IBS vs. Celiac Disease

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elcamino
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Date Joined Sep 2005
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   Posted 5/21/2007 6:02 AM (GMT -7)   
Hi all,
 
Quick question.  Have any of you ever been tested for celiac disease (gluten intolerance).  I'm currently being tested for it (don't have results yet), but I've been reading that many people with supposed IBS benefit greatly from a gluten-free diet.  I guess that many people have a gluten intolerance but their bloodwork and/or biopsies come back negative for celiac.  It's like celiac disease running just beneath the radar.  but when they try the celiac diet, their IBS symptoms disappear? 
 
I already took the blood test about 3 weeks ago, so this week I've been going gluten-free and so far so good.  Minimal cramping and many days pain free.  Too soon to tell, though, if the diet is truly helping.
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


dbab
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   Posted 5/21/2007 11:33 AM (GMT -7)   
I've been tested for celiac and it came back negative. I have not noticed a difference when I cut out wheat/gluten in my diet however you are correct in saying that some people have an intolerance. You can have an intolerance and not have Celiac. Celiac will cause more problems than just GI problems if you consume gluten/wheat. You can have major intestine damage as well as joint problems, cognitive problems, etc. It can be tricky though because sometimes the tests are not reliable. The best thing to do is just experiment. Good luck with your results.

Take Care
"Des"
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Keriamon
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Date Joined Jun 2005
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   Posted 5/21/2007 2:46 PM (GMT -7)   
I agree with Des. If you cut out all gluten and feel better, than don't eat gluten anymore, regardless of your test results. You may have Celiac's disease and it's not showing up (I've heard that the blood test is less accurate than something else they can do--stomach biopsy?), or you may have an intolerance that's not a full-blown allergy.

I have a severe reaction to sugar alcohols which may or may not be an actual allergy, but I tell everyone that I'm allergic to them just to make sure that no one gives me any by accident in meds or something.

elcamino
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Date Joined Sep 2005
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   Posted 5/22/2007 4:32 AM (GMT -7)   
Thanks for the replies.  I will stick to a gluten-free diet (actually at this point, I've simply restricted the gluten, not eliminated it completely 'cause it's pretty hard).  I see my GI doctor on Friday for the test results and he may be able to give me some pointers on how to eat gluten-free.  I get the feeling, though, that  he may not be one of those doctors that acknowledges gluten intolerance vs. celiac disease.  If my tests are negative, he may say it would be silly to eliminate gluten from diet.
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 5/22/2007 10:45 AM (GMT -7)   
I think it's far sillier to eat something that you know will make you sick. That seems like the best test-positive in the world to me. Thankfully, you have more sense than your doctor. :-)

I know getting gluten-free is hard. Health food stores are your best source for gluten-free products, but be prepared to pay $$$.

My husband is a diabetic and has to avoid a lot of carbs. He has found that spaghetti sauce on scrambled eggs makes a fairly decent substitute for regular pasta. I admit, I've eaten it too and it really is good. As he says, pasta is just a vehicle for the sauce, so most any bland vehicle will do in a pinch.

zeffer
New Member


Date Joined May 2007
Total Posts : 6
   Posted 5/26/2007 9:14 PM (GMT -7)   
I stayed off of gluten for a couple of months before being diagnosed to IBS. Those few months were some of the best months i have ever had. They werent completely stomache ache free but i was more comfortable. I totally agree with your decision to stay away from gluten. I know i am going to. ( I was tested for celiac but, the test came back negative) I hope you feel better off of it!!!!

