acousticmom

You folks are awesome. Great ideas!

Using long-handled serving utensils and different decorations around the gluten-free foods would help make the same-table-scenario work, as long as you don't mind sacrificing seconds and leftovers. (At our house, I mark all buffet leftovers with an "X" for possible cc, and the gluten-eaters eat them, so nothing goes to waste). I'm not sure how we'd label ingredients for additional food allergies, though I could see a need for that also in the future. Maybe we could have a "point person" that people can talk to, who knows what the dietary needs are and can be available for ingredient questions.

I have to say, we are blessed to have non-celiac friends at church (great cooks as well) who've quickly learned the ins and outs of gluten-free food prep and are honest enough to tell us if they're not sure if something is safe. Their hospitality inspires me!

Keep the potluck ideas coming. I'm also curious about budget-conscious gluten-free recipes to feed a crowd (not only for potlucks, but also for hungry teenagers and friends at home). Maybe those have already been posted elsewhere.

Carol

I'm not sure where to post this, but I could use some advice from anyone who's helped organize buffets, etc. for public dining and have also managed to accomodate celiacs.

Here's the situation: We now have 3 celiacs plus 1 gluten-intolerant person at our church. Given the increase in diagnoses lately (yay for the awareness efforts!!), I'm sure there will be more in the future.

When my son and I were the only ones, we usually skipped potlucks. But now that there are more of us, I'd like to offer the others a way to go and enjoy both the company and some gluten-free food.

The celiacs need to be confident that the gluten-free offerings are prepared and served in completely safe ways. It's also important that other people don't feel offended (i.e. avoiding hand-slapping when a normal person reaches gluteny hands toward gluten-free food).

We've considered a separate, staffed, well-labeled table that's separate from the rest of the potluck, but that's not ideal--the people qualified to supervise it would prefer to socialize, and it's too hard to educate a couple hundred adults and kids so they won't unknowingly cross-contaminate. Plus, the message of "you [normal folks] can't eat this food" is awkward at best.

Maybe a separate table in a separate room that only celiacs (and potentially others with food allergies, too) know about.

Has anyone tackled this successfully?

Carol

jerseyangel,

Many thanks for posting the link. I haven't watched the show in a long time, but it seems to me this was quite a substantial segment, more in-depth than their format normally allows.

Hooray!

Carol

You might check with her doctor to see if there's anything that can help with the pain when she does get glutened. I know several prescription meds have been mentioned in past discussions; I don't know if any of them would be appropriate for an 11-month old, but her doctor might have suggestions if her pain is very bad. It's awfully hard to watch your kid in pain when there's not much you can do to help it go away.

My son (13) sometimes finds a heating pad comforting as well.

Carol

Carol,

As to your original post, the stomach bug is not the true flu and the flu shot has no effect on it. he flu shot does not have gluten in it. In fact, ALL injectable drugs and IV fluids are gluten-free.

richard

Thanks, Richard. I didn't know that, so it helps with my decision.

I should have known I was opening a can of worms (I know people on both sides of the fence myself). I agree that each individual ought to evaluate the pros and cons before deciding, and consider the sources of the information you use.

Tiffany raised an important point: Anecdotal stories can be very valuable, but they can also persuade us to believe in "conventional wisdom" that really doesn't reflect the facts (Steven Levitt's Freakonomics makes this point really well). Check out the claims you hear and pray for wisdom.

Good discussion. Let's keep it constructive.

Carol

My 13-year old son had some mysterious stomach pain last month--3 episodes that were very painful, but different from how gluten feels. These he felt almost in his back. The doc gave him belladonna, which helped 2 of the three episodes.

We never figured out what caused those episodes, but at the time almost every family around here had kids sick with one virus or another. (Though nobody else in our family got the flu, so I can't say it was viral, either.)

So I'm wondering, is basic stomach flu worse for celiacs than the general population? Do you get a flu shot, or do the shots contain any fillers or ingredients that might be a concern?

Carol

I don't doubt for a moment that a person could have a reaction to the smell of toast or any other nearby source of gluten. After all, the only reason our olfactory nerves can detect anything is because of particles being wafted off the item and carried through the air to our nose. If we can be sensitive to an animal or pollen, then why not gluten?

