PattyBoots

I got an email on April 19 from Prometheus stating that they will discontinue the genetic testing as of April 30 and the myceliacid.com address will be shut down on May 18. Also, directly from the email: "Prometheus will continue to offer celiac genetics testing which can be ordered by your healthcare provider." IOW, you'll no longer be able to order it on your own, but you can try to get a doctor to order it. I'm sure it has something to do with the insurance companies getting their knickers in a knot.

I had the test done; I'm glad I did because I have both the DQ2.2 AND the DQ2.5 genes. Explains a lot for me and my family history.

Hubby loves me; this I know. But, he's not especially educated and so doesn't understand the need for COMPLETE adherence to the diet. He doesn't "get" that I don't want to (forgive me) slap tongues with him after he's been drinking beer. He's all for me feeling better, but doesn't understand "just a little bit won't hurt you" WILL. I intend to try to get him to go to my next doctor appt. since that weight will count for more than his perception that "She's on ANOTHER diet." He doesn't get my thyroid issues either, but that's a whole 'nother post.

Pacific Natural is gluten-free. It is very cost-friendly at Costco but can be purchased at Walmart. It comes in a resealable carton and is delish.

I wonder if this is why I got to be this old (46) before REALLY having problems. I remember telling one doctor that my idea of convenience foods was frozen vegetables. We've always eaten at home, and FAIRLY simply. I can't do the "cook for the week" thing because if it's not fresh, I can't eat it. Can't stand leftovers unless I turn them into something else, which is why I'm known as "The Leftover Queen". And if it's not something I want to eat, forget it. Never been a "mindless" eater or just poke stuff in my face. I've always rather gone hungry than not enjoy what's in front of me. *shrug*. Not trying to be smug, but, I ENJOY food. We've just never been "pre-packaged" kind of folks so it was a LOT easier.

We had grilled wings, Italian stuffed zucchini and bacon green bean bundles tonight. All naturally gluten-free (well, I do replace the croutons in the zucchini with herb seasoned Chex), tasty as hell, and on the table in less than an hour.

Please don't think I'm flippant, BUT -

Since you're already in Baltimore, perhaps you could call the UM Celiac Center and see if they can help you.

I'm reasonably certain I've had outbreaks of DH. Several years ago I had an awful, suppurating rash all across my stomach and down my arms, and another time on my sternum. I went to the derm, who looked at it and said, "Oooh. Nasty rash. Bet it itches." My reply was, "Uh huh. What is it?" He literally shrugged his shoulders and said, "I dunno. Here's some cream. I doubt it'll help, but you can try it." He even had a couple colleagues come in and look. They were all dumbfounded. So I tried the cream, and of course it didn't work, so I went to the other derm in town. He called it eczema and that it was probably stress-related. At the time I was caring for my mother, who was wheelchair bound due to having lost a leg to bone cancer AND my dad, who was dying of lung cancer, so it made sense. When I would sweat, oh, how it would burn. And now, after seeing pics on the 'Net, I can guess that's probably what it was. It finally went away after about a year, but that year was miserable.

It's probably a good thing Mom's gone, because I don't see her accepting this at all. I can hear her now, "That's the stupidest damn thing I've ever heard of!" and roll her eyes. And head to the kitchen for a cookie.

Thanks all, for the help.

I guess since I LITERALLY have no family - they've all died, and I suspect my mother from undiagnosed gluten issues, I really don't give a rat's ass if anyone is offended anyway. Having worked in the food service industry years ago, I don't like going out to eat anyway just because of the filth. Although, there is ONE pizza chain I'm partial to and that's going to be tough. Especially since I only got it every 3-4 years to begin with.

In the next two weeks I will be moving into a brand new house. Nobody has EVER lived there. Just as my husband understands there will be no smoking in the house (and it's a lot easier coming to that understanding since I'm a FORMER smoker), there will be no gluten in the house. Oh, okay, he can have beer in cans, but that's it.

I'm new to the gluten-free diet, but not new to the "picky" diet.

Whenever anyone has ever offered me anything I didn't want/didn't like/gave me troubles, I just said "No thank you." I never offered a diatribe. I never tried to educate anyone. I just said, "No thanks." They moved on. No questions asked, no questions answered. Even when they "pushed" I just simply said, "No thanks." and they said, "Okay".

I was hoping that my GYN having trained in Canada would make him be more open/sympathetic to ordering the panel. I'm 46 years old, so I suspect I'm probably a good way along the way to ruinous damage if I do have the disease.

I forgot to mention a few things - I also have scalp lesions and neuropathy. The neuropathy pretty much came on suddenly a few weeks ago (other than what I call "firefeet" due to early menopause). The neuropathy has improved due to 5000 units of sublingual B-12 daily for the past week and a half. My mother ate gabapentin (Neurontin) like candy the last few years of her life due to neuropathy. They told her she had "narrowing of the spine". Also, mom, grandmother and great-grandmother had "huge knuckle" arthritis. Their hands looked like something out of a horror movie and that petrifies me, too.

