Re: Hi, my name is...

[Guest guest]

HI,

My name is Connie. I’m over

50, have 3 kids, only one still at home, and a partner of 13 years. I’m

a pretty good cook, having cooked from scratch for years. I live in Oakland. I was sort

of diagnosed about 2 years ago, partly self diagnosed and then had a

gastroenterologist agree with me, but then I decided not to do the testing so

as not to tip off the insurance company. I try to eat a more “palean”

diet – i.e. not much manufactured, processed foods, rather foods that I

know where they come from.

I’m happy to help with cooking

questions. And I’d love to know what restaurants you find that we

can safely eat at.

Connie

From: [mailto: ] On Behalf Of piglet95037

Sent: Wednesday, October 04, 2006

6:59 PM

Subject: [ ] Hi, my

name is...

Hi all. We've had a sudden influx of new members, so

maybe we can each

take a chance to (re)introduce ourselves...

I'll go first.

Hi, I'm Carla. I'll be 27 on Saturday. I grew up in the south bay, but

recently relocated to Chico

for a was short-term (now year long)

assignment.

I was diagnosed earlier this year. I'm also allergic to bananas, raw

carrots, aspirin and penicillin.

I'm not the best cook, and really unsure of myself and my ability to

change recipes to be gf, but I'm trying. Oh, and my rommie is a great

cook, so that's a major plus.

So, please, introduce yourself. It's always nice to know who else is

reading.

Carla

bored in Chico, CA (and missing the Bay)

[Guest guest]

My name is Lori. I'll be 25 next month. I'm a newlywed (married in June) to a wonderful man who is VERY supportive with this whole new way of life. We live in San Francisco....but moving to New Hampshire in two weeks.

I was diagnosed 3 years ago and was lucky enough to join this group and make friends with Sue....who has been a god send in terms of helping me cope and learn. I go to Dr. Aron - who's a local celebrity in terms of Celiac disease. I was diagnosed through

I've always been a bit of a health nut so I eat alot of meats, fish, fruits, veggies and dairy. I was never big on breads and sweets so luckily it was pretty easy to go GF (except for the eating out part) When I am craving sweets though...I cannot resist Wholefoods Chocolate Chip cookies! Or I make some of my killer Orange Chocolate Chip biscotti :0)

-----Original Message-----

From: connie@...

Sent: Thu, 5 Oct 2006 9:12 AM

Subject: RE: [ ] Hi, my name is...

HI,

My name is Connie. I’m over 50, have 3 kids, only one still at home, and a partner of 13 years. I’m a pretty good cook, having cooked from scratch for years. I live in Oakland. I was sort of diagnosed about 2 years ago, partly self diagnosed and then had a gastroenterologist agree with me, but then I decided not to do the testing so as not to tip off the insurance company. I try to eat a more “palean†diet – i.e. not much manufactured, processed foods, rather foods that I know where they come from.

I’m happy to help with cooking questions. And I’d love to know what restaurants you find that we can safely eat at.

Connie

From: [mailto: ] On Behalf Of piglet95037

Sent: Wednesday, October 04, 2006 6:59 PM

Subject: [ ] Hi, my name is...

Hi all. We've had a sudden influx of new members, so maybe we can each

take a chance to (re)introduce ourselves...

I'll go first.

Hi, I'm Carla. I'll be 27 on Saturday. I grew up in the south bay, but

recently relocated to Chico for a was short-term (now year long)

assignment.

I was diagnosed earlier this year. I'm also allergic to bananas, raw

carrots, aspirin and penicillin.

I'm not the best cook, and really unsure of myself and my ability to

change recipes to be gf, but I'm trying. Oh, and my rommie is a great

cook, so that's a major plus.

So, please, introduce yourself. It's always nice to know who else is

reading.

Carla

bored in Chico, CA (and missing the Bay)

