valzues

Hi Valerie,

Your headaches and muscle cramps are probably detox - your body will go through a kind of withdrawal over the first couple of months (if you've been very sick, it could be worse), but if you are getting more than one headache in ten days, you need to make some changes to your diet. Call your GI and ask for a referral to an experienced nutritionist who can help you sort out which changes you need to make. Before you go to see the nutritionist, keep a food diary for a week - note what you ate, how much you ate and when you ate it, as well as any headaches and cramping (time, intensity and duration), and try to avoid taking painkillers. . .I know its hard but they could be making the headaches worse (if you are really suffering, put your thumb between your eyebrows, right above your nose and press gently for a minute. . .the pain should ease for a bit). Remember that you probably won't get hungry for the first few months, so the headaches could be your body trying to tell you that you haven't eaten enough. Try and get a little fruit sugar into you every couple of hours - a small glass of juice, a handful of dried fruit, a small piece of fresh fruit (veggies work too if you're really not a fruit person, but you have to eat a few more) - to reassure your body that you haven't forgotten about it. Start each meal with a little bit of fruit sugar, and step up your potassium intake (either more bananas or a potassium supplement. . .just make sure the supplement is gluten-free) to ease the cramping. When you do get a cramp, warm the area (hot water bottle works well, but in a pinch, soak a washcloth in hot water, drop in a plastic bag and press against the area) and gently stretch and massage.

So my question is this .... my baby food period is running out....

I have been really overly scared and paranoid about accidental glutening... since I have done this so on accident.. But besides health food stores .... where are you guys getting your foods... I have ordered a food chemical book... But I went to Walt Disney this weekend and realized that my son as a toddler and a pre schooler is going to have it rough. I have been told by everyone here ... meats ... veggies fruits ... but where do you get gluten free pies gluten free cakes ... crakers ... cookies... ( not that I am trying to turn my kid into a junkie for crappy food... But I have 2 other kids that are at the start of the year ... are going gluten free,,,,, if the baby has to everyone is going to ... for hopes for a healthier life... But I guess I was hoping to just get gluten free everything... But is that possible... like gluten free bisquick? How do you ask if a resturaunt has gluten free stuff especially ifyour stuff is cooked with gluten foods. .... ? is it possible ... to do this with out gettting all mad and frustrated ...

So my question is this .... my baby food period is running out....

I have been really overly scared and paranoid about accidental glutening... since I have done this so on accident.. But besides health food stores .... where are you guys getting your foods... I have ordered a food chemical book... But I went to Walt Disney this weekend and realized that my son as a toddler and a pre schooler is going to have it rough. I have been told by everyone here ... meats ... veggies fruits ... but where do you get gluten free pies gluten free cakes ... crakers ... cookies... ( not that I am trying to turn my kid into a junkie for crappy food... But I have 2 other kids that are at the start of the year ... are going gluten free,,,,, if the baby has to everyone is going to ... for hopes for a healthier life... But I guess I was hoping to just get gluten free everything... But is that possible... like gluten free bisquick? How do you ask if a resturaunt has gluten free stuff especially ifyour stuff is cooked with gluten foods. .... ? is it possible ... to do this with out gettting all mad and frustrated ...

Hi, THE BEST is Pamela's mixes. OH MY GOSH, the chocolate cake is the best! The whole family loved the cake, you could not even tell it was gluten-free. I used her bread pizza mix last night and made great pizza. I tried Good Pantry and it's just OK in my book. I also have Pamela's pancake mix too. YUMMY! Good luck.

I use Sherrie's frozen pie crust for all my one crust pies. I have not found a recipe for pie crust that tastes as good yet. 2 for $7.00 at the below address. It works in a pinch. My health food store carries them, if you like them ask yours to carry them.

Open Original Shared Link The brand is sherrie's gluten free

www.123glutenfree.com has a great biscuit mix Southern Glory Biscuit Mix. This is pricey at $7.00 per box I try to keep at least two in the house at all times for quick meals. If I have time Betty Hagman's Featherlight Biscuit recipe is also good. If you would like it let me know.

Cherrybrook kitchen has a great chocolate cake mix in a box.

Around Passover you can find alot of Gluten Free baked goods in kosher stores. Try and see if there are any in your area.

