Is there anyone here who is qualified to comment
on the celiac genes. Thank You.
All I can tell you is my dad’s dad had it, my dad had it, and now I have it.
I have a 12-year-old daughter who’s been tested and so far negative, but
needs to be tested every few years.
There are 2 genes indicative of Celiac Disease. DQ2 and DQ8. Just having either gene does not mean you have the disease but that you may trigger the gene and thus activate the disease. I had my DNA tested by Kimball Genetics to find out if I had the gene and I do. I just wanted to be sure the doctors all had it right and had I not had the gene then I would know it was gluten intolerance and not Celiac. Either way though, I remain gluten free. Hope that helps!
What is the difference between gluten intolerance and celiac disease?
When I first found out (2 years ago) that I had Celiac Disease, I was VERY
faithful and felt great being gluten free. Over the last year, I have
cheated so many times…even though I feel horrible afterwards and swear
I’m not going to do it again.
How did you do it?
Gluten intolerance means that when you ingest gluten you have a reaction whether it be gasto or migranes or what have you but your intestines are actually being damaged as they are with Celiac. Celiac is a genetic auto immune disease that when you ingest gluten it flattens the villi of your small intestines and makes you vulnerable to many types of cancers. Celiac is not curable but is controllable with a strict gluten free diet. In either case it is best to remain gluten free and never cheat. I’ve just celebrated my third anniversary of being gluten free and have never felt so good as I do now.
Keep in mind that celiac disease is an autoimmune disease, the most common one. If you have one AD, you are more likely than average to have another. ADs are highly familial, as a group. However, family members may develop completely unrelated ADs – my grandmother could have lupus, my daughter chronic fatigue syndrome, my niece rheumatoid arthritis, for example. Stay aware of your inherited propensity for other autoimmune diseases.
Cornlily.
Added bits of information: CD is twice as common in women as in men.
Not so many years ago, parents were told that CD was a pediatric disease, and that their children would “grow out of it.” Unfortunately, children may grow out of their symptoms, but they never grow out of the disease. Therefore, adults may have hidden damage occurring, while they believe themselves to have had it only as toddlers.
Cornlily
How did I avoid cheating on the CD diet? I just plain know I can’t, not ever, not ever. That helps. I know that cheating is not a possibility, not ever. That’s probably easier than thinking that one can have a little bit, sometimes.
The nearest I get to cheating is sitting in a good bakery/coffee house near our house, knowing that there may be flour in the air. My husband wipes the table carefully so I won’t touch any hidden gluten. I love sitting there and watching him eat the brioche I remember well; I can imagine the taste and texture, and that’s enough. I think if I had not eaten well, very well, all over the world for years, it would be more difficult. I have enough taste memories that I don’t feel the strong pull of curiousity.
Ihave strong incentive to avoid cheating. I know that celiac disease, untreated, contributes to osteoporosis, memory loss, strokes, personality disorders, other truly nasty things that would affect my family as well as me.
After 18 months strictly GF, a bone density scan showed I’d improved from fairly advanced osteoporosis to merely osteopenia – that’s a big, big change.
My family brings very little non-GF food into the house. They can if they want to, of course, and sometimes they want to. However, our eating habits have changed so much that non-GF food just isn’t that big a part of our lives. When they have non-GF, they keep it separate, usually in sealed plastic boxes marked with red tape.
We have separate colanders for GF and non-GF pasta (the non-GF one is red) because they’re hard to clean. All the drawers were thoroughly cleaned when I was diagnosed, and wooden spoons that had been used for non-GF pasta were discarded.
I’ve learned what is “safe”, more or less, to order when I go out. The big problem is being invited out to dinner at an acquaintance’s house, or going to a business dinner in a restaurant, or taking part in a pot-luck picnic. I have various strategies for these times, but they aren’t easy to handle.
At home, that’s a piece of cake, so to speak. I’ve learned about wonderful foods that I never would have thought of cooking if I could just dig into my old habitual wheat pasta and sandwiches.
I can even travel to Europe, if I pay attention to what I’m doing. Italian restaurants are wonderful about accommodating celiac disease.
Traveling in this country is harder; a Burger King may or may not be safe. On the other hand, a small resort hotel in Tucson, one I like very much will, given a little notice, even order the kind of GF bread and beer that I prefer! They offered to re-wash all my dishes in special GF soap!
H.
You truly are an inspiration to me. I needed that little push today
especially. I have a husband and four kids, ages 12, 9, and twin
6-year-olds. In their eyes GF food is “flavor-free” food so I am always
making something for them and something else for me…or just suffering
because I’ve had too much of a hectic day to make two separate meals.
