EBsMom

We spent last week in Steamboat Springs, CO. I was thrilled to find two great sources of gluten-free food there and wanted to share. First, I shopped at a health food store called "Healthy Solutions" - they had the best selection of gluten-free food I've ever found in one place! They even had homemade baked goods for sale - the carrot cake muffins and the cherry almond cookies were unbelievable!!! We also had pizza at a restaurant called Beau Jo's (a Colorado chain, I believe) and it was wonderful. That was the first pizzeria pizza that we'd had in nearly 2 years (since kiddos and I went gluten-free), thus it was one of the highlights of our trip! Hope this information can help someone else if they're planning a visit to Steamboat.

Rhonda

ps - The skiing was pretty darn good, too!!!

Is it possible to see such a huge turn around in someone who has been genetically tested and said NOT to have celiac?

I think so!!! My dd (now 10) does not have either of the recognized celiac genes. We tried her on a gluten-free diet on the advice of a friend (whose dd and dw have celiac) and she started to feel better very quickly! Her symptoms were pretty severe - reflux, gas, bloating, D, pale, low energy. Within a couple of days her reflux started to subside a bit....within a week the gas was noticeably lessened....within a couple of weeks the D subsided. It's taken longer for her to regain her energy and get the color back in her cheeks, but that's to be expected. I think that kids can respond VERY QUICKLY to a gluten-free diet, if gluten is indeed their "issue." She REFUSED the idea of going back on gluten for a challenge, or to pursue a formal diagnosis (with my blessing....I didn't want to feed her gluten again.) She ended up having to give up dairy and soy....but since her diet is on track, she's only gotten healthier and more energetic. It's been nearly 7 months and I'm not sure that she's hit the "ceiling" yet.

I think that considering your ds's symptoms, if he continues to do well on the diet then you have your answer! He seems like a mature kid to decide to go gluten-free himself! Good luck to him and all of you!!!

Rhonda

Did anyone else mourn food they can't eat anymore or am I just nuttier then I thought I was?

You're not nutty....you're normal, by my standards. I burst into tears once when I saw someone carrying a birthday cake out of the grocery store. I'm not sure if I was mourning the food, or the convenience of the food, but I was crying hard, regardless of the exact reason. I also cried in the grocery store once, early on, when I was trying to learn to shop gluten-free, and the smell of pizza has brought tears to my eyes on several occasions.

BTW....you can make just about anything gluten-free. All the baked goods that you loved before going gluten-free can be "yours" again when you feel like trying to recreate them. gluten-free baking is another steep learning curve (like learning to shop gluten-free) - I wasn't up to taking it on for a while after going gluten-free. I'm trying now, though - one "item" at a time. I've had some flops, but I've also had some grand successes. At some point - when I feel REALLY ambitious - I'm going to try to make chocolate croissants for my dd. She loved those before going gluten-free (and so did I!)

Rhonda

What questions do I ask them to make sure I will be safe?

Call ahead, so they can be prepared. Instead of the paste they usually use to clean your teeth (prophy, I believe it's called) they can use pumice powder. They used that on me and I coudn't tell the difference. Glide floss (Crest) is gluten-free, and that's what my dentist used anyway. For my kids, they use a fluoride treatment that is gluten-free (only one flavor of our pediatric dentist's flouride is gluten-free....my kids have it memorized....it's cotton candy!) When I called, I had a long talk with the dental assistant....and when I showed up, they had a printout on gluten-free dentistry that they'd printed from the internet. You'll be fine, I think, if you give them time to research and prepare....and if you're lucky, they already have other celiac patients, and know the score! Good luck!

Rhonda

What is your homemade pancake recipe? Is it dairy and egg-free, or adjustable to be? I've only had pancakes once since diagnosis. They were made from a mix and weren't right at all.

I'm very happy with my pancake recipe. It took a few months, and lots of flubs, to come up with it. I use an egg, but I'm sure you could use egg replacer. It's already dairy/soy free (we don't do dairy or soy here.)

