Celiac Disease?

[FullOfThought]

I wonder if you could help me gather some information for research. Poll allows more the one choice.

I am designing a project for school on celiac disease, and just need a basis of people’s opinion/experience/understanding of this disease/diet.

If you have any experience you would like to share I would really appreciate it.

Info - ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/

Thank you so much!

 

[twk001]

my biggest problem is that the gluten free options to buy in the store are twice or three times more expensive than the wheat options. we live on a tight food budget, and honestly sometimes i just want a good pan of brownies!

 

[Isaiah45_9]

My wife has Celiac’s disease.

Like twk001 said, Gluten Free products are more expensive than regular products. My wife is also allergic to casein…

To avoid spending so much money on food (We have 4 kids) all the meals my wife cooks are gluten and casein free. I have to give her kudos for being an outstanding cook and making delicious meals with these restrictions. She is very well informed and is contemplating launching her own business geared towards Celiac’s disease awareness and requirements regarding cross-contamination.

The cross-contamination part of the disease is often overlooked at most restaurants and sometimes at home by unaware patients. Basically, the amount of contamination is indifferent to the consequences of the contamination itself. For example, a little contamination is as bad as a lot of contamination. The mere presence of the contaminant in the body of the patient can trigger all sort of symptoms. As such, all food processed gluten free has to be done in a controlled environment and exclusive to it. ie - separate frier for gluten free fries that is not shared with regular onion rings, if the cook is using gloves and his gloves have processed food that contain gluten, a change of gloves is required, etc.

Thankfully in our area (North Texas) we have good options with restaurants that are well informed and prepared to offer Celiac disease people with alternatives.

Feel free to PM me if you’d like me to answer more specific questions.

Good Luck in your project!

Jose

 

[TheRealJuliane]

My younger son was diagnosed at age 7. He was very sick by then; we were afraid he wasn’t going to make it - he was emaciated, not eating, on the toilet for hours, in pain, nauseous, had canker sores in the corners of his mouth.

He’d probably been latent for a couple of years at least. His growth chart had flattened out, and his last well child check up labs showed him as anemic. The pediatrician didn’t bother to flag that. He had a swollen belly, but we thought it was “baby fat.” As we looked back after he was diagnosed, we thought, “How could we not have seen how abnormal that was?” But as with most people, we didn’t know such a thing as celiac disease existed, nor its symptoms.

He got a rotavirus, had fever, and diarrhea for a couple of days. The fever went away, the diarrhea never did. I have read other accounts of people being triggered into active disease by this usually harmless virus. Over the course of a couple of weeks, our formerly chubby little boy got skinny but his belly was still bloated. My husband actually said first, “There is something wrong.” God blessed us then, because there was another pediatrician subbing in for our regular doctor, and he looked our son over very thoroughly, ordered x-rays of his abdomen, and diagnosed “failure to thrive.” Of course I burst into tears - a 6 year old? Failure to thrive??

It took about 2 mos. total to get to a diagnosis. As soon as he was taken off gluten, he started improving. It was miraculous, really. Stop feeding him “poison,” he gets well!!! He even ate the hospital GF meals with great enthusiasm!

We had to postpone his First Communion. I was shocked to find out that the Church could not consecrate a GF host for him. I got angry about it. It was my “Mama Bear” response. Eventually I worked through that, and we went to talk to our pastor about how he could receive safely. We worked out that I would be his designated EM and that he would have a special smaller chalice that we would bring with us to church. That worked out just fine for many years. I only had a couple of people come up to me and I had to turn them away… I tried to stand in a sort of hidden corner out of sight of most people, and then once my son had received, I went in the back and consumed the rest and rinsed out his cup.

Our older son is gluten intolerant. He had the testing for celiac disease, had one count high but never progressed fully into the disease like his brother. His growth curve was starting to plateau in the 6th grade, though, so we decided to go GF with him too. He’s been very healthy and has grown to be 6’2"! He does react when he gets a gluten contamination, although he didn’t have too many symptoms before going GF. He’s never knowingly cheated.

Neither my husband nor I have the disease, but we’ve never been gene tested. I suspect it comes from my mother’s side of the family - her father had intestinal problems and was short-statured and some other first-degree relatives had problems too. But we can’t be 100% sure.

