Lynayah

So at what degree of being Celiac is a person considered to be disabled ? Or not ?

Thank you for posting this -- I hope your question will receive many replies. I'll be watching! I have an interest in this from an HR perspective.

Lynayah--Hubby does really care too. We both have adapted to his chronic condition and I would much rather deal with gluten than what he has had to deal with in the last 4 1/2 years. We'll get through it. I know what you mean, I've glutened myself before too! Last dumb one was eating some little milkyway bars I stole from the kids halloween candy. Later I realized they were not safe. It's nice to have you to talk to for support.

I so get it. What a crazy life we lead, yes?

I cling to the belief that everything happens for a reason. I must believe that my going through this is for the best, even if I do not understand all the reasons why right now.

Every night, I send hope that others will learn from my mistakes.

Somehow, that makes it all okay -- at least a little.

The website that has the pizza recipe is a wonderful woman who collects all of those. She's a low carb-er, so a lot of the recipes on the site are grain free.

I got a lot of recipes from the Atkins website too. The first phases are all grain free, so naturally gluten free.

Here's a good hamburger bun. I quite like a nice bacon and tomato sammich with these. They can be messy, but they're yummy. It's "eggy" to some tastebuds, but I like 'em! :-)

IMPROVED REVOLUTION ROLLS

4 egg whites

1/8 teaspoon cream of tartar

3 egg yolks

1 teaspoon granular Splenda or equivalent liquid Splenda

Pinch salt

3 ounces cream cheese, softened

Beat the egg whites and cream of tartar until stiff. In another bowl, beat the egg yolks, Splenda, salt and cream cheese with a mixer until smooth. Gradually fold the yolk mixture into the egg whites being careful not to deflate the whites. Spray a baking sheet or muffin top pan with cooking spray. Divide the mixture into 6 mounds then flatten them slightly. Bake at 300

I felt the best I have felt in awhile last night. Where I had not eaten my blood sugar dropped way low and I was a royal b***h. I cooked dinner and actually felt really good after. I was hungry later and ate some nut thins and even ate some icecream. I did not start getting any heartburn until around 2:00 am, took 4 tums and went to bed. Feel good for the most part this morning. Doctors office called to tell me what I already knew and to urge me to take the kapidex for at least two weeks and if it did not help call back. Recheck what I could be doing different since my gliadin antibodies were still high. They don't want to order the hida scan, but will do a scope if I insist enough. I was told if I have an ulcer or gastritis that they would have me take the kapidex anyway. I just don't want to mask something with pills in the event something else could be wrong. Maybe I am looking to far into it. I suppose if it is cc it could have taken this long to build up. It is just taking so long to feel relief. The stomach distension/discomfort has subsided for now though. I just don't know what to do. I discovered a few nights ago my dried cranberries on the computer desk. I asked who was eating them (I don't usually care). MY oldest son had and I then questioned him further and he had been eating goldfish crackers and going back and forth beteween containers. He was sorry, but I told my husband he needed to watch them better. Also hubby was emptying some pretzels out of a tub into a bag and then turned around to empty the diswasher! I told him to stop and wash his hands first! It really makes me wonder what goes on when I'm not home (at work). He should know better! They all know that the gluten free stuff is on the bottom and middle shelf of the pantry. I don't care to share things but they don't need to contaminate it. I believe everybody else in the house, after I started feeling better, has gotten a little lazy. Until now I just didn't know how much. I've already warned my parents how things would be when they come to visit. Basically my mom gets it but dad does not. As long as we keep him out of the kitchen things will be alright. I also don't know how to deal with visiting my inlaws. The weekend in Jan. that we went I started having symptoms the next day. I did eat her food and hubby said he watched her carefully. That does not mean the stuff was not contaminated. We were already having a strained visit (her and I) so I know if I refuse to eat her food she would make the visit very uncomfortable. I don't want to come off as the bad guy, but have really decided it is not safe for me to eat anything there that I don't make myself. Then of course I get to hear about her brother's mother in law who is celiac, but eats regular cake and is fine. So she is hinting that she thinks I'm neurotic. Things are changing, I just hope everyone weathers the storm!

