pixiegirl

I'm a member of apfed.org, I have EE and EGID... So I like to say ED which means eosinophilic disorders (but seems to mean another disease that you take Viagra for!)

Anyhow, I also have Celiac and I got better when I went gluten-free but not entirely. I feel so lucky that I had a GI doctor that kept looking and I was diagnosed via a biopsy. Once I had the diagnosis I was sent to an allergist, allergy testing was done, elimination diet and I've pretty much got it under control. I take gastrocrom for it, which is a mast cell inhibitor and that has really helped me a lot.

I'd say that getting a proper diagnosis for EE is really important, otherwise you might be limiting foods or doing the wrong thing for a condition your child may or may not have.

Good luck,

Susan

We use a lot of barbeque too.... in my pantry right now I have Kraft thick and spicy, Annie's Barbeque sauce (says gluten-free right on the label) and the other one that is not in my pantry cuz we ate it is great and I believe its called Bone Sucking Sauce and I think it says gluten-free on it too.

Susan

I'm going to show my daughter this thread... she is trying to be gluten-free but is a bit casual about it.

I've been diagnosed for about 6 years and I've been sure she has it from the get go. I had her doctor test her and he said the first test was inconclusive. About a year later he tested her again and her blood test was positive. I was originally diagnosed by Enterolab.

The compliance rate for teenagers isn't real high, its very hard for my daughter. She also has a life threatening peanut and tree nut allergies so most of the pre-packaged gluten free food she can't eat because it contains exposure to nuts. I pack her a lunch every single day for school but often the kids do things after school (unplanned so she won't have snacks) and she buys things out of the vending machine. She sticks with things like Doritios but they make me sick every time so i feel they have some gluten exposure. And right next to her high school is a pizza place and a Dunkin Donuts and often the kids go over there.

But she is trying and our house is totally gluten free. She does feel better when she is gluten-free so thats what I'm hoping will convince her in the long run. One thing I've done... I've made a promise to myself and my daughter NOT to get mad, or threaten, or pout when she "goofs" with gluten. First I like to know and if I don't get angry she is willing to tell me, her mood changes so when I see her getting "prickly" I ask her, "is there any chance you might have had some gluten" and because of my attitude she feels comfortable saying "i might have at (fill in blank)" And at least then I know we may be in for a rough couple of days.

If you get angry or make threats (your going to die young, you'll get this or that other disease) the discussion about it won't continue. I've found that she is getting better at this as time goes on and I believe my positive attitude is helping a lot. When she tells me she might have gotten glutened, I'll say oh bummer your doing so good too, the next couple of days might be rough but lets keep trying, its hard to do this and your doing great. So far for us its working but kids take longer to convince and as long as you give them the info and keep it positive I think it will eventually sink in!

Susan

Personally I'd say any "ex" that is getting gluten all over my kitchen isn't really helping at all (I don't know your situation so I can't really say but sounds like a lot of extra work).

I've been gluten-free for about 6 years... we didn't find out my daughter had to be gluten-free until about a year ago, it was at that time I changed the entire house over to gluten-free. I wish I would have done it sooner.

Its funny because prior to making that switch I was VERY VERY careful with gluten and so was my daughter, when she ate cookies or something with wheat she would carefully open the package, use it only on one counter, we'd both clean up. And I thought we were doing ok.

But now that the entire household is gluten-free I feel so much better (and I thought I was fine before) I have more energy, fewer rashes, etc.

I did change my dogs food to gluten free because we all kiss the dog and I didn't want her to have gluten all over her sweet face.

Good luck,

Susan

Both my daughter and I suffer from depression when we are glutened, mine is mild hers is pretty severe. She also has panic attacks and we are hoping that the longer she is gluten-free (she's only been doing it a couple of months, at 16 she "goofs" a lot) the fewer panic attacks she will have. Its very difficult to go thru.

Susan

To reiterate what others have said, dairy bothered me for a while after I went gluten-free, I think my insides were just so beaten up by eating gluten and such for so long. After a couple months of no dairy I started using a tiny bit of cream in my tea and initially that got my belly rumbling and I had a little D. But I kept using it just in tea and after a few days I was ok.

