pixiegirl

I posted this in another thread... I take a Rx called Gastrocrom for another GI issue I have however it helps me hugely if I get glutened. I'm not suggesting that anyone take it as a way to eat gluten (it doesn't work that well but I get pretty severe symptoms and I'd say it cuts them by about 75%) its a med for people with food allergies but in some way really helps with glutening. Its not dangerous as far as meds go so you might want to discuss it with your GI and see what they say about it. You mix it with water and drink, it adds no flavor or color at all.

Susan

I'm in MA, beautiful Cape Cod we have a Celiac group right here on the Cape. I do my shopping at Whole foods (in Hingham) Stop and shop and Cape Cod Natural Foods in Centerville.

Susan

Wow the Outback by our house is crowded constantly. I always have the salmon there and the baked potato usually with a Cesar salad and I've not had any problems, however I'm really careful (talk to the manager, waitress, etc) and I know the Outback by my house is very gluten aware.

But I do agree with those that said, when you eat out you are taking a chance. I'm really sorry your experience turned out so badly.

Susan

Wow this thread got full fast! I'm no where near 40... I'm in my 50's but I feel 40!

That Rx cream that was talked about earlier is a type of retin A, it does help with wrinkles that are not deep however, wrinkles that are caused by dynamic function (i.e. movement) will soften up but they won't go away (unless you botox), because they are made by muscle movement and well unless you stop the movement you can't stop that wrinkling (like laugh lines around eyes, or that line you get between your eyebrows from scowling). In the USA Retin A requires a perscription but mostly any dermatologist will Rx it for you. Once you start using it you CAN'T go in the sun any more, it makes you highly sensitvie to sunburn.

I used it, I have thin, sensitive skin and it makes you peel for a few weeks, I couldn't tolerate it I was actually bleeding on my face it bothered my skin so much. So I guess I'll have to wrinkle (but ok I do botox so I'm holding it off as long as possible).

I love being my age... the last 5 years have been just excellent for me, some of the best of my entire life. I got divorced, found a wonderful boyfriend, made a new life for myself, figured out my gluten issues, my daughter and I relate in the very best way (she is 15). I've traveled and bought a fancy car! In 2 weeks I'm getting a huge built in new refrigerator!! (don't get me wrong there have been a lot of no so good things in my life too, but... I choose not to focus on them as much as possible).

Susan

Hi Julie,

I wanted to say hi and lend some support... (as so many others have done, this list is a great place for info and support).

It can be overwhelming at first... and because there are so many "side" issues with gluten, like cutting boards, wooden spoons, wheat in many vitamins... it takes most of us a while to get totally well, partly because of the time it takes us to figure it all out and because it takes time to heal.

I'm really organized and when I found out I had Celiac I went at it like a vocation, I'd say in a month I understood what I needed to do.... however it did take a few months at least to get it all done (especially to figure out what vitamins I could take, which soaps, shampoo's etc.)

I got a lot better.... however I did not get totally well, so a year after going gluten-free I finally had a GI scope both ends (too much info, I know...) and we found out I had another condition as well... called Eosinophillic Gastroenteritis. This condition is related to food allergy and I'm now dealing with that.

So... while I had another issue (and a number of people here have other things going on as well) I think if you find a good GI to work with it will help (and many of us have lost a lot of faith in doctors, it took me 11 years to get diagnosed), but a scope I think will give help you figure out what is going on. Make sure the doctor tests/looks for other things while he is in there! We went looking for... well it was more exploratory then anything else we didn't know what we were looking for, but I'm thankful my GI knew about EG and did the biopsys for it. The good news is my avoidance of gluten is working my scope showed no signs of Celiac!

My point is, its a long road and it takes a while to figure it all out, hang in there and this list will help you. I'd skip the vitamins at this point a lot of them contain gluten and I don't think anyone needs $450. a month worth of vitamins.

Susan

I make a quick "homemade" chicken and rice (or potaotes which ever I feel like) when I'm in the mood.