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

Debbie. My 16-year-old daughter, Molly, was diagnosed in 1992, at the age of 20 months. She almost died of malnutrition under the eyes of about 100 doctors over the final three months of her decline. A friend of my husband's in L.A. suggested we ask about gluten intolerance. I did so (of physician #100) that afternoon. For the first time, a doctor stepped back and looked at my emaciated baby with the bloated tummy instead of at her chart. "She DOES look like a sprue kid," he said. She had a biopsy four days later and the diagnosis the following day. She also spent two more weeks in the hospital -- she was that sick.I'm a writer, and I've told this story as a My Turn column in Newsweek ("What's Wrong With Our Baby?" 4/2/92), the first issue of Living Without, and in a couple of Bette Hagman books. The advantage of being the first to write about celiac disease to a national audience was that I received more than 150 letters from around the globe, offering advice and support. It was pre-www and before there were ANY decent prepared foods. I became a GF baker, developing a GF bread that Molly's had for breakfast nearly every day for at least 10 years!I've tried to raise Molly to take control of her diet and her celiac disease. She doesn't feel sorry for herself. She was the only kid at Rohlf's support group meetings at Stanford, until Chaitan Khosla's son was diagnosed (by Molly's pediatrician, who finally knew what it looked like). She knew she didn't want to grow up to be a whiny celiac adult. She's active over at celiac.com, led the teen part of the Stanford celiac conference the last two years, and is talking with Danna Korn about launching a new support/advocacy/networking group for celiac teens, TAG (Teens Against Gluten). Eating out is still a challenge, and she is now avoiding corn and soy as well as gluten. Molly's GI doc (who wasn't in on her un-diagnosis) refers newly diagnosed celiac families to me for advice and a tour of my kitchen. I help lead the local R.O.C.K group, though we're more of a presence (bayareaceliacrock) than a physical one. On Oct 5, 2006, at 10:52 AM, LSBlondie@... wrote:My name is Lori. I'll be 25 next month. I'm a newlywed (married in June) to a wonderful man who is VERY supportive with this whole new way of life. We live in San Francisco....but moving to New Hampshire in two weeks. I was diagnosed 3 years ago and was lucky enough to join this group and make friends with Sue....who has been a god send in terms of helping me cope and learn. I go to Dr. Aron - who's a local celebrity in terms of Celiac disease. I was diagnosed through  I've always been a bit of a health nut so I eat alot of meats, fish, fruits, veggies and dairy. I was never big on breads and sweets so luckily it was pretty easy to go GF (except for the eating out part) When I am craving sweets though...I cannot resist Wholefoods Chocolate Chip cookies! Or I make some of my killer Orange Chocolate Chip biscotti :0)  -----Original Message-----From: conniehampton-researchTo: Sent: Thu, 5 Oct 2006 9:12 AMSubject: RE: [ ] Hi, my name is...HI,My name is Connie.  I’m over 50, have 3 kids, only one still at home, and a partner of 13 years.  I’m a pretty good cook, having cooked from scratch for years.  I live in Oakland.  I was sort of diagnosed about 2 years ago, partly self diagnosed and then had a gastroenterologist agree with me, but then I decided not to do the testing so as not to tip off the insurance company.   I try to eat a more “palean” diet – i.e. not much manufactured, processed foods, rather foods that I know where they come from. I’m happy to help with cooking questions.  And I’d love to know what restaurants you find that we can safely eat at. Connie From: [mailto: ]On Behalf Of piglet95037Sent: Wednesday, October 04, 2006 6:59 PM Subject: [ ] Hi, my name is... Hi all. We've had a sudden influx of new members, so maybe we can eachtake a chance to (re)introduce ourselves...I'll go first.Hi, I'm Carla. I'll be 27 on Saturday. I grew up in the south bay, butrecently relocated to Chico for a was short-term (now year long)assignment.I was diagnosed earlier this year. I'm also allergic to bananas, rawcarrots, aspirin and penicillin.I'm not the best cook, and really unsure of myself and my ability tochange recipes to be gf, but I'm trying. Oh, and my rommie is a greatcook, so that's a major plus.So, please, introduce yourself. It's always nice to know who else isreading.Carlabored in Chico, CA (and missing the Bay)Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

I can't see anything!!!

Carla

[Guest guest]

I'm Sharon, mid-50s. I live in San Francisco, and was diagnosed last fall when my increasing tiredness turned out to be anemia. I'd eaten various wheat products all my life, but suddenly could no longer digest them. If stress brings celiac on for us 'late bloomers', it's probably no coincidence that this happened during my son's last year of high school. I travel a lot for work and that's a big problem, though my current project will be ending next spring, so my traveling days will diminish then. I wish I could find little packets of wheat free soy sauce to take when I do travel. The one website someone mentioned awhile ago didn't really have them. This list is very helpful, and so was the Stanford conference. When I was first diagnosed, the gastroenterologist at Kaiser just said look up celiac.com. Necessary but not sufficient in terms

of reconciling and reorganizing your life. My biggest challenge is to constantly have to speak up and ask places where I'm eating about the food. I guess it could be considered enforced assertiveness training. piglet95037 <csilverstein@...> wrote: Hi all. We've had a sudden influx of new members, so maybe we can eachtake a chance to (re)introduce ourselves...I'll go first.Hi, I'm Carla. I'll be 27 on Saturday. I

grew up in the south bay, butrecently relocated to Chico for a was short-term (now year long)assignment.I was diagnosed earlier this year. I'm also allergic to bananas, rawcarrots, aspirin and penicillin.I'm not the best cook, and really unsure of myself and my ability tochange recipes to be gf, but I'm trying. Oh, and my rommie is a greatcook, so that's a major plus.So, please, introduce yourself. It's always nice to know who else isreading.Carlabored in Chico, CA (and missing the Bay)

[Guest guest]

I'm Amy, late 30's and live in Sunnyvale. I was diagnosed two years ago while I was training for a marathon. I was severely anemic and losing weight rapidly. I didn't have severe GI symptoms, which is why it took me so long to figure out that I had celiac disease. My dad was diagnosed about 8 years ago and he was VERY sick at the time. Since I just always had a "touchy" stomach, we didn't figure out that I had it too! In any case, I DO have it, and also my brother (diagnosed after me). Since I was familiar with it from my dad, the gluten free diet wasn't a HUGE shock, although it was hard in the beginning. It certainly is a huge lifestlye change for myself and my family. I have two young children and in the beginning I tried to juggle gluten and non-gluten food. It was just too hard to keep things separate and I also felt I was getting quite a bit of contamination, so I have made our house gluten free. It has ma

de life so much easier for me. The kids don't really know anything else, so it's no big deal to them!

