kbtoyssni

I think most would be genuinely concerned about your health. It's an awkward and sensitive topic to bring up. I would reply something along the lines of "no, but I do have other serious medical conditions that affect my weight, and I am conscious of (or working towards) my health".

For the people who are joking around - that makes me mad. You don't joke about a serious mental illness. Do they think making fun of you would help things if you were anorexic???

Some people like to do a followup visit to test their antibody levels. This can show how compliant you're being with the diet, especially when you don't have symptoms to "remind" you when you mess up! But I wouldn't do that for a year or so. Unless you're still having symptoms or want to ask a lot of questions, I don't see the need for a follow up.

When I bake, I bake for him with gluten flours & I bake for myself with my gluten free flours. The stuff that he likes baked & the stuff that I liked baked get baked in different pans all of the time (he likes cookies & I like cakes/cupcakes/muffins/quick breads), so CC in baking isn't a HUGE concern for me.

I am cringing a little bit at the thought of trying to keep yourself safe in a kitchen that has wheat flour in it. Especially since celiac is a progressive disease - you may not test positive now, but if you are celiac and continue to damage your intestines this could be very damaging to your health.

When you are part of a family, it's not about the individual. It's a give-and-take, creating a safe space for the group as a whole. Your need to be strictly gluten-free carries much more weight than another family member's want to eat gluten bread. Having a gluten-free house may be mildly inconvenient to those family member who don't need to be gluten-free, but having a gluten-free house to keep mom healthy is the overall best decision for the group.

Another way to get in faster is to have your referring doc call the specialist and ask for an appointment for you. They somehow manage to find time to slot you in if a doctor's asking for the appointment!

Or you can call about cancellations every morning, but that gets old...

I agree with everyone else on the flour - if I had a shared household, flour would be one of the few things I would refuse to have in my house.

I have some celephon pans, and I would not be concerned about continuing to use them if they'd had a good scrub. Do you have the kind that are very heavy-duty with no coating? Mine are almost like stainless steel in that they won't scratch and are easy to clean. If that's the type you have, I think you'd be find.

Lactase, the stuff that digests lactose, is produced by the tips of your villi so if you have a lot of villi damage, lactose digestion will be difficult.

Casein, the protein in dairy, and soy tend to be additional intolerances that celiacs get. Not sure of the exact workings, but I'm wondering if once some bodies starts reacting to the gluten protein, they might get mixed up and start reacting to additional proteins like casein and soy.

So there are different reasons for cutting out dairy and soy: dairy temporarily while you're healing or dairy and soy as a possibility for why you're not feeling better on a gluten-free diet. Whether or not you keep having symptoms depends on the person. I think temporarily cutting out (or at least cutting back) on dairy seems like a good idea until you *know* you'll be able to produce more lactase. That said, I did not cut out dairy. I did not have problems with it, but I probably didn't have as much intestinal damage as some. I don't think still eating dairy will prevent healing (if you're just the temporarily lactose-intolerant type), but it could still give you an upset stomach.

I've been having the same problem with crashing and getting hungry on rides - I'm going to whip up a batch of pancakes for PB&B pancake sandwiches. This is the trouble with getting in shape - when I could only do 10-15 miles food wasn't an issue! Do any of you bring Gatorade with you instead of water? I was thinking of trying that. I'm in Minnesota where it's generally hot and humid.

I'm guessing most non-gluten-free 11-year-olds don't realize the severity of the disease. After all, how many times have we heard from grown-up friends and family "one little bite won't hurt". And she might see your daughter eating (gluten-free) cookies and think that a bit of cookie is ok. Or she may have forgotten that cookies have gluten - it's easy to forget if you don't do this every day. I doubt her friend was purposely or maliciously trying to make her eat gluten, sounds like she was just trying to be nice and share her yummy treat. I'd let it slide. In the end, it's really up to your daughter to know her diet.

I use gluten free personal care products. You are correct that you have to ingest it to react (although some do react from it being on the skin, mostly those with DH), but I think it's just too risky. I'm constantly fidgeting with my hair, leaning my face on my hands, etc. I don't see how I could possibly not accidentally ingest some. And taking a shower - I don't get shampoo in my mouth often, but it might happen once or twice a year and that's one or two glutenings I can easily avoid. I have made the personal decision to not have any gluten in my home so I never have to worry about CC in my personal life. I figure the more I partake in "risky" behaviors, the more likely I am to get glutened, and I like to save up my risky behaviors for eating out. There are plenty of gluten-free personal care products out there, so it's not at all inconvenience for me.

i could have written some of these replies my celiac test didn't come back with anything thou. can gluten just make some angry even if you aren't celiac? i snap sometimes after eating gluten. for a few days at least

Yes, you could be non-celiac gluten intolerant or a celiac who doesn't have enough damage to test positive yet. If you're noticing behavioral changes relating to gluten, it sounds like you have some issue with gluten.

How long has this been happening? I just started ramping up on biking (from doing nothing for six months due to illness to now doing 30miles at a time). My muscles and joints hurt and I was exhausted and hungry all the time. I ice my knees or other joints that tend to bother me as soon as I get home. I stretch to loosen my muscles. I take a bath with bath salts right after getting back which seems to help. I eat more potassium (bananas) and protein. It's been working pretty well.

