nettiebeads

I agree with nini - if you feel better when you're off of gluten, then stay off of gluten. 100% gluten free. No oats, barley, rye, malt, spelt, durham, tricale (sp?) or any wheat substitute that is still basically a wheat. Check your cosmetics and toiletries. After awhile, when you've been gluten-free and feeling better, you will learn to equate gluten containing foods with poison and the desire for them will decrease. And your tastebuds will "forget" the taste too. I've had celiac for 9 years and can still almost remember what Alex's pizza tasted like (local joint) But I feel SO much better being gluten-free, that I won't risk it. Ever. And I never did have the tests that drs order nowadays. Just the diet challenge was all that my gp used to dx celiac. And I sure don't doubt his dx, nor do any of my current drs. I know what happens to me when I do get glutened -it used to be D, now it's C, with extreme fatigue and brain fog and horrible joint pains. Not worth it. So please try the gluten-free diet FOR REAL! no cheating because if you do have celiac, then you are damaging your body!

Annette

My doctor says I have celiac. She tested 3 different antibodies. I can't remember 2 of them but they were low..like .7 and 1.1 but my TTG antibody was 4.1. The lab says anything under 6 is normal but she says 4.1 is not normal because it's too close to 6. she says my level should be 1 or 2. Does the really indicate celiac? Is there another test I can ask for??

thanks

Amanda

I agree with Rachel. We need more info - how long sick, symptoms, why did you go for the testing in the first place? My dr thinks that most of the testing that comes back negative is because the tests themselves are not as sensitive as they probably should be. Let your body be your guide - have you tried the gluten-free diet?

Let us know.

Annette

I'm staying tonight with a friend. Then after that its salvation army and other organisations.

I think im to proud also to ask for help. I have never been in this situation before and it eats me that i have to beg for help from friends. As an software developer im use to make good money and have access to money all the time. I dont have credit cards since i dont belive in them (but i prob get one now )

Thursday when i get my pay check i will try to rent a motel room until i get the paychecks coming.

Will post later tonight because my friends brother is a doctor and he will come and see me.

MS

I've read on another thread or celiac forum where one man was prescribed a round of steroids to get the inflammation in his intestines to settle down so that he could begin healing from his celiac. I'm sorry that this thread created such a ruckas; I've been on this forum for 5 months now and am really embarassed by some of the postings. On average, the people here are friendly and very helpful. And they are also very knowledgeable. I've learned more from this forum than I had on my own in the past nine years when I developed celiac. On the plus side - I'm glad to hear that you haven't quit trying, that you have always looked forward and have even found a new job! Congratulations and remember, what doesn't kill you makes you stronger.

Annette

And did someone mention vanilla frosting on graham crackers? I used to do that all the time!

Don't forget sprinkles on top of the frosting too! If you could wait and take the time to add them.

I'm hoping there's no permanent "gluten" damage... gee, if so, then I'd be wearing "coke-bottle-SIZED" eye-glasses!!!

Hey! I resemble that remark!!!! but I've had bad eyesight way before developing celiac. And the age thing isn't helping either. But so long as I can see a beefcake calendar or a SALE! sign I guess I won't worry.

Has anyone out there in celiac land had the experience of being overweight as one of their symptoms? and how long did it take to get down to a normal weight?

I was able to maintain a regular weight after developing celiac, but after a divorce, knee injuries, fallen arch, I packed it on. But I've cleaned up my diet (finally eliminating the last gluten source) and started working out more. Last year I maintained a net weight loss of 1.5 lbs. So far this month I've lost 3, but have been working out and have firmed up quite a bit. You know the feeling, being able to zip up the jeans AND still able to breathe. 48.5 lbs to go!

I've been on 50 mg of zoloft for 5 yrs now. My dr and I are going to try weaning me starting this April or May. I had been glutening myself for a very long time (pesky malt) and when I finally cut that out (thanks to this board) I started feeling loads better. I did try on my own w/o success and confessed to my dr. He told me it was way too soon, gave me a six month script so we could try later after my body has completely healed from the gluten (neuralgia).