For those new to the celiac world, we do have a special celiac clinic here at Stanford Hospital. It is staffed by Gail Pyle, who has celiac disease herself. I highly recommend it, especially if your insurance covers it.

Do my kids have it, you may be wondering? Well, they are both adopted, so we don't think so. Now I'm sure that celiac was the reason we did not have biological children.....it would have been nice to know 10 years ago! We always wanted to adopt anyway, so it wasn't a huge deal for us.

I would LOVE to help organize a more active support group here in the South Bay, especially for those that are newly diagnosed. When I saw the GI physician to get diagnosed, I asked him about support groups and he had no idea. Had I not known about celiac before being diagnosed, I would have been completely lost. I would love to get together with other celiacs, maybe once every two months or so. Is anyone else interested? I know had organized something earlier this year. Maybe we could build on that. With two young kids, I don't have a lot of time to get anything real organized, but I would be happy to start us off. I was thinking of meeting at PF Changs.....I could talk to them in advance about preparing GF food for a large group. Anyone interested?

Amy

-------------- Original message -------------- From: Sharon Wood <swoodsf@...>

I'm Sharon, mid-50s. I live in San Francisco, and was diagnosed last fall when my increasing tiredness turned out to be anemia. I'd eaten various wheat products all my life, but suddenly could no longer digest them. If stress brings celiac on for us 'late bloomers', it's probably no coincidence that this happened during my son's last year of high school.

I travel a lot for work and that's a big problem, though my current project will be ending next spring, so my traveling days will diminish then. I wish I could find little packets of wheat free soy sauce to take when I do travel. The one website someone mentioned awhile ago didn't really have them.

This list is very helpful, and so was the Stanford conference. When I was first diagnosed, the gastroenterologist at Kaiser just said look up celiac.com. Necessary but not sufficient in terms of reconciling and reorganizing your life. My biggest challenge is to constantly have to speak up and ask places where I'm eating about the food. I guess it could be considered enforced assertiveness training.

piglet95037 <csilversteinsbcglobal (DOT) net> wrote:

Hi all. We've had a sudden influx of new members, so maybe we can eachtake a chance to (re)introduce ourselves...I'll go first.Hi, I'm Carla. I'll be 27 on Saturday. I grew up in the south bay, butrecently relocated to Chico for a was short-term (now year long)assignment.I was diagnosed earlier this year. I'm also allergic to bananas, rawcarrots, aspirin and penicillin.I'm not the best cook, and really unsure of myself and my ability tochange recipes to be gf, but I'm trying. Oh, and my rommie is a greatcook, so that's a major plus.So, please, introduce yourself. It's always nice to know who else isreading.Carlabored in Chico, CA (and missing the Bay)

[Guest guest]

Hi, my name is , and I was diagnosed with Celiac at the age of

three after my family moved somewhere with bad well water. We all got

sick, but I didn't get better like my family did after treatment,

because my celiac had " turned on. " It took some time for doctors to

diagnose me, and I was extremely sick until they figured it out and

did a biopsy to confirm diagnosis.

Food has come a long way since then- I remember when all there was to

eat was disgusting Ener-g foods bake mixes and prepared bread and

cookies. Yuck! I just turned 30 this summer, so I've lived with the

gluten free diet for 27 years. Maybe because of it, I've become quite

a " foodie " and am always cooking some elaborate GF meal in the

kitchen. My husband is very understanding (and loves my cooking), and

we have a gluten free household even though he can eat gluten. (He

does have cereal and occasionally bread, off in an unloved corner of

the dining room).

I do a lot of international cooking- Thai, Indian, Mexican, Japanese

(we lived in Japan for two years), Chinese, Italian, Mediterranean...

and a fair amount of baking. I like Bette Hagman's bread recipes quite

a bit. For prepared foods, I like most of Amy's frozen products,

Kinnikinnick donuts and bagels, and Whole Foods GF Bakehouse stuff

(but it's too expensive in our area!). I was also a strict vegetarian

for 9 years, and still have many vegetarian preferences. I tried being

vegan for 2 years as well.

I think it would be fun to meet up in the Bay area! I live in Mountain

View, myself. BTW, if anyone goes to Vancouver, there is a gluten free

bakery there to die for- and several GF bakeries in Seattle as well.

Puts the bay area to shame!

--- In , " piglet95037 " <csilverstein@...>

wrote:

>

> Hi all. We've had a sudden influx of new members, so maybe we can each

> take a chance to (re)introduce ourselves...

[Guest guest]

sorry, forgot to present myself.

I'm sophie 31, mom of , 2.

was litteraly bleeding to death at 6weeks old and the only help I found

was a LLL

friend who told me about food allergies and breastfeeding.

