
nailehead
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I was diagnosed last year around October after being misdiagnosed for at least 5 years with IBS.
Some of my symptoms have subsided but alot are still present. I think i was probobly stage 3 or 4 upon reading other posts. I still have daily and weekly pains and symptoms and have felt that i have been really careful not to get glutenized!
I lost 50 lbs and CANNOT seem to put the weight back on!
I was 220lbs and thick and pretty fit.
Now i fluctuate between 176-180.....
I am 6'3" and look skinnier than i did when i was in my prime in high school!
Are there any "safe" weight gain powders or supplements?
OR are steroids the answer?
( i wasnt aware steroids where prescribed until reading some other posts..)
Any advice would be very appreciated!
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Anybody from San Diego on here?
Looking for a "specialist" in Celiac, not just some HMO all-around family doc?
Or know of a web listing or site that i could find one here?
thanks! i'm dyin over here!
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wow, thanks for the tip deb!
i cant beleive it takes just that little.
so is it the fact that once you become diagnosed and you start the gluten-free diet, it must be a huge assimilation for your body to go through and get rid of, so once that happens, we become "hypersensitive" to ANY gluten at all????
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thanks guys!
just being "misdiagnosed" for so many years always makes me wonder how correct these damn doctors are all the time.
Especially with an Insurance HMO "Genral Physician", i cant help being a little worried or suspect.
I feel she is a good Doc. and has actually been the only one to finally REALLY take the time and "listen" to me and all my severe symtoms, instead of 4 other Doctors all saying "Sorry, you've got a bad case of IBS, live with it!"
I actually had an Endoscopy and Colonoscopy about 6 months ago, but they were looking for the wrong thing (Chrohns Disease, IBD, etc.) and not Celiac.
came back inconclusive....
I am about 95% sure i have celiac disease, but am wondering after having it for years and not knowing it that i may some some other underlying "problems" also.
but , YES, i have been on a "mostly" gluten free diet...i have slipped a couple of times...but also "paid" for it...
oh well..."day by day!"
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or should i still get a scope to make sure?
i have only really seen my Doctor 2 times since being diagnosed abou 3 months ago, and i am wondering if i should have any more extensive tests or a scope?
I mean my Doc was pretty positive after finally doing the right blood test, AND i pretty much have all the symptoms in the book, but HOW sure is the blood test?
any thoughts or info on this would be great!
thanks
nailehead
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Hmmmm, this question from captain is exactly one of the "things" i have been wondering about, and on my "list" of things to ask.
Because i too have been feeling very sensitive, and have really been trying to watch what i eat, but was wondering if even the littlest amount of gluten NOW, gives me the same symptoms ( if not worse ) than when i was eating EVERYTHING!
like last night, i was starving at work, working overtime, and my company bought pizza, so i figured i would do a little experiment and have 1 piece, but just eating the supreme, but safe(?) ingredients on top......by the time i got home i had bad stomach pains, acid reflux, diarrhea, nausea, and eventually i threw up...but felt much better after i did..
was this all in my head "worrying" i was gonna get sick? or did even that little amount of cross-contamination from the crust make me sick?
hmmmmm
this sucks
i sure do miss my pizza, burgers, fajitas.........
hard to stay on track!
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Hang in there McDougall!
I am new to this too! I was diagnosed only about 2 1/2 months ago, and already feel ALOT better. I have had a few "slip-ups" or just plain didnt know that a food item was gluten-free, and WHAM...SICK again.
Everyone here can relate to your problems, symptoms, and "story"...it seems to be going around.
I had a pretty traumatic car accident about 7 years ago that i think triggered my celiac disease. But not certain. But when i couldnt figure out why i started feeling bad ( all the symptoms) the doctors told me it was severe IBS and said sorry, "Deal with it"!
But after 5 years of being misdiagnosed, losing 50 lbs, all my energy, and mentally loosing my will to care or live, and ready to give up...my new Doc finally got smart, and did a simple blood test!...POSITIVE for Celiac Disease.
I was grateful at first to "finally know" why i had been feeling the way I do/did and WHAT i finally had, but was also SOOOO mad that they jackass HMO Doctors blew me off for so long while i was in constant pain and turmoil with my body.
I too USED to surf all the time, surf competitively well, snowboard, mountain bike, and was just generally fit and active. So i know how mentally scarring it can be to feel so weak and fatigued and helpless, and not know why!
Hang in there, and DO IT!
I am still new to this, but am already feeling alot better, getting my energy back,starting to feel better mentally, and started surfing again, and exercising and weight lifting.
...And yes..."Thank God for the Rum"!
This site has already helped me alot and given me alot of support and knowledge that i needed, so "look over" this whole site!
And I want to thank everybody for thier comments, help and support here!
Thank YOU! you might have saved my life!
