celiac3270

Thank you

I just got back and I typed out a very long post about it......and then I hit add reply and my connection starts to go and it didn't go through....lost it all

Yes--I've never had an issue with their fries.

Jessica, I wasn't suggesting that they were lying--just that the fries were gluten-free unless the corporation was taking the great risk of lying to customers who could get very sick as a result. I also think that if they weren't gluten-free, we'd all be complaining about contamination; in reality, very few of us here have experienced contamination at McDonald's at all, let alone every time we visit.

All right, bye everyone!

Open it up . Basically, it's a survey...after awhile you become friends with some here and good acquaintances with most, so it's interesting to learn more about them...lifestyle, spouse, children, location, age...that type of thing. It's fine, though, if you don't reply to such threads....this is information that is open to anyone who wants to read it and has an internet connection, after all.

Okay, I've summarized your questions into shorter, more compressed questions. Tell me if you'd prefer that I phrase your question differently than what is below:

• How, if at all, is the medical community emphasizing to their physicians, the importance of testing for Celiac? Also, how is the medical community emphasizing that Celiac appears in so many different ways? After all, there are over 200 symptoms!
  
• What vitamins should Celiacs be taking, in particular, those who went many years undiagnosed?
  
• Do you think it will eventually become mandatory in the United States for doctors to screen children for Celiac?
  
• Why are doctors sometimes so reluctant to consider celiac disease as a cause for a patient's problems? Additionally, can you explain the reluctance of doctors to order the simple blood test for celiac disease?
  
• Can we somehow reduce the number of years it takes for someone to get diagnosed with celiac disease? [that would be raising awareness and educating doctors, I suspect]
  
• Will the medical establishment be more combined with regards to Celiac disease and all the related conditions and diseases that go along with it? With all the related problems, many Celiacs need to see multiple doctors, who don't show much cohesion. Also, who can you go to to fit all this together for the best course of treatment?
  

Okay--I have all the questions written down in the notebook I'll also be taking notes in. In the situations where some of you asked multiple questions, I might not be able to ask all of them in the 20 min. Q & A period, but I'll try to phrase the questions in ways that...compress the most important information into them.

I will check tomorrow morning, but we have to be there by 8 sharp since my mom is doing the bloodwork then. So, though I doubt anymore questions will come by then, tomorrow around 6:15 will be the last time I'll check! So if you want medical professionals to answer your questions, post them now!

From Jessica's support group (USA Silly Yaks):

A registered dietician took 12 containers of rolled or steel cut

oats that represented 4 different lots of three brand names. The

brands being McCanns, Country Choice, and Quaker.

The ELISA R5 test was used on the 12 samples. All of the brands

showed contamination!!!

McCann's

1st- below level of detection (so under 3ppm)

2st- below 20ppm

3nd- 23ppm

4rd- 725ppm

Country Choice

1st- below 20ppm

2nd-4th ranged from 120-210ppm

Quaker

All four tested from 338-1807ppm

Under 20ppm is the codex standard used to determine Gluten

free.........but all of the brands showed some crazy levels of

contamination and were inconsistent. I wouldn't trust them!!

So...no oats for me!

A small bit in this article on the celiac disease article from last week and about how it should've mentioned some more about the symptoms:

Open Original Shared Link

Modified food starch doesn't have to be made of wheat. It is sometimes gluten-free, sometimes not...you just have to check.

The bloodtest would probably be a TtG IgA, but you can ask to make sure. In that case, a 17 would be definite.

The FritoLays gluten-free list was updated on March 1st.

Open Original Shared Link

Products Not Containing Gluten

Last updated March 1, 2005

BAKED! CHEETOS

With the questions about physician awareness arising, here's an article:

https://www.celiac.com/st_prod.html?p_prodid=1132

I would go but that is when I am having surgery, and I can't go out of town then.

Surgery? What's the surgery for?

I went to the GIG conference three years ago and loved it. Lots of good information and vendors and meals you don't have to worry about.

Much, much better than the CSA, right Richard?

Hmmm...I would love to go to something like that...I'll start working on my parents

Yes , this too shall pass.