I'm self-employed and self-insure and as such have a $7,500.00 per person deductible. I've been reluctant to have any tests due to the whole pre-existing condition. I know that's not an issue now, but if some people get their way, it will be again.

Bring in your genetic results and push hard. In Canada you can also get a Biocard test kit for $50. Open Original Shared Link As Raven pointed out, as well as a celiac blood panel the correct test is an endoscopy with multiple biopsies to look for villous damage.

You could almost just ignore the docs and go gluten-free based on your genetic tests alone. DQ2.2/DQ2.5 means your body is likely not fond of wheat even if you're not far enough in the celiac process to get a lot of positive test results.

I had the gene test done and came back DQ2 Homozygous.

Alleles detected:

DQ2.5 (HLA DQA1*05:DQB1*0201)

and

DQ2.2 (HLA DQA1*0201:DQB1*0202)

From my rudimentary genetics classes in the 80s, along with the Wiki entries, that in and of itself is pretty damning.

My teeth are horrendous. My mother, her mother, and her mother before her all had lost all their teeth by Age 18. Mom had 5 miscarriages in 3 years. My grandmother dropped out of high school due to eczema.

My mother was always painfully thin (never more than 100 lbs. at 5'5") and was diagnosed in the 1960s with ulcerative colits. She underwent a total proctocolectomy and ileostomy in 1971 at the age of 31, eventually getting a Koch pouch at Cleveland Clinic in the 80s. But she was still always sick and weak and depressed.

Until the last couple of years, I felt pretty good. I've had issues with eczema and undiagnosed rashes, which looking back very well may have been DH. I had a thyroid issue which I couldn't get a doctor to diagnose so I went to a local health fair and got my blood drawn. I took the results to an endo, who went, yeah, you've got a problem; here's some Levoxyl, come back next year. But, here lately, I hardly have the energy to walk across the room. I have vertigo so bad I can't drive. I wake up exhausted. I don't so much as have the D, but I go a lot. I used to only go every 2-3 days, now it's 2, 3, 4 times a day and whenever I go anywhere I immediately identify where the bathroom is "just in case" because it can be urgent. (Sorry if TMI!) I have to remind myself to unclench my teeth constantly because I seem to be on tinterhooks all the time. I've gone from a very tight Size 20 (eek) jean to a loose 16 in just about 3 months. People who don't really know me and see me once or twice a month are commenting on the weight loss.

I asked my GYN for a celiac panel, expecting him to cooperate since he trained in Canada. Ha. He's all, "you need a colonoscopy". I am petrified of gastro doctors after watching what hell my mother went through for 40 years. I would jump off a bridge before I'd sh*t through a hole in my side. If it works for you, I'm happy for you, but there is no way in hell.

Anyway, with celiac being the "disease du jour" doctors just won't listen. But I don't think I'm crazy to think that I could very possibly be celiac.

Opinions, please? (And sorry for the length )

I'm in the midst of baking a loaf of Gluten Free Pantry French Bread and Pizza Mix and the smell is horrific. Forgive me, but it smells like vomit and my stomach is rolling over. I can't open the windows and air it out because it's 90+ degrees here and I do enough air conditioning the outside with three dogs wanting in and out all day

This is my first bread ANYTHING since going gluten free immediately following Memorial Day weekend. If it's all like this, then I'm going to have to do some serious reworking of my menus. I'm dying for bruchetta. I guess I could just dip chips, but it's not the same without a crispy baguette rubbed with garlic and olive oil and toasted in the oven.

Cherry tomatoes aren't just for salad - sautee them quickly over high heat in butter or olive oil (or a combination - YUM), seasoning liberally with basil (fresh if you have it) and salt and pepper and garlic, until the skins crack. Great by themselves or on pasta.

I suspect the "don't eat the freaky gluten-free bread" comes from not wanting folks to pay $5.00 for a loaf of bread just to find out it doesn't really taste like bread.

Don't get me wrong - I LIKE Pamela's pancakes. But they'd be a "choice," not a "requirement." They're too damn sweet.

WOW!

I can't understand how they were that "gruff". It would seem to me that they would be more than happy to be rid of "a problem child" by letting you eat off campus. I know that would have been the easy route taken by administration at WVU in 1982-ish.

I don't mean to be evil, but ... think about what you have always made. Was it pre-processed stuff? Then you have a lot of relearning to do. Otherwise, most everything is easily adaptable.

