Yet Another "cinderella" Story?

[FaithInScienceToo]

Here I sit, hopeful that I have foud the answer to many questions...

Hi, all - I wanted to introduce myself, and thank you all for the posts I have been reading...

My name is Gina, and I live in Northern Cal. I have been on a self-imposed gluten-free diet now for 6 weeks, and have had excellent results, although I still have some symptoms, but I believe it is because I hadn't yet found all of the sources of hidden gliadin in my diet, and also because I may be dairy-intolerant, too.

I just sent off for a stool test kit, even though I have an appt. with a new gastroenterologist in about 10 days. I plan to do my own 'testing,' though, as I alredy know that there is no way that I will eat gluten again intentionally...and the doc will not be able to do conclusive blood testing on me at this point...and I am afriad of the invasive test...I've had enough invasive tests...besides, after all I've read, I simply won't eat gluten again, no matter what the tests results...My family is full of 'digestive problems' and my mom's 100% Irish...and my history is SO classic of gluten-intolerance, it's both scary and a relief...

Anyway...I was reading some of the posts here, and I had tears of joy come to my eyes...so, I HAD to write and say thank you...thanks for sharing, and I feel I have found a place to find many answers...from kindred spirits. I also wanted to share my story...

My history:

Many stomach pains as a kids, dismissed by my parents...they had 6 of us to deal with..

Very skinny as a kid - siblings joked about it...friends, too...

Thin still as a adult, no matter what I ate - became the envy of other women...but I always said in return that I hated 'being a weakling'...

Diagnosed with IBS in grad school. often doubled-over in pain in tears...

Was prescribed Librium...

Worked in South Central LA as a teacher, pre and post 'the riots'...

My condition got MUCH worse during those stressful years...did not see another doc...just felt secretly embarassed and 'broken'...

Followed by incurable anal fissures - I bled on a daily basis. had pasty stools that would not entirely pass...finally sought help again...

Followed by MANY invasive diagnostic tests (some painful) by gastroenterologists, to rule out everything BUT Celiac Disease, of course...

Followed by 2 Lateral Internal Sphincterotomies (to enlarge opening)- as I was finally told by one that I was 'anatomically small'...

Followed by small 'leakage' off and on ever since...and continued 'pasty stools'...

Which I have hidden from others ever since...by wearing mini pads daily...

Had 'only' one horrible 'accident' in a store since then (age 43)...WAS TRULY HORRIBLE, but I actually hide that from others, too, as I had on long pants, and went right to restroom, and miraculously cleaned myself before anyone came in...

Additional history...

Diagnosed at age 38 with ADD...

Followed by diagnosis of Fibromyalgia at age 39, by a rheumatologist after referral by a dentist after I complained about jaw pain, and my bite x-rays were normal...(I was positive on 14 of 18 tender points, and negative on all control points)

Saw a Nutrition-oriented Internal Medicine doc to get help with the 'fibromyalgia'...who told me to never ever eat gluten again...I didn't understand why...he didn't explain it...I didn't ask...I only thought his request was not 'a liveable situation in all practicality'....and that he was 'too much of a health nut'...so after 6 weeks gluten and allergy food free and feeling GREAT, I went back to 'normal foods'...

Followed by continued fatigue/pain/minor depression/pasty stools, 'minor' leakage now and then...

Followed by onset of intense night sweats...VERY intense...

Followed by trial of Revival soy supplements daily, after researching perimenopause...

Followed by more intestinal discomforts...(I now wonder if I am soy intolerant, too, or if I just can't digest it well right now...)...got no real help from the soy...

Followed by increase in Paxil Rx from 12.5 mg for minor depression and ADD to 25 mg QD by my GYN for the night sweats...

Moved since then after divorcing, and sweats came back...

Followed by prescription for birth control pills by current GYN...

Followed by SOME abatement of sweats...I 'only' get them pre-period now...

THEN, about 6 weeks ago now, I realized that I will be 48 this year, and that I CANNOT allow this year to pass unless I TRY MY BEST to take care of my health...I was SICK of 'feeling' SICK...

Followed by my remembering what the Internal Medicine doc told me to do - "stop all guten forever" (Dr. Hernandez, in San Antonio) ...

Followed by my getting on-line and trying to figure out why the doc told me 'no more gluten'...

Followed by shock at how many people are affected by gluten, and how damn scary it is...followed by HOPE!