I'm just wondering if this is a recent thing that's occurring because you're pushing yourself more now or if this has been going on for a long time.

I have had Celiac's since I was 6 years old. I have always vomited and still do. It is more severe when I have been religiously gluten free, often eating a 2 crackers with gluten will stop it, it is the increased acid in the stomach according to my GI specialist and he is trying to reduce it through medication. I am sorry to say it won't get better but may get worse the longer she is totally gluten free.

So is your doctor saying that gluten is basic and thus increases the Ph of the stomach? I don't really understand this. And why would other grains not have the same effect?

This reminds me of my months 9-15 of being gluten-free. I started feeling sick again and occasionally throwing up. I eventually cut out peanuts which helped, and the rest of my nausea went away on its own. Something changed, but I don't know what. I'm guessing there was CC somewhere that I didn't realize? It could be that I was still healing, but that seems unlikely since I felt fine up until that point.

The doc I have now had a questionnaire I made him fill out before I would see him. The first question was, "What is Celiac and how do you get it?" He passed with flying colours and that's why I still see him to this day.

I love this! I might do this myself since there's a possibility I might have to change doctors soon (due to moving, not to incompetence, my current doc is very celiac-aware so I hate to give her up).

So how is she diagnosed with celiac? Are you doing a self-diagnosis due to her spelt reaction? Spelt is a distant/ancient form of wheat that is usually ok for wheat-allergic people, but maybe she is allergic to both. Does she have problems with rye or barley?

A wheat allergy has nothing to do with celiac/gluten intolerance. They are different reactions. Your daughter is obviously allergic; she may also be celiac or gluten intolerant.

Yes, everyone has celiac the same way. If you've been diagnosed, you've got it. We all have different symptoms, but we all have to be 100% gluten-free. Sounds like your immediate symptoms aren't that bad, but you're still doing a lot of damage and this will eventually lead to other autoimmune diseases, cancer, neurological symptoms, etc. You don't want that to happen.

Not sure what tests your doctor does, but many of us have negative blood work. It's not a very good indicator of whether you have issues with gluten. And you have no idea if your numbers are higher than they should be due to CC if you just go on "positive" or "negative" blood work.

You need to talk to the cafeteria staff about whether your salad might have CC. If there's even a chance, don't eat it! Bring your own lunch, eat something else. It's not worth it!

how about, "You don't have Celiac, that's a sexually transmitted disease and you said you've only been with one person...your husband." WOW! RUNNNNN!!!!!

Really!!???!! Your doctor said that??? I think this one wins my "worst/stupidest things a doc has said" contest!

Also, how was she diagnosed? If it's a self-diagnosis, it could be that she's got some other issue causing gluten intolerance like Lyme disease.

Is she around chemicals or people wearing perfume or places with new carpeting? Chemicals used to make me throw up all the time. They don't have to be strong chemicals, either. The place that made me most sick was my lab in grad school, and there was just a slight not-quite-right smell about it.

Oh, woah, I totally missed the part about her being gluten-free for 1-1/2 years already! Those are not normal symptoms for people on a gluten-free diet! I'd say she's either not completely gluten-free (have you checked pet food, personal care products, CC at home, "risky" foods like Cheetos/Doritos, going out to eat a lot, etc?) or she's got other food intolerances like casein (protein in dairy) or soy. Peanuts used to make me throw up, too.

I'd also be VERY concerned about the daily laxative use. You do that for too long and eventually your body "forgets" how to go on its own. She may already be at that point which is why she still has to take them everyday. I'd talk to her doctor about the best way to wean her off of them.

How old is your daughter?

I'm nervous about buying deli meat, is there a safe way to do it? Do you buy the pre-packaged stuff or ask the store to use a different slicer? Sorry, I'm still learning.

I should have been more specific. I only buy the prepacked stuff - Hormel (labeled gluten-free) or Oscar Meyer (owned by Kraft), etc. I only buy the deli sliced stuff at my gluten-free store where all their meat is gluten-free.

Pasta salad or egg salad or tuna salad is good, too. I eat egg and tuna salad on corn tortillas or lettuce wraps or just scoop it with corn chips.

I used to throw up. I haven't recently, though. Everyone's symptoms are so different that I'm not surprised that the small group of celiacs you talked to didn't have the same symptoms as your daughter.

Crackers or corn chips topped with cheese, deli meat, tomato, lettuce. Spring rolls. Cake. String cheese.

I don't get it. What the heck does he think would cause blunted villi if it's not celiac??? You could request your films and take them to a different GI for interpretation. But I'd just go gluten-free if I were you. Celiac can also cause depression - hopefully that will go away after a while of being gluten-free.

Seems reasonable to keep your son gluten-free for at least a year. You've got a kid who's genetically predispositioned to have celiac. He's doing a lot of growing and developing in his first few years; if he were one of those kids who would develop active celiac soon after introducing gluten, seems like the developing years would be one of the worst times for a kid to not be absorbing nutrients properly, etc. Wait a few years and the potential health consequences could be lessened.