which makes sense, but I much prefer my sunbutter.

I hope you figure out your son's allergies soon. Good luck.

If you don't know if a food is gluten-free call the company. Yes, it's a pain, but it's the only way you can know for sure. Or ask here - most likely someone else has called before

A lot of mainstream restaurants will have gluten-free menus if you ask for them. They're just not as well-known as the Outback's gluten-free menu. And even places without gluten-free menus can make things gluten-free. Think plain - most meat, potato, veggies can be made gluten-free. Mexican is great because of the corn-tortilla base. Thai food is great because of the rice-noodle base. And I'm finding Indian food to be pretty gluten-free friendly, too. Don't be afraid to ask for substitutes. Rice or potato can be substituted for noodles, corn tortillas for wheat. Sometimes I don't even look at the menu. I'll just say I want a salad WITHOUT these ingredients and they make me something. Or plain chicken and veggies. If you call the chef before you go he/she will often get creative and make you something special.

Welcome to the forum! Funny you should mention dairy and sugar. When I was younger (age 4-8ish) sugar and dairy made me extrememly hyper. I'm so lucky my mum made the effort to do an elimination diet or I'm sure I would have been a ritalin-child. I wasn't diagnosed with celiac until age 23. Regardless of the test results, you should try him on a gluten free diet to see if things get better. With younger children, conventional testing isn't very accurate because they're just not old enough to have a lot of intestinal damage yet (which is a good thing Keeping a food diary might be very helpful since you're probably dealing with multiple intolerances here. And it will be a good thing to show him when he's a teenager if you're trying to embarass him! I found my mum's a few years ago and was quite embarrassed by my behavioral report!

Caramel coloring is gluten-free. Seriously, the Kahlua people are not lying -- it's gluten-free, even with the caramel coloring. Sodas with caramel coloring are gluten-free. And if a gravy packet specifically says gluten-free, it's gluten-free. They're not going to label it gluten-free when it's not.

richard

Is this all caramel coloring in the USA is gluten-free or all caramel coloring anywhere? I thought it was one of those ingredients you have to call and double check on or is it now like maltodextrin where FDA regulations require it to be gluten-free? Thanks!

At first I thought there's no way they can still be high if you're gluten-free. But then I thought about things like mono. I had mono seven years ago and blood tests would still show those anti-bodies. The difference is that mono is caused by a virus and therefore you will always have that virus (as opposed to bacterial infections which go away when the bacteria die), but you feel better because your body builds up antibodies. Celiac isn't a virus, though, so I don't think this same principle applies. Maybe it mimics a virus in some ways, though? I have no idea.

I've been vegetarian for five years and have recently started eating some meat because I've read that a lot of people feel better when they do. Well, it turns out I do, too, at least most of the time. I have no problems eating chicken or turkey. I have eaten pork a few times without a problem, but the other day I had ham and had awful stomach cramps/gas/D, etc. I had ground beef a few weeks ago and threw up after it. I know you stop making the meat-digesting enzymes after being veggie for a while, do you think this could be the problem? Is pork/beef higher in whatever enzyme I can't digest than chicken and turkey? How long does it take for your body to start producing these enzymes again?

A side note because I know all you dilegent gluten-finding people will ask, lol I am 99.9% certain this wasn't from gluten. Both times I ate this stuff at my gluten-free home (I live alone) and I got meat that said gluten-free on the package.

I would like to get tested for casein intolerance. I know I can go through Enterolab and it's only $100 so I'd do that if I had to, but out of principle I think my health insurance should pay for this. I called them up and they will not pay for Enterolab. They said I need to go to an allergist or internist. The problem is that I can't find an alergist that will test for casein intolerance (probably because it's not an allergy!) I've explained this to my insurance and have called about five allergists in the area just to humor them. So the question is - are there any allergists that will test for this? Or do I need to call my insurance back and tell them they are incompetent? I'm in the Minneapolis area if that helps. Can they do a blood test for this or is it just the stool test?

I have been casein-free for a week now just to try it out and I'm still feeling yucky. I'm not sure that casein is the problem or if it's the only problem so I'd like the testing just to help me figure out faster what direction to take in trying to determine additional intolerances.

Looking back at my past symptoms, I should have been diagnosed around age 18, too. And boy, do I wish I had been. I'm sure it would have been much harder for me to go gluten-free at that time because my symptoms were so mild that it would have been hard to see the benefit. But, finally, at age 23, my symptoms got so bad that I had to drop out of school. I was too exhausted to make it to class, too brain fogged to think, my joints hurt too much to get up the stairs. Going gluten-free after that was EASY - there is such a clear correlation between quality of life and being gluten-free in my mind that I am NEVER EVER EVER tempted to cheat.

Honestly, I wasted a year of my life being super sick and about ten years being "sortof" sick. I'd hate for you to waste the next ten years of your life, too.

Well I guess you don't have to wonder if gluten is an issue now! I hope you feel better soon. It usually takes me two weeks to feel better after a glutening. During those two weeks everything upsets my stomach, and it looks like that's happening to you, too.

I accidently consumed gluten once and had no reaction. I was sooo thankful that I didn't get sick. Maybe it's because I felt so badly about not reading the label more carefully that my body decided I'd learned my lesson and wouldn't make me sick as well. You probably won't be so lucky the second time you do this

What? The bite-sized ones have gluten???

Not that it matters anymore... I have a peanut intolerance as well so I can't eat Snickers. So yes, Snickers give me problems because of that.

It sounds like you are doing the right thing in trying to keep your son safe. Keep doing what you're doing; he needs you to do it. You may have to stop talking to your family about this. If you're going to get comments like "don't call the butcher - you'll embarrass us" it might be best for your mental health to not tell them you're calling the butcher.

It's too bad that the rest of the family isn't being supportive. For some people the concept of food intolerances is completely foreign. "What do you mean bread makes you sick??? I love bread and my life would be ruined without it!!!" What they don't realize is that your son's life is being ruined WITH it. Maybe after a while they'll see how "easy" it becomes for you and how much healthier your son is.

You may want to alter your family interactions. Invite them over to your house more for home-cooked gluten-free dinner. Suggest meeting at the local park for a walk or have everyone bring their own picnic lunch. Or movie or game night instead of going out to eat. But do not let them guilt you into feeling badly about what you're doing. You are doing exactly what you need to.

The thing that stood out to me was the cravings for gluten-filled food. If you have celiac, gluten acts as a poison to your body and people will often have "addictions" to it. I read somewhere that gluten is like morphine to celiacs in terms of the addictive properties. I also used to crave gluten foods and noticed after about eight months that the cravings are gone!

I also had depression and that's gone now, too. That's the symptom I hate most when I get glutened.

I would have been disappointed with a negative result, too. It's not the you WANT to have celiac, but you do want to know what's wrong and get back on track to good health again. A negative result doesn't necessarily mean you don't have it. It just means that if you do have it, you're lucky and don't have much intestinal damage yet. Were you gluten-free when you got the biopsy done? If you were your intestines had some time to heal and probably wouldn't show much damage.

Funny that you mention Nexium possibly causing your somach pain. My doctor gave me some a number of years ago to help with my chronic stomach issues and it only make my stomach feel worse. Looking back, I wonder if Nexium has gluten and was really just exaserbating the celiac.

I have not had Enterolab testing, but everyone around here seems to have had really good results with it. It won't tell you if you have celiac - it will only tell you if your gluten sensitive - but the two are practically the same. They have the same treatment.