Do I Have Celiac, Not IBS, After All?
#168015 - 04/07/05 01:14 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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After suffering with IBS, or what I thought was IBS, it has come to my attention that I might not have IBS, but celiac disease.
I had my colonoscopy some years ago, and the doc diagnosed IBS. I've been on Heather's program ever since, and, for the most part, struck strictly to it (okay, I've had a little problem with the coffee), and I've done pretty well over the years .... but not as well as I've done recently, since I went on a new diet totally contrary to the IBS program, mainly eliminating all breadstuff completely. (No, it's not Atkins.)
I'm doing everything wrong for IBS: I'm consuming large quantities of fresh fruit (grapes, apples, oranges, etc.)and veggies (salad greens, peas, corn, broccoli, onions, bell peppers), without any kind of soluble fiber beforehand. I'm eating zero bread or any kind of pasta or rice or crackers or anything like that. I'm making sure not to eat anything several hours before bed, of course no booze, no dairy, no fats at all, and only a little grilled chicken breast, tuna or salmon. I do not eat every few hours; in fact, I eat only two meals a day, and I'm constantly hungry. Meals do not fill me up; I always leave the table starving. Oh, and I have coffee every morning.
For the first time in 6 years I've been losing an average of 2 pounds a week. But, more importantly, I have NO IBS SYMPTOMS WHATSOEVER! No cramps AT ALL, no Big D as I used to have, even on Heather's program, no nausea, no indigestion, no gas, I no longer wake up with cramps, I have no headaches, no back aches, no NOTHING -- I'm a happy camper! I'm tellin' ya, life is sweet!
The question is: WHY? One of the gals here suggested I might have celiac disease. I've been doing a search, and there's TONS of stuff in here on celiac. I've been spending all day printing it all out -- it's too much to read at once! -- and I have a call in to my doctor to ask for a test for celiac.
Anyone have any suggestions/comments/advice? I'd appreciate any and all. Thanks!
BefuddledBev 
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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It could also be Lymphocytic Colitis or Microscopic Colitis. As your doc if they took a biopsy during your colonoscopy and tested it. Doc thought I had IBS until the biopsy came back. And not all Docs take a biopsy during a colonoscopy especially if the colon looks ok. Mine looked ok but he took a biopsy anyway.
HTH,
Mike
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For Mike
#168027 - 04/07/05 01:32 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Thanks Mike. I'm going to ask him that when he calls back. Good catch!
BTW, since you don't have IBS, do you have Lymphocytic Colitis or Microscopic Colitis? Or Celiac? Something else? Did you notice a change in your symptoms after cutting out all breadstuff, like me?
Thanks again,
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Hmm....
#168028 - 04/07/05 01:37 PM
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Stephie
Reged: 03/10/04
Posts: 2696
Loc: Vancouver, Canada
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Hello Lovely Bev,
How very very strange!
How long have you been on this new diet?
I ask because when I got really frustrated while I was in England, I thought, "I give up!" and totally went off the diet. I ate whatever I wanted and for almost a month I was totally stable.
Then I got sick again.
I didn't eliminate wheat/gluten, but I must have eaten way less as I let myself have quite a lot of other foods.
The only way I could figure it is that my body decided to be stable for a while, and then just freaked out again. My doctor said that it could have been differing levels of stress, or just some completely unknown component that made the difference.
Since there is a test for celiac (isn't there? It is a really long process isn't it? The scope you, do a test, you stop eating wheat for 6 months, they scope again... Am I thinking of the right thing?), at least you can find out for certain. If the test comes back that you have celiac, at least you've got a diet that works for you.
If it says you don't, hmm... Maybe this diet just works for you?
I don't know if this is true or not but the GI I saw in England said that with IBS 1/3 of people's symptoms are completely food related, 1/3 are stress/food related and then there are 1/3 of people who's syptoms aren't related to either of those things and it is just a big mystery.. I always thought that would be a pretty confusing, but you've been dealing with this for so long that you already know so much about what works and doesn't work for your body.
I say get the test, and then let us know!! How odd would it be if your tummy problems could just clear up forever by elimiating wheat and gluten and all that stuffs.
Good luck!!!
**hugs**
--Steph
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~~I'm not crazy, I'm just a little unwell-I know right now you can't tell~~Matchbox 20
IBS-D,pain.
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For Steph
#168032 - 04/07/05 01:42 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Hi there, Pretty Lady!
Thanks for the suggestions. This is good stuff. I'm gonna read it over a couple more times, then print it out. I have a LOT to read on this!
Still waiting to hear back from the doc. (You know how that goes.) I'll keep you posted.
Thanks again Sweetie!