Now I can eat cheese, yogurt, and even a bowl of cereal and other then occasional gas I'm fine. Just so you know I was told that yogurt naturally has very little lactose so I don't think its the lactose that is bothering you.

After being gluten-free for a year I was 98% better but still had some issues and went to an allergist and found I had quite a few food allergies. So that could be your issue too, it seems like a lot of people on this list have food allergies. So if things keep bothering you, allergy testing may be something to look into. Most of the food I'm allergic to I can eat in small amounts occasionally.

I don't eat processed foods that say they are made in a factory that also handles wheat, the chance for cross contamination is far greater and I've reacted to those types of foods before.

My daughter does eat those foods and I feel she reacts to them frequently, but she is 16 and trying to cope with yet another food restriction. Each person has to decide for themselves on that one.

Susan

Yikes! I was just kidding and I thought the comment about me putting the top down and letting the excess food blow out made that perfectly clear. They were not comments "directed" at anyone. And I can't imagine why you thought they were directed at you.... you didn't start the post (at least i don't think you did).

But this one is directed to people who find offense at others posts: I think we all need to count to 10 before we answer and then ask ourselves.. without being able to hear their voice or see their face, could they possibly have meant their post in a different way then how I'm taking it? If we all start to assume the comments people make are nasty jabs at us, in no time at all, every forum on the internet will turn into a war zone. I've been here a long time and this group is a fun group with a great sense of humor.

Secondly... and maybe this is just me.... but I'd personally never be offended by a remark made that was made to me on an internet forum, from a complete stranger, that does not know me or my family. And I'm sorry if you were, but again the remark was not made at you at all.

I'm sorry if anyone was offended however, I would never seriously "diss" someone for feeding their kid in the car or not. Its your family, your car, your choice. My remarks were how I feel about my kid and food in the car.

Good Luck,

Susan

Hi Lisa,

I just wanted to say welcome to the forum from Cape Cod!

Susan!

I've been looking at the Bowflex tread climber, has anyone used one? What is the "action" like on it?

Susan!

Hello? Kids eating in car = mess (I don't care if they are gluten-free or not!)

Really we only live once and its just a big pile of steel and tin. I guess you need to ask yourself what is more important, kids or car. No contest for me.

Susan

(put the top down like I did in my pix and let the food blow out - OK I'M TEASING!)

I'm not sure what other food restrictions you have and I certainly understand that the more you have the more difficult it is to eat on the road.

My daughter has: gluten, peanuts and tree nuts.

I have: gluten, tomatoes, squash, beans and I can eat small amounts of lettuce.

We have traveled all over the world and I travel monthly (at least) with my job and at least 5 or 6 times a year for vacations.

I think the only advice I can give you is you have to be more assertive. For me 5 minutes of direction to the wait staff isn't a big deal. I certainly could not eat, nor would I attempt too, salmon that was on pasta, I would be so ill that I wouldn't be able to work for a few days. So for me, I have to spend the time.

And if you didn't know the dish came with pasta you didn't do a very good job at explaining your food issues. I made it very clear I can't have gluten and I always run down that this includes a whole lot of other products, bread, croutons, pasta, flour used to thicken sauces or salad dressing. I also printed out a tiny little list that in some places I give to the waiter. (if they chef comes out to speak to me I don't usually bother with the printed list, that in itself tells me they are concerned about food issues but when I have to deal with the wait staff I give them my list which is only about 3 inches by 3 inches but it quickly outlines where gluten is: bread, pasta, flour used for thickening, soy sauce, etc. I've had good luck.

You said your in sales, do you have a sales area so that in time you will end up knowing the restaurants in your particular territory? I have clients that I eat with too and I pick the restaurants.. I just say, I'm sorry but I have a lot of food allergies but I know I can eat at restaurant A, B, or C. Which do you prefer. I've never had a colleague or client say: I'm not going to those. Everyone has been very understanding.

It takes a while to get the hang of it (I've been gluten-free for about 6 years) but you do, eventually. Its really helped me become more assertive as a person and for me that was a good thing!

good luck, Susan

I think there are 2 different sorts of belly issues going on here.