1 egg (or equivalent replacer)

3/4 c. rice milk (or almond milk)

2 tbsp. canola oil

1/2 c. flour blend (I use Tom Sawyer, which contains xanthan gum and gelatin)

1/2 c. teff flour

2 tsp. baking powder

1/4 tsp. salt

2 tbsp. sugar (optional)

I usually add mashed banana, or grated apples, and nuts or chocolate chips. When I add "sweet stuff", I leave the sugar out. Recently I added some pureed pumpkin and a little cinnamon - yum! Hope you can use this. I was pretty distraught when I couldn't make decent pancakes for my kids....I made it my mission to be able to do so, lol!

I'll try the NF sometime this week - like you said, when I don't have anything important to do later.

Rhonda

I never really thought about what my wedding would be like until recently but when I picture it, it is a peaceful, intimate affair.

I think that a peaceful, intimate affair would be way more meaningful in the end than a big showy affair that took months to plan and stressed you out! I love the idea of having more money for good food, too! We just celebrated our 18th weddding anniversary and ours was a very simple wedding. We rented a house on our favorite Florida beach (I'm originally from Florida) and got married on the deck, overlooking the ocean. Only our close friends and family were there. We were married by a Justice of the Peace (family friend) and our dog was there (wearing a big white bow around her neck!) After we were "legal", we had a seafood buffet catered right there on the deck, and everyone stayed to party well into the evening. It was very informal, very relaxed - and very much "us." The one thing I did do was have a photographer there. I have an album full of great candid shots of the day, and I love to pull it out from time to time to relive the moments. Your wedding should be all about the two of you - forget that stereotypical, outdated model of what a wedding "should" be like, and just do what makes you happy - including having both your dad and your grandfather give you away. And, as someone else advised, take lots of pictures. You'll cherish them later! Happy planning!

Rhonda

Did you try going without the cereal? If so, what was your experience?

I haven't eaten Nutty Flax since your post....and I've been feeling great! Hmm......I may try it again this week and see what happens. I'm a bit apprehensive, considering that it made you feel bad again. I don't want to lose the only gluten-free cereal that I really like! I have been enjoying all the homemade pancakes, though! :-) I'll let you know what happens when I try it again. Y'know, I meant to mention something back when I replied to your original post - my local health food store couldn't get Nutty Flax (they could get the Nutty Rice, but not the Flax) for about a month or so. I kept asking about it....they said they ordered it, but didn't receive it. Then, suddenly, it was available again. Wonder if they had a supply or production problem of some sort.....and how would you go about finding out if they did?

Rhonda

Hi Meredith -

This isn't an easy transition, huh? The thing that has helped me the most is educating myself. I've read every book about celiac disease/GI that I could find, and I've spent hours reading through the archives on this, and other, websites. I didn't have any severe symptoms before figuring out that I needed to give up gluten, so I kept having that creepy intrusive thought process also. Now that I know what *can* happen if I continue to eat gluten, I'm more able to fend off the annoying little thoughts in my head.

The other thing that has helped me is to think about my family. First, I have two kids. I want to be here for them (healthy) as long as possible, and I want to set a good example for them about dealing with adversity and challenge in life. Both of my kids are gluten-free (and cf/sf for my dd) so they look to me to set the tone in dealing with the diet. Secondly, I look at my mother....who has several autoimmune diseases and is not in great shape. I don't want to be in that condition when I'm older. If eliminating gluten is what it takes to keep me from going down that same road, then so be it.

Good luck to you.....hang in there....I do think it gets easier with time.

Rhonda

I like Pacific Rice Milk and their Almond Milk--both vanilla and plain (depending on the situation)

That's what we use, too. Soy has *always* bothered me, if I consumed very much of it. My dd had the same reaction to soy that she had to dairy....has given up both, for now. Me, too. At first I thought it was a tragedy, but we've adjusted. I use rice milk or almond milk in place of dairy milk in my cooking, and it works just fine!