Nini - now I understand your statement regarding MD standing for More Drugs. You've come come a very long way!!!

Annette

I2.) at work they were oredring food from a pizza and Hoagie place. I told them I didn't want anything and that I can't order any more cause I am gluten free. They said you are what? Oh you are wierd!

Yes, you decided you wanted to have celiac on purpose just to be weird I think most people just open their mouths w/o engaging brain. Tiresome, but at least we all have this board to come to where people understand, sympathize, and empathize. I Love you All!

Annette

I agree with Tarnalberry. Continue with what the drs recommend, but try the gluten-free diet also, since the diet won't interfere with what the drs have planned. And who knows, it may provide some relief for your friend.

Can't hurt.

Hi all,

I've been real sick for several months going to doctor to doctor and being told it's depression causing my symptoms, fatigue, bloated, gas, fuzzy head, weight loss...Finally, I went to a gastro doc who believes it is celiac. Going for biopsy next week. My question has to do with work. For several months I was so sick I could barely function. Having no diagnosis I dragged myself to work. Now my managers are telling me that I am lazy and unproductive and maybe my feeling sick is in my head. I've worked in this company for twenty years and never had any complaints about my work, always compliments. Now these managers are threatening to get rid of me. Can't afford to lose my job. My question is...Is Celiac disease considered a disability? I really need to protect myself at work. Thank you so much for listening.

How big is your company? If it has more than 50 people, you should talk to the HR about FMLA and see if there is a way around your illness until you get a proper dx and get healthy again. Unfortunately, Celiac isn't considered and disability because it doesn't affect (supposedly) your ability to do your job. Good luck and keep us posted!! No matter what your biopsy results are, I would highly recommend the gluten-free diet the minute you're done with the procedure. Didn't the GI do a blood panel? Anyhow, I do sincerely hope you are better soon.

Annette

I find your thinking very logical. There are times I'm standing in the kitchen wanting something to eat, I mean wanting, not needing, and I think about indigenous people and what they eat. They definitely eat to live.

Their version of potatoes au gratin. The commercial versions have wheat, but the wal Mart brand doesn't.

Go figure. For a really quick meal, I add a can of chicken and green beans and bake. Tastes good, gluten-free, and great for lunch the next day.

I am very religious and had a freind in highschool tell me that if I "had enough faith in God I would be healed. And that I could build up an immunity to it as well" I don't get that my faith in God has anything to do with it. Not to mention, I see it as God helped my family find the problem that had been making us sick for years and years.

I got the healing response from my mother, too. But she was saying that while I was giving her her shower. She needs me to help her with things because she has: 1. spinal stenosis (doesn't have full use of her legs), 2. mitral valve prolapse, 3. type II diabetes.

The fact that you are exhibiting some symptoms means you are having problems with gluten. The disease has 200 symptoms, and all of them can have a wide range of effects. I don't know why drs insist on getting a "medical" dx. You responded to the diet challenge. That's all it took for my gp to dx me 9 yrs ago. And I've never questioned the dx since any time I ate gluten I got so so sick. But my responses to gluten have changed over the years - less D, more C, now aches that I didn't have before in my major muscles. If gluten is poison to us with celiac disease, why do drs insist on us eating it to get a test? And the tests aren't 100% reliable either. My two cents; I do want you to be as healthy as possible. Just keep in mind that the tests can't rule out celiac, but definitely can rule it in.

Annette

I think it's very likely. Your daughter had to get her celiac gene(s) from somebody right? I never had the weight loss aspect of the disease. And right now I'm working on losing over 50 lbs. So no matter what the blood work indicates, you might want to try the gluten-free diet anyway. Nothing to lose, lots to gain!

I think there is a reason for everything in our lives, even if we aren't quite sure what it is.

That's my philosophy, too. We're mere mortals and so who are we to question the whys?