Cinderella Sweets out of New York makes alot of gluten free goodies and they taste great.

Cinderella Sweets Inc

874 Lakeside Drive

Woodmere, New York 11598

Phone: (516) 374 - 7976

Fax: (516) 374 - 7787

Once you know what you like the web site is Open Original Shared Link. This site only states a few things are gluten free, however I have found most are.

Hope this helps!

Hi, try Pamela's pie crust mix. My mom made me a pie for thanksgiving and it was good crust. It makes two pies. Worth the 4.50 a bag.

The list of improvements that DH and I have been noticing seems to be growing longer and longer ! I'm just curious to find out what kind of things you've noticed since going gluten-free. Here's mine:

~ no more bloating - even my hands & feet are slimmer !

~ no more gas (well, very rarely anyway)

~ brain fog has lifted

~ energy has increased, despite getting up several times a night to breastfeed

~ weight loss without trying (and I need to lose weight)

~ hypoglycemia has just about disappeared

~ I don't feel an insatiable drive to eat, even if I've just eaten

~ acne is clearing up

~ I don't feel SICK after eating

here's the one we just most recently noticed, and it's surprised us both: SEX is better !! I'm sure it's all part of having a little more energy and being less bloated, but I've noticed that I even think about sex more often...I thought having kids more or less destroyed my sex drive - but it hasn't !

here's DH's

~ foot pain has disappeared

~ less gas/bloating

~ weight loss

~ more energy

~ reflux has disappeared - this was the most significant one for him - he was on Zantac 180 every day, would sometimes take a third Zantac AND some Tums, and would STILL have severe reflux

~ chronic diarrhea has improved (this would probably go away totally if he would give up dairy, but he's stubborn, lol)

~ his face was always real red, and the color has returned to normal

~ he doesn't feel sick after eating

HI---

I have noticed no more sick to my tummy all day long

less bloated

diarrhea no more-used to always after I ate Gluten

However, my joint, back and headaches have increased since I have gone gluten-free

I never had headaches. Not sure what to do about that and also I am having major leg cramps.

If you know please advise, thanks Valerie

I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease.

You should be a doctor, great message. Thank you.

I am one that has very many of all the symptoms you named and I just found out 2 months ago that I have Celiac disease. I have had the pain and skin problems for years. Boy, I am sure glad I found a good GI doctor to get me on this gluten-free diet. Howevever, I have more headaches and leg cramps more than I ever have in my life time. What could that be? Valerie

We have company and I need to know wich ones they brought I can drink. Crown Royal....DISARONNO Originale......Japanese Plum Gekkeikan? Thank You.

We have company and I need to know wich ones they brought I can drink. Crown Royal....DISARONNO Originale......Japanese Plum Gekkeikan? Thank You.

WINE, red wine and more wine!!!!!!!!!!!! I know whisky has gluten in it if that is what Crown Royal is. I drink wine! Good luck, Val

Hi All;

I am only 2 months in to this gluten-free. My Mom found Pamela's cake mix for my birthday and boy is it great!!!! My whole family thought it was the best ever. I have now tried her pancake mix and it is awesome.

I am sure many of you have tried this line, but for us new to this disease I thought I would share. YUMMY!!!

Take good care and now Merry Christmas!

Valerie

I have had fibromayliga since 1994, after a bodybuilding competition. I blew it off, I have had so many health issues happen since then too. Now 2 months ago I find out I have celiac disease and it ties in. However, after reading everyone's replies I can't say the Gluten Free diet has helped my FM problem. In fact I have noticed it back after all these years. The headaches and pain in my joints have increased since I have gone gluten-free. I plan on seeing a new doctor for the pain and hopefully he can shed some light on all this. I have never had such headaches or leg cramps. I think it is this diet. Oh well, it amazes me how many people have my symptoms after all these years it is nice to know. Thanks!

Welcome Valerie! You came to the right place! I've spent countless hours here searching for answers and getting advice, and lots of support!

As far as the pizza crusts go, I LOVE Gluten Free Pantry's french bread and pizza mix. It tastes very much like regular pizza crust. Also, give Chebe a try. It's made with tapioca flour, so it's a little squeaky on your teeth, but it's pretty good too. And if you can find Glutino's frozen pizzas, their spinach and feta pizza is to die for! I like to add tomatoes and canadian bacon to mine!