It can be hell, no two ways about it. I'm still going through it. Last weekend, hubby and I cooked together, and I couldn't believe how many times I had to remind him how not to cross contaminate things. He doesn't mean to do things wrong--he really cares! Yet, years of doing things the "other way" make it difficult for him to get it.

Example: He peeled some onions and then threw the peelings away . . . but it did it by tapping the container against a surface that might be glutened. Then he started to reuse the container. If I hadn't been watching, and if I hadn't warned him not to do it, he would have done it, and I never would have known about it.

One of the most frustrating things about having to adapt to all of this is trying to figure out WHERE THE HECK the gluten is coming from . . . this is but one of many examples of how easily it can happen . . . even with those who love us and care about us.

Heck, I've done it to myself! Mistakes live everywhere, alas.

Old dogs, new tricks. It's TOUGH, really, really, really TOUGH!

I'll hang in there if you will! Sending a hug.

Update on that pizza recipe ............

OMG it's fantastic!

cream cheese/eggs/parmesan/mozarella and italian seasoning for the crust.

It's an amazing tasting pizza!

tytytytytytytyty!

I will never miss pizza again!

Now.....can anybody do something about hamburger buns...........

Everyone that hasn't tried that recipe - d-d-definately needs to try it!

Hats off to the one who came up with THAT one!

I can't wait to try it!

I was first diagnosed 8 yrs ago with the blistery rash. After 2 years gluten free I found that eating gluten no longer caused the rash. After a few yrs on gluten I started itching and having a milder rash if I over did so I kept to moderation.

In Oct 09 I started having the bowel issues, followed by edema and now have a multitule of malnutrition / malabsorption issues. so the moral of the story being that even though my styptoms changed/ became milder didn't make it go away. It still damaged my body. And ignoring didnt make me stop being a celiac. I was just a celiac in denial. I'm back to gluten free and will stay so this time. Lesson learned.

Excellent post, Squirrelflight. Thank you -- I hope your post will help many others, which means your lesson has a reason.

I am sorry you had to find out the hard way that you needed to stay gluten-free. Medical science has soooooo much to learn where we're concerned. How wonderful it would have been if someone knew how to counsel you appropriately--to warn you not to try to go back to "the dark side." All too often, we must learn the hard way, or no way.

Thank goodness you are now on the other side of things.

I am technically gluten intolerant, not celiac, and have had a remarkable lessening of many arthritis and neurological symptoms since going gluten free about 7 years ago.

I wish somebody had been able to figure this out earlier for me, (and the last neuro = idiot who told me I did NOT have a food problem, when I kept telling her I had done an elimination diet carefully and proved to myself that I did, plus she lied about some test results ) but at least I'm not in a wheelchair, able to still participate in outdoors activities, and I can eat a lot of other yummy food now that I couldn't before, and I can still do a lot of other activities.

I don't know if you have any symptoms and don't realize it yet, but be thankful for the lack of damage.

Like you, I still can't believe how much better I feel now. I was sinking and in horrible, HORRIBLE pain to the point of barely being able to walk, plus countless neurological issues. I have little doubt that if I hadn't finally received a correct diagnosis, I might have been told I had MS. No one could figure out what the heck was the matter with me.

Roda, you ROCK! Keep up the good work! Please keep keeping us advised.

Many others here are going to learn from all you post. Everything you are going through will not be in vain. You are a blessing.

A little harsh there. The OP stated clearly that drinking is not a regular activity for them, but everyone wants to be included in a celebration. We lose so much food culture and we lose our freedom to eat out and eat at parties safely. It's hard to go into a social situation and not know what you can and can't have. It wasn't at all about a "need to drink alcohol."

There is nothing wrong with wanting to have a drink with your friends at a celebration and feel sad about being left out. I'm not a big drinker by any means but I do LOVE good wine and really good high quality beer. I sobbed like a baby about not ever being able to have Guinness again even though I only drink it maybe TWICE a year. Knowing I can never ever have that experience again made me sad.

There ARE things that are about the food or the drink or whatever and that's just the way it is.