For example, I made the most delicious chicken tonight. Chicken pieces with the skin on - pull the skin up and slide fresh basil leaves and garlic underneath (I don't find this to be "fussy" since it's that-time-of-year for basil), along with minced garlic. Take a lemon and slice off 4 pieces and put them on top of the chicken. Squeeze the rest of the lemon over the chicken. Bake at 400 degrees for 40-60 minutes. Throw some potatoes in the oven next to the chicken pan - bake until done and serve w/normal accompaniments. We had salad to go with - lettuce and spinach and tomato and peppers and mushrooms ... it really IS easy once you get unafraid of "cooking" as opposed to "throwing stuff together".

Well, the deer got the main garden - poor things are so encroached on with all the development our 50 acres looks like paradise to them, I suspect. But what we just said the hell with and put in pots strewed about the fenced-in dog yard seems to be doing well. Lots of cherry tomatoes - off one plant! And we'll soon be overrun with habaneros. Lots of basil. A fair amount of cherry peppers and *crosses fingers* green peppers if they don't peter out. The cukes just croaked - even the gorgeous lemon cucumber, which are delightful if you have a "problem" with cukes - no burpies! It was too wet to plant green beans, which normally go bonkers here; good thing we still have pints and pints and pints put up from last year!

I finally screwed up my courage and tried the brown rice elbows tonight. First pasta of any kind I've tried since going gluten free June 1, 2009. I was utterly petrified. We've never been big pasta people anyway, so doing without wasn't that big of a deal, except I really, really wanted mac-n-cheese to go with my ribs tonight. So, I did the "boil for two minutes, then set off, covered" cooking style. I rinsed it in cold water and it was still kind of tough, but I was hoping that since I would be baking it, it would be okay. I tasted a piece of it, and really, was stunned. It tasted JUST LIKE WHEAT pasta. I gave a piece to DH (who had no idea I'd cooked something "weird"), and he was, "Yeah, it's noodles." Paired with my usual cooked sauce (replacing the flour with half the cornstarch), and into the oven, it truly was indistinguishable. What a friggin' relief!

If WF is going to charge $10 a loaf, it really should be gold plated.

Just sayin'

It would at least be an ATTRACTIVE doorstop, eh?

If she's 36, that ain't "Daddy's little girl". That's "Daddy's little b*tch".

I'm a firm believer in the mantra a very wise man said, "Be Who You Are and Say What You Feel Because Those Who Mind Don't Matter and Those Who Matter Don't Mind."

Stand your ground and tell her that if she's not going to respect you and the way you keep house, she can just go sweat herself to death somewhere else because YOU'RE the one doing her a favor, not the other way around. If she gets huffy and leaves, that's HER problem.

That is truly awesome - that he TRIED. I'd be extra special to him tonight *wiggles eyebrows* if you're up to it. Then again, he just might mess stuff up on purpose just because, if you know what I mean. But that is really, really sweet. If he cleans up the mess, that's even sweeter

I'm so glad someone else is in the same boat - I think the corn tortillas taste like unadulterated crap. I'd rather do without ANYTHING. Since I've never been a bread-y kind of person, it's been pretty easy; always eaten like 2 sammiches a month. But egad - the corn tortillas SUCK.

Thanks, guys! Much better now that the Cipro's kicked in.

And, ABSOLUTELY ix-nay on the bubble bath (or bath, period) with a UTI.

Besides, I never take a bath - it grosses me out. It just always seemed like I was sitting in a bucket of dirty water, even if I showered beforehand.

I wonder if I could substitute Feta for the oaxaca cheese? I don't know what got into me the other day at Costco when I bought a giant vat of Feta ...

The rolls look DELICIOUS!

I am totally, utterly miserable today. I have a UTI, the big "C" and granny's doing doughnuts in her red Corvette on the other side of my intestines (you ladies know exactly what I mean). I took a couple Uristat but they haven't kicked in yet. And when DH gets home if I try to say anything about it, he'll just look at me, hug me, tell me TMI and go play with the dogs. Oh, well, I guess it could be worse - it could be on both ends. I was up most of the night with my teeth thumping. It was like there was a disco going on in my mouth, but at least that's abated. Going to the dentist on the 7th, but not holding out much hope - my teeth are trashed.

Thanks for letting me vent.

This is what I'm afraid of about mainstream getting "on the bandwagon" so to speak. They're gonna half-ass it because it's seen as a fad/trend/whatever and it's going to get to the point where you can't trust ANYBODY because there's a buck to be made and by gum they're gonna make it! Look how many things were labeled "Atkins" or "South Beach" just to make a buck ... but those were food CHOICES and if you cheated on Atkins, nobody but your scale and your pants knew.

I've only been dealing with this PHYSICALLY personally for about six weeks now, but have been dealing with it familial-y since 1966 due to my mother - she was undiagnosed, but if there was a textbook for Celiac, she would have been on the cover. I'm preparing to do the genetic test just to soothe my mind that SHE had it. I purposely glutened myself yesterday as a check, and believe you me, I won't be doing THAT again.