Yep...that can be problematic. There's a list of contamination problems at Delphi, linked Open Original Shared Link And the telephone is on here....also the keyboard of your computer. Then there are a lot of obvious ones: the silver drawer, putting gluten-free food on the contaminated counter, etc. This might help? And see if your family can get involved, knowing that if they cooperate, their mommy will be a lot happier and won't have to make as many bathroom stops . And if you have one of those days (described above with the bread), tell them to ask daddy to help them with the bread

Once again, I hope you can get your health on track

-celiac3270

Awww...I'm so sorry to hear that you can't shake your symptoms completely . Feel better! You said your antibodies were high....but didn't you say awhile ago that budesonide might contain gluten, or was questionable? Oh well--I'm not a doctor--feel better, though.

Open Original Shared Link -- very, very, very short

Open Original Shared Link

My results got back from the lab pretty quickly, but the doctor took a couple days longer to contact me about them. Well, if the average American celiac has the disease for 11 years before getting diagnosed, I guess a few extra days isn't that big a deal.

It is very overwhelming at first--and depressing for that matter--to cut out all those foods and try some gluten-free foods that are...mediocre at best! A few months, though, and you'll know all your favorites, have to think only twice (not 4 times) about what you can eat. Just hang in there. Also, you'll be told sometimes, that you need to go 100% gluten-free immediately. My GI, though, is giving a talk at the celiac conference in New York about how you'll go crazy trying to be 100% gluten-free the first week...it's better to ease your way into it and really plan. Don't worry about the Rice Krispies...nearly all of us (myself included) had a couple slipups in the beginning--right now, just try to work out the kinks.

Oh...I don't know if they have nametags. If so, then yes--and if you see someone wearing a "celiac3270" nametag, it's probably me! Are you sure you won't make it? There are still two days before the conference.

Oh yeah...I'm sorry--that was 10:30 AM my time not your time.

Your post should appear immediately. Additionally, when you post, you should be taken to the post after hitting "post new topic." After that, it will go towards the back of the section. When a moderator sees it and it is moved and/or pinned, it will move to the front of its respective section.

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The last post you made was a reply to another topic at 10:30 AM. No posts went through around noon. Here are all of your posts: Open Original Shared Link

This might be the post, anyway though. It was about still being sick. It was posted at 10:30 AM: Open Original Shared Link

Because celiac causes malabsorbtion, the calcium isn't being absorbed--and it's going to the fingernails in those deposits instead.

Yep...I'm not Jewish, but I definitely like Passover . Let's see...everything that says Kosher for Passover is gluten-free, provided that the ingredients do not mention, Matzoh, Matzoh Meal, Matzoh Farfel, or Cake Meal. Additionally,

I didn't stock up at all this year , but last year I got a lot of chicken broth (made by "Manischewitz"...it's gluten-free year-round, though, I later found out) and the Manischewitz macaroons. There's probably a lot more to be found, but that was all I looked for.

Here's a quote about another problematic ingredient (from another group):

HOWEVER, since some very observant Jews will not eat any cooked

product that requires matzah (usually in the form of Matzoh Meal,

Matzoh Farfel and Cake Meal) to come into contact with water.

Therefore some foods have additional labeling called NONGEBROKTS

(Yiddish "gebrokts" means "broken matzah"). STAY AWAY if the label

says GEBROKTS.

NONGEBROKTS labeling on Kosher for Passover foods means that no piece

of matzoh that soaks in a liquid is included as an ingredient, and

therefore is Gluten-free! Examples of such foods are some of Dr.

Prager's Passover products, Cindarella Sweet's Shabtai Gourmet

cookies and cakes, and Lieber's Matzoh Balls (made with potato

starch).

Also links to two posts from listserv on gluten-free kosher foods:

Open Original Shared Link

Open Original Shared Link

White specks on your fingernails are calcium deposits and are related to celiac. On some symptom list on this site, they are listed. I have them on my fingernails also.

More articles:

Open Original Shared Link

Open Original Shared Link

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Amanda, the conference is at Columbia Presbyterian up around 165th. It is close, but unfortunately, even the extended deadline ended on March 25th. Perhaps e-mail the person who is organizing the event, since they didn't seem to be filled up at all. Here's the e-mail: Open Original Shared Link...and the link to sign up is here: go to the second one down, I think: Open Original Shared Link

Deb--that's a very good question...

Judy--I wrote your's down also.

Debbie, I think the questions you have can (in some cases) be rolled together...I'll post replies to both of your questions.

And anyone w/ q's...post them before Saturday morning!