Rhonda

'Course, I have to say that I've encouraged many of these people (and others, including complete strangers) to get testing/try going gluten-free, and with just one exception, no one has taken me seriously <sigh>.

Same here. I see it EVERYWHERE I look. I don't mention it that much anymore, though. My friends and family were starting to think that I was paranoid and obsessed. I even had one friend say "Every health problem in the world isn't related to gluten, you know."

Welll, yeah, I DO know, but when you see these clusters of conditions/symptoms in so many people, it's difficult not to think "GLUTEN INTOLERANCE!" I got a bit of vindication a few weeks ago....my b-i-l was diagnosed with celiac disease. That shut my in-laws up, at least....though none of the rest of them are running out to get tested.

Rhonda

Apparently, after relooking at the can, I realized I left out the sugar. Pumpkin pie without sugar is not very good

LOL! Sorry for laughing, but I've done the SAME THING with a pumpkin cheesecake! It was years ago, on a Thanksgiving eve. I got the cheesecake in the oven and was cleaning up, when I noticed the bag of sugar sitting on the counter and realized I'd never opened it. I had to run out to the store to buy more cream cheese and start all over. I was up until 2 a.m. or so. It was a very sleepy Thanksgiving for me the next day. Glad you realized before you served it!!!

Rhonda

Oh, I'm so glad you started this thread! I've been stewing about my two "misses" all evening. First, the stuffing that I made in the crockpot was a gummy mess! I obviously put too much liquid in it, and I also think I cooked it too long. I love the idea of doing stuffing in the crockpot, so I'm going to work on this. My second big miss - and it really was a disaster - was the chocolate pie that I made for my dd. The crust turned out great - GFP mix - but the filling never firmed up. I made it in a double-boiler, with gluten-free flour, cocoa, egg yolks, almond milk, sugar, vanilla. I think I should have cooked it longer. It was thickening up nicely, and I assumed it would continue to do so when it was refrigerated. It did NOT! I spooned some of the runny-pudding-consistency filling out of the crust and into a bowl, and threw some fresh raspberries on top. My dd ate it, but indicated that I didn't need to attempt this dish again (too rich, she said.) Oh, well....at least the pumpkin pie was a big success. I fiddled with the recipe and added maple syrup....it was yum! (Trying to end on a positive note here, lol!)

Rhonda

When people speak of neurological problems, what do they mean?

I *think* there are a host of neuro symptoms that people refer to: ataxia, peripheral neuropathy, headaches, fatigue, head "fog", irritability, rage. I'm sure I'm leaving something out, but I've seen posts regarding all of these things right here in this forum. Lately, it seems to me that I'm hearing more and more about the link between gluten and autism, and gluten and ADHD. I also just read something about a link between celiac and schizophrenia. I think there must be a whole gamut of neuro manifestations of gluten intolerance.

In my dh's case, he had an intermittent "fog" in his brain. He's 12 now, and I started trying to figure it out when he was your ds's age. Neither his teachers nor a couple of educational psych's could figure out why he was, at times, so foggy and unfocused. He's a very bright kid and he compensated as best he could....but it wasn't until we eliminated gluten that the fog lifted. He realizes it himself, and the change is visible to those around him.

Good luck with your ds!!!

Rhonda

Oh, I also have a quick question about my family. My daughter has celiac, with DQ2 and DQ8. My son has neither gene (per Prometheus labs), but seems to have mild gastro problems. Given my results, would you bother having him tested by Enterolab as well?

/quote]

Neither of my children has a celiac gene....both have "double gluten sensitivity genes", according to Enterolab. My dd had very pronounced celiac disease symptoms (getting sicker by the day) and responded immediately to a gluten-free diet. My ds never had gastro symptoms, but had a plethora of neuro symptoms. We had him tested by Enterolab and he was reacting to gluten, so he went gluten-free and is now doing very well! So, IMHO, while it's interesting to know what your genes are, it doesn't tell a complete story. Symptoms and dietary response are a lot more "telling."