I alway have on hand the organic free range chicken broth (and gluten-free) by Pacific (I think Imagine makes one too). I pour it in a sauce pan and put in some onion slices, carrots, garlic (and 2 quartered red skins if I'm using potatoes), when the carrots and/or potato is soft I add in other veggies I've cut up, broccoli, peas, kale, corn, spices, and left over wild rice (if I'm not putting in potatoes) whatever I have on hand. I cook it then to get the veggies to the desired softness and serve. I do it in personal size so I get about a bowl and a half and it takes about 25 minutes tops!

Its easy, healthy, and tastes fantastic!

Susan

Are you taking the Gastrocrom daily? I take it 4 times a day, with meals and before bed and it has a cumulative effect, the longer I took it (for the first like 8 weeks) I got better each day and had fewer symptoms so you might find as time goes on you won't have the stomach ache either.

Its really worked for me with gluten mistakes but again I want to make it clear that I don't take it for that reason, I have another condition that I have to take it for but I've so noticed it helps with the effect (probably not the damage) of glutening.

Susan

I don't have much more info on the Gastrocrom...

I feel much better now since taking it for many months and its obvious my leaky gut is healing/healed... when I started it I got a list of foods I tested allergic too and when on a rotation diet and along with the Gastrocrom I did start to heal up. My allergist said that once my gut was healed I would probably be able to tolerate some of the foods I had positive allergy tests too and that is proving to be true.

However I react the same way to being glutened now as I did when I had the leaky gut, so I'm not sure if you heal yours up it will change your reaction to getting glutened. But if I take the Gastrocrom right after my gluten symptoms start it makes them less severe. But they start out the same as when I had a leaky gut, which is immediatly (within 20 minutes of ingesting gluten) and they are severe. I really believe the Gastrocrom helps with masking the symptoms.

Susan

Oh I hope you don't think I was pointing the finger at you, really a lot of people train their dogs with punishment as opposed to positive reinforcement and I don't think its a great idea. Just my opinion. Cesar Millan has a TV show on the National Geographic channel and I really like him. Also you can google Dog Whisperer and find him.

Susan!

I don't know about the damage.... I certainly don't want to eat gluten to find out... I'm guessing because of my two conditions that I will be re-scoped sometime next year to see how I'm doing.

But when I was scoped in Feb. I had no signs of Celiac, i.e. I was all healed up so even though once in a while I get glutened when out... (more often at people homes then restaurants..) it didn't damage my insides in any way that was visable in various biopsies.

But I've got to tell you the Gastrocrom really helps with the symptoms of a glutening for me.

Susan

Well you've had enough info here... but I'll add my 2 cents... I don't agree with a lot of the stuff others wrote here (thats not so unusual)... I don't agree in smacking a dog... but I will tell you your puppy is too young for "formal" training.. its like trying to teach a baby.. they aren't ready for it physically or mentally. But do get your pup use to the ball (or stick or whatever your going to throw).

For a "good" dog I highly recommend watching the dog whisperer (Cesar Millan), for the most part he understands dog pack behavior very well. He does use a signal for "mistakes" always a noise or jerk on the lead but there is no real punishment involved. Nor does he use huge amounts of praise (that just doesn't happen in the pack world).

However he mostly aims for a good dog that works well in a family... walks on the leash, isn't dog or people aggressive and has no obcessive behaviors. He isn't doing formal training with dogs, i.e. obedience, agility, hunting, or scent work. I'm not a professional dog trainer but I've shown dogs since I was 8 years old (on and off) in obedience and agility trials, I've trained a wide variety of dog breeds and had to deal with all sorts of dogs (my current is a very Alpha female Airedale Terrier that has dog aggressive tendancies). And for formal training I have always use food rewards (very tiny pieces of dog kibble, thank god most dogs I've had are chow hounds) and a noise for a "mistake". My best advice is be kind and patient and never lose your temper.