RiceGuy, that's a good point. We're told that gluten has to contact the intestines to cause a reaction (i.e. we shouldn't have to worry about hair products), but there are so many unanswered questions about gluten intolerance, it wouldn't surprise me at all if we find other types of reactions at work as well. And yet, the logic I hear all the time from medical folks is that if we don't have the research to prove something, it must not exist.

And Brian, just to clarify, I totally take him seriously. Now that his "big" pain has mostly gone away since going gluten-free, he doesn't always complain about "little" pain, since it's no big deal to him--but it could signal some minor glutening or other food intolerance, so I always listen to what he says.

I just have to laugh, though, because just when I think life with gluten intolerance couldn't get any weirder, this kind of a question comes up.

Carol

Hi Carol,

I have actually seen a little boy who lives near us get a skin contact rash from gluten. (I never saw him touch it.) I did see him "sense" out Playdoh hidden on a shelf out of his normal range of vision. He didn't want to play with it he just shuddered at the sight of it. He was too young to speak. He also reacts to dogs. His mother was very surprised he didn't react to our dog. She didn't know our dog is on a gluten free diet.

I don't know if that helps. There is no way to say how sensitive a person can be.

Laura

Wow--that's weird! I wish I could peek at the research findings 50 or 75 years in the future and see what they learn about gluten issues. In the meantime, I'm getting used to weirdness.

What dog food do you use?

Carol

When my 13-year old son gets glutened, he copes with the pain by pacing the circle route in our house. I can tell how bad it is by how fast he's walking. (Fortunately, NuLev usually helps with the pain, otherwise he'd wear ruts in the floor!)

His pacing route takes him past the regular toaster (quarrantined on its own table) and the bathroom. This morning he told me that if he's been glutened and is pacing the circle route, and if someone is making regular toast at the same time, he actually gets a pang in his stomach when he goes past the toaster. He said the same thing happens if I happen to be using my favorite hair product (Redken Guts, which contains wheat but he didn't know that) while he's pacing past the bathroom.

Now, I can see something like drywall dust causing that kind of problem (which it has, for him), because it's so pervasive it would be easy to get some in your mouth. But the smell of toast in the toaster? I would tell him he's just being paranoid, but of course he is--he's got celiac!

Does anyone else experience this?

Carol

Thanks for all the info. It has been so hard even just eliminating gluten (for my kids and me), but I have a feeling there is more to it. I just don't know where to start. I have a feeling that my oldest child does react to some food colourings, so that might be a good place to start. Is casein in everything that is derived from dairy? What about non-dairy sources? Is it called something else in an ingredient list, or am I simply looking for the word "casein"? As you can see, I really don't have a clue!!

Since the new labeling laws took effect last January, companies are supposed to list if milk is in any obscure ingredients. Sometimes you'll see "Contains Milk" at the bottom of the ingredients list, but not always. Unfortunately, there are lots more names than just casein. Jenvan posted a helpful list on this board a while ago. Here's the address: Open Original Shared Link

For me, the easiest way to avoid casein (and gluten) is to eat really basic meats, veggies, fruits and nuts and cook from scratch. Sounds boring at first, but you start to appreciate great in-season fruits & veggies much more than if they were competing with your favorite processed foods for your taste buds' attention. So it's not all that bad. It helps if the whole family eats that way at home, so the kids don't have to look at foods they can't eat.

And if you can help the kids can make the connection with foods that make them feel bad, they'll be more inclined to stay away from those foods. That's why I'm such a fan of the "healthy eating" approach I wrote about earlier (and strict elimination only if that doesn't give improvement). It makes food reactions very obvious, and that's what you need.

Intolerances can be quantity-related. If you think yours are, I'd suggest being really systematic--cut them all out, then add one in a very small quantity, then try a little more of the same thing, and then a little more. Find out how much is okay. Then take it back out until you're done going through all of the suspect foods the same way.

I've read that eating foods you're intolerant to can cause leaky gut. That's a problem, because partially digested foods get into your bloodstream where they don't belong, and they can cause all kinds of problems. Knowing what you can tolerate & eating that way should give your gut a chance to heal, especially if it's already battered from gluten damage.