I had myself tested as well....and was quite surprised, as you are, to find my results positive for gluten/casein sensitivity. I've cut both from my diet, and feel very good. When I get glutened (accidentally) I get stomach pains, head fog, irritability and C. So....I guess the moral is "You never know." I never had any big sypmtoms before....only mild gastro stuff. My ds never had any gastro stuff at all. We're both thriving on a gluten-free diet, though. The Enterolab results helped to point us in the right direction.

Rhonda

See's is from California and is generally found only in the Western US.

Someone brought me a box of See's once....and I've never forgotten it! They were seriously good chocolatess! VERY GLAD to hear that they're gluten-aware. I hope they ship (I'm in the Easter US.)

Rhonda

We're having a gluten-free/cf/sf meal. Turkey, gravy made with turkey drippings and cornstarch, mashed potatoes made with chicken broth and rice milk, green beans cooked with brown sugar and bacon, dressing made with gluten-free bread (you could just leave out the onions....use onion powder for flavor, and use celery, sage, poultry seasoning, chicken broth), roasted carrots and parsnips, canned cranberry sauce (my kids insist on it - sigh!), pumpkin pie (using rice milk) and chocolate pie.

The only specialty item I'm using is Gluten Free Pantry's pie crust mix....everything else came from the mainstream grocery store.

I don't really use a recipe for any of these dishes, except for the chocolate pie (found the recipe online....my dd really wanted something chocolate.) If you want to make any of these things, let me know. I could approximate a recipe, probably (I'm one of those "pinch of this, dash of that" cooks.)

Rhonda

I'll be curious to hear what happens when you cut it out. I eat it a lot....and honestly, I haven't been feeling all that great for the last couple of weeks, but it's not my usual gluten reaction. It's more head-fog type stuff. Maybe I'll try going without for a few days, too....give me a good excuse to gorge myself on homemade pancakes, lol!

Rhonda

First of all, celiac testing in kids this young is notoriously unreliable. Secondly, allergy testing is not the same as testing for celiac disease. If I'm not mistaken, you can have celiac disease, but NOT have a wheat allergy. It's a completely different mechanism of reaction in they body.

It seems, from what you wrote, that your dd's clearly have a gluten intolerance. That could be full-blown celiac disease, with total villous atrophy, or it could be damage to a lesser degree, but it doesn't really matter, IMHO, because you see very plainly that your dd's are better off of gluten. I don't think it matters what you call it, when speaking to others. I pick my words based on who I'm talking to - sometimes I say celiac disease, sometimes I say gluten intolerant, and if I'm in a restaurant, talking to someone who doesn't quite seem to "get it", I say "severe wheat allergy."

My dd was first diagnosed through dietary response, then secondly by the Enterolab fecal test. She doesn't have a formal celiac disease diagnosis, but she had all the symptoms, and was getting sicker by the day. That all cleared up with a gluten-free (and cf/sf) diet. In my mind, and in her pediatrician's mind, that qualified as "probably celiac disease." So I feel justified in using that term, when I feel the need.

My ds, on the other hand, never had any intestinal-type symptoms. His symptoms were neurological. I usually refer to him as "gluten intolerant", but would not hesitate to use the term celiac disease (or "allergic to wheat") if I thought it was prudent.

In the end, regardless of what others think - others being doctors, your family, your friends - the only thing that *really* matters is your dd's response to a gluten-free diet. I think you should say *whatever* you need to say to make things easier for yourself and your dd's.

Rhonda

My dd (10) had no problem with not eating gluten again, because she felt so badly before (like your dd.) My ds (12) felt fine, but had bigtime focus issues, that went all the way back to when he was in preschool (he's a 7th grader now.) Our pedi still thinks we're a bit bonkers to have linked his behavior to gluten, but she can't deny how well he's doing now. He, himself, states that "I don't have a fog in my brain anymore." He loved many, many gluteny foods before, and I really thought that he'd have a hard time accepting the diet, so we had him tested through Enterolab. Again, our pedi doesn't know what to think of it, and she probably doesn't really "buy it" (I offered to give her a copy of the Enterolab report, but she passed) but I don't care. HE IS DOING SO MUCH BETTER, in terms of his focus, that I do NOT need an official medical diagnosis to qualify our decision to take him gluten-free. He was reluctant to stick to the diet until he saw his positive Enterolab results. Now he's great about it, even calling me from friends' houses to check on the gluten status of certain foods if he's not sure. Sure, it would be nice to have the backing of our doctors....but it's not absolutely necessary. All that really matters is how well he's responded to the gluten-free diet.