I started training my current dog, Daisy the Airedale as a search and rescue dog (she did agility as a 1 year old but just for fun and bonding we never went into any trials) but as I got into it I realized with my job I don't really have enough time to do that (you have to go out all the time and do searches often far away.. in the woods, in big cities, junk yards, etc, very time consuming) and I decided I'd be far better served if I trained her in a different way.... you see I'm almost deaf so I've trained Daisy as a hearing dog.

She now has quite a wide variety of sounds she responds to.... my burgler alarm, fire alarm, door bell, knock on the door, telephone, my stove beeps, my tea pot boiling (can't tell you how many I burned up prior to teaching her this), my alarm clock. On top of that I've trained her to do a lot of silly tricks too.... she army crawls, spins, covers her eyes and knows the name of several different toys (get your lamb, get your kong). And trust me when I tell you that Terriers are not the easiest dogs to train!

So again, I'm no expert but patience goes a long way, repetition, frequent short training periods (certainly daily usually a few times a day), and for a pup I'd make sure the training I did was more fun stuff, getting use to balls, having fun with them, walking on the least, good manners (no jumping, barking etc.)

Good luck and enjoy that pup! (I so love dogs)

Susan

Wow this is very interesting! As some of you may have noticed (I'm not sure anyone has!) I use to be on the list a lot and now I'm only on occasionally.. due to.. well a lot of stuff going on. However I was going to post about Gastrocrom but didn't because I was fairly sure it wasn't going to be well received. Maybe I should make a seperate post about it....

Gastrocrom is cromolyn sodium and its mixed with water and you drink it (and I'd like to add that you can't taste it and its clear so there is nothing gross about taking it). From my understanding its fairly benign as far as Rx's go. I couldn't find a lot of info on it but it is used in food allergies and to simplify things its sort of like drinking benedryl in that it helps stop the allergic reaction from food in your stomach and intestines.

I was diagnosed with Celiac and did well on my gluten-free diet but still occasionally had bouts of problems and I knew they were not related to gluten (I was sooo careful), so I went and had an endoscopy and colonoscopy and the biopsies showed I had eosinophilic gastroenteritis, which is thought to be related to food and enviromental allergies. The most common therapy is steroids but my allergist didn't want to put me on such powerful drugs with such serious side effects so he put me on Gastrocrom 4x a day (with meals and before bed).

Whether it will help you or not I don't know, its worth a try for sure...

However the part I was going to post but chickened out is this: My gut has healed up a lot since I've been taking the gastrocrom... I'm almost symptom free, which is what our goal was of course, to heal my leaky gut so larger particles of food don't enter my blood stream and cause that "allergic" reaction. Since I'm feeling better I often forget to take the Gastrocrom with every meal, not really a problem says my doc as long as I'm feeling better and take it most of the time.

What I have noticed is this (and it relates to Celiac)... while I was taking it 4 times a day (a period of about 8 months) I wasn't once glutened... now that doesn't sound so unsual for a long time very careful celiac right? Except when you add into the equasion that I eat out often due to travel, sometimes 3 meals a day for a week or two. Hard to believe I was never glutened. But I did believe that. But then a couple of months ago, I was in a restaurant with a friend and found out I was glutened.. they made a mistake.. sure enough about 20 minutes after eating I started to get symptoms of glutening... by the time I got home I was in pretty bad shape... terrible stomach pains etc. I thought about how the Gastrocrom helps with those symptoms with my EG so I figured that I'd try taking some then. And guess what... my symptoms of glutening backed off about 90%. The next day I felt pretty good, a little brain fog, but nothing like I normally get.

I have since done this once since then when I knew I was glutened with the same result.. it made my glutening symptoms go almost totally away. The reason I didn't post about it (and I know that seems totally unfair) is that 2 times isn't a very good test (I got very little gluten both times) and in the past when people have discussed things like meds to take away the symptoms or hide the response some members of this list have gotten pretty nasty. Many think for example that the drug they are working on at John Hopkins, I can't remember its name but it starts with a Z.... it blocks something that allows the damage to happen to our gut from glutening well a lot of people went off on how they would never take such a thing, how it might just hide the symptoms (I'm guessing they will test it to be sure the gut damage doesn't happen but thats just my opinion) and so forth.