So there is my little history with CD. If you have any other questions, please PM me. Been doing this for 11 years now, it’s just a part of our lives. More products come on the market daily, it seems. Life is good for celiacs!

 

[maryjk]

I have been diagnosed for 5 1/2 years. The first few months were a nightmare. Now it is routine.

Most of our meals are simply gluten free. When we do have something that would normally contain gluten, I have the gluten free version while my family eats the normal version. We eat very few processed meals, almost everything is homemade.

My family has perfected “the drop.” That means that you don’t touch the spoon, ladle or spatula to the gluten food below, you “drop” from above.

 

[wondrousgnat]

I have a daughter in law with celiac disease so it is new to me. Now I am starting to notice the words “gluten free” on packages. Some are pretty rare and in other cases the food seems to be pretty expensive by comparison to other foods. It looks to me like they are overcharging a captive audience. Although there is one small chain that does not seem to overcharge.

When eating out gluten free menus are not always there. If she can get some she has to ask the waitress to make sure that the utinsils are clean from other products. Recently she had a gluten free pizza but couldn’t have meat on it because the way the restaurant made it. She also has mestatic cancer and her husband has diabetes and very high cholesterol. Lots of diet restrictions in that house.

 

[losh14]

I’m a celiac, diagnosed 18 months ago. After my diagnosis we found a family history that explains early-onset osteoporosis in both my mother and her mother, as well as bizarre bouts of upset stomach and sensitivities to nuts.

I sympathize with the expense and change in cooking:

my biggest problem is that the gluten free options to buy in the store are twice or three times more expensive than the wheat options. we live on a tight food budget, and honestly sometimes i just want a good pan of brownies!

Like twk001 said, Gluten Free products are more expensive than regular products. My wife is also allergic to casein…

To avoid spending so much money on food (We have 4 kids) all the meals my wife cooks are gluten and casein free.

My wife being vegetarian and my mother raising me on from-scratch cooking, we usually cook from fresh ingredients. Gluten-free for us means skipping or substitution noodles, re-learning how to make sauces, and I’ll make my own bread or use gluten-free tortillas for many meals. Our recipes are often ‘ethnic’ - of vietnamese, thai, chinese, indian, mexican or cajun derivation, more out of the desire to cook everything in one pot and have access to a wide range of vegetables.

The best thing has been a bread machine, a Breadmaster with a gluten-free setting. While I enjoy Udi’s it’s far cheaper to make my own, and fresher. And our oldest daughter prefers “daddy’s” toast to mommy’s in the mornings.

I find it’s just easier for us to entertain at home. We went over to my wife’s best friend’s house and her husband, meaning so very well, said he bought the only pack of buns that didn’t show gluten in the ingredients (blue bunny whole wheat hamburger buns … thanks though).

The cross-contamination part of the disease is often overlooked at most restaurants and sometimes at home by unaware patients.

I’ve had to get creative. Trips to lunch places usually results in a salad for me, and I’ve taken to organizing our work team lunches so I can steer us to places I can eat.

I think the social aspect has been much much harder. People often gather around food, and it took a lot of convincing to my father’s family that no, I can’t eat pizza, nor can I drink beer, so just let me bring my own food to the family gathering, okay? With my mother being diagnosed, the holidays we spend with her are easier because we can both eat whatever she makes, but this past Easter we spent with my wife’s family and I had to look through every single package to see what I could eat. I think I actually offended my wife’s aunt when, for her son’s high school graduation, I ate three hot dogs, a pile of carrots without dip, and some salted peanuts.

It’s been harder with work. A big part of our culture is fun events - it’s not unusual for an email to say “everyone knock off early and come downstairs to watch the Cards game! We’ll have beer, pretzels and nachos.” These necessarily involve food and while I would go at first and just not eat, I got really tired of the questions and sometimes the chiding. So this past year’s Christmas party was at a pizza place and microbrewery. Not a single item there lacked gluten. Even their salads all came with beer-bread croutons already tossed in. I just skipped the party. Yes, I got flack from the division secretary for missing the party she planned. I also got some pointed questions from one of the directors as to whether I was thinking of leaving the company, or why I was trying not to fit in with the culture.