Nailehead
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I saw alot of posts from the "What fast foods can we eat" thread or something, and alot of people mentioned "No Pickles"!!!
So is it the pickles? or vinegar?
just fast food? or are jarred "dills" OK?
...another onne of my hundred questions...sorry!
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thanks!
yeah, the "vitamin thing" came from a list of Forbidden Food and Ingredients from this site! but there is a *sidenote* that said this.."4) Can utilize a gluten-containing grain or by-product in the manufacturing process, or as an ingredient. "..so its a little vague!
Thanks, i'm glad One-a-Day is safe, cause i've been popping them, you know? ..One...a....
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Hi!
I'm still pretty new to this, so it seems daily i am finding more and more things that are supposedly not safe or gluten-free!
I was reading the "Forbidden foods/ingredients" list and was surprised to find that VITAMINS were on it ( i know it had a "4" next to it ) , but FORBIDDEN?
or just certain types?
i lost 50 pounds and was pretty weak and malnourished, and am STILL not feeling like i am getting much better, but then again i keep finding foods/ingredients that i thought were safe but maybe are not.
my health has been very up and down and am still getting sick alot.
i am really trying to stay gluten-free, but all these damn HIDDEN ingredients are killing me...literally huh?
I have been taking "One-a-Days" daily to try and get more vitamins and nutrients in me, but is this just hurting me more?
Any advice would help, or if you Celiacs know of any specicif "safe" Multivitamins I should be taking, please share!
Thanks
Frustrated!
nailehead
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Thanks....DAMNIT!
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I USED to eat alot of Taco Bell and Mexican food before i was diagnosed, and now i am wondering what i CAN still eat.
Is it safe to eat the items that have/use Corn Tortillas, or is there alot of "cross contamination" going on?
Wondering? Cause i'm jonzin for a six-pack of Crunchy Beef Tacos!
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Ohhhhh Thats AWESOME!
I worked at a Carrabba's in Sarasota FL, BEFORE I was Celiac!
And I LOVED the food, ( even working there)
so that is great news to hear they have a gluten-free menu also!
Now they just need to put a Carrabba's here in San Diego....arrrghh, I'M JONZING!
thanks for the tip!!!!!!!
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Thankyou to everyone for welcoming me and replying.
It is amazing to me and makes me so mad that Doctors can be soo incompetant.
Especially when it is a simple blood test. I just dont understand.
Oh well, at least I know i am not alone!
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I was recently diagnosed with Celiac Disease (which i had never even heard of) and had been misdiagnosed for 5 years with having IBS, and being told i had to "live" with it, while my symptoms kept getting worse and worse. I had almost daily painful diarhea, undescribable stomach pains, bloating, lack of appetite, fatigue, muscle cramps, bone pains, nausea, vomitting, you name it AND i lost 50 lbs in a year and a half not even trying to. I felt i was dying and just withering away. I felt generally unhealthy daily, and this really has taken a toll on my mental health and self esteem, forever, constantly stressing on "how i was feeling" and not knowing WHY.
Now after 5 different doctors, i finally found one that had the sence to do a blood test after listening to the severity of my symptoms that maybe it wasnt IBS afterall. BINGO! Celiac Disease. Now I am both relieved to finally "know" WHAT i have, but i am also very angry that i was misdiagnosed for so long. An easy blood test could have saved me years of bad health, unhappiness, and "unknowing"!
I had always eatin anything and everything i wanted all my life with no noticable ill affects or symptoms. I had read that traumatic events like surgery, severe mental anguish, or a specific event can trigger Celiac Disease. Thinking back, my symptoms started to occur shortly after being involved in a trumatising car wreck.
It is going to be really hard to completely change my eating habits and become gluten-free, but if it helps alleviate my sysmptoms and i start seeing results and become healthy and happy again, it will be totally worth it.
But right now I am having a really hard time dealing with it!
Anyone have any similar stories of being diagnosed with celiac disease after a traumatic life event, surgery, accident, etc?
I'm new to this forum and thought i would share my story!
Thanks
nailehead
Just Cant Put On Weight! Steriods Or Weightgainers
in Related Issues & Disorders
Posted
Thanks Nikki!
I was diagnosed by my "primary care" doctor, which pretty much means an all around family physician, but at least she finally found it ( Celiac ) after 5 years and 5 other docs telling me it was IBS and to "live with it"!
I was referred to a specialist here in San Diego that i will be contacing today..hopefully and set up an appt.
I have been conversing with a nutritionis/celiac specialist over the phone, and she feels that i have a severe case of Celiac and DEF need to go see a specialist!
working on that now!
thanks for your input!
i am in pain and discomfort EVERYDAY even being on the gluten-free diet!
it is really frustrating and affecting my attitude mentally, and still my body physically...very depressing...