I only found out I had Celiac Disease about two years ago so they’re still
not used to not being able to go to McDonalds or any Chinese restaurant we
want anymore.
PF Changs and Outback thankfully have GF menus so those are my two favorite
restaurants but like you said, it’s hard to go out to other homes or
restaurants and not feel like you’re putting someone out because of our GF
life. Last Friday we were at a strictly Italian restaurant with four other
friends - we didn’t pick the place - and I didn’t have the heart to say I
couldn’t eat there. We hadn’t seen our friends in ages and they didn’t know
I had Celiac so I just ordered the Italian sausage pasta. I was sick that
night and the next day and still felt terrible Sunday, which was Mother’s
Day!
Today I am going to sit down and put together dinner ideas for family GF
meals. The way I look at it, our family will be eating healthier too! I
think if I don’t tell the kids it’s GF, most of the time they won’t even
know the difference.
I have had no willpower up until today…I’m hoping you changed that.
Thanks,
By the way, were you ever given a list of name brand foods you could eat? I
received one two years ago - from the medical facility in Milwaukee,
Wisconsin that diagnosed me - and another Celiac friend I meet at a meeting
looked at the list and didn’t believe some of the things were really GF.
Let me know what you use as a source.
Thanks!
Ree, you can’t go to an Italian restaurant and eat pasta, you just can’t! Your children need a mother with good bones!
I eat in Italian restaurants, here and in Italy. It’s a little risky, because of the possibility of cross-contamination, but I’ve never had a problem because I don’t order pasta or eat bread. Most Italian restaurants, in the U.S. and in Italy, have lots to eat other than those foods. Look for salads – specify no croutons touching the food – and grilled items. Look for rice dishes, like risotto.
I eat in MacDonalds, too. I ask for a hamburger without a bun, and I eat it with a knife and fork. The InandOut hamburger chain serves the hamburger patty and trimmings wrapped in a lettuce leaf! If my husband is with me, he insists on the worker changing plastic gloves, to avoid cross-contamination. I usually “forget” to do that; it embarrasses me.
MacDonalds french fries are supposed to be safe for CD. However, there’s always the possibility that a manager, trying to save money or being careless, will mix in cooking oil used for battered foods.
On another list yesterday, someone wrote that her brother has worked for more than one P.F. Changs, and that the kitchens are very careless about gluten contamination. A particular problem she mentioned is that the pans aren’t rinsed out between GF and non-GF foods; the cooks feel that, because they cook at high heat, rinsing isn’t necessary. High heat kills germs, but it doesn’t get rid of gluten. (The brother thinks she’s being picky.) Several people have mentioned getting “gluten symptoms” after eating at P.F. Chang’s. I’ve never eaten there, but people mention chopsticks as being a problem, something about some of the chopsticks being a problem for gluten. I don’t know if that’s accurate. I’d bring my own, just in case.
If you Google a chain restaurant name, you may get a menu that will let you think ahead for what you can order. I feel a lot more comfortable in family-run, non-chain restaurants, though, especially outside rush hour.
When I eat out, I always tell the waiter about my restrictions. That’s no guarantee, but it helps. If I feel the waiter has paid any attention, I make sure I tip especially well; my request has taken time from a busy shift.
This can work, and it isn’t that hard once you get used to it.
They think GF-free means flavor free? No reasons for that. Wheat doesn’t have more flavor than rice. The big problem is bread. I’ve found one that tastes so good that the rest of my family sneaks it, but it’s expensive for a family with hungry kids. And it still needs toasting to taste great.
Go with tortilla-based and rice-based dishes. And there are lots of (too many) salty snacks that are based on rice. Barbara
s Bakery is one brand. Rarely do we even think about gluten at home, because the things we cook were never meant to contain it. If we ate much processed foods, it would be more difficult, as you really, really have to read labels. I do get cravings for GF packaged cookies, Pamela’s Pecan Shortbread cookes – and they’re sold a two-hour drive from where I live most of the time.
This will work out. Really it will, if you remember that you can’t eat gluten EVER. Once you get that into your head, things truly get easier.
One more thing. CD is highly familial. Your sons have a 20% chance of having it. It would be good to get them tested now. Damage from CD can be severe and cumulative, before any symptoms are evident. Please take this seriously.
H.
Bugaboo Creek and Smokey Bones also have GF menus…
Someone earlier mentioned lists of GF (processed) foods to substitute for non-GF foods.
I think celiac.com still has such a list. I haven’t looked for a long time.
