queenofhearts

I really feel for you, Eden. My previous doctors didn't catch on to Celiac's despite 20 years of recurrent diarrhea, anemia, joint pain & migraines. It was only elevated liver enzymes (& even then a clear CAT scan) that finally got me a referral to the wonderful specialist who almost instantly diagnosed Celiac's just from my list of symptoms. Endoscopy confirmed it. It's distressing that even your GI specialist isn't seeing the pattern, but my first GI didn't either. (Good ol' IBS was his diagnosis.)

I hope another L.A. Celiac can help you find a doctor who knows what he/she is doing. But be careful of following the gluten free diet before you are diagnosed as it can throw off the test results.

Hang in there! You sound exactly like me pre-diagnosis, so keep fighting to get tested.

Leah

I'm sorry, I don't have an answer on the fast food because I'm a newbie myself, & I don't eat fast food much anyway. But I wanted to welcome you to the forum, & assure you that someone will know! This is by far the most useful resource I have found in coping with this disease.

My sons are college students, not Celiac as far as we know, & one of the first things they said when I told them about my new dietary restrictions was "that would be really hard here!" It made me think about tactics should they be diagnosed as well. My advice would be to speak to someone with the food service program, explain your restrictions, & let them know that they have a responsibilty to provide meals for you safely. (A letter from your doctor detailing the restricted items & stressing the importance of avoiding them probably wouldn't hurt.) Also if you can afford to stock up on some safe items of your own, there are plenty of gluten-free products you could make in a dorm microwave, as well as no-cooking snacks. A great microwave snack that my son loves is a corn tortilla, topped with grated cheese, microwaved on a plate 2 minutes or so, then topped with salsa, avocado, &c. The tortilla sort of fries itself in the oil from the cheese. The only downside is cleanup!

Good luck, Agent Z! I know there are some college students on this board, & they'll probably be much more helpful.

Leah

Elevated liver enzymes are what finally got me diagnosed!

My Gastro-Enterologist also told me that "hepatitis" simply means an unhealthy liver-- all the A's B's & so on are different illnesses that can harm the liver. The tests they run are for these known causes. The word "hepatitis" is about as specific as "headache." I'd never realized how many things that sound like clear, meaningful diagnoses are actually just a way to rephrase the problem so that it sounds professional! (IBS, for example!)

Definitely get tested-- even if you already know that gluten-free helps, it is good to have a specialist pinpoint the problem. Other folks take it more seriously, for one thing.

Good luck!

Leah

I was told by a customer service rep (via telephone) that the Kroger store brand aspirin is gluten-free. But a caveat: they wouldn't put any of their information in writing, & I'm too newly diagnosed to know if I'm getting glutened. So I'm not sure how reassuring this info is!

Leah

You might want to try Buckwheat Groats, they are not wheat despite the name. I don't know if they can be eaten without cooking though.

Thanks, I'm going to have to revisit buckwheat-- I always thought I disliked the flavor but then in reading up on gluten free grains, discovered that what I hadn't enjoyed was kasha, which is processed differently than the "pure" grain.

Thanks for the suggestion!

Leah

Sorry, don't know about this brand, but see my thread about Nature Made-- a cautionary tale! If you can't believe vitamin labels, what the heck CAN you believe???

I always double the yeast for a double recipe, but since I always double bread recipes, it's hard to compare rising times for me (in fact I frequently quadrupled recipes in my wheaty days... we eat a lot of bread in this house).

In any case I NEVER just go by the time in a yeast recipe, because the timing changes so much depending on how warm or humid the room is, how warm the liquid in the recipe is, how "lively" the yeast is...

oh, by the way, make sure you haven't used Rapid Rise yeast in a recipe that calls for the regular kind... that will definitely cause an overflow!

I always go by how high the dough has risen. (Yes, that means you have to check more often.) And on the advice of a gluten-free book (I forget which) I put the loaves in the oven just a little sooner than I would for a wheat bread, because it is all too easy to break down the structure of a gluten-free bread if it over-rises (as you discovered!)-- then the whole thing collapses & you have a dense, low bread with irregular grain. Gluten is what holds traditional doughs together; that's why gluten-free is especially hard for bread, which has to support much more height, hence weight than a cake layer or muffin.

Hope that helps! By the way, I've only been gluten free for about 2 weeks, but I've been baking bread for over 35 years, & I've been experimenting in the kitchen like mad since my doctor told me I might have Celiac-- I simply couldn't survive without baking!