Went on total elimination diet that hour, and I " fixed " my baby just in time to

avoid NICU

48h later.

.....> we have been fine (almost) on GF diet since.

When I weaned him, I happily ate my missed croissants and baguettes, and got so

sick I

wanted to jump from a bridge. went back on GF after 5 or 6 days.

It's only now that I see all the symptoms I had since.. a long time.

I recently learned my great uncle was diagnosed celiac in 1922 .. and I've been

bugging my

parents to get tested. My dad has extremly STRONG symptoms, somhow misdiagnosed

under whatever colon abnormalities and likes. And because of his work, he's on

very low

gluten every summer, and my mum finaly told me last month that he's nearly

healed each

summer, so she'll look into going low gluten year round.

unfortunatly, when it was time to test for me, it was too late for biopsy. It's

somewhere in

the future few years, when I can plan and afford to be sick (if it happens).

is also very very allergic to wheat .. so trial and biospy is delayed

too.

In the mean time, we religiously changed our diet, and elimimanted all the @#$@

we ate.

Gone MSG, processed sugar, most processed food.. Welcome more greens, and

organic

food. and our general health has been better ever since. I lost some weight,

hubby's

cholesterol and blood pressure are better without medication etc.

As several said.. official diagnose is VERY IMPORTANT .. and somehow I'm glad we

got a

official " dangerous " wheat allergy.. because I was tired of explaining people

that any

crumb of bread would make my son have weeks of diarrhea. (unfortunatly,

anaphylactic

allergies are more " popular " and more " graffic " than intolerence - and

unfortunatly too,

unless you have a signed document by a dr, people dont listen)

that said, only time will tell what we truly have. Celiac? or not? some weirdo

wheat allergy

or intolerence?...

thanks again for this group. I learned a LOT .. its a true support group.

Sophie and , san francisco

[Guest guest]

Since so much of my story mirrors Isaiah,

I will add my two cents below here post in the appropriate spots.

FYI, I am a 29 year old mother and wife,

living in San Francisco.

I made the mistake of going GF *before* I went to the GI doc or got any

tests done. I had great results from the GF diet (the urgent D after every meal

stopped, the bloating and gas and heartburn decreased, the migratory

parasthesias and other neurological stuff improved, etc). The doc said

" the proof is in the pudding " but that I should still get tested.

Well, by the time he ordered the blood test I'd been completely GF for 2 months

(wheat-free for longer). He also seems very misinformed about CD, in that he

told me I did NOT need to be eating gluten in order to take the blood test... I

now know this is wrong.

I have been GF since March of this

year. (I was gluten *lite*

for nine months prior, not realizing that spelt & kamut has gluten as

well). I am not normally big on doctors or their diagnoses, usually IMO,

they are full of s* & t, and don’t take the time to figure out what’s

going on, or even to listen to you. All of that said, I really *needed* a diagnosis on this one – our

food bill more than doubled when I found out about the celiac. --- side

note: My husband and I went on a fast for three weeks just before our

wedding. It was after the fast that I realized I had a problem with

wheat. --- I am a Realtor, which means (for tax purposes) that I am

an Independent Contractor, and we have our taxes structured in such a way that

we can write off medical expenses. So I wanted a DX so we could write off

the excess food costs. My blood test, DH test, and biopsy all came back

negative because of my GF diet. (I have Kaiser, and by the time I

actually got a biopsy for my DH, I had been on a GF diet so long the rash had

gone away).

The problem is, now that I have these results from Enterolab there's part of me

that wants a straight, medically accepted definitive answer about whether I

have CD. So... I tried to go on a gluten challenge. BIG MISTAKE. I got so sick

I couldn't even make it 24 hours on the gluten challenge! And this was with only

1-2 servings of gluten a day (less than the recommended 3 for a gluten

challenge).

My GI suggested I go back on gluten for

the biopsy, but it makes me SO sick that I couldn’t do it. My

biopsy came back negative. DUH!

I think it really sucks that we have to

suffer through a month of debilitating illness just to get a DX for a condition

we already know we have. I mean, can’t they just sit & watch us

while we have a piece of wheat bread & then have runny stuff come out our

butt and we can’t function for the next three days?

So I'm not sure what to do at this point. It's clear that a gluten challenge is

just not worth the sickness and discomfort and pain. But if I don't do the

challenge, I won't get accurate blood test or biopsy results. Which means I may

go the rest of my life not being taken seriously by the medical establishment

as having CD or even a gluten intolerance. The only " proof " I have is

the symptoms I had (which are consistent with CD) and the unambiguously

positive response to the GF diet. I think I can accept that as enough

information for now, but I still fear being dismissed by doctors and sometimes

wonder if I should deal with being sick for 3 months for the challenge in order

to get accurate an accurate blood test & biopsy.

AMEN! If I didn’t

have a kid, and clients relying on me to close their homes (not to mention a

profession that is 100% commission), I might take a few months off to get horrendously

sick just to get the DX.

More later if I have the energy.

Lil

..