Followed by my learning as much as possible about all of this...deciding I MUST see if it helps me to be gluten-free...followed by trying to be gluten-free...and sharing the decision with my family and my boyfriend...

Well...Last night, I finally looked at EVERYTHING in my litchen and checked all ingredients against 'forbidden and suspect' lists I had found on-line...

Needless to say, I imagine, you all know that half of what I had thought was "OK" was not, or was suspect...

Now...I can't wait to get the stool tests...

And get on with it all..no matter what the gastroenterologist has to say...

based on past experience with them, and with reading all of your posts, I don't expect to see a very well-informed doc...but I will hope...

Anyway...My other happy thing to share is that I now have a lovely man in my life. Paul, who is completely supportive of my doing what I need to do, diet-wise, to feel better...I still haven't told him about ALL of my symptoms...it's all too damn embarassing...but most are 'going away' with the gluten-free diet...so, I now have a lot of hope...[i may copy and past this for him, though,,,so he'll know exactly what I've been going through]...

So...That's my story...

Thanks for listening. I have been, and will be, lsitening to you, too...

Love, Gina

[FaithInScienceToo]

sorry for all of the typos...missed the preview option...G

[KaitiUSA]

That is good to hear I'm glad we can help..Also, have you also checked your makeup(esp. lipstick) and other products?It's so great that you are seeing results already I wish you all the best of luck

[FaithInScienceToo]

Thanks for your support, Kaiti

Yes, I have been copying and pasting as much info about lipsticks/glosses, etc as I can find on the Net, and on here...

I am happy to say that I have lots of Ecco Bella products already...

Even though I didn't take the doc's advice to go gluten-free 3 years back, I did at least become 'more of a health nut'...I have been taking many good supplements, and I already use many food and cosmetic items that are turning up to be safe...although there are others (including favorites!) that have to be thrown out...

But...a small price to pay for a happier and healthier life...

Best,

Gina...

Ps: Sorry, I voted for and gave money to both Gore and Kerry. Must have been the brain fog from the gluten... (Just joking)

[KaitiUSA]

It's ok your still cool.

You seem to be really on the right track and if you have any questions don't hesitate to ask.

I had to throw out alot of my makeup too...but as you said just a small price to pay for a happier and healthier life.

Talk to you soon and best of luck God bless

[celiac3270]

Welcome, Gina! You sound very celiac to me--ADD is relatively common with untreated celiac. Also, doctors often say "IBS" when they can't figure out what the problem is. The Irish descent further verifies it and your symptoms sound very much like that of a celiac. Any bloodwork (or an endoscopy, but that's invasive) that you do now will come back negative. You can, however, still get accurate testing without eating gluten. Check out Open Original Shared Link. People who have used Enterolab have loved it and you can get accurate testing, even if you've been off of gluten for months. Anyway, fire away with any questions you have

[flagbabyds]

Welcome! what part of N. Calif do you live in? I'm in Bay Area

[FaithInScienceToo]

Hi celiac3270 and FlagBabyDS:

celiac3270: Yes, EnteroLab is the lab I found on-line, via an article on here. I'll let you know the results when I get them - and I'll let the doc know, too...I hope he doesn't laugh at me when I tell him I am doing the stool testing...I understand that it is not yet fully accepted by the medical community as 'valid.' But, I have a Master of Science degree - mainly research design and methodolgy, and all that Dr. Fine wrote about the testing seems very logical to me, so I do hope the tests will prove to be 'worthwhile.'

FlagBaby: I live in Lafayette currently, but I am moving in with 'my lovee' soon. He lives in East Oakland - Glenview area, next door to Piedmont. Where are you located? i see you are quite young...but diagnosed as a 'baby'...wow...

...I imagine that you already know of all the best resources for goodies around here...but, just in case you hadn't heard, I learned that the Piedmont area now has a Gluten-free bakery called 'Mariposa' (you can google for their web site) - It was started by a chef from the Calif. Culinary Insitute, in San Fran...You can only order on-line right now, or look for their stuff in 'area specialty stores,' though...

I ordered some gluten-free brownies from 'PatsyPie' (another site I found on-line) - they are on their way...I hope they are good :-) I also bought some brownie mixes...I have now ordered from about 6 on-line sites...am trying to re-stock the pantry

But, for the first time in my life, I am putting on weight with 'normal eating'...I guess that means I am beginning to absorb food more efficiently...I am 5'9" and WAS 124...I think I am about 130 now...only took 6 weeks...I better start emphasizing the vegies...AND getting my rear end back to the gym!

