kbtoyssni

I'd say this is entirely possible. Although your husband doesn't have it, he may still carry the gene for it which would make your kids very likely to develop it.

Yep, this definitely happens to me. I always assume it MUST be food related so I try to analyze my diet but can never come up with anything. I just sent away for enterolab casein testing because I thought that might be a problem but now I feel fine so I don't know. Maybe it's just because I was tired one day or stressed out or I caught a virus or something. I have to always remind myself that non-celiacs have days when they don't feel 100%, too, so if it's just a day or two I probably shouldn't worry. If it lasts much longer it's worth thinking about but a few days is probably nothing. I used to ignore my physical symptoms all the time but since my diagnosis and realization that so many of my health problems are related to gluten, I refuse to settle for feeling anything less than 100%. I've wasted too much of my life not feeling well.

I got a flu shot right away last year because I was still recovering after being diagnosed for about six weeks. My immune system was well enough to handle the flu shot but probably wouldn't have been ok with the flu. Plus the flu was what triggered my celiac the year before so there was no way I was going without a flu shot again. Lisa - your doctor must think that your immune system is still too weak to even handle the flu shot.

If it were me, I would not make any gluten food. If your husband would like gluten food, he should be able to make it himself in his own gluten corner of the kitchen. A lot of foods are naturally gluten-free or can easily be made gluten-free. For things like bagels, I don't see why your husband can't cut his own. When I go home to my parents' house and make lunch for the family, I refuse to touch the gluten bread and my dad is perfectly ok with making that part of the meal himself. I would think about the risk of being glutened versus the ease/difficulty of making gluten-free food and not touching gluten foods. For me it's an easy decision.

This diet is a major life change. It takes a long time to get the hang of it ,and it's perfectly normal to mourn for what you can no longer have. It sounds like you're making a lot of gluten food still. I'd recommend making only gluten-free if you can because I can only imagine how hard it is to make delicious smelling and looking food and not be able to have any of it. Most things can be adapted to gluten-free without much difference in taste. Someone already mentioned LaChoy soy sauce which is gluten-free, egg rolls can be made with rice paper. If you want pizza, try Glutino brand. I had one the other day and it was delicious. I've been gluten-free for 14 months now and what I eat tastes good to me and I no longer comparing the taste to my old gluten versions. gluten-free is normal for me. And I refuse to let gluten-free get in the way of me eating what I want to eat so if there's something I want, I find myself a gluten-free alternative.

What has really helped me deal with everything is that I was so sick pre-gluten-free. Being gluten-free is what has given me my life back - everyday I am reminded of how lucky I am when I am able to get out of bed, go to work, go to class, workout. I am also surrounded by very supportive people and when I was living at home my family was willing to pretty much go gluten-free with me.

You're definitely seeing results! Congrats! I also had positive results within a few days. I had a few setbacks and it was probably 6-9 months before I was 100% again, but the immediate results made it so much easier to continue with the diet. From your positive dietary response, I'd say your son definitely has celiac disease.

This is a huge life change so being depressed is completely understandable, especially if you don't have supportive people around you. Do you haev any friends who are supportive? Maybe you need to start hanging out with them more. Have you looked for a support group in your area?

It sounds like restaurants and eating at places like you MIL's are a problem. I now see going out to eat as a social thing, not a "I'm hungry, let's eat" thing. So I bring my own food all the time. I don't want to miss out on hanging out with friends, but I'm not going to put my health on the line to do so. I'll also call a restaurant before I go and talk to the chef about what I can eat. You're still pretty new to this, so it might be easier to bring your own food until you get better at picking out what has gluten. I didn't go to restaurants until about nine months after I was diagnosed and it takes some practice to get good at choosing meals.

I have been vegetarian for five years so here are some meat free, gluten-free food ideas. For lunches instead of bread I eat baked potatoes with cheese and salsa, corn tortillas with salad stuff on them, rice with cheese and salsa, rice cakes with peanut butter. I also bring string cheese, apples, mini-Dove chocolates, milk, hot chocolate.

At home I'll eat eggs (scrambled, fried, omlettes), Thai food (I love Thai - Thai Kitchen brand is good), tacos are excellent, homemade pizza (or Glutino brand pizza if you're not in the mood to cook although that's more expensive. Actually nearly all Glutino brand stuff is good.)

