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Member Since 01 Jun 2008
Offline Last Active May 11 2013 07:30 PM

#733745 P.f. Chang's

Posted by on 24 September 2011 - 06:28 PM

i got glutened there once.... i still havent talked to the manager yet- but i will... because i want to continue eating there- its SO YUM... ive even gotten take out since the glutening and was fine.. it was a busy sunday- so maybe someone made a mistake, but normally they're very aware and helpful and delish!!! i agree- the Singapore Street Noodles are A-Mazing.. and the lettuce wraps, and the fried rice!!!
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#726926 Descriptions of DH "Types"

Posted by on 31 August 2011 - 08:49 PM

Have any of you seen the descriptions in this book: Essentials of diseases of the skin By Henry Weightman Stelwagon?

Its the ONLY description like this on the appearance of DH I've ever read.


not exactly sure... but i HAVE always heard that it can resemble Herpes (i imagine both Herpes, & Shingles).. that's where the name "Herpetiformis" came from.. the shingles (herpes zoster) pic on wikipedia looks fairly similar to the dh i had on my stomach
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#720131 "glutened"? "contaminated"? What Do You Call It?

Posted by on 01 August 2011 - 08:59 PM

u know- i actually use "glutened" when i talk about what might happen to me... but i DO use the word "contaminated" when i talk about the food itself... like when my mom accidentally put the leftover rice pasta in the same container with the spelt pasta- then i say- "ya, i cant eat it, cause the food could be contaminated"
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#716044 How Many Have Dh, Really?

Posted by on 12 July 2011 - 09:20 PM

I think the 1% number is closer to reality.

Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology referral from her, because she sees so little of it that she has no experience in its diagnosis and treatment.

and like i said in the rest of my comment- many probably go undiagnosed because they dont know what it is.. and that even many dermatologists dont know what it is.
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#715210 Positive Blood Tests - Why Is My Gp Sending Me To A Rheumatologist First?

Posted by on 08 July 2011 - 05:01 PM

I don't think they automatically do DNA testing in Italy. I read and heard from Italians that they test kids under the age of 5 IF there is Celiac in the family or they have symptoms. Their medicine is no better than ours. It's also socialized medicine so testing is not done so routinely. I really don't think it matters where you are...doctors only ever look for cancer and if you don't have that, you'll have to figure out your problems on your own because they won't do it for you! Europe may be more savvy regarding Celiac but that doesn't mean the diagnosis rates are much better than in other parts of the world. Plus, there is just too much resistance from people when it comes to changing their diets a bit.

i believe it's Finland where the diagnosis rate for Celiac is around 70%. that's certainly better than our 2 or 3 %. it's all about money really- and Big Pharma doesnt make money off us- that's why it's not a priority here. there's pros and cons to all the different "1st world" countries no doubt. and while im very proud of how America makes it possible for us to be cutting edge sometimes... our health care system is really designed to keep us sick.
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#714172 Desperate For Help

Posted by on 04 July 2011 - 10:34 AM

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers. I had to use an enema i order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

WOWWWW this is quite a testimony- and could really be so helpful to others who just listen to their doctor say "negative" and then never go gluten free.

1st off- your doctor is wrong to say there are only 2 tests. and how does he decide what is the best test????? so many of us have only had 1 positive out of 3... or very suspicious "weak positives"... some docs think the TTG is the best... others now are saying the Deamidated Antigliadin is the best.. and in other places i have read the Endomysial Antibody is 100% specific to Celiac. this disease is so damn tricky and so misunderstood that you really need ALL 3 of these Tests.. PLUS a Total Iga Serum test. it's just too presumptious to just do one test- these doctors are putting money ahead of our health!!!

your body KNOWS!!! and im so sorry you had to go thru all that pain- but so happy you're deciding your own health now- i hope you continue to recover!!!
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#712510 Very Angry

Posted by on 27 June 2011 - 08:49 PM

I was hoping you would post and clarify that as I think i have seen you mention it elsewhere. It seems like this particular blogger either mis-read the book on GAPS or read a different one than you did. She seemed really confused and seemed to be using the terms "gluten allergy" and celiac interchangablely. I do hope she looks into it more instead of continuing to spread mis-information.

yes, i assumed she misunderstood the GAPS book, just as she misunderstood every comment we posted
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#712150 Very Angry

Posted by on 26 June 2011 - 07:36 PM

OMG, is she for real???? she is from another planet- like i am speechless... and her replies to me really PISSED ME OFF- she is insane!! and it looks like u cant reply anymore, or at least i couldnt.

i stated a simple truth that it's part genetics and part environmental triggers- and she said- i sounded as ridiculous as all the people trying to explain autism's rise. wtf? it's just basic common sense-

and Stage 4 cancer is an autoimmune disease??? omggggggggggggggggg this woman

whoever posted earlier is right- this is someone that you cant communicate with at all- she's hearing something else- she probably misread that book she refers to, too. Lordy
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#710733 Has Anyone Achieved Remission Of A Secondary Ai Disease By Treating celiac di...