It's funny to have to be concerned about putting on 'too much weight' now...a VERY ODD feeling for me, especially when I am happy about it!

[FaithInScienceToo]

It's ok your still cool.

Kati: THanks, You're still cool, too, even though...

[pixiegirl]

Hi Gina! Welcome to the list.. I think a lot of us have somewhat similar stories in that we have been diagnosed with everything else first other then celiac. I too had the IBS and lactose intolerance thing and my blood work for Celiac came back saying I do not have Celiac. I just didn't believe that because immediately after having the blood drawn I went totally gluten-free and in days 90% of my symptoms were gone, and like you, I had years worth of symptoms...

My doctor apparently relies on the blood test because he specifically told me, start to eat grains again you need them. Well I switched doctors (my new one is somewhat better in regards to the celiac thing) and I paid for the EnteroLab testing. It came back that I have the two "main" genes for celiac. NO KIDDING, I knew this. My current doctor wanted to do the invasive tests to be sure, but I don't need that. I know this is what I have.

Every time I've accidently ingested gluten since going gluten-free I'm sick as a dog, so its pretty clear. So don't feel badly if doctors don't support you in this, if going gluten-free cures your symptoms then to me thats the answer. I finally talked my mom into going gluten-free, she has had the runs for years and has seen doctor after doctor and guess what, 5 days after going gluten-free they were gone. But she cheats because she can't live without bread, sigh.

This weekend I'm making her some Manna by Anna bread, I ordered a case of it and its unreal! The best gluten-free bread I've ever had and better then many regular (flour) breads I've eaten. So if you need bread or sandwiches, try this stuff, its awesome!

good luck, Susan

[KaitiUSA]

FaithInScienceToo-Thanks

If you need help with anything let me know and if you have any questions just ask away

[FaithInScienceToo]

PixieGirl:

Thanks for the kind welcome, for sharing your story, and for the info about Manna bread, Susan - I will definitely try the stuff!

Kaiti (AKA, to me, I can't believe you voted for 'you know who' and I can't bring myself to write your ID...haha):

I love ya already! I have a feeling that I will be asking ?s along the way...

I have gotten SO much info already from reading posts on here, but there seems to always be another ?

When I was making breakfact this morning, I realized that I forgot to check out all of the many brands and types of teas I have (I LOVE tea)...I found myself saying outloud to myself, "I see this is going to be one of those never -ending things..." and then thought...yep...there will always be a new product to have to check out...always something more to learn... UNLESS 'they' come up with a way to block those awful proteins...Maybe by the time I am in a nursing home, there will be a drug I can take, so I won't have to worry that 'they' will poison me to death...haha...

Yes, believe it or not, I am ALREADY concerned about: "What ifs"...like, what if I become disbabled and cannot feed myself...Do I now need my medic alert bracelet to also say, "Gluten-intolerant?" (I think I am a bit worried about this because I don't have kiddos that could tell 'them' I can't have gluten, and because I have worked in a hospital...and 'they' make loads of mistakes...).

Hey! There's another question, I guess?! :-)

Best to all -

Gina

[tarnalberry]

Thanks for the heads up on Mariposa (my in-laws live in your home town, so when we're up there for the holidays, I'll have to check it out).

As for the medalert idea... we've had a couple discussions on here about that, and the general concensus is "probably not the best idea, but everyone has to do what they feel is best for them." The strongest argument was that, since celiac is not _immediately_ life threatening, you don't want a paramedic who doesn't know what celiac is to avoid giving you life-saving medicine because he/she is uncertain if the medicine will kill you. Since you have others in your life who would find their way to your hospital room in the event of an emergency, and really, you wouldn't be fed solid food unless you were concious, it's something that could be taken into account after the emergency passes. But I encourage you to go read the links, there were a variety of opinions and arguments (I mean argument in the debate sense, not in the heated argument sense :-) ) that may help you make the right decision for you, whichever way that is.

[flagbabyds]

I'm in Stanford, there is a great coffee shop in mountain view which makes gluten free sandwiches, and they are really good, GLobal Blends of Castro street.

I do wear a medic alert because I also have a wheat allergy as well as gluten intolerance.

[KaitiUSA]

FaithInScienceToo-Actually I didn't vote for him. I would have if I could have but I am only 17. I will be 18 in 5 months. That's cool if you call me by my name. I have alot of friends who don't think the same thing I do and I have no problem with that.