Rhonda

Oh, my. I know you must be shocked....freaked out....sad. At least you can be gluten-free with your dd. My dd's illness and subsequent diet change are what led first me, and then my ds, to figure out that we, also, can't do gluten. It's easier when you have company. Good luck to you!

Rhonda

If you really think it might be the soy, then the only way to really find out is to eliminate it completely for a period of time and see how you feel. Then do a challenge if you want to. My dd had to eliminate soy to *really* get on the path to being well....first gluten, then dairy, then soy. I hear you about the restrictive diet....but it can be done. I'm really hoping that it's temporary for my dd, and that she can eat both dairy and soy again. But for now, it's out.

I also agree with Mango. You need more protein in your diet. Protein will keep your blood sugar level, instead of the highs and lows that come with eating only carbs. I ALWAYS get dizzy if I don't eat a good amount of protein. Eggs, meat, nuts, nut butters, beans....are all good protein sources. When I'm rushed, I grab a handful of walnuts or almonds, instead of snacking ONLY on carbs....it keeps me from needing to gorge on carbs again 30-40 minutes later, and starting the whole high/low blood sugar cycle all over again.

Hope you feel better soon!

Rhonda

How do you guys deal with the holidays?????

We're staying home. I am soooo glad. We were going to spend it with my dh's family, but they've been completely unwilling to educate themselves about the diet (ironic, as I'm pretty darn sure that most of them have celiac disease.) My m-i-l hosted a birthday brunch just yesterday, and EVERYTHING on the table contained gluten. I'd anticipated that, and had made some dishes that we could eat. She told us where to sit, and right in front of my dd's plate (she, ds and myself are all gluten-free, but she gets the sickest) was a big platter of cinnamon rolls and quick breads. She just stared at it when she sat down, kind of forlornly. It broke my heart! She would have loved those things pre-gluten-free. I moved the platter to the other side of the table, but the damage had already been done. That's the FIRST time I've seen my dd sad because of something she couldn't have in 5 months of being gluten-free. There is NO WAY that I'm going to let the holidays turn out like that. We're having T-giving and Xmas dinner at home, and thank goodness, dh is supportive of that. We told his family that we're staying home and they're all annoyed. Oh, well. EVERYTHING on our table will be gluten-free, neither of my kids will have to ask, "Can I eat that?" and we won't have to endure the fear of an accidental glutening. That's worth skipping the extended family together time for me.

Rhonda

Congrats, Kassandra! I'm glad you found a good fit. I'm very impressed with your maturity and motivation to find a good educational fit for yourself. I hope my kids have something similar when they're your age! Good luck!

Rhonda (Rho)

Emmm chocolate chips in banana bread, and muffins and sprinkled on cereal and ... can you tell I have missed chocolate chips

LOL! That is exactly how I felt when I found them! I always keep at least 3 or 4 bags around. We have banana-chocolate chip pancakes for breakfast at least twice a week. I use them as add-ins for brownies and blondies. I've even made chocolate ganache using EJ chips and rice milk. (And sometimes, when I need a little pick me up, a small handful is just the thing!) :-)

Rhonda

I like the Crispy Brown Rice Cereal, they make a gluten-free and just an original version so you have to make sure you get the one marked "gluten-free".

Yes, be careful. I accidentally bought the non-gluten-free one and gave some to my dd. I felt *just awful* when that happened....luckily, she only had a couple of bites before we realized and she didn't get sick.

Rhonda