[Guest guest]

Personally I think its absolutely absurd to torture yourself for three months just so some doctor can tell you what you already know: gluten makes you sick. I did the same thing you did, although I didn't have such horrible symptoms, I still had some bad ones and get sicker now when I eat gluten than I did when I ate gluten normally. You couldn't pay me enough to go back on gluten for any reason. If a doc doesn't believe me after I'm through with him, then he's probably a sucky doctor anyway and I'd just get me a new one.

Good luck!

Hi. My name is Isaiah. And since people usually assume I'm male because ofmy name, I should probably mention I'm a woman ;-P (Yeah, another girl witha boys name). I am 25 and I live in North Oakland. I'm originally from NewYork but moved out here 6 years ago.I made the mistake of going GF *before* I went to the GI doc or got anytests done. I had great results from the GF diet (the urgent D after everymeal stopped, the bloating and gas and heartburn decreased, the migratoryparasthesias and other neurological stuff improved, etc). The doc said "theproof is in the pudding" but that I should still get tested. Well, by thetime he ordered the blood test I'd been completely GF for 2 months(wheat-free for longer). He also seems very misinformed about CD, in that hetold me I did NOT need to be eating gluten in order to take the bloodtest... I now know this is wrong.So, instead of getting the blood test I got tested by Enterolab (acontroversial method, I'm aware) which showed that I have glutenintolerance, casein and soy intolerance, and that I have one Celiac gene,one Gluten Intolerance gene. I thought that would be a good start and wouldbe more accurate since I'd been GF for a while.The problem is, now that I have these results from Enterolab there's part ofme that wants a straight, medically accepted definitive answer about whetherI have CD. So... I tried to go on a gluten challenge. BIG MISTAKE. I got sosick I couldn't even make it 24 hours on the gluten challenge! And this waswith only 1-2 servings of gluten a day (less than the recommended 3 for agluten challenge).So I'm not sure what to do at this point. It's clear that a gluten challengeis just not worth the sickness and discomfort and pain. But if I don't dothe challenge, I won't get accurate blood test or biopsy results. Whichmeans I may go the rest of my life not being taken seriously by the medicalestablishment as having CD or even a gluten intolerance. The only "proof" Ihave is the symptoms I had (which are consistent with CD) and theunambiguously positive response to the GF diet. I think I can accept that asenough information for now, but I still fear being dismissed by doctors andsometimes wonder if I should deal with being sick for 3 months for thechallenge in order to get accurate an accurate blood test & biopsy.I've been fully GF since 7/06 (after having been wheat-free on and off for afew years prior). I now also know that dairy (casein) and soy are making mesick but I have a hard time accepting this and dealing with the fact that Ineed to eliminate them from my already-strict diet. But I've cut back ondairy and soy a lot and maybe one day I'll have the self-discipline to goall the way. One thing at a time.One positive thing about this change of lifestyle is that it's gotten mereally excited about cookign again, out of necessity. Though I do eat outsometimes (Ajanta and Socca Oven, both in Berkeley, are faves) I do tons ofcooking for myself now and have learned to make a GF version of almosteverything... About to start working on creating GF knishes, which should bequite a project. I'm also way more conscious of what I'm putting in my bodyand how it makes me feel, which I think is a good thing even though it canbe depressing and limiting at times.I really appreciate the support of this list, it's such a great resource.

[Guest guest]

Sophie,

When I have to tell people that I can’t

have wheat/flour/barley/rye, etc. I just say that it makes me “Very sick

and you wouldn’t want that to happen!!” leaving it to the

imagination of the waiter/person/whomever to decide that “very sick”

means that THEY would have to clean it up. This seems to get some very

personal buy in.

Connie

From: [mailto: ] On Behalf Of sophie_and_martin

Sent: Saturday, October 07, 2006

11:41 PM

Subject: [ ] Re: Hi,

my name is...

sorry, forgot to present myself.

I'm sophie 31, mom of , 2.

was litteraly bleeding to death at 6weeks old and the only help I found

was a LLL

friend who told me about food allergies and breastfeeding.

Went on total elimination diet that hour, and I " fixed " my baby just

in time to avoid NICU

48h later.

.....> we have been fine (almost) on GF diet since.

When I weaned him, I happily ate my missed croissants and baguettes, and got so

sick I

wanted to jump from a bridge. went back on GF after 5 or 6 days.

It's only now that I see all the symptoms I had since.. a long time.

I recently learned my great uncle was diagnosed celiac in 1922 .. and I've been

bugging my

parents to get tested. My dad has extremly STRONG symptoms, somhow misdiagnosed

under whatever colon abnormalities and likes. And because of his work, he's on

very low

gluten every summer, and my mum finaly told me last month that he's nearly

healed each

summer, so she'll look into going low gluten year round.

unfortunatly, when it was time to test for me, it was too late for biopsy. It's

somewhere in

the future few years, when I can plan and afford to be sick (if it happens).

is also very very allergic to wheat .. so trial and biospy is delayed

too.

In the mean time, we religiously changed our diet, and elimimanted all the @#$@

we ate.

Gone MSG, processed sugar, most processed food.. Welcome more greens, and

organic

food. and our general health has been better ever since. I lost some weight,

hubby's

cholesterol and blood pressure are better without medication etc.

