Professor

Kristin,

I initially decided to be nice and sweet, and remove my post to make you happy, but then I thought about all these other people saying whatever they wanted, and I didn't see you reprimanding every one of them (or did I miss all of those?).

Why all these other posts go on and on . . . and no one stops them, or bans the argumentative people, but when I point out the truth -- that it's not nice for Red to condescend and call us "you poor things," or that this quasi-research isn't as private as Red lets on (every single person with a computer and the Internet can read whatever you answer here) -- out comes the reprimand. Is it personal?

One last thing, and then I'll sign off permanently (unlike Red, who promised to leave, but never did). Since you've noticed that Red is the common denominator in all of these arguments, why not deal with the root of the problem? There's a "Red" on every forum, from arthritis to aplasia. The "Reds" of the Internet upset people who are there for help, who are sick, who are trying so hard to make their lives better. Good people leave, rather than be hassled daily for going to doctors, following treatments, and trying in the only way they know to get healthy. But somehow the "Red's" of the forums convince moderators that they have every right to be there, and tell everyone how victimized they are because they get no respect. Moderators need to learn to do their jobs, not just say, "Quit it." Wouldn't it be easier to throw out one bad apple and save the rest of the barrel? (We could make a nice big gluten-free apple pie to celebrate.)

Signing off. No need to reply, since I won't be back.

celiac3270 listed the two I plan to hit when I go next month (risotterria, and happy X 3). Also, check out:

Open Original Shared Link

Have fun!

Patty

BG (my affectionate name for her -- stands for brat-girl) will be thrilled! You each have another person who loves you!

But seriously, thanks for the quick answer.

Patty

I'll bet you see where I'm going with this one - minimize packaged foods  . . .  And whole, natural food in it's original state that isn't WBRO is going to be gluten-free . . .  One of the things I like to tell people is to go to their grocery store, and look at the produce department . . .  you can eat all that produce . . . fresh meat . . . non-gluten grains (rice, corn, quinoa, amaranth, buckwheat, etc.) and legumes.

Oh, you're after my heart! OK, not like that, but you know what I mean. This is what I'm all about -- back to basics, whole foods, one ingredient in it's natural state. It's always safe to get a potato, some canola oil (and I go organic for both), some sea salt, and make your own fries! Or chili, or burgers, or whatever . . . I also think part of my reasoning is that for too many years, before my celiac disease diagnosis, this poor old body was abused by gluten. Now I can do it a favor and make up for it. I treat it kindly.

That's all -- already added my teensy advice at the top. Just had to say, "Right on."

Patty

Yes, after 10 years of this, I still have questions. What about maltodextrin? I don't eat stuff like this, but I don't let gluten in the door, so I've always said no to maltodextrin on a label. I know malt, malt flavoring, and malt vinegar are usually from barley, and dextrin is sometimes corn and sometimes wheat, so I put those together and have always felt it's unsafe (not gluten-free).

Any words of wisdom here? Gluten or not?

Thanks in advance,

Patty

P.S. My daughter will love all of you forever is you say gluten-free!

Since we were talking about this on the McD's and BK post, I thought I'd start a new one to continue that . . . I'll only be there for 4 days, but at least eating won't be an issue for once in my life! Looking forward to the indulgence!

Anyway, here's a good site:

Open Original Shared Link

The descriptions really give you a good idea about them.

Anyone have any others?

Patty

If you are avoiding MFS because of a fear of gluten in it then you are missing out on a lot of things you can eat.

richard

I think you mean me, Richard? I assume so, since I'm the only one talking about avoiding MFS.

Am I missing much? Oh, I don't think so! I eat very well, thank you -- probably better than most.

My mottos are, eat to live, not live to eat, and eat only food (no chemicals, steroids, hormones, pesticides) . . . And in doing all that, I also easily avoid gluten. Finally, I also can't have eggs, soy, or dairy, so by the time I get through that list, what's left, right?

Thanks for thinking of me, though . . . you can have the "goodies" (or "baddies," depending on how you look at them) for both of us! And I am planning my binge at the gluten-free restaurants in Manhattan next month. Even the most devout take a vacation once in a while. So I'll get my treats, and then, back on the wagon.

