celiac3270

Oh, I see -- that's a better mentality--yes, we all make mistakes at some point or get contaminated at a restaurant. Provided that you're not constantly getting contaminated or making mistakes, you should have no long term problems from getting contaminated rarely. Don't be as concerned if you make mistakes in the beginning--those are nearly inevitable.

I know--it's really frustrating. Blood work, though least invasive, is the most likely to find it if you have celiac. Endoscopies can miss celiac, since the intestinal damage could be patchy or only in certain areas.

Keep us posted

-celiac3270

I would advise you simply to get tested now, before you start the diet. If you are on a gluten-free diet for awhile, testing will not be accurate. Though you can get many different tests done, including biopsies, the least invasive is a blood panel. If you ask your doctor, you can get bloodwork done, which will tell you--this is better because if you just try the diet, it could take only a week, but it might take over a year to feel better from the diet--you just don't know, so if you don't get tested, you might, in a year, wonder if it might just take another month to feel better or if it's something else.

You cannot cheat. Cheating will set you back a great deal. If you've been gluten-free for a year and you accidentally eat gluten, it won't set you back all the way, but it could take weeks or over a month for your intestines to heal. You simply shouldn't do it, because cheating once every three months will continually set you back, making the diet less if at all effective. Additionally, untreated celiac (and if you cheat and aren't trying to be 100% gluten-free, it's untreated) can, in the long term, lead to future complications such as osteoporosis, diabetes, cancer, arthritis, thyroid disorders, malnutrition, anemia, and a multitude of serious problems. It's simply not worth it.

Finally, it's likely that you have celiac. You have the most common symptom, fatigue, in addition to other common symptoms: bloating, gas, belching...migraines can be linked to celiac. Also, 1 in 133 people have celiac, it affects 1% of the population, and yet, is untreated in 97% of the cases, usually because people aren't aware they have it and doctors don't test.

-celiac3270

Yes--and besides making breads, Kinnikinick makes other...bread products, such as muffins and donuts--that's why I provided the link: you'll probably find Ener-G or Kinnikinick in your healthfood store, but they have so much more than bread to offer.

I like Food By George, but they're really expensive and even though their brownies and crumb cake are good, I find that "homemade brownies" with a gluten-free mix usually turn out even better. I used to eat their english muffins every morning, but I found a gluten-free bagel that I liked...I think it's made by Sans Gluten.

Hi celiac3270:

Thanks for all that research on the products that list gluten. Is that the new labeling law that was passed. I live in California and have been waiting to see when it would take effect.

Thanks

Sally

No, no, that wasn't me . Richard (lovegrov) compiled this, posted it at Delphi, and I just copied and pasted the list from there.

Sure--I'll move it. And "sure" to your second question -- the whole point of that rule was just so that someone wouldn't post the same question in every forum to try to get many replies. But if you have another question, feel free to post it. I'll move this one.

All of us make mistakes every now and then--but a mistake once in awhile won't do long-term damage. These symptoms apply to long-term gluten intake--like what we were all ingesting before diganosis. If you do make a rare mistake, it will not put you at risk for these symptoms--but constant mistakes could be a problem.

About the FritoLays, I think it comes down to opinion. Three products made by FritoLays are now made on dedicated lines according to a dietician from FritoLays. It basically comes down to whether you believe there's gluten in them--I don't get symptoms from them and my biopsy a few months ago showed no intestinal damage when I was consuming large amounts of their potato chips daily , so I am not too concerned. It's up to you, though--just as it is up to you if you eat products that aren't made in a dedicated factory.

I found something else that's good. Go to the main page at Open Original Shared Link. Then look above the mini-calendar, I think, and it says "first time users click here." The third or fourth slide has a shortened list of long-term problems, which includes:

• Allergies & Asthma
  
• Anemia
  
• Arthritis
  
• Attention Deficit Disorder
  
• Autism
  
• Cancer (Gastrointestinal carcinoma or lymphoma)
  
• Diabetes (type 1)
  
• Epilepsy
  
• Fibromyalgia
  
• Kidney Disease
  
• Migraine Headaches
  
• Nerve Disease
  
• Osteoporosis
  
• Thyroid Disorders
  

A moderator had the second post removed because the board rules do not allow for duplicate posts under various sections. The topic can be moved, though. If you have other questions not related to food and would like it under the post-diagnosis section, I could move it for you....