There are good gluten-free breads and cookies out there, but you have to eat a lot of bad to find them. I love Food for Life brand bread (especially the red, black and millet). You could also try cooking. Check out The Gluten Free Gourmet. I've made cakes, cookies, bread, pizza crust from there and none of them have tasted bad. It's probably cheaper to make your own, too.

Hopefully this will give you a few ideas. Hang in there - things will get easier.

I think it's really neat that you're doing a presentation of celiac. Utah is a little too far for me to go to the presentation. Maybe you could post your slides or outline or whatever you're using. I bet it would be really helpful for newbies. Good luck!

I don't think I can do this. I am a conveniance food type, I don't cook and don't have time for anything difficult. Conveniance foods are often bread products, so I have no idea what to eat!

Also, I haven't heard about my bloodwork. My GI appt isn't till next Monday. Would they call me if the BW was positive? Would they call me if it was negative? Will they just wait for my appointment? They've called me with neg test results before. I also had an abdominal ultrasound. They said they do have the results of that when they made the appointment...but didn't tell me what they were. I'm assuming that means I'm not dying of some dread disease, right?

I'm just stressing hard. I ate some mixed nuts awhile ago and immediately got post nasal drip and I'm my hands are swelling a bit. WTF is that about? I've never paid any attention to my body's reaction to food before. Now everything seems to be causing a problem.

Sorry for the rambling whine...I'm just stressed and don't think I can do this. But I'm sick and tired of being sick and tired!

Thanks for listening...

b

Sorry you're not doing well. I have no idea if your doctor will call about the blood work. It really depends on the doctor. Why don't you give him a call and ask if the results are in?

Did you check if the nuts are manufactured in the same facility as wheat? It is quite common and I know my mother has gotten glutened from contaminated nuts before.

If you're looking for convenience, you could try rice cakes with PB, or basmati rice cooks super quickly. Or any type of fruit. Or eggs: scrambled, omelette, hard boiled. I love eggs.

Good luck and hang in there!

I've seen a lot of references on this site lately that you don't have any of the KNOWN celiac genes. There may be more celiac genes out there that we just don't know about yet. If I were you, I'd stop eating gluten again. Your body clearly doesn't like it.

I feel no guilt when I bring food only food for myself to a potluck. I'm not eating any of the other food, so I don't feel like I'm obligated to bring food for others, either. I do, however, usually bring food. I think of it as an educational thing. People usually love what I bring and it shows them how yummy and easy and "normal" gluten-free is.

I tried the Zone diet a few years ago because I was so fatigued all the time. I did feel better on it and now I realize it's probably because it's so low in gluten (this was pre-dx for me). My brother did it during cross country and he got a personal record nearly every race because of it. The rest of the team would have their pasta parties the night before a race and my brother would go along with his zone meal and kept getting better and better. I think the Zone diet is a really easy one to adapt to gluten-free so I say go for it!

Kinnikinnick makes amazing donuts! I've been gluten-free for a while so I may not have the best memory of gluten-foods, but I wouldn't have known that they were gluten-free if I wasn't at a celiac event at the time. I found them in the freezer section of my local natural food store - right next to the gluten-free breads and pizzas

I quite like Ener-G brand pretzels, but I don't think they taste exactly like regular pretzels do. My gluten-eating friends say they taste like saltines, but I love them.

You could also ask him to read some books on celiac (and tell him it's so he'll understand your disease and be able to help you through this). Maybe he'll see himself in some of the literature. Try Dangerous Grains. That book is my favorite and talks a lot about the non-GI complications that can be cause by celiac. You can try getting it from the library if it's hard to get to a bookstore (I know when I was a teenager my parents never would have bought me a book unless there was good reason).

Wheat starch is one of those things that through processing will usually end up mostly gluten free, but not entirely. If it's tested the gluten content will usually be below a certain acceptable parts per million which is why in countries like england wheat starch is allowed in gluten-free foods if it tests below that acceptable parts per million (can't remember the exact number). But in the USA wheat starch is generally not tested so you have no idea how many parts per million (ppm) of gluten it has. Here's my theory on it: There are too many opportunities for cross contamination out there that I will not ingest something that I know has even a few ppm. A few ppm might be ok, but what if I eat something that got contaminated with another few ppm and now I'm over the limit and I get sick. It's just not worth it to me. All the celiac books I've read also say that wheat starch should be avoided.