Happy baking,

Leah

Oatmeal used to be one of my very favorite things. I love it raw with milk & fruit-- learned about that in Denmark as a child-- & hate to give it up! Oatmeal bread, oatmeal cookies, all faves... but I've just been diagnosed & I'm going as straight & narrow as I know how until I get a handle on this thing. So I'm not taking the chance with oats.

Anyway, my question is, have any of you tried the non-oat flakes out there? Somehow I can't see myself eating soy flakes with milk for breakfast... but are there other substitutes that might satisfy my muesli jones?

Thanks,

Leah

Just to clarify, Lister, the initials are confusing, but AIDS is actually Acquired Immune DEFICIENCY Syndrome, which is not at all the same as an Auto-Immune disease. Lots of folks mix these up-- I've even heard of people being afraid they could catch Celiac.

I'm not a doctor, by the way, but I do know that the medical definitions are very different. After all, our immune systems are going overboard! With AIDS one loses the normal immune response. More or less the opposite mechanism.

Not to say that Celiac isn't a little scary in its own way, but much less dangerous than AIDS.

Hang in there, you'll be fine!

Leah

If I had a Costco nearby I'd go there, because of their fair labor practices, & just because they are not part of the Unholy Walmart Empire-- sorry if that offends, ChelsE, but I do object to many of their business practices.

Unfortunately there's not a Costco in my city yet (I do hear rumors one is coming), but I stopped going to Sam's after reading Nickel & Dimed...

My brother has a Costco nearby & shops there almost exclusively. Their quality seems very good, from my second-hand knowledge.

Leah

Your experience is a great lesson! I too have a hard time with "being difficult" & dread asking for special treatment. So far that has been the hardest part of this diet! I was a vegetarian for many years & thought I would have a handle on this issue, but gluten-free is SO much more complicated, & some folks just refuse to believe that the smallest amount, cross-contamination &c. can cause illness. Every success story gives me strength to keep trying to function in the real world, not just disappear forever into my own kitchen!

Thanks,

Leah

Hey Queen! I live in Apex. Go to church in Raleigh. We should definitely chat

I'd love to get together sometime. I'm learning to bake gluten-free so maybe you could come over & try my wares one Sunday?

Leah

Just saw this at Whole Foods in Raleigh too!

This is an interesting thread. I'm a muttly mix of Irish, English, Scottish, & French. Dark brown hair (not very gray for my age), hazel eyes, very fair skin, some freckles, round/oval face, definitely the baby face thing as I was carded into my late 40's! In college people always thought I was about 14. (I think being skinny is part of that too though. I'm sure a lot of Celiacs are underweight! I'm 5'8', very small-boned, & up until very recently my weight hovered around 110-115.)

I feel certain that Celiac is far more prevalent than it appears. I was diagnosed for the first time 2 weeks ago after a lifetime of symptoms. (I just turned 50.) One thing that fascinates me is how varied the symptoms are. It never occurred to me to connect my joint pain, migraines, anemia, diarrhea, fatigue & depression to a single source! (Nor to any of my various doctors, alas!) It was only elevated liver enzymes that sent me to the specialist who figured it out. Is there any correlation of specific symptoms to ethnic origin, I wonder?

My family gobbled these up (adapted from an old family recipe):

1 cup rice flour

1/2 c. potato starch

1/4 c. tapioca flour

3/4 tsp. xanthan gum

1/2 tsp. salt

2 tsp. baking powder

1 tsp. baking soda

1/4 c. butter (1/2 stick)-- cold

2 Tablesp. shortening such as Crisco

3/4 c. (or slightly more) buttermilk

Sift the dry ingredients & mix them thoroughly. Cut in the butter & shortening. Mix in buttermilk as gently as possible. Dough should be moist & slightly sticky so add more if necessary, a little at a time.

Roll out about 3/4" thick between sheets of plastic wrap or waxed paper. Chill until solid enough to cut. Preheat oven to 425 degrees. Cut with a floured cutter. Brush tops with cream if desired for a golden color. Bake 12-15 minutes for small cutter, longer if larger cutters used. The biscuits should be very light brown on bottoms, light golden on top (if wash is used). Don't overbake or they will be dry.

Hope they do the job for your gang!

Leah

Hi Lindy! I'm a mad baker myself so one of the first things I did after my endoscopy (even before the official diagnosis) was to head straight for the kitchen & start experimenting with different flours. Do you know about xanthan gum? It replaces gluten in recipes to help bind the starches, aid rising & keep the crumble factor down. You just need to use a little bit, so don't freak out when you see the price. It goes far. Also, run out and get some sorghum flour to use in the bread-- it REALLY helps with the moistness. Bette Hagman & Annalise Roberts have great baking books that will help a lot. I've made both biscuits/scones & yeast bread with enough success that my family ate them with gusto... actually the biscuits were gobbled up in no time, just like the old wheat ones! Now if only all those flours weren't so doggone pricey!