I'm going to guess that the Gastrocrom doesn't stop the glutening from happening, nor the damage to your gut (I'm not sure about that) but I know for me.... it really stops the pain and other symptoms from glutening. I would never use it so I can eat gluten but with my travel schedule it would be wonderful to have something that will make me feel well enough so that I can get out of bed the following day should a gluten accident happen. And right now Gastrocrom does that for me.

Many times in the past I've seen posts that say "help I was glutened now what can I do", I've just realized that for me, the Gastrocrom really helps. I don't know if it would help if I took in a lot of gluten and I don't want to find out, being gluten-free to me now is just part of my life, I hardly even think about it anymore, but it is nice to have something that helps. Whether it would work with anyone else I don't know, but it does work for me.

If anyone thinks I should post this under its own heading I'll be happy too, a lot of people might not see it here but don't kill the messenger, I'm not trying to put up something that will allow us to eat gluten but in the case of an accident it might be just the ticket.

Susan

I had blonde hair until I was in my 20's then it stated to darken which is when I started to highlight it. I'm 51 and I still do have it highlighted about every 8 weeks. I too have an issue with thinning hair. When you have this problem you need to figure out if its just breakage from over processing or if you actually are losing it at the hair follicle. I sadly have both. I'm now getting less hair foiled but I'm losing the number of hairs I have on my head and I hate that!

I don't think its related to coloring my hair at all, I get it foiled and very little if any ever gets on my scalp. I think its aging and hormones but if anyone has any advice for what to do about thinning hair I'll take it.

Thanks, Susan

Yes it makes sense... and I'm on the fence about the entire issue, I'll have to give it a lot more thought. Yes I agree we should get what we pay for.... however I also feel that restaurants won't even try to offer any sort of gluten-free menu if it must be "100% gluten-free, 100% of the time" ... mainly because that sets a legal precident that would open them up to lawsuits and it wouldn't be worth their effort to even try. It could also make them responsible in a legal way for possible cross contamination that could happen from a suppliers food (say spices) and no one in their right mind would take on guarenteeing that a supliers food was totally gluten-free. So in my mind its a confusing issue.

I just think that our entire food chain has to become more up to speed with the issues of food allergies, intolerances and diseases like Celiac before you can put the weight of this on a restaurant.

I want to be healthy and I also need to eat out. As I've stated before I do eat out often, when I travel which is maybe ever other week I will eat out 3 meals a day. And as I've said before I've had pretty good luck with eating out. Yes I have been glutened but it doesn't happen too often. And even with occasional glutenings I was rescoped this past February and all my biopsies were fine, no trace of any damage at all so.... I guess I'm doing ok.

I honestly think the only way a restaurant could promise to be totally gluten-free is if they didn't allow any items at all with gluten in them. I don't have a totally gluten-free household, my daugher does eat gluten (although not often) and I do as much as I can, seperate pans for her, seperate utensils, wipe everything down, and I still once in a while feel glutened at home so I feel it would be pretty hard to demand a restaurant that does serve gluten guarentee me that their gluten-free menu is always gluten-free.

Ahh, maybe I'm too easy, I'll think on it.

susan

Just so you know... my daughter has a life threatening allergy to peanuts, her reactions are even airborne (but only in places with tons of peanuts like Fenway Park). And we have had restaurants say to us when they find out, there is nothing here she can eat. These were not restuarants that even really had any peanuts, not chinese or thai, one was just a local place, steak house sort of thing with no peanuts on the menu and when I asked what they use in their fryers it was Canola oil. They were just covering their butts and that made me so mad. So even with peanut allergies you get the shaft at times.