As several said.. official diagnose is VERY IMPORTANT .. and somehow I'm glad

we got a

official " dangerous " wheat allergy.. because I was tired of

explaining people that any

crumb of bread would make my son have weeks of diarrhea. (unfortunatly,

anaphylactic

allergies are more " popular " and more " graffic " than

intolerence - and unfortunatly too,

unless you have a signed document by a dr, people dont listen)

that said, only time will tell what we truly have. Celiac? or not? some weirdo

wheat allergy

or intolerence?...

thanks again for this group. I learned a LOT

... its a true support group.

Sophie and , san francisco

[Guest guest]

Everyone talking about gluten challenge reminds me of the "old days" 13 years ago, when the celiac diagnosis was not considered complete until the celiac had been GF for a year following the initial biopsy, had a second biopsy to confirm that the villi had grown back, CHALLENGED with gluten for a month, and then had a third biopsy. A year after my baby's diagnosis I had NO PROBLEM accepting it, but when we went in to the hospital for Molly's one-year check-up, I wouldn't let them follow their protocol. I wasn't about to feed poison to my happy, healthy two-year-old just to make them happy. (Many of you know how horrible she'd feel.) Our pediatrician showed me what the pediatric GI (whom we no longer go to, but who still practices at a university hospital in my hometown) wrote in Molly's chart: "Celiac sprue diagnosis cannot be confirmed because of the parents' refusal to rebiopsy and challenge." We got a new doctor. That said, if your insurance covers genetic testing, that is entirely worth doing to rule out celiac disease. Green said he has a cheek-swab place listed in the back of his book. We used Prometheus labs in San Diego. For years we thought my eldest had celiac disease, but she doesn't have the gene. Allergy testing showed she had a wheat allergy. My two younger daughters and I all have the HLA-DQ2 gene, but only Molly has celiac disease.DebbieOn Oct 8, 2006, at 9:33 AM, Cory Katt wrote:Personally I think its absolutely absurd to torture yourself for three months just so some doctor can tell you what you already know: gluten makes you sick.  I did the same thing you did, although I didn't have such horrible symptoms, I still had some bad ones and get sicker now when I eat gluten than I did when I ate gluten normally.  You couldn't pay me enough to go back on gluten for any reason.  If a doc doesn't believe me after I'm through with him, then he's probably a sucky doctor anyway and I'd just get me a new one. Good luck!     Hi. My name is Isaiah. And since people usually assume I'm male because ofmy name, I should probably mention I'm a woman ;-P (Yeah, another girl witha boys name). I am 25 and I live in North Oakland. I'm originally from NewYork but moved out here 6 years ago.I made the mistake of going GF *before* I went to the GI doc or got anytests done. I had great results from the GF diet (the urgent D after everymeal stopped, the bloating and gas and heartburn decreased, the migratoryparasthesias and other neurological stuff improved, etc). The doc said "theproof is in the pudding" but that I should still get tested. Well, by thetime he ordered the blood test I'd been completely GF for 2 months(wheat-free for longer). He also seems very misinformed about CD, in that hetold me I did NOT need to be eating gluten in order to take the bloodtest... I now know this is wrong.So, instead of getting the blood test I got tested by Enterolab (acontroversial method, I'm aware) which showed that I have glutenintolerance, casein and soy intolerance, and that I have one Celiac gene,one Gluten Intolerance gene. I thought that would be a good start and wouldbe more accurate since I'd been GF for a while.The problem is, now that I have these results from Enterolab there's part ofme that wants a straight, medically accepted definitive answer about whetherI have CD. So... I tried to go on a gluten challenge. BIG MISTAKE. I got sosick I couldn't even make it 24 hours on the gluten challenge! And this waswith only 1-2 servings of gluten a day (less than the recommended 3 for agluten challenge).So I'm not sure what to do at this point. It's clear that a gluten challengeis just not worth the sickness and discomfort and pain. But if I don't dothe challenge, I won't get accurate blood test or biopsy results. Whichmeans I may go the rest of my life not being taken seriously by the medicalestablishment as having CD or even a gluten intolerance. The only "proof" Ihave is the symptoms I had (which are consistent with CD) and theunambiguously positive response to the GF diet. I think I can accept that asenough information for now, but I still fear being dismissed by doctors andsometimes wonder if I should deal with being sick for 3 months for thechallenge in order to get accurate an accurate blood test & biopsy.I've been fully GF since 7/06 (after having been wheat-free on and off for afew years prior). I now also know that dairy (casein) and soy are making mesick but I have a hard time accepting this and dealing with the fact that Ineed to eliminate them from my already-strict diet. But I've cut back ondairy and soy a lot and maybe one day I'll have the self-discipline to goall the way. One thing at a time.One positive thing about this change of lifestyle is that it's gotten mereally excited about cookign again, out of necessity. Though I do eat outsometimes (Ajanta and Socca Oven, both in Berkeley, are faves) I do tons ofcooking for myself now and have learned to make a GF version of almosteverything... About to start working on creating GF knishes, which should bequite a project. I'm also way more conscious of what I'm putting in my bodyand how it makes me feel, which I think is a good thing even though it canbe depressing and limiting at times.I really appreciate the support of this list, it's such a great resource.

