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Posted 10/7/2005 1:19 PM (GMT 0)
hey everyone!

i got tested for celiac yesterday, though my biopsies from scopes showed no celiac my symptoms seem to point to that i have it.  so now i am on a wheat, gluten, egg and dairy free diet.  my doctor said that it might not actually be ibs, but to keep cutting out the eggs and dairy (and fatty foods) i have thought it could be celiac for sometime now (my mom too) and now i think i saw a lightbulb go off in my doctors head--

here is my question to you all, does anyone know anything about celiac? (all my info is from online--once again i find myself on my own...) are there forums that you know of that i can trust on celiac?  (i have found some, but they seem shady to me...)  how come HW doesn't have one--or do they?  (i really like it here and would hate to leave, this forum helped me so much that i definetly want to join a celiac one if it is the case...) 

i have a lot of questions regarding all this, my main one is that do i still have ibs if it turns out i have celiac?  also the info i have found shows no description of the attacks i have, so are they ibs attacks or what?

i have been off wheat for a week and gluten free for about half a day and i must say the outcome is remarkable, but i am just so darn confused.  my doctor told me that the internet was the best place for information and to shop at Whole Foods.  Thanks dude...  with my ibs diagnosis he gave me a pamphlet... Rock on...  so realistically i just want a diagnosis and to be on my way--but i need help.

I appreciate any info anyone can provide.  I truely hope everyone of you has a wonderous day!!!

--bunny

 

Posted 10/7/2005 1:36 PM (GMT 0)
Hi bunny,
It's possible to have a wheat and gluten intolerance without Celiac, since Celiac is an immune problem its possible that you may just have an intolerance (which symptoms can be just as bad). 

I don't know what sites you have visited and I agree the web only tells you so much however I am very fond of the mayoclinic site so here is the link to celiac (I hope it helps):

http://www.mayoclinic.com/invoke.cfm?objectid=0B50B26D-34AE-4F43-843BDA653DDEF6E3

I'm sure you can google and find some sites that have forums with celiac as a topic... additional topics on this site cost extra money so sometimes the Admin has to weigh all of that when deciding for additional topics.  We have had a lot of people though that come on with celiac and hopefully your topic will encourage people to post to your thread.

You can have celiac and IBS... IBS is a functional disorder and it can cause other symtpoms that you don't necessarily have with celiac.  I have UC as well as IBS, yes that can happen too.  UC causes diarrhea but my IBS symptom is constipation so my body never knows what it wants to do from day to day.

I hope you stay on this forum even if it is to vent about your symtpoms.  We will always be here to listen and give you support.

Take Care

Posted 10/7/2005 2:12 PM (GMT 0)
They just tested my daughter for Celiac Disease. She doesn't have it but they said that she carries the gene. Hope you can find out what is actually wrong. I can't wait for my daughters other results to come back. You should check out a Health food store. They most likely will have Glutine free stuff.
Posted 10/7/2005 2:54 PM (GMT 0)
thank you so much, dbab--i will look into that site, and thanks for clearing up my confusion. and yes, i may be an intolerance...
ibs as a "functional disorder"... that is just all wrong... i am sorry you got so much going on dbab, and a moderator, dag--well done!