I agree that since it is not life threatening it probably wouldn't be the best to have a medic alert bracelet. If someone with celiac goes to the hospital I think the doctors should know about celiac so they don't give us any medications with gluten in it. I think all doctors should have to go back to medical school and take a special course on celiac disease because many of them don't know how much stuff contains gluten.

I know more about celiac then probably most of the doctors thats sad because they went through medical school and I just started college not too long ago.

Talk to you all soon

[FaithInScienceToo]

Hi All -

Thanks for the input - It helped me decide about the Medic Alert bracelet thing -

I AM going to add "Celiac disease" - NOT 'gluten-intolerance' -

Since I don't think paramedics would even think "celiac disease" might prohibit any meds from being given...also, since celiac disease doesn't prohibit any life-saving drugs, no ER doc would ever tell a paramedic - via radio/cell phone - to not give any meds.

That way, at least, IF.."God-forbid" it would ever happen to me, although it sadly VERY MUCH did happen to my now brain-damaged older sis, who was in a coma for a week and woke with frontal lobe damage after a reaction to an anesthetic...

anyway...back to the thought...

...IF I ever become disabled AND would need tube feeding, 'they' then might make sure I do not get gluten in it...

Hey...another question!...are tube feeding formulas 'automatically' gluten-free, and I don't even need to be concerned about that scenario?

...Accept the scenario where I am old and decrepid and needing someone to cook for me?...(which I do now hope to be one day...OLD, that is - not decrepid ...It is such a nice feeling that I now finally think that I may actually make it to old age...)

OK - well - off to spend the day with my little 4-year-old niece...

Will check back for replies this eve.

THANKS, again!

Gina

PS - Kaiti...only 17?...well, now...THAT explains 'it' :-)

[celiac3270]

I don't wear a medical bracelet because:

A) I'm not a little kid who's four years old and doesn't know not to accept gluten. If anyone offered me anything that contained gluten while I was conscious, I would know not to take it.

B ) If I was unconscious, there'd likely be a problem, so give me anything--a bit of intestinal damage is a small price to pay for your life and I wouldn't want anyone to even question giving me medication at that stage.

Just my take on it--

P.S. I'm also a Bush-backer--Repub.from NYC (no, it's not an oxymoron) . Only 14, too......so I couldn't vote, either, Kaiti.

[judy05]

Just a note about Doctors. I gave my MD a copy of the medications

not containing gluten and he thanked me profusely, asked where

I found it, of course I told him about this site. My Gastro doctor

didn't know if Nexium was safe (it is) and he has discovered

over 200 celiacs in the past 2 years. I also had to instruct

my dentist on gluten-free meds because I used to get brain fog after

every visit. I showed him the info from a small guide book

from Clan Thompson. I agree that Doctors need to learn a lot about

this disease and we are teaching them one by one.

[KaitiUSA]

Yes I agree celiac3270 it would be a small price to pay if your laying there unconcious.

I think my parents would be there to make sure they put nothing into me that contained gluten. I also carry a card in my wallet that says I am a celiac. I would hope they would not put anything into me that contains gluten. If they did thats a big liability factor on their part.

But if I really needing medication and something is really wrong then I would want them to put in medications no matter what then when I am stable check the meds and if its containing gluten then switch it.

Judy05-that's a good idea to give your doctor a copy. I need to do that too. May help not only us but other celiacs in the future. I always like to teach doctors a thing or 2 when I can

P.S-yes I was about 9 months away from voting I was so mad! At least I wasn't the only one who really wanted to vote who couldn't..I'm with ya celiac3270

[celiac3270]

I know--next election, I'll be 17, but my birthday is Jan. 21, so I'll miss it by about 2 months!

I agree about educating doctors when you can--though the doctor I have now is extremely good--I don't think there's much, if anything I could teach him

[KaitiUSA]

celiac3270-man missing it by 2 months next election I would scream I had a cow missing this one. I still went to the polls and spent all day handing out stuff and had my car advertising too

Yeah there is not much I could teach my doctor and GI doctor they both know about celiac very much and are awesome. I had to switch doctors a few times to find them. The doctors that told me I was fine and had nothing wrong with me will be receiving a nice copy of my blood test and some gluten free medications list. Even though they didn't help me maybe they will be able to help future patients.

One of the doctors I went to who knew I had celiac a while ago gave me medicine that she said was gluten free. She was a little to quick to say that though and we didn't even want the medicine at that point most of my symptoms were going away. So we called the company before I had any and they said it contained gluten! I couldn't believe it. Shows how much we all need a good doctor who knows about celiac.