Have your mom get on the site too, I'm sure she'll get a lot out of it!

Cocoa is safe! As are snicker's bars (which I keep in my freezer), and lots of other candy...I'd do a search, cuz I can't think of any others right now. Skittles I believe are okay. And Smarties, if you get them in the US. In Canada they're not.

I am tired a lot too, but that could be because of my hypoglycemia, or my depression...make sure you're eating enough of the right foods, to keep you energized! Lots of proteins, fruits and veggies! Keep yourself hydrated with lots of water too! That helps.

If you have more questions, you can PM me, or post them here!

Good luck, and again, glad you're here!

Thank you, I just now figured out how to read my responses. I love this information. Wow, I feel better already having a support group. It has been over a month now and I am having good days and really bad days. Thanks for your help, Val

I'd also love to know the answer to this question. I am so leary of the cappucino mixes....soemtimes drink them anyway and soemtimes feel funny, sometimes I'm ok.....anyone have any answers???

Hi, I can no longer drink any coffee, it makes me very sick. I just drink hot tea now. I am not sure if I would even chance the mixes. Good luck.

Hi there,

I just want you to know you're not alone.

Food intolerances are not always (or even usually) the culprit for muscle and joint pain. I know there are people here who found dietary changes decreased or eliminated their pain and that's just great and I respect that. And I really do NOT want to get into debates about that stuff. But there's also a lot of misinformation I've found on this board about conditions such as fibromyalgia. Food intolerances do not help everyone and the latest fibromyalgia research shows a genetic component as well as a hormonal component (relating to dopamine) that causes neurological disruption, which is unlikely to have anything to do with food. Though I personally believe that food intolerances may trigger its onset in someone with a genetic predisposition, there is no research into that. Sounds to me (I'm not a doctor) like you may have symptoms of fibromyalgia. Severe, unrelenting pain for a long period of time that is not otherwise explained should definitely be checked out by a doctor. I would recommend seeing a rheumatologist. If in fact you have it, you can try dietary changes but if those don't work what is usually recommended is treating the underlying sleep disorders, any hormone imbalances, gentle exercise, hot baths, lots of rest and... yes, pain medications (if necessary).

I have tried everything under the sun for my fibromyalgia (which is often severe to the point of not being able to work) and what has helped me regain my life the most is regular gentle exercise, acupuncture, stretching, and pain medications - Yes, narcotic and/or opioid pain medications.

Anyway please do be sure to get other disorders ruled out before you decide to just eliminate entire groups of food. Just in case it's something besides a food intolerance.

I hope for your sake that food eliminations can heal your pain, because I know how much I wanted that to happen to me - Living with pain really sucks.

Hi, I was told years ago I had fibromyalgia and IBS. I did a bodybuilding competion and afterwards started coming down with so many health issues. I was 29 then, I blew it all off. I also had to have 3 major spine surgries-not because of the bodybuilding. Well, here I am now 42 and just found out over a month ago I have Celiac Sprue. I had been throwing up, all the other nice things with this diease since April of 2006. I did find a great doctor when I finally decided to go to onw. I could not handle the pain in my stomache and sickness anymore. I too am having very painful joints, lower back pain that leads in to my legs. I hurt all over. The strange thing is I was doing OK pain wise with fibromyalgia symptons until I started on this diet. It is so nice to read all this information. I am getting in to another doctor soon and hopefully find some relief. Thanks for all of your help. Valerie

Hello! I am originally from Lane County, but now I live in Coos County and am only about 2 1/2 hours away. I've also been looking for Celiacs in my area, but haven't found any yet. Are you newly diagnosed? Have you found a support group?

Hi, I live in Roseburg and am looking for people to talk to as well. I ahve been with Celiac for over 1 month now. It would be nice to ahve a support group in our area. Thanks-Valerie

Don't know about the restaurants. Other than PF Changs and Outback, who both have gluten-free menus.

Here's some mainstream snacks though

Cool Ranch Doritos.