[Guest guest]

Debbie - When I got the stool tests from Enterolab they tested my genes

as well, and mine are DQ8 and DQ6. And I guess DQ8 is a celiac gene.

But that alone doesn't diagnose CD, right?

[Guest guest]

DQ-2 and DQ-8 are the celiac genes. As I understand it, about 1/3 of the U.S. population has at least one of them, but not everyone with a gene has CD. If you do NOT have one of those genes, then they say you cannot have celiac disease. My wheat-allergic daughter even had high celiac antibodies for years, so much so that she had a biopsy (before the gene test was available), which came back fine and dandy and full of healthy villi ( Gray even took a look at the slide a year later). Now she doesn't have to test her antibodies ever again, and she knows that if she does eat wheat, she's just making herself sick, not killing herself. She also will not pass the gene on to any babies she might have. On Oct 8, 2006, at 1:35 PM, Isaiah wrote:Debbie - When I got the stool tests from Enterolab they tested my genes as well, and mine are DQ8 and DQ6. And I guess DQ8 is a celiac gene. But that alone doesn't diagnose CD, right?

[Guest guest]

But can’t a wheat allergy (IgE

histamine response allergy) cause itching and anaphylactic shock? Like

carry 2 Epipens and get to a hospital as quickly as possible?

Connie

From: [mailto: ] On Behalf Of Debbie Duncan

Sent: Sunday, October 08, 2006

1:58 PM

Subject: Re: [ ] Re:

Hi, my name is...

DQ-2 and

DQ-8 are the celiac genes. As I understand it, about 1/3 of the U.S. population

has at least one of them, but not everyone with a gene has CD. If you do NOT

have one of those genes, then they say you cannot have celiac disease. My

wheat-allergic daughter even had high celiac antibodies for years, so much so

that she had a biopsy (before the gene test was available), which came back

fine and dandy and full of healthy villi ( Gray even took a look at the

slide a year later). Now she doesn't have to test her antibodies ever again,

and she knows that if she does eat wheat, she's just making herself sick, not

killing herself. She also will not pass the gene on to any babies she might

have.

On Oct 8, 2006, at 1:35 PM, Isaiah wrote:

Debbie - When I got the stool tests from Enterolab they tested my

genes as well, and mine are DQ8 and DQ6. And I guess DQ8 is a celiac gene. But

that alone doesn't diagnose CD, right?

[Guest guest]

After reading this, I felt I needed to

comment on the last paragraph.

“I hope it's ok

for non-celiacs to utilize this list

etc since, for most intents and purposes, we're in the

same boat. Because we thought it was celiac for so

long (and it still may be for my husband and father in

law-only my daughter has been 'cleared') and I am a

health care professional I do know a fair amount about

the disease though.”

I don’t know about anyone

else, , but as far as I am concerned, this list is for anyone who needs to avoid gluten

(or is supporting someone who needs to avoid gluten) – for whatever

reason they may need to avoid it. I think I am not alone in never being

officially diagnosed. In fact, Rohlfs, of the Stanford Celiac

Clinic once told me over the phone that she thinks MOST celiacs are in my boat –

figuring it out for themselves. For my money, it doesn’t much

matter to me whether I have Celiac Disease proper, or some other form of gluten

intolerance. All I know is that I get sick (horribly sick), fatigued and

distended whenever I get even the tiniest amount of gluten.

In short, we’re all in the same

boat. Needing to avoid gluten because it makes us sick – who cares

if it is a specific type of sick?

Just my two cents, as an “unofficial Celiac”.

Lil

__________________________________________________

[Guest guest]

we just got some RAST results. my 2yo son is truly allergic to all gluten

grains. And we are

still waiting for a diagnose on gluten.

So I'm highjacking this support group too.

I believe in customer buying force. I believe in " the more the stronger " . And no

matter if

we (sophie and martin) are one day ruled in or out the celiac circle by a dr.. I

want to

THANK DEEPLY people who have been fighting for decades for the rights of gluten

free

eaters.

Thank you. Because of you there are restaurants, foods, mixes, online shopping,

TONS of

recipes, books, ... and that makes my life better and easier TODAY.

Thanks,

Sophie and .

(sophie probable DH and martin probable CD)

>

>

> I don't know about anyone else, , but as far as I am concerned, this

> list is for anyone who needs to avoid gluten (or is supporting someone who

> needs to avoid gluten) - for whatever reason they may need to avoid it. I

> think I am not alone in never being officially diagnosed. In fact,

> Rohlfs, of the Stanford Celiac Clinic once told me over the phone that she

> thinks MOST celiacs are in my boat - figuring it out for themselves. For my

> money, it doesn't much matter to me whether I have Celiac Disease proper, or

> some other form of gluten intolerance. All I know is that I get sick

> (horribly sick), fatigued and distended whenever I get even the tiniest

> amount of gluten.

> >

> In short, we're all in the same boat. Needing to avoid gluten because it

> makes us sick - who cares if it is a specific type of sick?