ClanThompson.com has a short free list and a longer purchasable list, which can be put on your PDA so you can refer to it immediately while you’re in a store.
Celiac.com has (or had) links to a lot of GF lists.
If you’re at Whole Foods or Trader Joes, ask at the service desk for their GF list. You also can get it on-line. I think several other stores now have such lists.
Whole Foods and another regional store (in Fort Ross, CA) i sometimes get to has a tag they attach to the shelf below GF foods.
My dietician at my HMO gave me a list, but it was pretty much useless.
Most manufacturers will reply to a query, by phone or on-line.
Kraft, and others, have good on-line indicators of which of their foods are GF.
However, never, never trust a list to be up-to-date. Read the label every single time. Ingredients change with no warning. Even so, you can’t be absolutely certain of the GF status of any processed or even partly processed food. Cross-contamination is always an issue. We just try to reduce the risk by avoiding all known sources of gluten.
Now, the GF status of prescriptions – that’s another big question. Sigh.
H.
They tested my 12-year-old daughter right away when I found out (2 years
ago) and she was negative and just mentioned I should have the younger ones
checked in a few years or earlier if we suspect any symptoms. I will ask
that they all be tested.
What is the GF bread that you like so much? That’s still one thing I’m
trying to find!
I appreciate all that you told me.
-----Original Message-----
From: cornlily [mailto:celiac-cpt3156@lists.careplace.com]
Sent: Wednesday, May 16, 2007 10:58 AM
To: marieann@phoneserv.com
Subject: Re: [celiac] Genetics
Ree, the bread that we all like, really like, (as long as it’s toasted) is Whole Foods Bakehouse line. It includes Prairie Bread (lots of seeds and flavor) Sandwich Bread (I haven’t tried it), Tomato Garlic (lovely with cheese or meat or toasted fingers with drinks), and Cinnamon Bread (everyone likes this.)
People report good luck with making bread. I keep meaning to, but something else always seems more pressing. Montina flour mix (made from wild rice, primarily) seems a good thing to investigate, along with the other GF flour mixes. I read that stand mixers are a better bread-making investment than a breadmaker, but I have little first-hand experience; I can only say read up on the subject before making a purchase.
Also, we make a lot of GF cornbread. Our version is unsweetened and contains cheese, buttermilk, and corn kernels. This isn’t, of course, useful as an ordinary bread, but it satisfies the craving for something breadlike. Also, I grew up eating it, so it feels homey to me.
H.
You’re right about not telling them it’s GF increasing the odds they
will like the food–I used to preface everything I served to friends
and family with, “It’s GF but I swear it tastes good!” Finally my
husband told me I was scaring people away and just needed to let the
food speak for itself.
In fact, he doesn’t have CD but loves a lot of “my” food as much as
his–he prefers rice crackers to regular crackers, loves the GF
chicken sausages I throw on the skillet, and we’ve learned to make a
bunch of different types of risotto. Corn tortillas are just as tasty
as flour ones when we make fajitas, and we’re huge fans of polenta.
I’ve also found that Italian places are great abou grilling proteins
and steaming veggies; I don’t know if there is one near any of you,
but the chain Maggiano’s now has a GF menu, including GF pasta…
Good luck!
Laurie
ps–there was an interesting article on CD in the New York Times the
other day, I linked to it and wrote about it on my blog, under the
post “The Gluten Wars: To Ingest or Ignore?”
On 5/16/07, cornlily celiac-cpt3156@lists.careplace.com wrote:
Hi Ree,
I have found an easy way to bake gluten free. Just adjust a regular recipe
with gluten free all purpose flour and add xanthan gum one teaspoon per cup
of flour. I have had great luck doing this and no one can really tell its
gluten free.
Good Luck
Kathy
On 5/16/07, Ree celiac-cpt3156@lists.careplace.com wrote:
What’s your cornbread recipe?
----- Original Message -----
From: “cornlily” celiac-cpt3156@lists.careplace.com
To: sleepy.jeanne@comcast.net
Sent: Thursday, May 17, 2007 12:00 PM
Subject: Re: [celiac] Genetics
You ask about my cornbread recipe. I’m going to have to rebuild it. I had a fatal hard drive error, and the drive saver people may not be able to do much. I usually cook the recipe by memory, but I don’t want to pass it on without testing the amounts, just in case. I’ll try to remember to enter it after I’ve made it at least once.
Regarding recipes: Delphi forums celiac area has an extremely extensive recipe section. A professional named Mireille oversees it. There, you can find a way to make just about anything GF except for croissants – which just won’t work without gluten, I’m told.