I've done both types of elimination diet--the kinder version, where you cut out one suspect food group at a time, and the brutal version of cutting out all but a handful of foods. The kinder version is a bit of a gamble, because if the kids have multiple sensitivities, you may or may not see much of a difference. The brutal version at least gets you back to feeling good (if food is causing the problems), and that's a big motivator for following through even though it's tough. I put off the strict elimination for many years because it sounded too hard, but I wish I had done it much sooner. It's the best thing I've ever done for my health!

And yes, personality & behavior challenges can definitely be caused by food sensitivities. Spooky stuff.

Janice Joneja, PhD and Jonathan Brostoff, MD have both written very helpful books if you want more guidance than your doctor can provide. I think both recommend starting with a "healthy eating" diet first, where you eliminate dairy, sugar, caffeine, & alcohol (if I remember correctly)--since these "normal" foods can have a drug-like effect on anybody. If you journal your observations before and during the healthy eating diet, you may see significant changes without doing the full-blown elimination.

Good luck!

You're spot on about the cold thing. She'd be wearing fifteen laters, have the heating right up and be cuddled up to a radiator wrapped in a quilt and still cry that she was cold. What the hell is with that? Cake was what set that off. Bread wasn't so bad, but anything sugary- cake, doughnuts, cookies, really set her off.

For a couple of years before going gluten-free I slept every afternoon, was chilled to the bone (especially when I was most tired), weak, and always felt like I was coming down with the flu. Naps helped, but nothing really made it go away. When I went gluten-free it helped my other symptoms, but I still got that extreme tiredness many days and couldn't work. Finally I started an elimination diet this summer, and although I aborted the diet after a couple of months (long story), it was long enough to find out that eggs and sugar cause those symptoms for me. Since cutting those out in addition to gluten and dairy, I feel great. The horrible tiredness is completely gone.

I'd strongly recommend looking into food intolerances, but only after you've ruled out other possible medical causes. If you can't get solid guidance from your doctor on how to do the elimination diet, read up on the protocols so you make the effort worthwhile. Brostoff and Joneja are two good authors on the subject. I hope you can figure it out--it's awful to feel that way.

Carol

I'm curious, are her dreams very vivid & unusual? Maybe she can see this as a sort of waking dream...

Sorry, queenofhearts, I missed your question earlier. She used to have scary dreams and occasional night terrors, but not so much now. The good thing is, she's a problem-solver, even at 10. So if she knows that being overtired can make it worse, she tries to get to bed earlier. I think anxiety is connected somehow. Even though she's generally bright, outgoing, and confident, at bedtime she'll freak herself out about things. Like needing to know when we checked the smoke alarms last ("three days ago, the last time you asked") or trying to imagine eternity and getting scared by the bigness of that. Anxiety can also bring on the Alice In Wonderland Syndrome if she's experienced it recently (of course, just thinking she might get it makes her anxious, so it's a chicken & egg scenario).

Fortunately, she hasn't gotten it again since my first post, though she "feels" like it at night time. We'll see, I guess.

Carol

I like the approach outlined in Food Allergies and Food Intolerances by Jonathan Brostoff, MD. He recommends doing your detective work in stages, to avoid being over-strict with your diet unless you really need to do that.

The first stage is what he calls a healthy-eating diet, which eliminates the common foods and beverages that can have drug-like effects on the body: caffeine, alchohol, chocolate, sugar, and histamine-rich foods (like well-ripened cheeses and salami-like sausages, some types of fish). He says that if you have a leaky gut, these things can have a greater effect on you than they might otherwise. That alone might give you a big improvement. If not, you can go on to the more strict elimination diets.

If you do an elimination diet, I'd suggest getting some thorough guidelines first, so you don't waste your time. (Brostoff's is good, and Joneja has written some excellent stuff, too.) I did one earlier this summer (and need to revisit it), and even though it was tough, it was the best thing I've ever done for myself. I had no idea how good a "clean slate" could feel!

Gotta go. Good luck!

Carol

I keep referring people on the immune support board over here.

That's awesome! Now you're reaching the kind of people who wouldn't think to look at this site, because they've never heard of gluten, let alone celiac.

Whether we're participating in other symptom-related forums or meeting bloggers who share whatever symptoms we had pre-diagnosis, it's the mindset of trying to help other people that makes it work. And there are so many really caring people on this forum, I'm just suggesting that we actively look for opportunities to meet the people who might not otherwise find their way here.