Guinness: I know how you feel! I've only had it a couple times in my life, but I miss it so much.

Wow, great info! Thanks, Mr.!

Hi, Jamie:

A lot of folks think that gluten-intolerance is just a little thing compared to celiac, or they may think that celiac is something separate from gluten-intolerance, but it is not. Celiac disease is a form of gluten-intolerance. Celiac IS gluten-intolerance (but gluten-intolerance isn't always celiac disease).

As stated in the book Healthier Without Wheat, by Dr. Stephen Wangen:

"Gluten intolerance can be divided into two general categories: Celiac and Non-Celiac . . . Celiac disease itself is only the tip of the iceberg when it comes to gluten intolerance." He also says, "As difficult as it sometimes is to find a physician who is well versed in celiac disease . . . it is even more difficult to find a doctor who is aware that patients can have a gluten intolerance but not have celiac disease."

When I was first tested for celiac and it came back negative, my former doctor told me that I didn't have celiac, so I didn't have to worry about eating gluten!

WRONG! Sadly, he didn't know how important it was to also look at my gliadin level.

Thank goodness, I found a doctor at the University of Chicago Celiac Center who understands.

Healthier Without Wheat is a really good book to read if you are non-celiac gluten intolerant.

a possible resource:

Open Original Shared Link disease=2&hl=en&ct=clnk&gl=us

Someone posted a card that speaks of needing gluten-free food, written in Arabic. If you click on it, it comes up larger and you can print it.

I agree that whole foods are the easiest and cheapest way to go. Plus, I never have to worry about finding somewhere to pick up fast food . . . the produce department of any grocery store is the most convenient fast food in the world!

That said, switching to whole foods can be a challenge to those who are used to eating processed foods most of the time. It takes a while, but before too long, real food actually starts to taste better than the processed stuff . . . well, maybe not always, but it gets to where the whole stuff outweighs the junk, and it feels so good!

For me, it helps to use whole foods that still taste "naughty" even though they're nice:

Potatoes are always comfort food for me -- a lifesaver and they're cheap.

REAL popcorn, made on top of the stove with canola oil . . . heaven.

Gluten-free Refried beans slathered on top of a Corn Thin (cornthins.com - just found these last week and I love them) topped with tomatoes, avocado and shredded lettuce -- addicting!

Travel: Yes, it can indeed be difficult. Egypt, wow! I've heard that it can sometimes be easier to eat gluten-free outside of the U.S. (are you from the U.S.?) because there are many places in the world where folks are more enlightened than they are here. Not sure about Egypt, though.

I hope you'll post anything you find that helps you with your travels. I'd like to hear more about how it goes for you.

<img alt="" height="1" width="1"/>Open Original Shared Link

Celiac.com

Celiac.com 02/05/2010 - Collagenous sprue is classically understood as a disorder of the small intestinal mucosa marked by persistent diarrhea, ...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm new here and to gluten-free in general. Brief history: After some reading and realizing family history, I decided to do testing through Enterolab. The results indicated elevated antigliadin (?), no damage or malabsorption. Gene test showed no celiac gene but double copies of gluten sensitive genes. My family history is: maternal grandmother - life threatening food allergies, mother - severe rheumatoid arthritis, cousin on mother's side - type 1 diabetes, sister - peripheral neuropathy, son - life threatening food allergies. My thinking on the allergies is maybe leaky gut caused by elevated zonulin?

Anyway, with all this in mind, I decided to commit to a gluten free lifestyle to head off any potential damage caused by the gluten. However, after one week, yes, I know, one week...I'm wondering if I am over-reacting. One side says that I should do what I can to prevent damage. The other side feels overwhelmed with trying to cook for my family and be able to afford it (mainly baking issues). I actually broke down in tears as I was trying to make pizza tonight. Silly...

Can you help me resolve this back and forth thinking in my head? I know this is nothing in comparison with what celiacs deal with. I just have read that gluten sensitivity can be damaging in other ways. Thanks!

Blessings,

Jamie

Jamie,

Gluten-intolerance can become just as damaging as full-blown Celiac in many ways. Also, many highly-sensitive gluten-intolerant folks experience stronger symptoms than some with Celiac, so please know that the problems you are facing are just as strong and just as real.