Best,

Patty

I've had DH on the back of my neck often (at the hairline), backs of my knees, and once even on my stomach! This was after inpatient surgery, back when I used to be really clueless and believe that hospital dieticians DID know how to keep my meals gluten-free. So, even though my tummy was killing me, I still went to a dermatologist, who did a biopsy of the skin (2 more stitches for my tummy! ), and it came back DH. Then I knew I'd been "glutened."

It can be ANYWHERE! And miserable -- all that burning and itching! Argh!

Patty

Hi 2009,

I'm new to the group, too, but not to celiac disease.

I'm sure there is everything you need somewhere on this site, but the really fast low-down is below. I keep this "note" on my fridge, since we have a gluten-free household, and even occasional visitors aren't allowed to bring gluten into the house:

-------------------------------------------------------------------------

The gluten is in wheat, rye, barley, oats ("WRBO")

In addition to things that list those four plainly,

there is WRBO (therefore, hidden gluten) in other things:

Modified food starch

Soy sauce or soy sauce solids

Malt vinegar

Malt or malt flavoring (usually made from barley)

Dextrin (often derived from corn, but sometimes wheat)

Caramel color (frequently made from barley

-- this means watch those colas and dark soft drinks)

Brown rice syrup (frequently made from barley)

-------------------------------------------------------------------------

As far as beans, lentils, etc, if you are buying them uncooked in a sack, and they are just beans, for example, they are safe. But if you bought a can of baked beans, it may have modified food starch or other gluten ingredients. Read VERY carefully -- it often won't say "gluten" even, just like a bag of flour (pure wheat) doesn't say it. We have to learn where it is. I only make my foods from scratch, but others in my household who are not celiac disease (but still have to abide by the gluten-free rules! ) buy processed foods that are safely gluten-free. Just a matter of learning the basics (above, in bold -- maybe print it out?).

Hope that helps?

Patty

I've been diagnosed for 10 years now, and have good years and bad ones. I am having a tough year (just tough in dealing with it) now, although the two before it were fine. Wonder why . . . ? Maybe because I can no longer do dairy, soy, and eggs? Really feeling the limits of diet.

Anyway, I liken it to a 12-step program (no, I'm not making light of alcoholism, which is obviously a far more serious problem than celiac disease), but meaning it's just "one day at a time" for us. Wish I could say that after a while you get used to it and then it's all downhill. Also, whenever I change or expand my social or work circle (new job, for example), I have to keep facing all the issues I did at diagnosis all over again. Tired of it all.

Well, that's why we have this place, right? At least here there's a group of people who "get it."

Hang in there!

Patty

(I live these little faces -- can you all tell?!? )

If you're referring to the DQ2 and DQ8 . . .

Well, I guess that must be an abbreviated description -- sorry I don't know it as such. The full typing assays, and my own molecular diagnostics reports list them fully:

"The majority of celiac disease patients carry the DRB1*0301- DQA1*0501- DQB1*0201 haplotype (the DR3, DQ2 haplotype) or are DRB1*11/12-DQA1*0505- DQB1*0301/ DRB1*07- DQA1*0201- DQB1*0202 heterozygotes (carry the DR5-DQ7/DR7-DQ2 haplotypes). Almost all the celiac patients who are DQA1*05 and DB1*02 negative bear the DRB1*04, DQA1*0301, DQB1*0302 haplotype (i.e., DR4-DQ8 )."

So, unfortunately I can only answer your question with another question: are we referring to the same thing? I think so. But thanks for replying.

Patty

(Citation:

Open Original Shared Link )

Where I live they have a separate frier for the fries and the hash browns

Very good! Aren't you lucky! My daughter always checks, even though she doesn't have celiac disease (that we know of yet), but just because we have a gluten-free house, so she can't bring take-out home if it has gluten.

And "SuicidalTurtle," thanks for the recommendation on the restaurant -- my mouth is already watering. My brother and his wife are also spending the week with me in NYC, so places like that will work for everyone. Any more suggestions, anyone??? This trip is going to be a gastronomic delight! Won't be able to fit into my clothes by the flight home.