[celiac3270]

Yes--the first doctor I went to (until I was maybe 11 or 12) kept saying my symptoms were normal in childhood and I'd outgrow them. When I didn't, he said that it was probably allergies, but there's no point in testing since I'd just grow out of them. He wasn't on my family's insurance plan, so we changed doctors. Looking back on it, he handled the situation terribly: no bloodwork, no endoscopy, no testing of any kind.

The next doctor was pretty good--he actually tried to do something about it. He thought that my symptoms matched up with "cyclic vomiting" a childhood thing that you grow out of. Since it's related to migraines and migraines run in the family on my mom's side, he thought that was the culprit, but suggested that I go to a GI that he recommended to make sure--which was smart and led to my diagnosis.

The GI was terrific with dignosis--he thought maybe allergies, maybe celiac, etc. and when he ran bloodwork and came back with positive results for celiac. He ran an endo. -- also positive. He wasn't as good with the recovery stage of celiac and I always needed to check medications he wanted me to try cause if I'd ask if they were gluten-free, he'd say he's not sure...I should call them to find out, etc. When I was still getting sick after about six months, he didn't really get it--I switched to another GI, this one specializing in celiac, whom a celiac friend had gone to and liked a lot.

He's the GI I still have now and he's terrific. Knows so much about celiac and alternate conditions--very good about testing, suggesting medications, but knowing they're gluten-free. He ran an endo. to make sure I was healing (and I was completely healed) and then went into investingating other problems. Last visit, he thought it was weird that my stomach was gurgling so much--we did more testing and bingo! I got my diagnosis--malrotation of the intestine. He's been the best doc. with the celiac, though I must give the other GI credit for diganosis and my regular doctor simply for suggesting that I make sure that's the problem (when it wasn't) instead of assuming he must be right.

[KaitiUSA]

He sounds like a very good doctor like one that actually deserves his

paycheck I drive an hour to see my reg. doc and my GI doctor...but it is well worth the drive to have a good doctor. I had mono that triggered it but my old doc for a year kept telling me the mono takes a long time to get over(she didn'e know what was going on thats why she just made something up) I'm not that dumb but when I switched doctors again first thing he said I think u have celiac got a blood test came back positive and referred me to a GI doctor and the rest is history. Good luck with the surgery....you will be missed on the board but we'll all be thinking about you and praying for a speedy recovery

[flagbabyds]

SOunds like a good Doc. My GI doc comes to our ROCK meetings to learn more... He's very nice

[FaithInScienceToo]

Hiya, again :-)

I see George Dubbya has some young groupies on here... :-)

Hey...I lived in Texas under his 'governorship.' NOT a pretty picture...

Anyway...enuf politics...let us stick to the real reasons we are here...I didn't mean for my little friendly jabs at Kaiti to turn into a love-fest for (ugh...I truly hate to HAVE to call him this) "our Prez"...Hey...she made her ID on here 'political'...just letting her know where I stood, too :-)

OK...so, about Medic Alert bracelets!...

Yes, it is an individual decision.

I believe that my decision is right for me, but I also can see that others may not feel at all similarly...

Why I made my decision:

I worked at UCLA hospital MANY moons ago, for 4 years as a "Unit Secretary" while an undergrad, and was continually shocked at the LONG list of errors made by nurses each and every week...AND after having had a sibling go through the whole comma thing, I know that I'd rather have a chance at 'speaking for myself' under the possible scenario or ever being in a coma...

...and, paramedics cannot give meds without a doc's orders...they have to call the ER doc...and since I don't think any ER docs will get confused about 'celiac disease' and life-sustaining meds, I have NO concerns about paramedics not giving me life-sustaining meds...

So...the only scenario I am concerned about is:

IF I were in a comma, and no loved ones were nearby, or alive, to help...I would want my bracelet to state "Celiac"...because I don't want to take the chance that my own immune system will compromise my recovery, IF 'they' didnt know I was 'a celiac'...Commas are not pretty things, and I'd rather make sure that the nurses (and my screwed up immune system) don't 'do me in' under that potential, although highly remote, scenario...

Thanks for your very good input, young ladies...I truly appreciate your replies.

Especially the advice about giving docs and dentists lists of gluten-free meds! Great idea! We need to educate everyone...ESPECIALLY the docs...

Love -

Gina