One is from eating whatever doesn't agree with you and is caused by gas and such.

The other one is the tendency to put on fat just in that area.

I think the fat one is a bit harder to solve and more dangerous to your overall health (that fat middle has been related to an increase in heart attacks and i think stroke)

Sadly I have both kinds... I've pretty much solved the gassy kind (except when I eat "bad" stuff, which I do occasionally... for me most greasy foods and sugars which i very rarely use) but to get the fat out of your belly area is hard. I'm certainly not fat either. I'm 5'7" and 126 lbs. But all my weight goes to my belly. I'm a bit older so I think its a product of aging as well, grrrrr.

In this months Self magazine (or maybe this months "Health") they have an article about short power walks.. I'm a great walker but I work for a living and can't take an hour or two out from work to go walking, but I can take 15 minutes here and there and this article is about short 15 minute walks.. there are 3 types.. up hills, (which we have a big one in our neighborhood) varying slow and fast walking and then, slow, fast and jog. I hope its on their web site for those of you that are interested. I'm going to do this. I walk a mile or two each day right now with my dog, but she is older and they are very leisurely walks!

If anyone else is interested in trying this with me let me know. We can check out the web site and if its not there I can post the schedule here if you like....

Susan

Oh I'm looking too, we use to have one but it died and I never replaced it. I've decided to because both my daughter and I used it and... this winter I gained 10 lbs (I've already lost 4). I don't have any trouble maintaining my weight during good weather, I'm a fantastic walker but in our wet, cold winters I just don't have the get up and go to walk as much (not to mention its totally dark once i get out of work).

So I'd love to hear more feed back on this. I too want one that inclines - at the press of a button.

Susan

Does anyone know of any chocolate that is gluten-free and peanut free?

Susan

Your right it was long and the text was so tiny I couldn't read it all, next time for us middle aged folks use some paragraphs to break it up!

I'm not sure what to tell you and I hope other will have better advice. You certainly have the symptoms of celiac (albeit they could be symptoms of other things as well).

I first got my symptoms after I had my daughter as well. I trekked back and forth to doctors for 11 years. I was told all sorts of things, chronic fatigue, IBS, lactose intolerant. I kept getting worse and worse. My Dr. at that ran some more tests and he mentioned in the office the names of them. The only one that stuck in my head was Celiac and I had never heard of it.

I went home and googled it and couldn't believe what I read. That very day I had the blood test for it I went gluten free. The Dr. called me a week later and told me the test was negative. I was stunned because for the first time in 11 years I did not have stomach pain or the runs. I told him this and he said, "Its all in your head". (wrong end buster!).

I changed doctors, continued to be gluten-free and paid for the entrolab testing for Celiac. It came back positive (and my DNA was the strongest for Celiac) and I was sold. My new doctor sent me to a GI doctor and by the time I got in to see her she said I had been gluten-free for too long for an accurate blood test and /or biopsy. But she said you did the golden test, you went gluten free and got better, thats the test that counts. However, when she looked up the blood tests my previous doctor had run (1 single test) she told me it has not been used to test for Celiac for some time and the results of it are not valid.

I've been gluten-free for 6 years and feel great. Interestingly my 16 year old daughter was tested for Celiac last year and she turned up positive - no big surprise. But to me it confirms the fact that my first doctor was a jerk.

I didn't need a strict medical diagnosis and I'm glad after 11 years of feeling terrible I didn't wait for one. I guess some people need one to "stick" to the diet but I felt so good, so fast after going gluten-free that I have never once cheated (I've been accidentally glutened but I've never intentionally eaten it). If you need one and don't want to pay for private testing then its time you find some doctors that will do the sort of testing you need. I'm not sure where you are from but I'm sure there are people on this list that can help you find some good celiac friendly doctors in your area. Also I'm not sure 1 meal a day is enough gluten but others may know more about that.

Good luck, Susan

Well we are talking two different questions:

is there wheat in mashed potatoes and why do they put flour/wheat in these types of foods?