Susan

I have pink and white nails... the nail stuff is by Tammi Taylor and I've had them for years and have never had a problem with them at all. I'm very sensitive to gluten, but to be honest I've not written the company to inquire about gluten in their products.

Susan

Childbirth... without any doubt. I was fine until after having my daughter and it started up almost immediately then.... however it too another 11 years to find out what was wrong.

(its all her fault!)

Susan

Although it was said before, its really important to keep in mind, that the gluten changes how you think. The times I've been accidently glutened its like taking a downer pill, life looks bleak, I lose my zest and everything else is just rotten. That's not me being a pain in the butt, its the gluten playing a number on my brain because most of the time I'm pretty upbeat.

And its for that reasons (and how physically awful it makes me feel) that I won't eat or test any gluten again, its just not worth it. I know this sounds "pollyannaish" but now that you know how badly it affects you, you can get excited and upbeat about trying to never let that happen again.

I was diagnosed almost 3 years ago (after 11 years of illness) and initially I was on this list 2 times a day, Celiac was all encompasing... but now 3 years later I come here occasionally to keep up with new food products and say hi to the group... Celiac no longer defines me... as a matter of fact my diet is now so second nature that I often go days with saying or even thinking the word Celiac.

Susan

I have Celiac, food allergies and I eat out. I am very sensitive to gluten and react at very little and get sick for a good week or so from it so I don't take too many chances, however do to the nature of my job and life style I have to eat out.

I've posted here before all the rigamarole I go through to eat out. I do internet research into restaurants and often e-mail them before I fly into that city explaining what I need and asking if they can do it. I usually only go to very upscale places where they don't have food that comes in partially "done". They make all the sauces, dressings ect.

Once I get there I talk to everyone and ask to speak to the chef, I've rarely had them say he can't come out, usually due to my e-mail and/or phone calls they already know about me. In very upscale places I've had almost no problems. I recently had a wonderful risotto at a great steak house, they made even the chicken stock from scratch and we went over all the ingredients, I ate it and was fine. I can almost always get steak, fish and baked potato in a good restaurant with no problems. But so many fine restaurants reduce their sauces they don't add flour. Most of the chefs in good places seem to know all about gluten already.

Just the other day I tried a new place and I always say i have very serious food allergies, it seems that makes more sense to a lot of people, the chef came out and said this is a gluten issue right? He knew all about spices, soy sauce, the whole 9 years.

I just refuse to give up a huge part of my social life that revolves around food and eating out.

Susan

I never suggested any starvation diets and I don't think you need to go on one to lose weight, I lost 25 lbs and have kept it off and i just changed my portion sizes and exercised more. Do I think this will work for everyone? Nope, but I do think that most of dieting is willpower, yes some people have hormonal disorders and other medical conditions that make it far more difficult for them to lose weight, but I did it when I was over 45 and certainly my metabolism has changed a lot. I'm not trying to pretend I have the answer for everyone... I hate when people start jumping on me, I'm just thinking outloud here... I was just saying that the reason so many doctors don't push diet is that most people can't do it for whatever reasons.

I'm not sticking up for either group I'm just making some observations. I agree that it is hard to lose weight and keep it off and since sticking to a gluten-free diet appears to me to be easier then dieting to lose weight and keeping it off and so many people can't even stick to a gluten-free diet, I was just making the point that that is probably why so many doctors just offer the Rx, they get frustrated with people not trying. I'm not saying either group is right or has it easy, etc. Again just an observation.

Susan

  Nancym said:

........... Doll, I could point you to a bunch of people that have gotten off or reduced dramatically their drugs for managing their Type II through diet. There's a support forum I frequent where this story is played out time and time again.

I'm sure that's true and just for the record I was agreeing with you. And like you, if I could fix something with a dietary change I certainly would but sadly I don't think most people feel that way. I see it even on this list, its posted again and again... people who cheat occasionally, people who say their relationships suffer because they are so often sick and don't have any energy but then admit they cheat or aren't careful, so many people that just say they can't do it.