I see what you mean--that site, besides selling foods, goes into a lot related to food -- weight gain, stomach aches, etc. I see what you mean. I just wasn't sure if you knew about the other sites....

Astyanax,

There are many long-term complications of ingesting gluten including: cancer, osteoporosis, thyroid problems, malnutrition and vitamin deficiencies, etc. There are two lists on celiac.com about diseases/conditions associated with celiac--a "probably" list and a "definitely" list. Many of these can come about as a result of eating gluten long-term:

The probably list

The definitely list

It's bad that the school won't accomodate to celiac, but I find it equally vexing that the student was allowed to arrive late at school due to increased stress and lack of sleep. It's ridiculous--in first grade I got up a little before six every morning to get the school bus--I lived the furthest away from school and I made the commute for seven years and never even considered such a ridiculous thing. There are people here, myself included, who have to go to work or school when they feel sick as a dog just so they don't fall too far behind and miss even more days--and then this parent has the nerve to drop the student off a half hour late every day because of lack of sleep...put the kid to bed earlier! Sorry to rant, but that aggravates me just as much as an unaccomodating school.

Yes--this is the entire message they send back. In the part I put in bold and red, they go into this long explanation about the Codex standard applying to the rest of their products and not being able to guarantee other products.

Thank you for contacting The Coca-Cola Company.

We are able to confirm that Coca-Cola classic, caffeine free Coca-Cola

classic, Coca-Cola C2, Diet Coke, Diet Coke with Lemon, Diet Coke with

Lime, caffeine free Diet Coke, Sprite, Sprite ReMix Berryclear, Diet

Sprite Zero, vanilla Coke, diet vanilla Coke, cherry Coke, Fresca, and

our 100% juice products (without added ingredients) are gluten free.

Additionally, we can tell you that all of our other products meet

Codex's definition of gluten-free, which is less than 200 ppm (0.02%)

gluten.  Codex has examined the data and determined that less than 200 ppm

gluten is below the level in which people with celiac disease would

experience adverse reactions.  However, at this time the U.S. Food and Drug

Administration does not have a regulatory definition of gluten-free.

We can assure you that the exact amount of gluten in these products is

very low - perhaps even zero.  Some minor ingredients in these products

are manufactured from plants that gluten-sensitive people could react

to, so we are unable to state categorically that they are totally

gluten-free even though they may have undetectable levels of gluten in them.

The Codex guideline provides a very low threshold for gluten content

and exposures below this level are not expected to result in damage to

the majority of gluten-sensitive individuals.  However, extremely

gluten-sensitive individuals should discuss consumption of these products with

their health care provider.

We hope that this information is helpful.

To answer your questions:

1. You are better off getting an official diagnosis if that is at all possible. So if you're on gluten right now or only gluten-free a few days, you might consider getting some bloodwork done before your intestines heal. You need an official diagnosis if you are going to do the tax deduction, though if you'd do that, food/medical must take up over 7.5% of your income...this won't apply to most. The military can't and won't accomodate to the gluten-free diet, so you cannot serve, but only if you have a diagnosis to prove that you must eat gluten-free. This is also important with schools--but if none of these things are important, then you don't need an official diagnosis at all--provided that you feel strongly enough about having celiac that you're willing to follow this diet for the rest of your life.

2. Yes--everyone makes mistakes once in a while, but if you are only half-gluten-free or you cheat on the diet, you are far more likely to get osteoporosis, cancer, etc.

3. GI doctor for medical reasons, nutritionist if you have difficulty with the gluten-free diet--they tend not to be too helpful.

4. Probably--there are stories here about insurance going up due to celiac

5. Depends on what deficiencies you might have. Folic acid is good to aid in digestion and a lot of people here take that. A daily vitamin is good, too--centrum is gluten-free.

6. I don't know about IBS

-celiac3270

No--I haven't used that site and I've never heard it mentioned here. Some commonly used sites include:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

...to name a few....others could provide you with more examples.

Here's the link to the Frito-Lays gluten-free list, updated March 1, 2005

Open Original Shared Link

Here's a part of the official Coca-Cola reply:

We are able to confirm that Coca-Cola classic, caffeine free Coca-Cola

classic, Coca-Cola C2, Diet Coke, Diet Coke with Lemon, Diet Coke with

Lime, caffeine free Diet Coke, Sprite, Sprite ReMix Berryclear, Diet

Sprite Zero, vanilla Coke, diet vanilla Coke, cherry Coke, Fresca, and

our 100% juice products (without added ingredients) are gluten free.