The second question I can not answer, it honestly blows me away when they do that, when flour is added to a food that, not only traditionally does not have flour in it but that I can not come up with any conceivable reason for the addition of flour.

However I eat out a lot, I travel often (biz and leisure) and I can tell you that I often have come across plain old mashed potatoes in restaurants that I can NOT eat. I ask. I never go out to eat and not ask to speak to the chef and many times (maybe 45%) when I have asked about mashed potatoes they get an odd look on their face and say "NO you can't eat the mashed but the baked are fine). Since I'm a guest in their restaurant (and often with business associates) I don't get all huffy and ask why the heck they would add flour to something as simple and good as mashed potatoes, but it slays me when they do.

So sadly the bottom line is - never assume.

Susan

I don't think you can assume any sort of food in a restaurant is gluten-free until you discuss it with them. I have a local Thai place I go to and there are about 6 dishes I can eat and they now know me so I feel safe going in there.

But back to the actual topic, I don't really have anything new to add other then life is what you make it. I'm often times a bit surprised about how upset people seem to be over having to take wheat/gluten out of their diet (i can't have gluten, beans, squash, tomatoes and the list goes on, my 16 year old daughter has to be gluten-free and peanut and nut free so we are no strangers to alternative diets).

Maybe its my perspective of look back over 50 years of living that I know for sure adjusting how I eat to be healthy is NOTHING. Trust me when I say life is going to throw you way more curve balls than that one! But even my 16 year old daughter takes it in stride, it is what it is. She goes out with friends (just like I do) all the time and figures it out, she has had a couple of boyfriends and they are fine with it. I'm single and I've never had anyone really care about my eating issues in a negative way. I've had a few guys really seem not to care and of course they didn't last long. Most care and try and be careful with where we go.

Yes I've had a few down moments too (hey I'm human) I remember a neighborhood Christmas party, it was catered and before going I was sure there would be veggies or something I could eat there. There wasn't, it was fabulous food, smelled great and I couldn't eat any of it. All I did was have a couple of glasses of wine. And I did feel gypped about it. But we had a neighborhood bar-b-q this summer and I called the few people in my neighborhood who know about my gluten-free status and asked them if by chance they were making something I could eat. They did and so did I and it worked out.

Why don't you go to a few places near where you work, were you co workers lunch and speak to them, figure out what you can and can't eat in them. I eat a lot of salads in lunch places and I carry little packages of Annie's dressing in my purse. I also carry gluten-free soy sauce. I guess having food issues requires you to think ahead a bit.

For me, its been 6 years being gluten-free now, its just not a big deal. Again we can't always control what path our health takes (or even a lot of the other stuff that happens to us) but we can control how we react to it. I choose to have a blast.

Good luck,

Susan

I'm sure some might say talk to her, show her stuff on the internet, etc. And sometimes that works, but if you've already done that and she doesn't want to believe it, I'm not sure there is much you can do.

I'm lucky in that my mom believes me, but I have to be honest and say she didn't right away, but over the past few years she see's how sick I get then I do get accidently glutened so I think over time she's gotten on board. The rest of my family puts up with gluten-free but I know they don't buy it for a minute.

My ex-husband told our daughter I have Mauchaussens by Proxy Syndrome (a disease where a mom intentionally makes her children sick and takes the to the hospital for attention) because I told him our daughter must be gluten-free (2 positive rounds of blood work for her and a gluten-free diet changes how she feels and her mood). ** I don't have that disease, my child has never been to a hospital and other then a peanut allergy has no other health issues**

My mom sort of felt my saying the disease was genetic was some sort of blow to her ego! She aid for a year, no one else in my family has it so how could it be me?! (everyone including her has stomach issues). So the bottom line is if someone doesn't accept it or is in denial you can't "make" them believe.

Maybe you should move in with the BF sooner it sounds like the best idea for your health. If not, you'll just have to do the best you can until then.

Good luck, Susan

I'm sure some might say talk to her, show her stuff on the internet, etc. And sometimes that works, but if you've already done that and she doesn't want to believe it, I'm not sure there is much you can do.