Cheetos

Lays Stax

Fritos

Reese's PB Cups

M&M's (all but the crispy kind I believe)

Butterfinger's

None of the crispy rice chocolate bars are gluten-free in the US (they add barley malt). Might have to go to Canada to get some...

Nancy

I had on halloween a butterfinger mini and reese's mini peanut butter cups. I felt awful the next day. Major cramps and bloating. Are you sure they are Gluten Free?

I can totally relate to flairups. And it seems like I haven't been eating anything bad.

I stopped with Gluten in May, but I am sure I have gotten cross contaminated bunch of times because there were so many things I didn't know had it and I used the same pots and pans as the rest of the family.

So I really only started in October. (Stopped with Dairy in June and Soy in October too.)

As far as I know I have no more intolerances, but I am wondering about Corn and Egg... I really hope not though, cause like you said, what is there left to eat?!?!?

(I have allergies too.)

I seem to do well for a week or so and then BAM! I get sick for a week. The last two times it was after I ate Corn Chips and Brownies (it was free of everything bad but egg). I don't know if I got cross contaminated by the Corn Chips and if it was the Egg or the Chocolates in the brownies.... I get sick for a week when it happens. Or it takes me a week to get back on track. It is really bad. Grr...

But I do have other times when I have been totally clueless on why I got sick. I live in a house that is full of Gluten...

I have only know for a month that I have this disease. I have had it for along time due to all the symptons though. I have been so strict on this diet and YES I am too having some bad flare ups!!! I think it is due to time and healing. Not only that if you have much stress in your life like I am right now it will make you feel like crap! Get to feeling better!

I have only know for a month that I have this disease. I have had it for along time due to all the symptons though. I have been so strict on this diet and YES I am too having some bad flare ups!!! I think it is due to time and healing. Not only that if you have much stress in your life like I am right now it will make you feel like crap! Get to feeling better! Valerie

Hi, I am new to this and posting. I tried to post a few weeks back but no response. I am hoping this goes through. I am now 1 month in to this. I would like to find out, what kind of candy and gum are safe to eat?

Have any of you tried Amy's Gluten-Free Pizza? It is pretty good if you add to it. I love Pizza so I am missing that the most.

Is melodextrin Gluten? I need help please I hope somone sees this!

Thanks,

Valerie

Well, this is my first upcoming Thanksgiving since I have been gluten-free. I can't wait to go to Grandma's house and explain to every relative why I am not eating. Then they can all think that I am anorexic or sick. And then I get to explain what Glunten Intolerence is 350 times, again and again! I guess I will eat before I go and bring my favorite pack of Camel Lights and a REALLY BIG bottle of Red Wine. It almost seems to not even be worth it......

Okay, I'm done venting! Sorry guys, I had to post.....I know that there is someone else out there with these same issues going through their mind. I will be thinking of you all on thanksgiving. One thing that I am thankfull for... THIS WEBSITE!!!!!!!!!!!!!! Later all, BRIZZO!

I can totally relate, I have only been on this 3 weeks now. Thanksgiving will be tough. My Mom makes thee best homemade rolls and I can't eat them. Oh well; hey I used to bodybuild, if I can have that kind of discipline I can do this gluten free stuff. I guess thats what I get for doing that kind of sport. My Mom says thats what caused this.... Whatever!!! I sure do miss my PIZZA!!!!!!!! I have tried two pizza doughs and they are YUCK!! I am not liking this. I am thankful this thanksgiving, I still can drink wine. TC!!

Hi, my name is Valerie and I have been sick for so long. I found an awesome GI doctor here and he knew just what to do. I am glad to find out, I have been feeling better. I was always so sick to my tummy, sometimes throwing up and major lower ab's problems. My Mom has been so caring and helping me read labels. I miss my pizza really bad. I have now tried 2 pizza doughs and they are YUCK! Does anyone have a really yummy one out there?

I need to know what candy is safe? I cannot bear the thought of getting sick again. I have been very good about this diet. I have always eaten healthy, I used to body build so it is like going back to that. However, I want something sweet sometimes. Can you eat stuff that has cocoa in it?

Any advice would help, also I have had really bad lower back pain and leg pain. I am so tired to, do any of you get that?

Thanks and I am glad I finally found a group.

Valerie