Annette

I had major surgery and a couple of minor out-patient procedures after developing celiac. The gas isn't a problem with being put under. Is it an out-patient procedure? I'd just be very careful if he's offered any food by someone at the facility. Even after clearly stating CELIAC - NO GLUTEN on my menu at the hospital, I was still given crackers (individually wrapped, thank goodness) and such.

I did a semester of ASL - I thought it was neat - I would like to relearn it and go farther with it some time.

I bet he was thinking "militant mom nut case" but we know how important the difference is between wheat free and gluten free. I wonder if the Better Business Bureau would be interested? It is false advertising.

Annette

When I went gluten-free a couple years ago, my cholesterol levels (HDL/LDL) went down to normal. However, I took a home-cholesterol test today to see if my cholesterol is too low, and I got the shock of my life when it came out to 350! I thought maybe the test was screwed up, so I opened another package and did it again. Same results!

The test only does total cholesterol so I have to get to the doctor's office to see what the heck is going on. Has anyone else had normal levels and then a huge spike?

Help

No, but mine has been going up every year, although very slowly. I have no idea why either, unless it's age. I don't eat much fat because my gall bladder does not like it at all! Definitely need a dr's look-see.

I've heard that one sooo many times. How irritating.

The other one I constantly get is "Can't you take a pill?"

Ummm....yeah...I can take a pill, but instead I choose to do it the hard way and not eat ANYTHING with gluten cuz its so much fun to have a restricted diet and worry about getting sick all the time.

HELLO...

LOL! That is about the best answer there is. But you do have to cut the lay people some slack because they don't get it. Look at how many in the "trained" medical communitydon't understand celiac at all! My pet peeve is a coworker of mine - Anything I pick up "it's got gluten" even if it's my food I brought for myself; or he'll say "I've been glutened!" meaning himself, just to annoy me. GRRRRRR

Thanks for the info!!! Although why is epidemic used in the title? It makes celiac disease sound like something you could catch. Too bad it isn't because I sure would throw it back!!!

I've made pizza for myself several times now. I use a cookie sheet because it's easier to cut into serving sizes and freeze. And when thawed out the pizza tastes just fine.

Hey all,

I am travelling from Australia to the states in Feb. I have managed to find a bunch of places in NYC and LA. A couple in vegas, however i was wondering if someone could assist in providing some ideas for places in Orange County. I read somewhere about a place called sparks in Huntington beach.

Ive done the whole thing about requesting gluten free on airline (flying united) however reading the posts on here im not exactly convinced that it will go smooth sailing.

Thanks in advance.

try pm-ing "picture perfect". She's from that area. Do you have a set of the Triumph dining cards? They are well worth the money and have saved me from getting glutened on one occasion.

Congratulations! It is so nice when something turns out well! Could you post your Chocolate Chip Cookie recipe? I tried some awhile back, and they didn't turn out all that great (and the $7 a bag mix doesn't work well with my budget!)

Thanks!

Lisa

I know exactly how you feel!! I finally decided to do pie crust. The first try wasn't too great, but did manage to do up a passable one. (by my standards. I'm a perfectionist when it comes to pie crusts). But the family couldn't tell the difference. Apple pie and pumpkin pie after 9 years!! I was in heaven! (and put on some weight, but I'm dealing with that now) There is no reason to fee deprived on the gluten-free diet. There are so many things that can be eaten, and so many substitutes if one gets creative!

Annette

and he is going gluten free from now on, and doesnt even want a offical diagnosis! i guess at the end of the day we all know whats going on in our own bodies more than any doctor or test. but my second question is what's the chance of 2 people getting married that both have the same disease?!?!? lol

thanks

alexis

One - he has dx'd himself through the diet challenge. That was good enough for my dr. 9 yrs ago and I'm not arguing nor have any desire to get a more "official" dx. I know I can't have gluten, period. No other drs since have argued with me on that.

Two - and like nini said, the current estimate is 1 out of 133 probably have celiac, while only 1 in about 4,000 are properly dx'd with it. It just means that you two are more aware of celiac than the average population. Those with northern european ancestry seem to be more likely to carry the gene, so what are your respective backgrounds?

Anyhow, here's to his improved health!

Annette