Since you mentioned CFIDS, I Googled "CFIDS blog" and found a guy who writes about his experiences living with CFIDS and some weird rash and a "cloudy head". (That much is true. I haven't written him yet, so the rest of this scenario is hypothetical.) He may never heard of celiac disease, or know that he should be screened for it. He's tried many things to cope with CFIDS, none of which solve the problem. So if I add a comment on his blog that sometimes gluten intolerance can cause the same symptoms, and suggest he checks out this site to see if he thinks there might be a connection, it might help him toward a real solution. Him, and some of his CFIDS-afflicted readers, and some of their families and online acquaintances, and so on. Same scenario, of course, for forum involvement.

This kind of information sharing happens naturally all the time on the Internet. What I'm suggesting is picking up the pace by deliberately looking for opportunites to meet the people who may be helped by the info we have. I'm not talking about spamming or foisting unwanted advice on anyone, just extending the same caring we see here to the rest of the world. If we did that, I really believe we could turbo-charge public awareness. The information is already available; all we need to do is help direct the right people to it.

And as more celiacs get diagnosed, they'll write in blogs and forums about how their symptoms went away or improved with the gluten-free diet, and then celiac gets "seen" in lots more places online. In that way, the growth of public awareness could be exponential. This is bound to happen eventually, just because of the way the Internet works. But I suspect a lot of us would like to see it happen sooner rather than later. And it's so easy, too. Compared to the days of spending huge amounts of money on TV or print ads to get your word out, the Internet makes it ridiculously easy.

Carol

I haven't had this precise experience, but with migraine (or fever) I often get the FEELING that my body is larger or smaller. I don't know how to explain WHY it feels that way... Migraines do play strange tricks on my vision too, but not exactly like this. I've had the sensation that people whose faces I recognize look different, yet I can still recognize them... they just don't look like themselves. Very disconcerting.

Leah

There are variations on the vision disturbances. Sometimes people's heads will look really small, or your hand might look stretched out and thin or your arm very large or your feet very distant--your own personal house of mirrors.

p.s. I went to this thread because I'm a huge fan of the book AIW... I belong to the Lewis Carroll Society & everything! I think one of the reasons I was drawn to the book in childhood is because I sort of identified with Alice's dreamy confusion & all the weird things that happened to her. Wonder if LC was Celiac!?

Yes, I've read that Lewis Carroll definitely suffered from migraines, and the book was probably a reflection of his auras.

Oh! I just had another thought. Is your daughter by any chance low thyroid? There's a connection with body temperature, & you can have a fever that measures normal...

That's interesting. I'm going to file that for future reference. She's never been tested for low thyroid. She has plenty of energy, though, and aside from being 10th percentile (I know, another possible celiac connection), she's quite healthy so we wouldn't suspect it.

Carol

My 10-year old daughter, who had negative bloodwork this spring, has had this weird thing called Alice in Wonderland Syndrome (AIWS) in the past. Her vision gets all weird--things look either very large or very small, and she can't make it go back to normal. It lasts up to 10 minutes or so, but Tylenol seems to make it go away faster. (We tried this because it started when she was sick, and she tends to hallucinate with a fever.) These episodes start with an illness, happen in clusters, sometimes a few times a day at worst, and gradually go away over a couple of months. It's unnerving for her (and us).

The ped. neurologist said AIWS can be a migraine aura, and you can have the aura without the headache. It can also be related to epilepsy, but he didn't think that was a likely problem for her. I've also heard people with schizophrenia sometimes experience AIWS. (Hmmm. . . . migraines, epilepsy, and schizophrenia are all things that can also be associated with gluten intolerance.)

She's gone over a year without this happening, and last night she had an episode. (Not sick this time, but probably a little nervous about starting school soon.) It's a terrifying thing for her, but she's coping better after she learned that her eyes were only playing tricks and she's not going crazy.

There are lots of descriptions of people's AIWS experiences on this forum: Open Original Shared Link. I posted a similar question there.

Has anyone here experienced this?

Carol

Surfing through a directory recently I saw lots of IBS blogs recommending anything but going gluten-free, menopause blogs recommending hormone treatment as a cure-all, etc. I wrote some comments in these blogs, why not?