Bevvy
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Re: For Mike
#168034 - 04/07/05 01:43 PM
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MikeE
Reged: 03/31/05
Posts: 60
Loc: Seattle, WA
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I have LC. Yep, once I cut the gluten products I felt much better. I still have some GI problems, but I'm thinking those mainly stress related as they corelate with stressfull times and I've had anxiety/panic attacks.
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Re: For Mike
#168035 - 04/07/05 01:46 PM
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MikeE
Reged: 03/31/05
Posts: 60
Loc: Seattle, WA
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Oh, forgot to add that there is a test for CD I believe. Ask your Doc if you were tested for that as well.
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you should be able to eat rice, rice noodles, potatoes, quinoa, and corn products. So why don't you try eating rice and potatoes and see if you still feel good.
Perhaps you just can't handle carbs in general, which wouldn't be Celiac Disease. Or try some GF cereal, cream of rice, or rice bread in place of gluten bread.
It's no big deal to get tested. Just stick a tube down your throat and also some blood tests. No major prep beforehand and no after effects.
Good luck and let us know what happens. So great you are feeling so good. And how brave to be eating all these foods! Lucky lady!!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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CD?
#168037 - 04/07/05 01:53 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Mike, what is "CD"? Crohn's? Okay, now I'm starting to freak out.... 
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Heh, I missed that. Yeah, I can eat pretty much any carb except "stuff with gluten in it" and oatmeal. And by stuff with gluten in it can be stuff you wouldn't normally think of containing wheat, soy sauce for instance.
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Re: CD?
#168040 - 04/07/05 01:56 PM
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MikeE
Reged: 03/31/05
Posts: 60
Loc: Seattle, WA
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Celiac Disease
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It should take a simple blood test and/or look down your throat to diagnose Celiac.
It'd be nice if every Dr confronted with an IBS pateint did sucha test as rountine.
I personally am skeptical you have it tho.
A friend of mines baby just got diagnosed with it.
It's rare.
You usually show symptoms pretty early.
It also affects absorption of nutrients so you'd have low weight, issues with fatigue, anemia and even stunted growth.
If you do have it I bet it is mild.
*shrug*
Certainly worth looking into.
I am not a strict IBS dieter, I splurge every now and then (although coffee is a 100% no no for me) and usually am fine.
Throw in stress, hormones, or such and then I see an IBS flare up.
If I'm eating as I should then the onslaught of hormones or stress won't affect me as much.
I'd atleast go see a prof GI specialist who can easily rule out Celiac as well as a variety of other things.
I think far too much bout IBS is still unknown, this could be one of them....one of many!
Update us! ZGood luck!
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Thanks, TP!
#168054 - 04/07/05 02:30 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Thanks for your response. This is interesting. Encouraging even -- I think -- because I don't have any of this: "low weight, issues with fatigue, anemia and even stunted growth." Nope, not even close.
Could it be that my body just doesn't like bread? Oy....
Thanks again,
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Re: Hmm....
#168059 - 04/07/05 02:40 PM
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MikeE
Reged: 03/31/05
Posts: 60
Loc: Seattle, WA
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Yes, supposedly for a GI Dr to "officially" give a diagnosis of IBS they have to rule out everything else including CD. Can't remember the whole set of rules, but I don't think that all Drs seem to following.
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For Beth
#168060 - 04/07/05 02:41 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Hi Beth!
Thanks for responding.
Actually, I AM able to eat rice, rice noodles, potatoes, and corn. (I have no idea what quinoa is.) The reason I'm not eating that stuff is because of the diet; I'm losing weight without it, which is a good thing, because I have to reduce my weight, cholesterol and blood pressure, and so far, thanks to the diet, I AM. My numbers are dropping. By my June doc's appointment I should be down sufficiently such that he won't have to put me on cholesterol meds. That's my goal.
I have a call in to my doc to get tested; thanks. But if it's nothing serious, I'm gonna be one happy camper! Cutting out bread is nothing, compared with being able to eat all the fresh fruit and veggies I want, while having no cramps whatsoever, and especially no BIG D! YIPPEE!
Thanks again, Beth. I appreciate your help. I'll keep you posted.
Bev
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Well, Bev...
#168093 - 04/07/05 03:37 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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it sounds like you may have pinpointed your problem if you can feel good eating like you are, plus don't have a problem with rice and rice product or potatoes. Wouldn't that just be so amazing!!
They do make rice bread, FYI. It is a little pricey, but if you do have CD, and if you get the taste for some bread, it's an option!
I agree, the price of giving up bread is NOTHING compared to a life without symptoms and all the fruits and veggies you can eat! Oh, brocolli, salads, fresh unpeeled pears and melons! I'm drooling! 
Keep me posted on this, please!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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And actually, most people do not get diagnosed until later in life because symptoms don't always flare up right away or doctors don't test for it routinely.