Patty

I will have McDonalds . . . hash browns

Watch those things -- my daughter went to Burger King the other day, and said that the little "hash rounds" have modified food starch in them. I'm assuming you've checked and there's none in McD's. We have a gluten-free household, and my daughter also told me that the frozen kinds in the grocery store often have MFS. Yes, as it's been pointed out that most MFS is safe, but I make it a personal rule to never touch it, regardless.

Oh, here's a place in Manhattan that I can't wait to try on that trip:

Open Original Shared Link

I already called and talked to them on the phone, and they have two separate kitchen areas, separate cookware and dishes, and so on, so they understand cross-contamination. I'm looking forward to this one!

Patty

Nope, I personally wouldn't do that. I figure they make the "bunless" burger on the same counter as the regular ones, and no doubt they pick up crumbs and residue. npth from the counter and from the gloves they wear making all the burgers (bunned and bunless). Too fanatical? Maybe, but that's the way I do it. And who knows with their condiments? Or Arby's pressed roast beef -- lots and lots of lunch meats have modified food starch in them.

I have eaten out so rarely in the past three or four years -- I say I "never" do, but in fact do eat out maybe once a year, something totally safe (trust me -- I'm fanatical!).

But I'm planning a trip to Manhattan in March, and have already found a few gluten-free restaurants and coffee shops. Looking forward to that! (Check out Open Original Shared Link -- they are gluten-free and dairy free. You can't bring anything into their shop. They even make their own almond milk for the coffee. And the food looks luscious! I think I'll get a hotel room nearby, and just eat there three meals a day )

OK, rambling -- hope that answers it from my perspective?

Patty

I was just reading the HLA types that are responsible for celiac disease, and then dug mine (printout of my genes) out of my file drawer (I have them because I was tested for a bone marrow transplant). They listed several HLA types on the site I was reading, and say that almost everyone with celiac disease has one of those in the first group, but the few that don't almost always have this other one. Be darned if I don't have both -- one in the first group, and also the one that is the "back-up!" Unbelievable, huh? Guess I was just bound to get celiac disease.

So I was wondering how many also have the gene that causes celiac disease, or if you were tested?

Patty

Just wondering how the platelets and petechaia turned out -- still there? How low are your platelets?

I got really sick a few years back -- platelets down to 50,000 (should be 140,000 to 440,000), WBCs down to 3.0 (normal is 5.0 to 10.0), and RBCs low. They did a bone marrow biopsy, and I have a very rare (2 in a million) bone marrow faillure disease. I don't have a matching donor for a bone marrow transplant, and there's no cure.

Anyway, give a post and tell how you're doing?

Patty

Hi,

I loved your story (WOW!), and you tell it so well. And what is this phobio about English on the phone? Your English is fine. I teach college English, and also college ESL (English as a Second Language), so what I say is true! Also, I used to live in Germany (for 5 years, in Trier), so we will have to PM about that sometime.

I have always had good gluten-free luck on planes. Usually lovely broiled seafood meals. I used to take my students to London and Paris (from the US) every spring, and they would be jealous of my meal on the flight over to Europe. For the flight back, I'd notice that several had apparently called for gluten-free meals, because they got what I got!

Patty

I might as well throw in an answer. I have either no dreams, or extremely violent ones. HOrrid ones. Scary.

OK, there is one other. At least once a week, in my dream, I suddenly realize I'm eating bread. Always on the third piece (maybe it's a roll, or pastry, or a piece of pie, or whatever), I realize what I've done and am shocked and terrified. My daughter woke up the other day and said that SHE dreamed I was eating bread, too -- also three pieces. Odd.

Patty

--kinda funny, but scary--some people have life-threatening responses when they consume foods they're allergic to--the dieticians would be in trouble if someone in the hospital was that way with wheat.

Yup, that was me -- in the hospital with a life-threatening allergy to wheat, and they bring me bread and crackers with my meals. I gave up trying to explain, called home for food, and my daughter brought me a couple of cans of pineapple.