That's what I'm talking about--joining the conversations that are "out there" (especially if they're not all that accurate) and offering links and info where they might be helpful. So many people network through blogs & myspace sites, the ripple effect can be incredible. Which is why blogs are touted as such a powerful marketing tool these days.

It would require kind of an outreach mindset. Whenever I'm online, it's a very self-serving activity: finding answers to my questions, communicating with the people I want to keep in touch with, etc. Instead, I'd have to spend some time looking for people who would benefit from the info I can offer, wading through some blogs that may not otherwise interest me. If a bunch of us did that, even occasionally, it could really help educate the public about celiac. And then, if I can refer people to my blog or my celiac friend's blog, they can get even more links and info if they choose. This is a huge networking opportunity. We don't really have to sit and wait for the mainstream media to do the PR for us.

Oooh--and now I'm dreaming, but a grassroots awareness of celiac could really drive consumer demand for gluten-free products and restaurants much faster than if we wait for doctors to start diagnosing more of it at their own speed. Sites like this one are already promoting a grassroots awareness, of course, but people have to come here to get the info, and they might not even know what questions to ask or what to search on. Talking with the right bloggers could turbo-charge the whole public education process.

Carol

I've been listening to The World Is Flat by Thomas Friedman. It's basically about globalization and how it's changing everything for individuals and corporations. (How can I possibly summarize a book that takes 19 hours to listen to? I'm only one-third of the way into it, but it's still very insightful.)

Now, it's obvious that the Internet is changing everything, especially for all of us who have found many more answers here than at the doctor's office. The little guy is getting empowered with information and technology like never before.

So it's got me thinking. I cheer every time a mainstream publication presents some info on celiac, but those events are few and far between. Meanwhile, I did a quick search on "food intolerance" among blogs, and there are tons of people blogging about intolerance issues. Since this is one area fraught with misinformation (i.e. diagnosing wheat allergy without considering the possibility of celiac), what might happen if celiacs started spreading solid info among bloggers? It wouldn't be spam if it's on-topic, and it's targeted to people who are already searching for answers. . . . It might create a lot more annoying questions for doctors, but hey, if people have accurate info, I think such a grass-roots effort could reach far and wide.

Has anybody already been doing this?

Carol

Last month, my 13-year old son went to church camp (Lake Ann Camp, northern Michigan), and I spent tons of time beforehand communicating with the camp chef about the menus, providing him the info he'd need, figuring out what we had to bring for my son to eat similar foods to the rest of the kids, and then pre-cooking and packaging it all. It was a lot of preparation. When we got there to drop off the food, the chef told us he had assigned a "personal cook" for my son, so one person who understood celiac and cross-contamination issues and would handle all his food for him all week. We were thrilled!

He still got a couple of stomach aches (fortunately they're "only" bad for 2-3 hours), but that was probably from ordering slushies from the snack shack (bigger cc risk there). We were camping nearby so we could come see him if he wasn't feeling well (how I wish I could do more than give moral support!). But all in all, he had a great week, and the kitchen staff was superb.

We face so many challenges, I don't want to forget to post the good stuff when it happens!

Carol

flxmanning & Chelsea--

Good luck with your culinary careers! If you do decide to specialize, I really think the demand for gluten-free foods is going to skyrocket. One article I read said that the number of diagnoses is doubling every year. But if the media picks up on it, diagnoses will increase much faster. You're ahead of the bubble.

Anyway, whatever direction you go, I wish you the best!

Carol

So as soon as my son's doc gets back from vacation, I'm going to see if there isn't some way around all this - if he's got a patent on these specific tests and they're the only place that does them, I have to suspect that a little prodding/insisting from a physician (instead of a griping mom) will get better results.

Please keep us posted on your progress!

Carol

Frankly there is no solid answer yet, this article here will give you some details though :

https://www.celiac.com/st_prod.html?p_prodi...-26106308354.ce

Thanks, Vincent. That helps.

Cute kid you got there!!

Carol

Thanks! I think Enterolab testing may be our solution, but I do want to check on their accuracy rate, since I've heard some concerns regarding this type of testing in general.

Three slices of bread a day--yikes! We haven't had gene testing yet, but my own suspicions make me uncomfortable with that idea. Does anybody know where this estimate comes from?

Carol