I have been diagnosed for 5 1/2 years. The first few months were a nightmare. Now it is routine. …
My family has perfected “the drop.” That means that you don’t touch the spoon, ladle or spatula to the gluten food below, you “drop” from above.

I must admit I lost weight the first three or four months and was always hungry. I was also quite depressed - coming from a German family I drank beer at many meals and ate lots of breaded and sauced stuff. The first time I went to the grocery store the only thing I could think of making was chili. It was December and I walked by the cases of Sam Adams special winter craft ales and almost cried. Then I saw the lettering on the side of Woodchuck that said “gluten free”. I think I did cry at that point.

We’ve taken to either serving condiments at the start of the meal, scraping a pat of butter or jelly onto a plate and serving from there, or just using separate containers. My kids have their nutella, I have mine. My wife eats chunky peanut butter, I eat creamy, and if my daughter eats “mommy’s toast” it’s with chunky and “daddy’s toast” with creamy.

 

[TheRealJuliane]

I have a daughter in law with celiac disease so it is new to me. Now I am starting to notice the words “gluten free” on packages. Some are pretty rare and in other cases the food seems to be pretty expensive by comparison to other foods. It looks to me like they are overcharging a captive audience. Although there is one small chain that does not seem to overcharge.

When eating out gluten free menus are not always there. If she can get some she has to ask the waitress to make sure that the utinsils are clean from other products. Recently she had a gluten free pizza but couldn’t have meat on it because the way the restaurant made it. She also has mestatic cancer and her husband has diabetes and very high cholesterol. Lots of diet restrictions in that house.

Gluten free food is more expensive because in some cases, it is produced in dedicated facilities. The ingredients themselves are more costly. Since the flours are gluten-free, other things have to be added to make the products “act like” gluten is present, such as xanthan gum, guar gum, etc. The prices have come down quite a bit since we started out 11 years ago. The labeling law that was passed 5 or so years ago helped us a lot, too.

Honestly, it’s easiest just to eat simply when GF, because many foods are naturally GF. All meats, cheeses, vegetables, fruits, and dairy products are GF.

Eating out is always risky for a celiac! PF Chang’s has a good GF menu, though. Red Robin now offers GF buns for their hamburgers, and their fries have always been safe (cooked separately from the onion rings). We’ve had good results with smaller local restaurants which can be responsive to their customers. It’s not hard to cook GF, it just takes care and forethought, which rules out some larger kitchens that are like beehives.

Please warn your daughter not to eat Domino’s new gluten-contaminated crust. The celiac community is horrified that Domino’s has tried to capture the GF market in such an unsafe manner. It is not safe for those with celiac disease or gluten intolerance to eat such a pizza, since it is made under unsafe conditions.

 

[abort73catholic]

Nobody in my immediate family has celiac disease, but I know several people at school who have it. My second cousin is gluten-intolerant, but not dangerously so. If she eats a brownie or cookie or whatnot, she’ll get a headache. She still receives the Eucharist at Mass in the form of the host. Apparently, she’s always had it, but it was only diagnosed in the past year or so (she’s 18 now). Once she started cutting gluten out of her diet, she felt a lot better (no more headaches, stomachaches, etc.).

 

[wondrousgnat]

Gluten free food is more expensive because in some cases, it is produced in dedicated facilities. The ingredients themselves are more costly. Since the flours are gluten-free, other things have to be added to make the products “act like” gluten is present, such as xanthan gum, guar gum, etc. The prices have come down quite a bit since we started out 11 years ago. The labeling law that was passed 5 or so years ago helped us a lot, too.

Honestly, it’s easiest just to eat simply when GF, because many foods are naturally GF. All meats, cheeses, vegetables, fruits, and dairy products are GF.

Eating out is always risky for a celiac! PF Chang’s has a good GF menu, though. Red Robin now offers GF buns for their hamburgers, and their fries have always been safe (cooked separately from the onion rings). We’ve had good results with smaller local restaurants which can be responsive to their customers. It’s not hard to cook GF, it just takes care and forethought, which rules out some larger kitchens that are like beehives.

