Lynayah

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.

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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?

Hi Everyone,

I just wanted to give an update. I am in week 5 of Weight Watchers (going into week 6) and I have lost 9 pounds (plus I get weighed today).

It is going well. Its a rough start in the begining but it really feels great to not be so obsessed with food. I think I became a little obsessed once I w as diagnosed with Celiac last April. Someone said to me on this sight that because, in the begining, you think there is so much you cannot eat, you eat so much of what you can eat. That made sense to me. You think, if it says Gluten Free on it, I'm eating it, even if the calories are high, etc, etc.....

I am thinking of Weight Watchers as part II of my gluten free eating. It is helping me kind of put it all together: the gluten free part and then the portion part.

I do get a little jealous sitting in the meetings and they talk about their super low point, super convienant fiber 1 bar!

I want to up my fiber in the morning, so any suggestions are welcomed.

I do eat beans, veggies, an apple daily but doesnt seem like th 30 grams I should be getting daily.

Any gluten free cereals high in fiber????

Thanks everyone!

How much are you willing to spend?

One of the best investments I EVER made (and this was long before I was gluten-free) is a Vita-Mix blender - vitamix.com

I juice whole fruits in the morning for a high fiber smoothie. I also makes high fiber soups with a little gluten-free broth and whatever fresh veggies I have lying around (you can use canned, too, but it isn't as good for you).

I know that blending fresh foods might not be the answer to high fiber convenience foods, but oh my gosh, it is SO WORTH IT . . . and it only takes a few minutes to prepare.

Best are the digestive enzymes you get when you blend raw foods.

Thanks for the good info! I am excitied about all the new research being done on celiac disease.

You are welcome, Darissa! Thank YOU for the thanks.

Yes that helps a lot. Thanks! Did you have Celiac symptoms? This test can be preformed by family doctor?

Yes! I mimed Celiac symptoms like crazy, even sores in my mouth. For more, take a look at my signature line . . . and please know: the info there doesn't even begin to list all of it.

Well . . . yes, the tests can be preformed by a family doc., but be careful -- tests can be misread, and frankly, some labs are better at running the tests than others. Mayo Clinic is a good one.

If at all possible, seek tests done by someone who specializes in gluten-intolerance.

Sadly, the new Blue Diamond brand Nut Thins crackers don't work for me, which is a shame because they are delicious.

I am highly sensitive, and on the label it states that, while the crackers are routinely tested for low gluten levels (I applaud them for this), Nut Thins are manufactured in a plant that also processes wheat.

The first time I ate them, it was around the holidays, and I figured it must have been something else I ate, so I vowed to try them again.

The second time, I had a couple crackers in the morning, on an empty stomach, after having a good stretch without a "hit." No luck, I had a reaction very quickly afterwards. Good thing I was at home!

I envy those who can eat these crackers without a problem. They are very tasty!

I went gluten-free in September, and I'm still trying to get my Gliadin back to a normal level. Being glutened by "gluten-free" foods isn't helping, that's for sure.

Like so many of you here, I find I have difficulty with processed foods in general.

I am learning to always read the label, even if "wheat and gluten-free" is shining on the package in a neon sign. If it says there is wheat anywhere near the line, even if trace amounts, I must stay away. For me right now, it is probably best to avoid processed foods altogether.

I am being very strict these days - meat, vegetables, and fruit only, for the most part. I'm also buying organic whenever possible.

I think the one I take is from Solaray. Whole Foods has a couple of dairy free probiotics, and I haven't seen many at all that contain gluten (unless they have oat fiber listed in the ingredients). Most of them say "gluten free" right on the label.

What do you like about the Solaray one?

We had four different brands in the house at the time of my diagnosis. Nothing on the label about being gluten-free, so I called each company. It surprised me when THREE of them said that the pro-biotics were not gluten free! Only one of them passed: Inflam-Away from Premier Labs.

Problem is that Inflam-Away (not InflameAway, that is a different product) is difficult to find. One online company took my order and never delivered! I can find them locally, but they are very expensive.

I'm hoping to find a good one that I can catch on sale from time to time, or order at a discount, if possible. If I order online, I also want to order from a well-established online merchant who I know and trust.

Also, the ingredients in different brands vary considerably -- I'd really like to hear from people here which ones they use and why -- decisions, decisions!