luvs2eat

I had terrible heartburn and was on Protonix for a good while. I don't know if you're overweight, but I lost 20 pounds and the heartburn disappeared never to return.

I've been a fan of Pamela'.s gluten free bread mix. I've purchased it in individual bags, in bulk packages of about 4 lbs., and finally in their 25-pound bag thru that big river in So. America store that we may or may not be allowed to mention. It's a good bread mix... only requiring a little oil, eggs, water, and yeast. I make a loaf a week... mostly in a bread loaf but sometimes in roll shapes.

I've seen their commercials and sort of assumed the cantina bowl would be gluten-free, but I sure wouldn't trust it w/ the cross contamination issues.

I can point to exactly four serious glutenings in my 10-year gluten-free journey. One was very early and I had no reaction. The next was a few years later and I just made it to the bathroom 4 hours after the offending food. Next was a few years ago and I spent several hours trying not to barf and spent the next day on the couch feeling weak and foggy. The last was just a few weeks ago when I ate a Rudi's hot dog bun that was not gluten-free (MY bad in not being more careful reading the bag!). About 2 hours after I ate it I spent the next 3 hours sitting on the john w/ a waste can in my hands as my digestive system completely purged itself from both ends. I've never been that sick!! Since then, I've "gone off" some foods and had to take it really easy for the next day or 2.

About a year after I was diagnosed, I chowed down on a huge slice of the warm, fresh-baked crusty loaf of bread I'd made for company... and NOTHING happened. I actually started thinking that perhaps I could "cheat" once a month or so... and started planning monthly treats. The next glutening was an accident and I barely made it to the bathroom 4 hours later. Fast forward years of being absolutely gluten free... you should go to the thread I posted last week (in the Coping section) titled "Holy Glutening." Not only would I not voluntarily cheat... I am being as careful as I was near the beginning... reading every label again because I do not EVER EVER EVER want to be that sick again.

I've said it many times ... I was diagnosed very quickly (only 2 months of symptoms) so I wasn't experiencing the unexplained weight loss that many do. Then, I began to thoroughly enjoy all the things I COULD eat and chowed down to make up for all the foods I could no longer eat... and gained about 40 pounds! I was eating Pepcid like candy to deal w/ the killer heartburn I was having.

I cut out carbs... not real Atkins, but I gave up bread, rice... the obvious starches. I've never been a gluten-free processed food person so that wasn't difficult to avoid. I ate lean meats and lots of veggies and fruit. Twenty pounds came off and the heartburn disappeared. I still need to lose that other 20!!

As I was diagnosed very quickly... when people asked me what the symptoms of celiac disease are, I'd say, "Unexplained weight loss is often a big one." Then I'd look down at myself and say, "Um... I didn't get that one."

When people would say stupid things like, "What on earth do you EAT?"... I'd again look down at myself and say, "Um... do I LOOK like I'm starving??"

Isn't it amazing how clueless people are about what we eat??

I zipped into the health food store the other day and grabbed Udi's gluten-free bagels and Rudi's gluten-free hot dog buns. Last night I had a BLT on one of the hot dog buns and 3 hours later spent the worst next 3 hours of my life as my entire digestive system completely purged itself. During the "down time" (in-between barfing in the waste basket and squirting out of my butt) I went thru everything? Bacon? Nope. Tomato? Picked that day. Lettuce? Maybe it was some weird recalled produce? Mayo? Nope. Cherries? Nope. I wondered if I had food poisoning. I wondered if it was a glutening... would I feel like this for 3 days?? I don't understand why the stomach keeps trying to empty itself when there's obviously nothing LEFT in there!!

This morning I'm better but as weak as a kitten. The last time I was glutened was about 3 years ago and in the 10 years I've been gluten-free... I've only been glutened a few times. I pulled out the Rudi's hot dog rolls and instead of Wheat Free on the package, it said, "Wheat buns!" I can't believe I didn't see it. What a dope! I may mention to the really nice health food peeps that it would really be good if they kept all of the gluten-free frozen options together rather than putting all of the Rudi's stuff together, not all of which is gluten-free.

That said... It really told me just how sensitive I've become to gluten. I've NEVER had this extreme a reaction before. I sure will read and RE-read the packages from now on!!

When I was diagnossed (10 years ago) the gluten-free offerings on the market were pretty bad. But I ended up gaining about 40 lbs. overindulging in foods I COULD eat (rice, homemade bread and baked goods, etc) to make up for all the foods I could no longer eat. Thankfully I'm not tempted by the majority of gluten-free processed foods and was able to drop 20 of those 40 lbs by eating way less carbs (bread, rice, etc) and way more veggies/fruits.

Good luck!

Most of our friends are SO kind and concerned, but get confused.

"You can't eat that... it contains whey." Um... it's wheat I can't have, not whey.

I walked past a bake sale and had to say... to the sales pitch... "Would you believe there's not one thing there I can eat?" They asked about celiac and said, "Oh you poor dear. WHAT do you eat?" I looked down at my overweight self and said with a chuckle, "Um... do I look like I'm starving??" Ha ha.

Long ago I responded to my friend's sort of impatience... "Can't you just eat a little??" "Um... can YOU just eat a little rat poison??"

Nope... my symptoms (at age 49) were sudden and consisted of unrelenting diarrhea w/ huge belly noises ... no tummy upset or cramping. I had the symptoms for about the 2 months it took me to get in to see a gastroenterologist who did blood work diagnosing celiac. While waiting for the results of the blood work, he treated me for suspected giardia, a water-borne infection that he suspected cause we'd been swimming/boating in the Delaware River all summer.