Also, it is a myth that you need to be underweight also. CD has many symptoms. Being underweight is one of them, but not necessary for everyone.
Aslo, there is no such thing as "mild" CD. You either have it or you don't. Like you can't be "mildly" pregnant. You can have gluten intolerance without celiac disease though. And the severity of that ranges from mild to severe, depending on the levels of antibodies present in the blood tests.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I don't know whether or not you have Celiac, but your eating pattern, symptom shift, and weight loss could have something to do with a.) food combining and b.) less caloric density. Fruits and vegetables are less calorically dense than SF. Some people that swear by food combining have a set of rules re: which food groups can be eaten with other food groups, i.e. do not mix proteins and starches. Could it be a factor of either of the above?
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Purees
#168126 - 04/07/05 05:36 PM
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Wind
Reged: 04/02/05
Posts: 3178
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It's creepy, and a lot of people don't understand, but I'm afraid to eat IF unless it is pureed, i.e. baby food for adults. My food processor allows me to comfortabley incorporate vegetables and fruits into my diet, and well, even then I have certain things I will avoid like the plague. Is this "normal" for people with IBS? Whenever people come over for dinner, they call it "Barbie" food--the "Surreal Gourmet" did a show on Food T.V. where he presented
pureed food on a painter's palette, and well, since that show, I was inspired to expand my menu a little. I now have more colour on my daily plate/palate. You can make ahead. It doen't have to be bland, either. You control the contents. It's wonderful if you're stable. Alas, an ode to my food processor. But seriously, is this "normal?"
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I still prefer my IF veggies finely chopped or pureed, but I'm not scared of them anymore. If that's what it takes for you to eat enough fruit and veg, then stick with it for a while, I say.
Do remember tho, that SOME IF (i.e. not completely pureed food  ) is neccessary for GI health...yeah it's complicated! 
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Bevvy!
#168195 - 04/08/05 12:29 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Hey, this sounds pretty interesting! You've always been a bit different (coffee, no SFSs, etc) haven't you?
Medicinenet.com has some great info on celiac, especially this web page on the different blood tests - one isn't a reliable diagnostic so you have to get the right one! I think the reliable antibody test is the best test for celiac as although they SHOULD spot it if they take a biopsy (during a colonoscopy or endoscopy) I think it's a bit like testing for an IBD in that they can pick a spot that happens to be less damaged! Getting tested for the other types of colitis is a plan tho.
Plus, remember that you could be gluten or wheat intolerant w/out having celiac!
Good luck...let us know how it all pans out!
PS. Man, I've love to have salad and coffee again!  Unfortunately I know I don;t have celiac or a gluten intolerance  .
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You're right. I'll venture a little beyond my preferred sphere. I'm babying myself a little too much with my food processor/juicer.
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Gosh, you guys are gooood lookin!
I don't get it!
I keep seeing some of you guy's pics and think I gotta get my single friends to come HERE instead of eharmony.com lol!!
Well ofcource my husband has you all beat....ofcource, right? 
But if you all ever get IBS whipped " in the butt" literally  then you should do modeling or be on TV or somethin! Sheesh! The female public is missing out!!
LOL
Oh and yeah bout the CD, I dunno.
I know my friends little boy got diagnosed and the Dr deffiantly said he had it severe and that mild cases go undetected. So atleast that Dr said it can be mild or severe. He also said poor weight gain is the main symptom. That was pretty obvious for Seth (the baby boy) he is 16mos old but weighs 18lbs. Very bad. He also was behind developmentally too.
I dunno.
I'm not a doc.
Obviously Bev and all IBSers should get checked for it just incase.
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Every now and then, this comes up... looking around at the user pics here, one can draw the conclusion that only beautiful people get IBS.
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Ohhhhh wouldn't it be nice if that were true???
*sigh*
Then the beautifull people would have IBS so bad they couldn't act or model, and Soap Operas would look like the show Roseanne And then the chics competing to be Miss America would look like the contestants to "Biggest loser"!! And all Baribie dolls would come with toiletts!
And then we'd ALL feel good in a bikini!!!
Ahhhh
Yeah and the guys here are certainly hotties, but Atomic you are awfully pretty too!
I wish I could agree with your statement but you sure won't get me posting MY pic here!
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I can just picture my 5 year old asking for IBS Barbie! What a thought. And Miss America looking like Roseanne? Awesome! It'd be nice to see a Miss America who looked more like the general public than a super star (well, Miss Australia in my case but same thing different country)!And yep, the guys are hotties. I get DH all suspicious sometimes when he glances over and I'm reading one of the guys posts!
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Amy
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LOL Well thanks!  My wife seems to think I'm ok. Maybe we should start a calendar, the Babes and Hunks of IBS. LOL I have to agree that there are some beautiful women here as well in more ways than one. 
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