I have highly sensitive gluten-intolerance, so I know from personal experience what a blow a body can take with it.

Take a look at my symptoms in my signature line, below. Even though my villi aren't damaged and even through my DQ 2 and DQ8 do not indicate the Celiac gene, the diarrhea from my elevated gliadin level became so severe that, over time, I wasn't absorbing nutrients -- and malabsorbtion can lead to more serious issues regardless of if it comes from damaged villi or from a person's body rejecting food because it reads it as poison.

If I had stopped eating gluten earlier (if only I had known I needed to stop!), I would have saved myself from years of HORRIBLE pain, sickness, neurological damage, confusion and frustration.

I'd keep with it -- hang in there. It really does get easier over time. In the meantime, come here and scream your lungs out! That's what I did! I acted like a real baby at times. It was great to have a place to vent.

Can anyone recommend a good pediatric GI in Albuquerque or Santa Fe?

These are old links so I don't know if they all work, but I found this online under Gluten Intolerance Group New Mexico. You might want to give them a call to see if they can help you:

New Mexico Contacts

Group: Albuquerque Gluten Intolerance Group

City: Albuquerque

Contacts:

Marvin Daniel

10029 Barrinson NE

Albuquerque, NM 87111

505-821-2935

Marilyn Johnson

1620 Soplo Road SE

Albuquerque, NM 87123

505-299-5283

Pasquale Liguori

832 Cagua Drive SE

Albuquerque, NM 87108-3720

505-256-3613

Internet:

Marilyn Johnson, johnsonakjac@earthlink.net

Pasquale Liguori, paliguori@juno.com

Carole L. Kalich, remotelydifferent@JUNO.COM

Melissa Roberts, RobMisy@AOL.COM

Darla Straka, jdstraka@highfiber.com

Updated: 10 Mar 2001

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

Resource Unit

City: Las Cruces

Contacts:

Susan Pieper

4825 Senita

Las Cruces, NM 88011

505-522-8182

Internet:

Susan Pieper, spieper@huntel.com

Updated: 28 Aug 1996

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

Resource Unit

City: Silver City

Contacts:

Joy Ash

PO Box 109

Silver City, NM 88062

505-534-1030

Internet:

Joy Ash, joyash@zianet.com

Updated: 13 Apr 1998

Kidney and thyroid tests came back okay.

colonoscopy - 2 polyps despite being free of them last year. Both were the kind that can lead to cancer if not removed. I have a very "twisted" colon and my former doctor may have missed them in the folds -- not sure. Anyway, they're now removed. I will need to have another colonoscopy next year as a safety measure.

Everything else okay, including no colitis.

Side note: A twisted colon is no fun during a colonoscopy, but my test went smoothly this time. To make things easier for me, Dr. Semrad used a very thin scope -- the kind usually used on children. This made the colonoscopy MUCH MORE COMFORTABLE than when my former doctor did it. It was pretty easy this time around. Whew!

How about just ordering a glass of wine?

My levothyroine is from Mylan and it is gluten free. My liothyronine is from Padock and I confirmed it is gluten free also. My folic acid and b12 are Nature made and it states gluten free on their website and bottles. My probiotic the same thing dds I think. I take slow Fe when I remember. Occasionally I will take a generic zyrtec usually cvs brand. I think I will completely decomtaminate my kitchen (again) and sit down with my husband and try and work out a solution. It won't be easy to sell him on this. Putting things in perspective I can see many problems. Kids eating pretzels, crackers, poptarts etc all over the house. I do make them wash their hands when they are done, but I'm not always here. I'm just a little overwelmed right now because I'm frustrated and tired. I would love to have the house completly gluten free, but I don't see the rest of them compromising to that extreme. Overt glutenings I am symptomatic very soon. I think this possible cc issue is more subtle.

For my family, it was easier for me to make a dedicated gluten free area on my kitchen counter. I put newspaper down to mark the area, and when I'd use the area, I'd put fresh newspaper down. I also use dedicated chopping boards which I've Sharpee-marked marked with GLUTEN FREE (tons of things in this house are Sharpee marked MOM or GLUTEN-FREE). I feel like a school kid!