I always had an "iron" stomach... I could eat anything and everything w/ no problems at all.

When my doc talked about wheat I told him I remembered a short period when I was 5 years old and brought my own snack to school because they didn't want me to eat wheat. What was the reason for that? Not a clue. I don't remember any digestive symptoms. I was happy because I felt special to have to bring my own snack... which was a slice of rye bread w/ butter!! So, if celiac was suspected at that time... I'm guessing the rye bread didn't help much.

I'm almost certain that any fried tortilla strips in their salads are made from flour tortillas so that'd sure explain your being glutened!

Dining at home w/ friends is a great idea. We rarely go out to eat because we live so rurally and there are few places to go! We entertain at home often. I did a Mexican feast on Cinco de Mayo that was completely gluten free and everyone was amazed! But it was really simple because everything I made (mexican lagagna, grilled tequila shrimp, a mexican caprese salad, and fresh fruit) was all naturally gluten free! I can do a mean General Tso's chicken too and tonight I'm trying another Mongolian beef recipe.

I like to cook... always have... but I do understand your hesitation. The ingredients can be expensive!

(side note... I bought about 10 big avocados for our Mexican feast at WalMart. Avocados were selling at Aldi's for 29 cents each. WalMart was asking $1.25 for each one. All I had to do was mention Aldi's price to the checker and all my avocados were 29 cents each!!)

I wish we could buy gluten-free puff pastry and phyllo dough. I've seen recipes but they look daunting.

Pretty much never. The last two times we went (to Chilis) and got the gluten-free menu and spoke to the manager and server, I received a salad that didn't even have flour tortilla strips in it according to the menu description, but was filled w/ them. The sad reality is that I simply don't trust restaurants anymore. Hubs and I cook what we like and don't miss it that much.

Your list of foods looked almost EXACTLY like the diet my daughter was on for the better part of a year... with one glaring exception... CHEESE. She could eat no dairy (and still can't), but her entire diet was eggs, white rice, cauliflower, plain chicken, and some apples. She very slowly began to introduce some new foods but is still very limited.

So, for now I'd certainly ditch the cheese from your already limited diet.

I feel everyone's pain. My first gluten-free beer was a Bards Tale and... for the first beer in about 10 years, it was heaven! I like New Grist but we can't get anything where we live. I'm going to ask our fave liquor store if they can order me a case!

I've been ordering from Amazon for years. I use Pamela's bread mix... started w/ a box of bagged mixes, went to the bulk bags and finally to the 25-pound bag that I keep in a plastic container. I also have ordered lots of their Tinkyada pastas.

The local health food store guy asked me if there was anything he could order for me to keep in stock and I had to tell him that I could get it for a lot cheaper (and free shipping) from Amazon and while I'd love to give him my business, I just couldn't afford to!

We don't do convenience food or processed food so I've not ordered anything but the stuff I use all the time.

I always make Ina Garten's outrageous brownies on the food network. The recipe makes a lot and there's so little flour in it, the substitution of Better Batter gluten-free flour I have isn't noticeable at all!!

When my youngest was diagnosed w/ celiac she was also experiencing bladder symptoms. For example, she drank a glass of orange juice... and by the time the glass was empty she said it felt like she had glass shards in her urethra! She did a lot of research on interstitial cystitis and ultimately found that she was intolerant to nearly EVERYTHING. Her diet, for more than a year, was limited to about FIVE foods. She's a lot better, but still severely restricted.

I hope your journey is a lot easier. She's now gluten free, citrus free, nightshade, oxylate free, dairy free, and a bunch of other frees... BUT she has been able to bring many foods back into her diet.

I've even found the Kraft American Cheese in its own can! I had to ask about it at one grocery, but I think you can ask them to order it for you. Some gluten-free pasta, butter, milk, and the American Cheese powder is EXACTLY like the blue box mac and cheese.

We also make our own mac and cheese with different cheeses. It's easy. Look up any homemade mac and cheese recipe and make it gluten-free. Easy peasy!

I am so terribly sorry. I have no answers, but please know that you are in my prayers!

So... I had my second colonoscopy yesterday. My first was 10 years ago when I was diagnosed with celiac by bloodwork and my GI doc said that I was close enough to the beginning screening age.

This time, when I told one of the nurses asking about past medical history that I was a biopsy-proven celiac (by bloodwork and an endoscopy a few years later) and that all three of my daughters had been diagnosed in the last 10 years, the only question she asked was, "Do you eat out in restaurants?"

When I met w/ the doctor who asked me if there were any GI illnesses or cancer in my family and I told him of my celiac history, he asked, "Do you eat out in restaurants?"

It wasn't until later than I thought the question from two different people interesting and wish I'd thought to ask why they asked that particular one?

I told them both, "Nope, we don't eat out anymore. It's just too hard and we've found it's just not worth it."

We don't live near a PF Changs and almost EVERY place we've been to in our very tiny rural town has gotten something so wrong I've had to send my food back... so we just don't go.

A really easy fun thing to do is to serve her lunch or snacks in a cupcake baking tin... individual cups of carrots, a cup of "dip," berries, etc., in another. The kids love it!

Welcome!

The other really awesome part of this group is that you can ask ANY question and there are plenty of really knowledgable peeps here who can answer it!