i am glad your daughter doesn't have celiac, but good luck with all the tests, how old? (are you the one with the six year old with ibs!? i am so sorry, actually either way i am sorry-- ibs stinks no matter how old!
and yes, i went to a health food store and loaded up, i have even tried my hand at baking my own bread--it is very dense...
--bunny
Posted 10/7/2005 3:40 PM (GMT 0)
Hi Bunny
No, my daughter is 14yrs old. It is horrible what ever age you are. I told my daughter about the 6 yr old & she felt sooo bad. She couldn't imagine a little 6 yr old trying to deal with this. Sometimes she has a hard time dealing with it.
Posted 10/8/2005 12:05 AM (GMT 0)
BB, take a look @ my message--CORRECTION ON WEB ADDRESS FOR BLOOD TEST RESULTS, there you'll find a reply from a woman in the medical field who gave the actual codes for the tests described in the article; I've given them to my DR to write a prescription for the bloodwork; I was kind of disappointed when I found out that I DIDN'T have celiac; I know that sounds nuts but I just wanted to be able to nail down a diagnosis so that I would know for sure how to proceed; instead I was told that I may have a "sensitivity" to wheat; when I started to try & eliminate wheat in my diet--I was in for a real shock--practically everything
I was used to eating had wheat or was manufactured in a plant that processed wheat! The ones that surprised me were soy sauce & twizzlers!! And cornbread--has more wheat than corn flour....Anyway, it seems that you can have this simple blood test instead of going on an elimination diet; I wasn't good @ not slipping & eating something w/wheat, or eating something I didn't realize had wheat; the no-dairy diet was just as difficult; I'm Italian & you take away the bread & cheese & that's the end of pizza, & spaghetti & meatballs & ice cream (which has become a big part of my current diet!) I was hungry ALL the time; still am as I try to avoid wheat as much as possible--and I'm still not convinced it's the problem; hopefully this blood test will have the answers.
Posted 10/8/2005 5:06 AM (GMT 0)
I'm Italian too and it is very hard to acclimate to a strict less wheat diet. I don't have too many problems with wheat though and still trying to get to the root of the problem (a food journal has helped tremendously). That's the best thing I can recommend, I know its a tedious task writing down everything and how it effects you but the results of figuring out a lot about what you can tolerate or not really makes it worth it.
Posted 10/10/2005 1:40 AM (GMT 0)
Thanks all!
I have a food diary and i am reading every ingredient, and yes wheat/gluten is in everything. i am doing so much better though... i had the celiac panel blood test done, so we will see.
rice is my best friend, and veggies. and i am trying to have fun with it---i have to stay positive!
i will check out your blood post sick&tired, thanks!!
the hardest part was this weekend, it was my mother in law's birthday and we all went out to dinner and the only thing on the menu i could eat was the peel and eat shrimp (which were frozen, and i did not eat) and a horrid salad...
i have started "going" after every meal (not right after...) and it is not D, is that what normal people do? i get the cramps and urgency (not an attack urgency) but the pain goes away after i relieve myself. (not today, we where traveling and i get nervous when i know i will be trapped in a car....) what is the normal poo style???? ok maybe none of you are the right people to ask, but everyone i know says they don't always go everyday!!! wow! and they aren't constipated--they just don't have to go!!!
--bunny
Posted 10/10/2005 3:04 AM (GMT 0)

Bunny, everyone I know that is "normal" goes at least once a day.  I do too now that I'm on D.A. and probiotics.  I don't, however, feel that my BMs are of a normal consistency.  Sometimes they're soft, sometimes small and hard, and of course sometimes it's D.  I think "normal" BMs are somewhere between soft and hard.  I have one every now and then, and I know it is normal so I get so happy.  Lame, huh?  My stool can make me happy.  It's almost sad to think about.

Sorry about that horrible night out to dinner.  It is terrible trying to figure out what to eat when going out.  I try and find the most basic thing that I think the restaurant can't possibly screw up (sometimes they do though, of course).


 