Happy Baking,

Leah

Thanks! I'd appreciate it. I am always willing to try new recipes and I love falafels.

I am sensitive to fat. It never really settles well with me.

I feel a little silly posting here since I'm 50! But about the veggie burgers falling apart, it occurs to me that the gluten is probably what binds the other kind together, & if it's anything like baked goods, it might help to add a little xanthan gum. And maybe some egg or egg powder. Both are good at keeping bread & cake from crumbling to bits. (I've been baking like a maniac since my diagnosis, just to prove I can still do it! It took a few false starts but I'm getting the hang of it.)

Good luck,

Leah

Thanks, I appreciate that tip. Lindalee

Linda Lee, if you are sensitive to red pepper, I'm afraid you'll have the same problem with cayenne-- it is basically ground up red pepper flakes. I always thought hot peppers in general were "good for you" nutritionally too, though of course they cause stomach upset for some folks.

Bones, I had the same experience with Kroger as you did with Lawry. I e-mailed them asking for a list of gluten-free store-brand products & they wouldn't send me one, (even when I offered to send them a notarized letter saying I wouldn't sue them!) but someone called & over the phone listed a bunch of things which I had to rush to jot down on an envelope... very impractical, I can't be sure I got everything exactly right, & of course, if any of the info was incorrect, I'd have no proof they gave it to me. Hmmmmm. At least they did tell me the aspirin I'd been taking (which I suddenly realized contained "starch") was okay. I just hope that was accurate!

Mart, it's amazing how a company would choose to use such dismissive & callous wording in a message to a customer! I have taken to including the phrase "Studies show that 1 in 133 people are gluten-intolerant" in my queries, just in case these companies dismiss us as a few isolated flakes... But at least they DID include some actual info...

Worse to my mind are the companies that are all smarmy & sympathetic in the opening paragraph & then give you absolutely no information. See my thread on Cover-Your-Ass-Girl.

I'm not going to let these slippery rascals get away with such useless non-answers. The very least I can do is make their lives miserable-- I refuse to shut up!

Listen to me-- I'm only 2 weeks into this diet & I'm ready to start a revolution!

Rise Up, Ye Celiacs, against the forces of Corporate Gluteny!

Leah

OH boy, this just keeps getting better. Here's my latest communique from the "Beautiful" People at CoverGirl:

GRRRRR. I'm sure my Dr. would write them but can anyone explain WHY he has to????? Or why the answer should take so long? (Please note that my very simple question was as follows: does Outlast Lipstick contain outsourced fragrances?)

Leah

Response (RightNow Administrator) - 06/09/2006 06:12 PM

Thanks for getting back in touch, Leah.

I can certainly understand your frustration in trying to find products that are gluten free because of gluten intolerance. As someone who suffers from allergies, I certainly appreciate why you're interested in ingredient information. In our Consumer Relations office, we're provided with the same ingredient information that you see on product packages. For that reason - and for your safety - we request physicians write to us with very specific information so that we can have it researched as thoroughly as possible.

Your doctor may send a written request on office letterhead to:

Consumer Relations

PO Box 599

Cincinnati OH 45201

Attn:

Be sure to clearly indicate the full product name, fragrance, color/shade as written on the product which interests you.

Once we receive your doctor's request, we'll research your inquiry and hope to provide a response in approximately four weeks.

Please understand that we have your best interest at heart by following a strict process for ingredient information requests. If your doctor is anything like mine, he or she will be more than happy to send the letter.

We appreciate your patience.

Pat

CG Team

Can anyone recommend some books to help me expand my limited gluten-free diet?

I eat the same things for breakfast every day (eggs, bacon, yogurt, gluten-free cereal, tea)

Lunch is usually potato with ham, broccoli, cheese, sour cream, or chili or left over dinner

Dinner: meat and potatoes or rice and a frozen veggie.

Snack: apples and peanut butter, peanuts, tostitos natural, popcorn.

Help, my stomach is bored but I'm terrified to try different things for fear of getting glutened!

Thanks,

Mia

Did you see the link to Epicurious? Using the advanced search you can get hundreds of gluten-free recipes, many from Gourmet or Bon Appetit.

Open Original Shared Link

And be careful of those frozen veggies if they have any sauce or flavoring.

Eat well & be well!

Leah

Anybody from the Triangle? I'm in Raleigh & would love to know some local connections.