Posted by on 21 June 2011 - 10:42 AM

im sorry you're suffering so much. im also posting here, cause i'd like to be notified everytime someone replies to you. i have a friend with RA, she's 22, and im trying to find info on gluten free diets for her.

i also have Hashimoto's & Grave's, and can totally relate to feeling like its "ruining my life". i TOO am hoping that being gluten free will also alleviate my thyroid antibodies.

i also believe it's true that additional food intolerances can also aggravate our AI diseases.

my other friend has Anklosing Spondylitis-> and his doctor told him to avoid gluten and dairy. he's noticed that he feels better when he avoids them. when he cheats with the gluten, he gets a pressure behind his eyes-

i really hope you get a lot of responses on here... i forgot- i ALSO have 2 very good friends with MS, so i hope there are some testimonies below soon

hope u feel better :)
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#709133 How Many Have Dh, Really?

Posted by on 15 June 2011 - 06:48 PM

yes- i too heard that around 20% of Celiacs get DH.

i think getting a correct statistic on how many have Celiac, and how many have DH is so difficult- cause most people go undiagnosed- and then think about DH- most people have never heard of it, and many Dermatologists dont even know what it is- so it could be higher ?????
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#703168 Question About "a Hidden Epidemic"

Posted by on 27 May 2011 - 08:23 PM

sometimes your body & instinct is smarter than any doctor... i respect a lot of studies that come out of his center at columbia- but i glanced over his book at whole foods- and he mentions that if you do NOT have a DQ2 or a DQ8 that it is IMPOSSIBLE to have Celiac... and well, we know that isnt true. it doesnt mean i dont respect other things he has said or studied- but i ALWAYS use my filter- with everything i read
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#701779 #*@($ !#*^% Doctor!

Posted by on 23 May 2011 - 06:15 PM

oh im beyond pissed for u- why dont they just write down in our charts that we have JUSTIFIED EXTREME RAGE against the medical system for failing :angry:

dont even get me started on all my issues with them
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#700988 Celiac Vaccine Anyone?

Posted by on 20 May 2011 - 07:11 AM

let me first say- that i so agree with everything everyone's posted- great great points- and i find that the members on here seem more in tune than on other health forums (particularly some thyroid forums im in).

but- i DO think Celiac will continue to be "on the rise". of course it's been here forever- it's been in a population of the genes since the beginning of time. and i also agree- that it does not mean our genes our inferior- just that we were not designed to partake in this poison. but i definitely believe it will rise from the 1 in 133, because of the condition of our food & environment.. the triggers our multiplying. that's my view, and my Gi actually theorized the same- saying he wouldnt be surprised if sometime in the future- more of the genetically prone/sensitive 30% start expressing the disease.
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#700756 Celiac Vaccine Anyone?

Posted by on 19 May 2011 - 08:07 AM

It seems odd that they would create a vaccine when its so easy to not use wheat and gluten, considering the diagnosis is on the rise every year, (its more than 1/100 people now!) why would they invent a drug to stop your body telling you that it really doesn't like what your giving it. I always say go with your instincts if your body is telling you something is wrong listen to it. I wouldn't take the vaccine.

its because of the potential profit
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#700669 Celiac Vaccine Anyone?

Posted by on 18 May 2011 - 09:49 PM

No. I don't even have the DQ8 gene. I'm one of the 0.4% of Coeliacs who don't have either gene.

They'll probably come up with A DQ8 variant if the DQ2 vaccine is successful... but I suspect they won't bother for the very small minority that's leftover.... and that kind of sucks.

i would imagine with the way the Big Pharma works- they'll just adapt it into the childhood vaccine schedule across the board- regardless of your genes.

ya, with 3 Autoimmune diseases- i'll forgo the vaccine.. really dont want another jolt to my immune system
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