Posted 10/10/2005 3:13 AM (GMT 0)
bunnybabe
Hi! that's always been a question I've had...how many times a day is it normal to go? Personally, I usually go 4-5 times a day. If I'm going to be doing something that makes me nervous(like going on a trip-being stuck in a car) I sometimes go, like, 6 times in an hour. I know, I'm totally amazing! I recently went to Vegas with my husband for our anniversary and I got nervous in the cab because my stomach felt funny. It was the longest 4 blocks I've ever traveled. I kept thinking, how am I going to get back to our hotel, and ride the elevator up to the 32nd floor after I've crapped my pants? Luckily, I didn't- but I had a major anxiety attack about it. Also, I don't always have D, just extreme urgency.
Posted 10/10/2005 3:15 AM (GMT 0)
Bunny,
It's great to hear that you are doing so much better. I'm telling you, a food diary is the best thing. I have learned so much about myself by doing one and even after this time, I'm still learning cause there is just too many foods to mention. I have learned also that it may not be one ingredient but who different ingredients act together in your digestive system that can make a big difference. I would have never known that before I started doing this, who would?
Posted 10/10/2005 3:20 AM (GMT 0)
I don't know for sure but I think I heard anywhere from 1-3 times a day is normal.

Irish, I hear you about the anxiety thing. I recently went to Lake Tahoe (3.5 hour drive from my city) and I almost had an accident. My sister and I got lost just as we were nearing and there was nothing but mountains and forest. I almost made my sis pull over so I could run in the woods, but it was night time. I was scared of the woods but also of crapping my pants. I had terrible cramps and I couldn't sit still. I made it to town, but just barely. These types of experiences are so traumatizing.
Posted 10/10/2005 9:47 AM (GMT 0)
Irish 1, I couldn`t believe it when I read your post. I came back from Las Vegas recently. I suffer from IBS and GERD, so I am usually on the GERD forum. I was the same as you I had some terrible panics trying to find toilets. I had some awful experiences in the rental car, and I did have a couple of accidents. It really takes it out of me after a bad toilet panic. I feel drained and quite ill for a few hours afterwards. IBS really can control your life if you let it.

I have been doing the low carb regime recently for my GERD and I am doing well with it. But interestingly, what I have discovered is alcohol is my IBS trigger. I always new I was bad after alcohol, but I had a full week of low carbs and no alcohol, and completely normal BMs, which is rare for me. Then I had some wine and all my IBS troubles were back.
How does everyone else with IBS cope with alcohol? Is it bad for some of you. Please let me know.
Posted 10/10/2005 11:37 AM (GMT 0)
i hate to say this--but it comforts me that i am not the only one who has accidents, gets anxiety about having an accident, or who dreads car/train/plane rides. i take the subway everywhere here, and i know which stops have toilets commuters can use. (it is so sad, since 9/11 they have closed many public rest rooms on the metro--i am in DC) i hate feeling that way, but it is reality. and i hate that you all feel that way too--but i honestly thought i was the only one before i found this post.
as for alcohol, yeah, my body does not like it. granted i have a blast drinking, but i can't afford the price i gotta pay afterwards, so for now it is off my list!! actually, a single glass of wine is usually okay for me, i don't know lately--with my new diet i haven't researched if wheat/gluten is used in the fermentation process...
i wish you all the best day!!!
--bunny
Posted 10/10/2005 1:08 PM (GMT 0)
Hi Bunny, thanks for replying. I know what you mean about alcohol. I am fine with 2 glasses of wine, any morethan that and I am on the toilet all the next day. If I don`t drink at all, I have the C. Can`t seem to win with this IBS. Also I can`t drink anything that`s carbonated. So all types of soda are out. I`m not sure if low carbs help the IBS because I know it is alcohol related for me personally, but it`s certainly great for GERD. Still in the early stages of research but I have stopped all my meds today. Gradually over the last week I have cut down meds and had very little carbs and I feel great at the moment. Will keep you posted. Take care, Vanessa
Posted 10/11/2005 3:15 AM (GMT 0)
Alcohol does not seem to affect me. I have read on here that a few people have problems with beer and I have to say I rarely drink beer, but I had one the other day and the next day had problems. which leads me t o another question...how soon after you eat something do you have problems?
Posted 10/11/2005 11:00 AM (GMT 0)
hey irish,
i will start cramping within 10 to 20 minutes, or sometimes while eating, and i would most certainly be on the toilet within 30 - 45 mins after i started eating.
--bunny
Posted 10/12/2005 9:05 AM (GMT 0)
Hello irish1 and bunny, I am exactly the same as you bunny, the same time scale. The food can be completely undigested when it goes through also. The pain can be awful at times and I don`t know about anyone else but once I sit on the toilet I can`t get off!!! Sorry to be so graphic!!!
Posted 10/12/2005 10:31 AM (GMT 0)
Yes!!! when i did my stool cultures a while back i was afraid they were going to tell me "well the problem is that you don't chew your food--we found chunks of carrot!!, of course you don't poo right, moron!" luckily that was not said...
when i am on the toilet my husband sometimes knocks on the door to check on me, he says that "i get lost" in the bathroom i am in there so long!!
our next apartment we are looking for a 1.5 bathrooms... sad what considerations you have to account for with all this!
--bunny
Posted 10/12/2005 5:44 PM (GMT 0)

