Celiac Disease
#50219 - 03/13/04 07:18 AM
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rlan
Reged: 06/05/03
Posts: 161
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Well, I've put a lot of posts up this week so I'm sorry if i sound crazy (I'll blame in on my stomach!) In one response Heather had mentioned celiac and I was wondering if there is anyone on the boards who has it. I thought there was someone who mentioned it before but I can't remember her name. Anyways, anyone who is IBS-C and thought they had celiac and was tested? pos. neg.? I'm wondering what I should do b/c I don't have a GI that I'm seeing right now b/c didn't really like him and didn't help. So, to get ttested 1st need to find a GI. what i've read shows that celiac predom. IBS-D but so many different ways it presents itself. I've been trying hard to stick to the diet but so far no luck. Sometimes I just think I'll stop eating (my mom who has problems also says the same thing!) Thanks for listening to my frustration.
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I have some experience with the Celiac question. I am IBS -D. First you can just get a blood test thru your regular Doctor testing for the Celiac antibodies(IGG,IGA, and EMA), this is just a simple blood draw and then based on those results you will know better what direction to head in. You may test positive for half of them which I did and have to go a step further to determine if you have Celiac. I took this next step (an endoscopy) so if you find out you need to too I can answer some questions for you.
I was also on the gluten free diet for celiacs as well as dairy free diet for 4 months and did get a little bit better. Looking back it was probably the elimination of dairy and wheat bread that got me a little better. But after being on this IBS diet for just a week I am much better. A nurse told me that if you were a celiac and eating even wheat based white breads (ex. french) you would not be getting better.
Sorry so long, but I have been shuffled between these two (IBS and Celiac) for about two years now. The most helpful statement was from the nurse. If you are a true celiac you will not get better if you continue to eat the breads recommended in the IBS diet.
I know how frustrating it is, you just want to eat!! Hope this helps.
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Hi,
I've actually been going dairy free and gluten free for the past 3 months. I did not get tested for Celiac, however I have felt better. My syptoms weren't incredibly bad, almost always D rather than C, and even then not really bad. However, it still wasn't good enough for my lfiestyle.
My Dad has had Crohn's for most of his life and he recently went and saw a naturopath who recommended a diet similar to Heather's, but also gluten free and he feels way better. When he talked to his GI, she said if it works go for it. The naturopath said that there is difference between Celiac and just a gluten intolerance (not totally sure what that'd be though).
I also know a few other people who found it made a big difference. I am hoping to try and integrate it back into my diet at some point when I have different job, but for now I'm sticking with it. Although it is really tough to shop for! There is wheat or dairy in almost EVERYTHING!
I say get tested, however, if you haven't been eating gluten for a while, the blood tests might not show anything. Trying the gluten free along with Heather's recommendations has helped me quite a lot, and that's what is important.
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so when you did the next step I'm assuming it came out neg. since you're following this diet with "wheat" bread? or not? Thanks for teh suggestion I need blood drawn for something else so I can do it all together! thanks for your response the longer the better!!!
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HI!
I have posted on the boards recently and I am a celiac, but I hae symptoms of IBS according to my GI doc. Celiac does not always show up as D it can definitely cause C and for as much as 20-30% of the celiac population the disease causes migraines, osteoporosis, reproductive disorders, allergies (like seasonal allergies) and extreme fatigue. My suggestion to you is to buy a gluten free book/recipe book and start learning as much as you can about the gluten free way of life. Try the diet for the next several weeks and see if you start to feel better. Even if you don't have celiacs...many people (including IBS sufferers) are intolerant to wheat (however they normally do okay with oats, barley and rye that celiacs can't have) If you do have celiacs they are webistes just like this one for celiacs (celiac.com, gluten.net) that provide a wealth of info and products you can buy on line to make at home (ie bread etc) THe only treatment for celiacs is to revamp your diet forever.
Hope this helps...good luck,
amy
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Yes it did come back negative. Although....I had been gluten free when I had it done for 4 months and the Doctor said this did not matter. But, I have since read that it does matter in that the intestines would have had 4 months to heal during that time. So make sure you are consuming wheat/gluten when you have these tests done.
I do still have some small doubts as to wether I am not a celiac but I feel that if I am getting better on this diet that that is the surest sign yet that I am on the right track.
Good Luck!
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I don't have celiac, but I know quite a bit about it. What do you want to know...just ask!
Actually, I'm going to a new allergist who isn't so sure I don't have celiac even though my tests came back negative. An upper endoscopy is the gold seal test...but it's NOT 100% accurate! My allergist has a patient that tested negative but HAS CELIAC! So we're trying to get all my stuff straigthened out.
Have you been tested? Whata re your symptoms? Feel free to give me pages of info. if you wish! I would LOVE to help in any way I can....
I hope you get things figured out soon!
Sincerely,
Ruchie
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Formerly known as Ruchie
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I had a question about Celiac....
does it get worse with stress like IBS does? For example...my stomach has been just terrible since this whole break up thing...but if I had celiac would my stomach still get worse from the stress??
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Great question Kimm! To my knowledge stress can definately exacerbate celiac (as with any stomach ailment). I think I read that on celiac.com.