We ate at Red Robin last week. Also I am pretty sure Olive Garden has a GF menu. Thanks for the info on Dominoes.
Please warn your daughter not to eat Domino’s new gluten-contaminated crust. The celiac community is horrified that Domino’s has tried to capture the GF market in such an unsafe manner. It is not safe for those with celiac disease or gluten intolerance to eat such a pizza, since it is made under unsafe conditions.

 

[TheRealJuliane]

wondrousgnat:
Olive Garden is not a good choice for celiacs. They use the pasta water to blanch their vegetables in, so any veggies are contaminated by glutenous pasta. Some normally cautious celiacs have gotten sick from cross contamination there. Macaroni Grill is a better choice for Italian food, if you have them.

 

[maryjk]

Olive Garden is not a good choice for celiacs. They use the pasta water to blanch their vegetables in, so any veggies are contaminated by glutenous pasta. Some normally cautious celiacs have gotten sick from cross contamination there. Macaroni Grill is a better choice for Italian food, if you have them.

I talked to the manager there, talked to the chef/cook and to the waitstaff. I still got burned. I haven’t been back. I just can’t afford to be sick for weeks just for some poorly made pasta. Olive Garden just isn’t that good to begin with.

 

[TheRealJuliane]

I talked to the manager there, talked to the chef/cook and to the waitstaff. I still got burned. I haven’t been back. I just can’t afford to be sick for weeks just for some poorly made pasta. Olive Garden just isn’t that good to begin with.

I know, it’s not. Sorry you got sick. You are not the only one. They just aren’t a good risk. I think the Panera Bread Company actually can do more for celiacs than Olive Garden, which is tragic.

 

[wondrousgnat]

Sorry to hear about Olive Garden. Sounds like they are either incompetent or dishonest about their gluten free menus.

 

[Isaiah45_9]

Olive Garden is not a good choice for celiacs. They use the pasta water to blanch their vegetables in, so any veggies are contaminated by glutenous pasta. Some normally cautious celiacs have gotten sick from cross contamination there. Macaroni Grill is a better choice for Italian food, if you have them.

We have had the same experience!

Romano’s is a better option, my wife has not gotten contaminated there so far!

 

[maryjk]

Sorry to hear about Olive Garden. Sounds like they are either incompetent or dishonest about their gluten free menus.

I think it is more lack of knowledge, ignorant if you will.

My mantra is “once burned, twice shy.” I am very careful when I go out and I tend to frequent places. So when I walk into a restaurant, it is like the TV show Cheers, “hi maryjk.”

 

[Havard]

My sister has Celiac disease. Apparently it’s common among people with Irish ancestry, and we’re mostly Irish. I’ve been tested; I do not have it. Thank goodness for that, I eat whole wheat toast every single morning.

 

[TheRealJuliane]

My sister has Celiac disease. Apparently it’s common among people with Irish ancestry, and we’re mostly Irish. I’ve been tested; I do not have it. Thank goodness for that, I eat whole wheat toast every single morning.

Not to burst your bubble, but you can be triggered at any age. Celiac disease can be latent - I know of 70 and 80 year olds who have had their latent celiac disease triggered by some kind of illness.

Just be aware. If you start getting symptoms you know what to do.

 

[Havard]

Not to burst your bubble, but you can be triggered at any age. Celiac disease can be latent - I know of 70 and 80 year olds who have had their latent celiac disease triggered by some kind of illness.

Just be aware. If you start getting symptoms you know what to do.

I am aware of that, but I don’t have it now, and both my GP and my GI doc said they don’t even recommend proactive re-testing in the future because the likelihood is very low.

 

[TheRealJuliane]

I am aware of that, but I don’t have it now, and both my GP and my GI doc said they don’t even recommend proactive re-testing in the future because the likelihood is very low.

No, there’s no point in doing any further testing unless you start having symptoms. Neither my husband nor myself had antibodies to gluten, but we know that the boys got it from one of us…I suspect my mother’s family because there seems to be a history of intestinal problems, and they came over from England.

Some people get gene tested but I don’t think that’s necessary.