>

> Just my two cents, as an " unofficial Celiac " .

>

> Lil

[Guest guest]

hi everyone,

my name is Naren, i'm a 30 yr old guy diagnosed with celiac a little

over 2 years ago...

i've always struggled with being underweight and i am still unable to

gain weight. i believe this is due to gluten slipping into my diet,

so it has been hard for me. with my work i am always on the go, so i

eat out a lot. at least i enjoy eating now that i know i'm allergic

to gluten and i can avoid almost all the time. i feel lucky i've

learned many places to go out to eat in san francisco (on the cheap is

all i can do tho!) and i'm starting to learn about place in the east

bay. i just moved to Oakland 2 months ago and i'm glad there's great

grocery stores to go to over here also.

so the socca oven place people have emailed about lately is one

restaurant i'd like to check out. and i guess pizza rustica in

Berkeley serves gluten free pizza as well. if these places are on

anyone else's list and you'd like to have some company for lunch or

dinner that would be great. maybe i will have a chance to meet some of

you on saturday at the Kaiser building, 10:00 to 12:30 i believe.

take care,

Naren

On 10/4/06, piglet95037 <csilverstein@...> wrote:

> Hi all. We've had a sudden influx of new members, so maybe we can each

> take a chance to (re)introduce ourselves...

>

> I'll go first.

>

> Hi, I'm Carla. I'll be 27 on Saturday. I grew up in the south bay, but

> recently relocated to Chico for a was short-term (now year long)

> assignment.

>

> I was diagnosed earlier this year. I'm also allergic to bananas, raw

> carrots, aspirin and penicillin.

>

> I'm not the best cook, and really unsure of myself and my ability to

> change recipes to be gf, but I'm trying. Oh, and my rommie is a great

> cook, so that's a major plus.

>

> So, please, introduce yourself. It's always nice to know who else is

> reading.

>

> Carla

>

> bored in Chico, CA (and missing the Bay)

>

>

>

>

>

>

>

[Guest guest]

HI My name is Elonwy. I'm 29 years old, and was diagnosed with Celiac

Disease a year and a half ago. Luckily I know how to cook, and I'm

very grateful to my mom for teaching me. I'm couch crashing right now,

but will be moving to my new apartment in Alameda on the 1st of Dec.

Looking forward to getting to know the area.

Elonwy

[Guest guest]

Welcome Elonwy!

You are also on the celiac.com boards,

yes? We are glad to have you here! (Oh, and how DO you pronounce

your name? It looks Welsh/Gaelic to me…)

Happy Moving-In!

Lillyth

From: [mailto: ] On Behalf Of Elonwy

Sent: Saturday, November 25, 2006

10:29 AM

Subject: [ ] Re: Hi,

my name is...

HI My name is Elonwy. I'm 29 years old, and was

diagnosed with Celiac

Disease a year and a half ago. Luckily I know how to cook, and I'm

very grateful to my mom for teaching me. I'm couch crashing right now,

but will be moving to my new apartment in Alameda

on the 1st of Dec.

Looking forward to getting to know the area.

Elonwy

[Guest guest]

Yup, thats me. So there are two ways of pronouncing my name, the right

way, and the way my mom pronounced it cause she had never heard it.

El-o-nie is what everyone uses, the proper way is eee-lon-way, which

some of my more language savvy friends use.

Its Welsh, comes from the Perdain series (Lloyd ). I'll

answer to either.

Elonwy

>

> Welcome Elonwy!

>

>

>

> You are also on the celiac.com boards, yes? We are glad to have you

here!

> (Oh, and how DO you pronounce your name? It looks Welsh/Gaelic to me.)

>

>

>

> Happy Moving-In!

>

>

>

> Lillyth

>

[Guest guest]

I had it as a cross between the two.

El-on-way. The wy pronunciation was a “duh” for me – I just

finished reading How Green Was My Valley, a book in which all the characters

are Welsh. Everyone’s name (it seems) ends in wy…

Of course, as we are typing to one another,

you’ll never know if I mispronounce it! (Though I will do my best

to say it right in my head). I must say though, Eee-lon-way makes the

most sense… That is, if I stop & think about it logically.

I love Welsh names BTW. Perhaps we

will meet, and you can tell me how my accent holds up!

Lil

From: [mailto: ] On Behalf Of Elonwy

Sent: Sunday, November 26, 2006

9:57 PM

Subject: [ ] Re: Hi,

my name is...

Yup, thats me. So there are two ways of pronouncing my

name, the right

way, and the way my mom pronounced it cause she had never heard it.

El-o-nie is what everyone uses, the proper way is eee-lon-way, which

some of my more language savvy friends use.

Its Welsh, comes from the Perdain series (Lloyd ). I'll

answer to either.

Elonwy

>

> Welcome Elonwy!

>

>

>

> You are also on the celiac.com boards, yes? We are glad to have you

here!

> (Oh, and how DO you pronounce your name? It looks Welsh/Gaelic to me.)

>

>

>

> Happy Moving-In!

>

>

>

> Lillyth

>