In fact, I read something a while back that mentioned that celiac can be dormant in people UNTIL something catastrophic happens in their life. (I'm not sure if this is true...but it is something I read somewhere along the way). Have you been tested for celiac? What are your symptoms? do you have any thyroid problems or other disorders?
I hope you DON'T have celiac and that your tummy feels GREAT soon!
*hugs*
Ruchie
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Formerly known as Ruchie
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Hey...thanks for the quick response!!!  I have been tested for pretty much everything except celiac...but I'm getting tested for it tomorrow.
I also need to get tested in the near future for something called FAP (Familial Adenomatous Polyposis)...because it's passed on through a faulty gene and my mom's twin sister has it. It causes polyps to grow on your intestines and they have to be removed before they turn cancerous. Anyway...I'm crossing my fingers that it's neither one of those two things and that would rule out anything except IBS...but we're pretty sure that's what it is anyway...
Now I'm starting to ramble....thanks again for the reply!!
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Ugh, Kimm...
#50806 - 03/15/04 11:31 AM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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Nice week you're having there! 
Hope you don't have celiac. I've tested negative (bloodwork), but intend to have the biopsy anyway. I quit gluten about 3 weeks ago and feel much improved. I want to get to the bottom of it. We'll see, though, 'cause I'll have to go back on it before the biopsy! If I have a backslide, I'll consider that my answer no matter what the Docs say! (And I agree--- it's a pain in the butt to shop for! And expensive.  )
Anyway, glad you're posting. Hope you're doing ok.
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My GI just told me one of my antibodies was highly elevated, so he wants to do the endoscopy. I know before that CRC had said they had it done. What's it like? Sounds strange! It's like others have said though, even if it comes back neg I think I might still try gluten free b/c everything else hasn't worked. I'm at the pt. now where I just want to eat whatever b/c it doesn't matter waht I eat I'm still the same. Somedays annoying/bad but can deal and other days just bad. It doesn't make sense. Well, enough blabbing. Oh, I know Ruchie has done gluten free maybe she can tell us if the diet helped her. Good Luck and hope you're feeling better.
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Hello,
I'm a little confused about the whole testing half positive, testing negative thing. I just had the celiac test, so if I understand correctly, even if the darn thing comes back negative, there's still a chance you might have it? If so, what is it about the endoscopy that helps them figure it out?
Thanks!
Kelly
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Hi,
Yes I did have the endoscopy done about 5 years ago. It was outpatient so you go home the same day and the night before you just don't eat after midnight. You go in and they give you some good drugs. You are not put to sleep but you do not remember a thing, it is weird! I did remember coughing once and them saying my name but that was it. Then you are done, it is pretty quick and you go to recovery and are pretty sleepy for est of day. the next day I remember having a sore throat. It really was not bad and I am a first class wimp about this stuff.
Anyway, good luck with it but I do believe that the way you feel when you are or are not eating gluten free is the real deal. However, I think a definitive diagnosis is good because it keeps you commited to the diet.
Good Luck with it, be sure you are eating gluten for awhile before you have this done as I was not for 4 months and therefore cannot trust the results and it was all for naught.
It's weird but with all the tests that you have done to check for anything other than IBS where you have to fast I always feel so good. Must be that your digestive tract gets a rest. However, until we enter the Star Trek era where we can just pop a pill for our nutrition this is not a viable option!!
Good Luck with everything. Again, if you have had a barium enema or a colonoscopy(yuck...double yuck) this is way easier, so don't worry.
Cindy
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The endoscopy actually looks at the villi (little finger-like projections) on the wall of your intestines. With celiac there is damage to these villi which are responsible for absorbing the nutrients from your food. In some cases the villi are flat or gone and the food goes right thru with no vitamin/mineral absorption. Which is why celiacs eating gluten get malnourished! When a celiac eats gluten free the villi grow back and all is well with time.
Check out www.celiac.com for a really good article explaining why testing is not always accurate.
Hope this helps.
Cindy
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I am pretty sure I have celiac.
Almost 2 yrs. ago someone suggested my symptoms sounded like celiac and that I should try the diet.I did and felt much better,but I was still having enough trouble that I wondered if there could be more problems.After I had been gluten free for 6mos. I was told it is good to be tested,but that being gf usually affects the results of tests.I was tested and the results were neg.
In Dec. I found a GI who thought I prob. have IBS-C.He put me on that new med. Zelnorm which helps the gut to move or works to coordinate the motion in that area.That has helped but I still wonder if I have celiac.It is very important to know bec. if I am eating gluten products it can cause major damage.So now I am back eating gluten products for a while(3mos. if I can make it that long)to be retested.I have had a gene test done and it shows that I have both the genes that predispose to celiac.This is the reason I am hopeful to get a true answer by having a test done w/the gluten influence.Hope you find out what works for you.It is a process and sticking w/the IBS diet can really help you sort it out.
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I think you should get tested for Celiac (blood work first then endoscopy if necessary) first. If you go on a gluten-free diet and then test you will skew the results. My doctor told me I should keep bread or pasta in my diet everyday until testing was complete.
Another thought - Gluten free (seems like gluten is in sooooo many products!) is a huge alteration to your diet why go through all that when you don't even know if it is needed?
Leigh
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