Marshmellows should be alright.

Sounds like you mom is super supportive! If it were me, I'd probably selfishly keep the dinner gluten-free, but then again, you don't want to make your entire family mad at you. Maybe you can get your mother to help you lay some ground rules for a gluten-Thanksgiving. Like you and the boys serve yourselves first, everyone washes their hands afterwards, etc. Can you bring the boys' meals already on plates so you can just microwave them so the food will never be out in the open where everyone else can contaminate it?

I love how you phrased this: "ONE meal of your life with food that is not your favorite and familiar, for the comfort and safety of small children, is NO biggie." It certainly sums up how I wish everyone would feel. That sometimes it's better to be the bigger person and step outside your comfort zone for the comfort and safety of others. (especially in this case where eating some different food won't hurt you or be scary or make anyone uncomfortable).

Good luck.

If the blue cheese is grown on wheat bread, are companies required to label it with "contains wheat"? For some reason I thought it might not be on the label.

There are a lot of bad gluten-free foods out there, but there are also a lot of good ones. I've had some really horrible bread, but now I eat Food For Life brand (my favorite are the black rice, red rice and millet). If you can try a different brand, I'd do that.

As for the negative test results, false negatives are not all the uncommon. If you would like a medical diagnosis, you could try gene testing through enterolab.

Yes, and I won't buy products from companies who can't seem to get their act together on gluten.

The company I have the most trouble with is Target generic brand. Because Target contracts with other companies to make their generics so you call Target and they give you the phone number of who makes it, but since they're just a contract company they don't have good customer service since they rarely deal directly with the customer.

Congrats! I'm happy you're feeling better. I, too, felt immediately better for about a month. Then I got sick and felt awful again, but still better than I was pre-gluten-free. You will probably still have some bad days, but hopefully they'll be few and far between.

Snickers are gluten-free. Three days just isn't long enough to expect all your symptoms to go away. Your intestines are still healing. You'll probably get random stomach pains for a while for no good reason until you're fully healed.

Oops! Celiac is a steep learning curve, and although he ought to know that goldfish contain flour, he probably just didn't think about the ingredients. I know I never used to think about what had wheat flour in before dx. It takes a while to adjust your thinking to analyze every ingredient label. Maybe you need to label all the food in the house with gluten-free or not gluten-free. Maybe you and your husband could go through your kitchen together and pull out all the gluten food. When I was first diagnosed, I went around putting those Mr. Yuck poison stickers on all the gluten food so I could remember what things I had check the ingredients of. Then I put all the gluten food on one shelf so I didn't have to deal with it. My dad still eats gluten so there was no need to throw it away - I just didn't want to dig through it looking for my stuff. And as your daughter is gluten-free for longer, you'll probably start having less and less gluten-food in the house. Good luck!

From Nini's Survival Kit:

Curad

www.curadusa.com

1-800-227-4703

Curad bandaids will no longer say their bandaids are gluten-free because suppliers can change.

Johnson and Johnson

1-866-JNJ-2873

Bandaid Brand Bandaids are gluten-free (includes clear, family variety pack, kid character bandaids, flexible, and fabric bandaids).

3M Corporation

www.MMM.com

1-888-364-3577

Nexcare Bandaids do not contain any ingredients with gluten, but they don

I take acidopolis for my stomach. It does seem to help.

For depression I've taken St John's Wort (you may want to consult with a doctor on this one, though, it will interfere with some medications like birth control pills) and Omega-3. I think they helped some, at least as much as they could help gluten-induced depression before I went gluten-free.

I also think things like having a regular schedule, learning to relax, exercising, playing with a pet or doing volunteer work helps. And from your picture it looks like you might live in a climate that has cold winters so you could try getting out into the sunshine. Those sunlight simulation boxes can be very helpful for people with seasonal depression, too. I'm thinking of getting one because it's hard for me to get out in the sun with my work schedule.

Very thourough explaination - thank you! I agree that celiac is not just a GI disease. The majority of my symptoms weren't GI-related. Sure I had some stomach pain, but that was nothing compared to the fatigue, joint pain, brain fog and depression.