I gotta say this: it must suck to have anxiety about not having a bathroom nearby, or fear of crapping your pants.  Even when I'm having a garden hose day (like 15-25x/day!), I don't ever feel anxious.  I've never had a true accident either (only once I had a "shart" in a restaurant after my colonoscopy!) so maybe that is the reason I don't have anxiety!

As far as what "normal" is, I hear anywhere from 3x/week to 3x/day is normal.  Three per day for me is a fantastic day; usually more like 6-8, and sometimes upwards of 20.  It's sometimes worse after a night of drinking with my friends, but sometimes not; I haven't figured out a pattern with that.  There are seemingly NO PATTERNS with my diarrhea whatsoever!  It's freakin' crazy!

Posted 10/12/2005 5:53 PM (GMT 0)
I can't believe you sharted in a restaurant.  LOL  What did you do?  I sharted once when I was 10 (in the privacy of my own home).  Ever since then I make sure the coast is clear before I let one go.
You're able to go out drinking???  I'm impressed, Sarita.  Not only are you hilarious but you're brave too.  Where do you live?  I would love to meet up with you for some "drinks."  tongue    (Actually I know you live far from me, maybe in Seattle or somwhere up there.  Too bad.)

By the way - When I have trouble with food it is almost immediately.  Usually the D hits me within 15 minutes of eating.  On rare occasions, on bad eating days, the D will wait until I am dead asleep.  I hate when this happens in the middle of the night.  It has to be the worst being woken up by D cramps and gurgling.

Posted 10/12/2005 6:17 PM (GMT 0)

I live in Alaska, and my friend and I were driving through this very small community called Peter's Creek (about 30 minutes from Anchorage, where I live) several months ago, a couple days after my first colonoscopy.  I mentioned I was hungry, and she said she had just eaten a ham sandwich before we left.  That sounded so darn good to me, even though I'm not usually a ham fan (maybe it was the after-effects of the Demerol??) So I said, "Uh...if you happen to pass by a ham sandwich store, can we stop there?" We stopped at this diner near my house after we came into town and just before my ham sandwich arrived, I leaned over a little to my left to squeak out a fart, and instead I SHARTED!

I got this look on my face like, "Oh, holy ****" and my friend was like, "What?  What happened?  Why do you have that ridiculous look on your face?" I bolted to the bathroom, took off my underpants, wrapped them in tons of toilet paper, and stuffed 'em in the trashcan!  Went back to the table and ate my ham sandwich with gusto!  My friend almost died.  She was like, "I can't believe you can still sit here and eat that, you dork!"

To this day, we can't talk about the Ham Sandwich Store (our new name for this particular diner) without collapsing in hysterics.

Posted 10/12/2005 6:21 PM (GMT 0)

Lil, re: the drinking...in Alaska, people are HARDCORE drinkers.  It is actually kind of disturbing.  I usually go out 1-2 nights a week and have about four drinks each night.  Here, that's considered extremely moderate drinking!  Sometimes it's okay the next day, sometimes not!

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