I would like to think that most doctors would talk to their patients about dietary changes but I don't know if that's true. A friend I grew up with is a doctor (internist) and she gets so frustrated with people that refuse to lose weight and then constantly have health problems... they usually say to her, "I can't understand why all this is happening to me". Even when she tells them why most refuse to listen or say they "can't do it" . Its a failure all around.

Susan

Wow this is a long topic I wish it were possible to sum it all up into some simple points... and its covered so much. I think Dr's. do just send a patient home with an Rx because in most cases patients won't/can't lose weight. I can't tell you how many people I know that have been told, either lose weight and take no blood pressure meds or take the meds, and they don't even stop to think about it, they just head off to the drug store to get the Rx.

Our paper recently did a series on being overweight and when I was young the number one health problem world wide in regards to eating/nutrition was starvation, much of the world did not get enough to eat. Now the number 1 world wide issue related to eating is the exact opposite, health problems caused by obesity. (yes I know people are still starving in various places but its not the foremost food related health issue). In just 20 years or so its turned around 180 degrees.

The world is just overweight and its getting worse every day. And many of those overweight people have health issues that would turn around if they were at a normal weight and even if the doctor doesn't say so, they can't pick up a newspaper or magazine today without knowing that, but do most of them lose weight, nope. I'm not sticking up for doctors believe me... it took me 11 years and a few doctors switches and tons of specialists to get a Celiac diagnosis but when it comes to weight, if telling someone they'd be healthier if they lost weight would do the trick we wouldn't have this issue.

On another issue this topic touched on.... I did some quick research and Asians do have celiac disease. I'm not going to debate the issues of genetics for a few reasons... first being I don't know much about it so what I say wouldn't count for much, and number 2 unless you are a geneticist (a friend of mine is) I'm not sure I'd buy what you say either, I do know its a pretty complicated subject. However again from the research I did Asians have celiac and it makes me wonder if they were as wheat eating as Americans would their incidence of Celiac be just like ours, rice is the major staple of their diets for now (thats changing too).

So are you all saying they can't get it due to genetic factors (that doesn't seem right since they do get it) or that because they don't eat a lot of wheat they don't get symptoms and its not diagnosed as much.

I'm sorry I'm simplifing so much but not all of us are scientists! (now if we talk about finance and the stock market I'll give you a run for your money).

Susan

I travel constantly both for work, with my boyfriend (his job) and fun. I have it down to a science and I rarely get glutened in a restaurant. I tend to try and eat dinner in upscale restaurants and I will eat steak, fish, baked potato and a sometimes a salad (I bring my own individual packets of dressing). If I'm not familar with a restaurant I call and we talk to them in depth once there.

If I need to eat breakfast out I do poached eggs and fruit and again talk to the breakfast place.

I use a lot of what others posted, I carry snack bars, gluten-free soy packets, salad dressing. I research ahead of time where a whole foods is and what sort of restaurants they have in the area I'm in. It takes a bit more work but again I'm rarely glutened.

Susan

Well I do wash all my produce very well, I just happen to think that organic is better then chemicals. They know for a fact that many pesticides can damage your DNA, I don't think that is true with manure related fertilizers.

But yes with just about anything you can find something wrong with it too much sun you get cancer, too much water you drown.... I think regardless of which you eat you should wash them all with care. They are all touched by people (kids) at the grocery store, some fall on the floor, etc. I don't know of anyone that picks them up and just eats them!

I'm only speaking for myself, but finding out about things like wax or manure doesn't scare the hell out of me, it just makes me handle them or prepare them differently, not only am I concerned with gluten-free and my food allergies but good health in general.

I guess I don't scare very easily.

Susan

I'm not sure I'm buying that apples are dyed.... I go to a u-Pick orchard that is all organic and the apple flesh is often stained red and I know these are not dyed.

However, I buy organic everything more often then not, yes its more expensive and I just buy less but at least its more healthy, which is my goal.

Susan