And now you two have me laughing even harder! No, I never overeat, and it's hard to anyway. I don't like the gluten-free alternative flours and breads, so gluttony is not only a sin, it's nearly impossible (except for potatoes -- a favorite!). And no, I don't cheat (eat gluten) -- I used to have a mild allergy to wheat, and so when I went gluten-free, I was no longer de-sensitizing myself to wheat with little bits here and there, so now if I eat even a crumb, I have a severe allergic reaction (anaphylactic shock). So not only is cheating NOT an option, I HAVE to be so careful, so I generally don't eat out and buy only "whole foods" (one ingredient in their natural state).

Oh, this is funny -- last time I was hospitalized with anaphylaxis, they brought in bread on my hospital tray the next morning! It's was in my diagnosis, and I also told the dietician. So of course when I asked the dietician to be sent to my room, she told me it wasn't wheat, but "whilte." (Is "white" a new grain? I used to teach in the wheat and corn fields of Kansas, but never a field of "white." Hmmmm . . . ) Anyway, there I am explaining to this dietician what wheat is! Argh! It scares me, thinking of little kids with food allergies, who just eat what is stuck in front of them. Another story.)

OK, tell me something funny too?

Patty, the absent-minded professor

Yes, as Angel says, they test all kids by 5 years of age. Probably the incidence is not much higher than here in the US, but the difference is of course that they know it, and therefore are very able to help other celiacs.

We go to Italy every year for a month, but usually just rent a house, or an apartment if we're in a city. (Yes, I'm Italian.) This gives me complete control of my eating -- I haven't eaten out in a few years now (except coffee! ). And yes, Pamela's cookies are the best -- I like to sit in the piazza and have an espresso with my cookies. Italians also make almond cookies that are just almonds, sugar, and egg whites (I make these at home at least once a week) -- also a good option.

Your trip sounds very well planned and therefore, enjoyable. Hope the next one is just as good,

Patty

Hi,

I finally did it without any drugs! First pregnancy took 4 years to happen, then miscarried; second took 2 years, then another miscarriage; third took 2 years, same ending; fourth took 3 years, miscarriage again . . . then went gluten-free, got pregnant within 2 years and carried to full term! (Did have a hysterectomy after, ovaries too, but hey, I had my baby. It CAN happen.)

Best of luck to you and everyone dealing with this,

Patty

I called the airline the yesterday -- getting ready for a trip. After making the reservation, I needed to order my gluten-free meal. The guy on the phone told me that he would scan the list for that, and asked if while he looked, I would explain what gluten was. After I gave him a quick definition, he said, "Oh, here it is, and that makes more sense. I always thought it was "glutton-free," for people who were gluttons and ate too much." I couldn't stop laughing! Still chuckling today.

Patty

Hi,

I just went online to look up this gluten-free chili, because we have a gluten-free home, and my family complains that they can't find gluten-free chili in the grocery store . . . I "Googled" the chili you mentioned, and the label (link below) says "modified food starch." There's your gluten. Modified food starch can include corn starch modified with wheat, etc -- lots of combinations under that heading. I know because I've called companies asking. You see it in EVERYTHING now, from some brands of yogurt to lunch meats. BEWARE.

I only buy "one-ingredient foods" so I know that there is just one thing (i.e., a piece of chicken, or some ground beef, or a tomato, etc). Then I make my own foods (including chili) from those one-ingredient foods.

Open Original Shared Link

Patty

I've been at this for a long time, but the SOCIAL ISSUES are still a problem.

The isolation -- I often have to skip things (our first-of-each-semester potlucks at work, for example). Otherwise, I stand around with a diet beverage in my hand and people just have to know why I don't want to eat. (I've had too many bad experiences with cross-contamination, so I don't eat out anymore.)

And yes, I'd like to just go to a restaurant someday! ANY restaurant I want -- just walk in, sit down, and order!

Another thing -- people (family and friends) tend to make far fewer invitations, since I'm such a "hassle" to prepare for (I also can't touch dairy, soy, and a few other common ingredients). More isolation. This has changed my life in so many ways. Yes, I always offer to bring my own meal -- I mean, I just like attending whatever the occasion is.

Finally, there are a few who do the raised eyebrows when you have to explain it for the first time and they haven't heard of it -- sort of disbelief, or maybe it's all in my head? Many people are just clueless about medical things, unless they have personal experience. Argh. I'd better quit ranting!

Patty