Come to think of it--yes...usually between 97 and 98.....

Yes--your intestines wouldn't be twisting as a child and then all of a sudden stop--this is ongoing and will not be present without symptoms of some sort--which is why they usually find it at birth--often a baby has a problem, such as projectile (or green) vomiting. So yes--you can rule out malrotation. Congratulations, your intestines aren't messed up structurally

Has anyone looked into www.unitedbuyingclubs.com ? I have joined a group of 7 families with food allergies and organic food preferences. Deliveries are every 4 weeks. We can split cases of food amongst the group, and take advantage of the bulk discount. The web site will help you find an existing group in your area, or information to start your own. The group leader has helped me find the best tasting gluten free foods.

Very good point--I have a celiac friend here in NYC and we live within....four blocks (less than 1/4 of a mile) so our parents coordinate when ordering online--same sort of thing, but on a smaller scale.

Yes--well-sorta. At first I thought if it had gluten you'd see wheat, rye, barley, or oats on the label--then I found out about modified food starch, flavorings, etc. Then it was a little overwhelming--but even before, too.....I'm getting a little specific here, but--yes.

Oh, that's so nice! Glad you could have a care-free meal on your b-day!

This is a doctors list for the US as recommended by other celiacs: https://www.celiac.com/st_prod.html?p_prodi...-38105041667.75. Here's what the list says about Nebraska:

Nebraska

Ed Schafer, M.D.

Department Head at UNMC

University of Nebraska

Ddepartment of Gastroenterology

Tel: (402) 552-2600

David Watts, M.D., Dermatologist

2808 S. 80th Ave.

Omaha, NE

Tel: (402) 390-0333

Here are support groups, from this link on the celiac.com site:

Nebraska

Grand Island - Support Group

Contact: Keith McTavish

Central Nebraska Celiacs

P.O. Box 411

Wood River, NE 68883

Tel: (308) 583-2949.

Grand Island - Resource:

Contact: Diane D. Epp

Box 595

Henderson, NE 68371

Tel: (402) 723-4759

Lincoln - Support Group

Contact 1: Beckee Moreland

Star City Area Chapter (CSA)

1639 Sunset Rd.

Lincoln, Ne 68506

Tel: (402) 441-9621

E-mail: beckland@inebraska.com

Omaha - Celiac Sprue Association/USA

Contact: Mary A. Schluckebier

PO Box 31700

Omaha, NE 68131-0700

Tel: (402) 558-0600

E-mail: csaceliacs@csaceliacs.org

Omaha - Support Group

Contact 1: Lynn Samuel

Midlands Chapter (CSA)

6303 Kentucky Road

Papillion, NE 68133

Tel: (402) 339-1346

E-mail: samuelynn@home.com

Contact 2: Rebecca Warren

Tel: (402) 235-3576

Contact 3: Craig McIntosh

2817 MacIneery Dr., #1203

Council Bluffs, IA 51501

Tel: (712) 366-4602

E-mail: craigm@dtn.com

Seward - Resource:

Contact: Mary Schluckebier

1616 Plainview Avenue

Seward, NE 68434

Tel: (402) 643-4340

Yes--Tropicana has the convenient number policy.

As a previous poster said, all 100% juices are gluten-free.

I know this wasn't on your list, but V8 is also gluten-free.

All softdrinks made by Pepsi, Co. are gluten-free, including Pepsi, Diet Pepsi, Caffeine-Free Pepsi, Diet/Caffeine-Free Pepsi, etc., Mountain Dew, Pepsi One, Slice, Mug Root Beer, Wild Cherry Pepsi, Pepsi Twist, etc....and whatever others I missed.

If you e-mail Coca-Cola, they will send you their list, which includes Coca-Cola Classic, Diet Coke, Diet/Caffeine-free Coke, Caffeine-Free Coke, Coke with Lime (and diet, etc.) , Coke with Lemon (and diet, etc.), Sunkist, Sprite, Diet Sprite, etc........I missed many--

7-up is gluten-free.

Accidentally double posted--and just deleted the duplicate information.

Yes--they didn't even come close! I'd write back and tell them this and ask them to please answer your question...and I don't believe there are degrees of celiac--you have it or you don't--some may have symptoms with small amounts and some might not, but all of us are equally celiac.