I'm lucky in that my mom believes me, but I have to be honest and say she didn't right away, but over the past few years she see's how sick I get then I do get accidently glutened so I think over time she's gotten on board. The rest of my family puts up with gluten-free but I know they don't buy it for a minute.

My ex-husband told our daughter I have Mauchaussens by Proxy Syndrome (a disease where a mom intentionally makes her children sick and takes the to the hospital for attention) because I told him our daughter must be gluten-free (2 positive rounds of blood work for her and a gluten-free diet changes how she feels and her mood). ** I don't have that disease, my child has never been to a hospital and other then a peanut allergy has no other health issues**

My mom sort of felt my saying the disease was genetic was some sort of blow to her ego! She aid for a year, no one else in my family has it so how could it be me?! (everyone including her has stomach issues). So the bottom line is if someone doesn't accept it or is in denial you can't "make" them believe.

Maybe you should move in with the BF sooner it sounds like the best idea for your health. If not, you'll just have to do the best you can until then.

Good luck, Susan

Yes you can feel that much better in a month. Yes your accidental glutening can make your symptoms come back with a vengeance or with new symptoms.

I had stoamach pain, D, fatigue, all the Celiac symptoms and after just 5 days of being gluten-free, I felt incredible. Not 100%better but 90%.

I am super strict with my gluten-free diet... accidents do happen once in a great while... but I'm super strict for 2 reasons.. I want to be healthy and when I goof up I'm so sick its not funny, way worse then before I went gluten-free.

Good Luck, Susan

Huh? Hershey's is unfriendly? Oh no, my daughter eats there Kisses all the time... does anyone know if they are gluten free?

Susan

Well there are lots of different opinions on this but I don't go too crazy with products. Yes I use gluten free products on my face and my hair (and my body lotion) but I don't give much thought to my antiperspirant and virtually none to my nail polish.

Maybe I should with the nail polish... I'm very careful in this era of colds, flu, mersa, to keep my hands off my face but I'm sure it happens occasionally. I don't think I've ever had a problem, I use Opi products. I use Dove antiperspirant.

I've been gluten free for years now and I've had very few slip ups.

Susan

Be careful with the credit counseling agencies... there are a lot of "funky" ones out there. But do some research on it there are some that are recommended and have good reputations.

I've never had any credit problems but I know my ex husband has. They recently change the bankruptcy laws and have made it much more difficult to declare it. I believe part of the drill is you first must try and credit counseling agency.

And bankruptcy does follow you for quite a while.. I think its only supposed to remain on your credit report for 7 years but it some how sort of turns up after that. I had a friend that 10 years after a bankruptcy filing couldn't get a mortgage due to it. For sure it shouldn't have been in her record but it was and the damage was done, she couldn't get the loan.

The smartest thing to try first is a good counseling agency, they are supposed to go to your creditors and negotiate settlements for you, they usually take off much of the penalties and interest and often will settle for a less amount on the principal then you originally owed. The point here is "negotiate" don't accept the first offer you get ask your counselor if they can go back and get something better for you. That its either paying down something or declaring bankruptcy and the creditor perhaps getting nothing. Also be sure to get letters from the creditors and the agency saying you are have all agreed to pay such and such amount and when it is paid it will settle the entire debt in full and that at that time they will go to the credit reporting agencies and list the debt as paid.

There is a ton of information online about what you need to do to protect yourself. But doing it this way, if you can swing it is far better then a bankruptcy.

Good luck, Susan

Ugh.. I had an appointment and couldn't watch Lost. Do you all know if they show it again on another night or channel? Can I get it on the internet?

Susan

For my daughter's science class they all have to do a big huge project on a genetic disease and of course she choose Celiac. (she has it too).

We have found lots of good info of course but her science teacher told her Celiac doesn't really effect things like mood etc (in a pre meeting the project is just in the early stages), that's its really only a physical disease. Well we all know its not.

However we need this info to come from a reliable source... I've gone to mayo clinic and some other typical medical web sites and they hardly address the non physical symptoms of Celiac. Does anyone know of a good source that talks about the depression, brain fog and other cognitive issues of this disease?

Thanks for any leads you have!!

Susan