Leah

Leah--I'm your age, having just been diagnosed last year after years of odd symptoms and illnesses. I had the exact same reaction as you did when I found out about Celiac and the many symptoms. It was like at that moment I had a reason for it all and I was not crazy.

Just this moment I was following a thread about varicose veins. WHAT, THAT TOO!?! (Copper deficiency it seems.) Had some since my teens, which struck me as strange even then. (I was quite thin & a runner so none of the usual causes applied...) It really boggles the mind. I still sometimes wonder if this whole experience is only a dream-- it just doesn't seem POSSIBLE for everything to connect so neatly after all these years!

It reminds me of the end of an Agatha Christie novel when the conclusion just seems TOO clever & perfect! I guess I must still be a little cynical. But reading this forum it really seems there's finally hope!

When are the non-specialist doctors going to catch on? I even went to a gastro years ago & got the good old IBS line. He gave me a drug that made me feel I was walking through molasses all day, it was worse than the diarrhea! I quit taking it after 2 days. But it never even occurred to me to mention to the gastro my migraines, joint pain, period troubles &c. Of course if I'd known they were connected I'd have known what I had!

It's all so wonderful & weird.

Leah

Yeah, it is absolutely fascinating how many bizarrely unlikely symptoms cluster around Celiac. When I was diagnosed the doctor went down only part of the list & I felt chills down my spine-- I had almost all of them! Nobody had connected the dots before. And when I came to this site I realized even more of my fun little collection of problems came from this. Brain fog definitely, mood swings, check! It was absolutely eerie. I'm 50 years old, have had most of the symptoms for most of my life, & only because my liver enzymes were high for no identifiable reason, I was finally sent to a really good Gastro & boom, all is explained. I'm ecstatic at the thought of getting better, & yes, just a little mad that it took this long to be diagnosed.

Two weeks gluten free since my endoscopy, I can't say I feel better yet, but I just found out my vitamin c had gluten & I suspect there's other sneaky stuff I'm missing. Anyway the prospect of health after a lifetime feeling like a wimp just blows me away.

Wild, isn't it? It almost seems too good to be true. And I say that even though I LOVE wheat. Wheat Thins yum, Triscuits even moreso, & Whole Foods harvest grain bread was one of my favorite foods in the world. Also I'm a baking fanatic. You should see my house at Christmas-- cookies by the million. But wow, if being gluten free is all it takes to feel like a normal human, GOOD-BYE AND GOOD RIDDANCE!!!!!

Welcome to gluten-free world!

Leah

Funny thing-- I too am 2 weeks trying to be gluten free, & my first restaurant experience was sushi (which went okay) then creme brulee! I explained my needs & asked the waitress to check with the chef & make sure there were no starch stabilizers in the creme brulee, which she did, so I ordered with confidence. I was somewhat shocked when the dish came out with a piroulline cookie stuck into it!

I've heard many stories of restaurants serving dishes from which they thought they had removed the offending item (croutons on salad, e.g.) not realizing (or choosing to ignore our pleas) that a trace is all it takes. So maybe you had cookie residue on yours!

I was a little deflated after that experience, but I've eaten out since-- at my favorite Vietnamese restaurant, a delicious salad with rice noodles & fish sauce-- get back on the horse, I say! But for dessert I'm sticking to chocolate, fruit, or homemade goodies for a while.

I just got Annalise Robert's book so I'm a little bakin' fool anyway!

Good luck, don't give up!

Leah

I too had both done on the same day. If you need both that is definitely the way to go.

To be honest, the day before was the hard part-- I am one who normally eats small nibbles basically all day long, & a day's fast was really tough for me (even with all the juice). The Fleet was really unpleasant to choke down on an empty stomach. And since diarrhea was one of my main symptoms, it was kind of overkill. I was supposed to take a pill on top of it & after 2 doses of enema I just couldn't. I was very weak & shaky by the next day, & I went in feeling frightened & spacey. The nurse was a little mad at me for skipping the laxative & made me worry I'd wrecked everything.

But from the moment they gave me the anesthetic I was completely out, & before I knew it the whole thing was over.

When I was more or less awake, the doctor went over the procedure & showed me pictures of my eroded villi & said he was pretty sure that it was Celiac but would wait for the biopsies to confirm.

I had virtually no discomfort afterward, though had a bad headache all that day & the next, but since I get headaches from not eating & from stress, I'm not sure I can blame it on the actual procedure!

Anyway I don't think any of the unpleasant part would change from having only one procedure. I say get the whole blame thing overwith!!!

Good luck. It's worth all this to know for sure!

Leah