PS: Even my toothpaste had gluten in it! It took weeks before I found out.

I was also using hand lotion with gluten . . . not too much of a problem as long as I didn't have a cut on my hand . . . but whoops! I'd eat something with my hands and touching the food before it went into my mouth cross contaminate me. Gluten in shampoo or conditioner: not good if any of the water runs into your mouth as you rinse your hair. Lipstick is another common source.

CHECK EVERYTHING.

Be careful with the meds and over the counter stuff. I was "pretty sure" too, and it turned out some had gluten, including vitamins and digestive enzymes. Call the company, always.

After much trial and error, I now use stainless steel cookware only, and I've asked my family to use our other cookware (including Calphalon) for gluten containing foods.

Dish towels are indeed a good source of problems. We have a kitchen at work. I kept getting glutened -- it got better only when I brought my own dedicated plate, bowl, silverware, cutting knives (which I keep in a container in my office) AND started using paper towels for washing/drying instead of kitchen towels.

Plastic storage containers: Unless they are brand new and dedicated to my food only, I cannot use them. Even if washed in a dishwasher, I cannot use them. I purchased wide-mouth glass Ball jars (canning section at store), and I love them. If I need a plastic container, I buy new Gladware, mark it with "gluten-free," hand wash it and store it in a gluten-free area I created for myself.

It is so frustrating at first. You try and try and TRY, yet something keeps "getting" you. I know, I know. Part of it comes from it being hard to believe that such minor little things can cause such big problems . . . but they do.

And it isn't just us who feel this way, our family feels the same. At first it seems okay to walk around with a sandwich . . . "how can it hurt?" My hubby was the same way. When I kept getting sick, he finally began to realize that maybe it really IS true that just one little misplaced crumb is like an atom bomb in my stomach.

Is all of this a pain in the wazoo? You bettcha. But after a while, it all comes together and just feels normal, especially when family finally starts to "get it." The good news: It will all get better!

Good with tuna salad, too. I like to use Vegenaise for mayo -- egg free, dairy free.

Have never heard of them. Thanks for sharing about them. I'll keep an eye out in Whole Foods next time I'm there. Where did you buy yours?

I bought mine locally at a store that has an extensive gluten-free section (not a chain). I checked online here to see if they might be available at the Gluten-Free Mall, but I did not see them -- maybe in the future?

If you Google Corn Thins Real Foods you'll get their site as well as places where you can order online.

I hope you enjoy them!

I've been having a difficult time finding low-fat crackers that satisfy me. Last week, I found a product called Corn Thins (popped corn cakes), made by Real Foods - realfoods.com. I found them at a local grocery store that has an extensive gluten-free section. They are also available online.

They are similar to a rice cake or corn cake, except they are much thinner. I also think they are much tastier. What I love the most is that they are only 22 calories per slice AND FAT FREE!

It is so hard to find a low calorie, low fat crunchy treat when eating gluten free -- these are a real blessing for me.

They are a product of Australia. They are gluten-free, Kosher/Parve and GMO free. I have tried both the plain original and the multi-grain. Neither mention sharing lines with wheat, soy, nuts, dairy, etc.

I am highly sensitive and often have problems with cross-contamination. I haven't had any problems with Corn Thins.

My favorite way to eat these it to top them with gluten-free, fat-free black refried beans -- reminds me of a tostada! I plan to add salsa and shredded lettuce next time.

One of the biggest problems I've had is finding foods that I enjoy -- foods that feel like fun when I eat them. These do it for me.

I know rice cakes or corn cakes aren't for everyone -- many people feel as though they are eating packing material! For me, something about these being so thin makes them much more enjoyable. They are really, really good.

No, I don't work for the company, hold stock, or know anyone who might benefit from this post. It's just so darn WONDERFUL to find a food that really works for me, I had to share.

Okay, that said, NOW I'll go buy stock (just kidding).

Lyn

I appreciate all the suggestions! Has anyone here ever used anything by Enzymedica -- Digest Gold?