2Hawaii
Regular Member


Date Joined May 2007
Total Posts : 82
   Posted 5/28/2007 4:52 PM (GMT -7)   
I too thought I might have celiac disease and I tried the gluten free diet, but was sadly disappointed. The longer I stayed on the diet, the worse I felt! I did a good bit of research and reading on the Internet and never saw another post by anyone who had my reaction to a gluten free diet. A friend of mine told me I might have had that reaction because I'm hypo or hyper glycemic. (I'm borderline diabetic) All I can say is that after a week of being on the diet, I couldn't hardly move off the couch I was so weak. I only began to recovered my strenght when I slowly started adding back rice and bread to my diet. So for someone with my problems, a gluten free diet can really make your life much more miserable! I've been homebound with IBS for 8 years and last month was diagnoed with GERD. For me, cream of wheat with honey takes away the GERD pain and seems to actually slow down the IBS, which for me, is an every day, all day, problem, 99% of the time.

stevenwbucey
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/8/2007 4:42 PM (GMT -7)   
I had the biopsy done in February of this year -- it was negative. However, the nutritionist, the GI Specialist that did the biopsy, and my (fairly new) regular doctor all concluded that I was gluten intolerant from the blood tests we had done and the obvious results after a month of being gluten free.

I came into it somewhat backwards as we discovered it while doing an Elimination Diet at the recommendation of the nutritionist. Actually, you can read my story here:

http://home.earthlink.net/~cratex/gluten_and_me.htm

"actually at this point, I've simply restricted the gluten, not eliminated it completely 'cause it's pretty hard"

It's hard at first, but once you get in the habit and find good sources for your food it's actually not to hard. The biggest problem is explaining to everybody why, for instance, you're suddenly not just stopping at a cafe to grab a sandwich or some such for lunch. However, from what I've read for it to be effective at first you really need to cut it all out as much as possible to give your body a chance to heal.

"If my tests are negative, he may say it would be silly to eliminate gluten from diet."

So? You're the one suffering, not him :)

"Health food stores are your best source for gluten-free products, but be prepared to pay $$$. "

Mainstream stores are starting to carry a better selection of products, though I do also do a lot of my grocery shopping on-line and every couple of weeks we make a trip to a specialty store about 40 miles away.

"I only began to recovered my strenght when I slowly started adding back rice and bread to my diet."

Rice, unprocessed rice, is gluten free. The only reason processed rice is not gluten free is because of cross contamination with wheat (rye, barley, spelt) processed on the same equipment. I don't pretend to know your whole story, but maybe you cut out to many carbs and were simply not getting enough to eat? Although I quickly lost 50 pounds because my excessive need to eat disappeared, it is quite easy to get fat while eating gluten free.

My "staples" are amaranth cereal or buckwheat for breakfast, along with quinoa, and starchy vegetables such as sweat potatoes, potatoes (occasionally), peas, and (as my system recovers) a little bit of corn or rice. Rice and corn are actually not all that nutricous but high in calories, while quinoa and amaranth are considered "super-foods" in some circles. Plain amaranth is tasteless to me, but mix it with some fruit and it is filling and I'm not all that interested in my food at 5:30am anyway. I also eat a fair amount of meat and all the fresh veggies I can (canned products are, in general, to be avoided).

But my wife makes a very tasty gluten free browny -- she loves to bake and turned her energy to using certified gluten free flour substitutes such as rice, potato, surghum and tapioca flour. I had to put my foot down otherwise I'd quickly gain back the 50 pounds I lost.

"I've been homebound with IBS for 8 years and last month was diagnoed with GERD."

I wasn't that bad, but I feel your pain. By last December before the doctor suggested the elimination diet I was fighting what several other doctors diagnosed as IBS ("I've Been Stumped") on a nearly daily basis. I wish you a lot of luck finding a resolution!

Steven

starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 6/8/2007 9:09 PM (GMT -7)   
Tapioca is gluten free? I would've thought it would be full of it or maybe the pudding is due to the fillers. This has been a good thread for me to read - I'm being tested for Celiac next week, so I've had to start eating "those things" again. Funny how when you start adding back the things you've eliminated, how bad you start to feel -- really fast!
"My "Trifecta" - CD, AS & RA...

Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 6/9/2007 12:13 PM (GMT -7)   
Hey starrnr,
Sorry you have to deal with eating gluten free... it can be so difficult and tedious reading labels, not to mention expensive. What test will you be doing for Celiac's? Will you be getting an EGD or will they test via blood? Please note that if your test comes back negative it doesn't mean you can't have alergy to gluten. The best way to test is to see how you feel when eliminating it completely.
Good luck!
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stevenwbucey
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/9/2007 2:32 PM (GMT -7)   
"Tapioca is gluten free? I would've thought it would be full of it or maybe the pudding is due to the fillers."

Yep. It's the fillers in the pudding.

"I'm being tested for Celiac next week, so I've had to start eating "those things" again."

You must be having the blood test for the genetic marker then. Sorry.

"Funny how when you start adding back the things you've eliminated, how bad you start to feel -- really fast!"

Yeah. As a "test" before I had the test I ate a cup of my favorite cereal for breakfast. Around 5pm later that day I was wishing I really had not done that.

Here are a couple of really good web site resources, though I recommend a trip to the library or bookstore to get a couple of good references also:

Start here at the National Institute of Health's web site:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

It is aimed at celiac's, but a celiac is gluten intolerant so the "cure" (if you can call it that) is the same -- avoid gluten.

Also, this is a good general description:

http://digestive-disorders.health-cares.net/gluten.php

The key points are:

"Gluten is an amorphous ergastic protein found combined with starch in the endosperm of most cereals. It constitutes about 80% of the proteins contained in wheat and is composed of the proteins gliadine and glutenine. Gluten is responsible for the elasticity of kneaded dough which allows it to be leavened, as well as the "chewiness" of baked products like bagels."

The key point is that the US food industry uses wheat or related grains as fillers or flavorings in much of what we eat, and even things that would not normally be a problem (such as rice) are cross contaminated because they are processed on the same equipment. So, a plain bag of uncooked brown rice is fine, but Uncle Ben's has to be avoided. In fact, because food labeling is so much an issue in this country the label on products is not always complete.

From personal experience (and the advise of some doctors), if you are gluten intolerant you must follow a strict diet for several months at least. After that, you might be able to tolerate trace amounts. But this varies from person to person. In her book "The Gluten Free Bible" the author talks about a doctor's frustration with a patient that was clearly a full Celiac who was not responding to a gluten free diet, until eventually he got her to admit that she was taking communion at church once a week and that small wafer was enough to keep her intestines from healing.

Steven
------------------------------------
Going against the Grain in 2007


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 6/10/2007 11:30 AM (GMT -7)   
Steven, thank you for the resources. I'm having the Prometheus Series done. While I don't believe I may have Celiac, I do believe I have sensitivites or intolerances to alot of the foods that a celiac would have problems with. I've always had that. If it does come back positive, I believe I will have the biopsy to make sure. Oh joy!

I was diagnosed with Crohn's last year -- I've always fought that diagnosis since it just didn't make sense. I have more in common with the symptoms of Celiac than Crohn's although I have noticed in my research that some of the symptoms are similar. We (GI and I) are now pretty much convinced I do not have Crohn's (yeah!) and when I mentioned major issues with certain foods, my GI immediately ordered the Prometheus tests. So, we'll see. Either way, I intend to go back to the way I was eating as I felt way better than I do right now! Blech!

Thanks again, you guys are great!
"My "Trifecta" - CD, AS & RA...

Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


7Lil
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Date Joined Apr 2005
Total Posts : 3269
   Posted 6/10/2007 12:14 PM (GMT -7)   
Hi starrnr,
I had the Prometheus series as well... Celiac's, Lactose, and IBD. I hear it's a great lab and one of the best for accurate results (via blood). Hopefully you'll get some good news that you don't have IBD, and that maybe it's an allergy to gluten.
Good luck and please keep us posted.
Co-Moderator for the IBS Forum
 
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starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 6/10/2007 12:29 PM (GMT -7)   
Lil -- I had the Prometheus First Step for IBD last year. Came back absolutely negative for both CD & UC - although I understand it's not uncommon to have a negative 1st step. My diagnosis basically came down to my small bowel follow-thru that apparently showed strictures. I recently had a very advanced CT Enterography scan - no evidence of crohn's was present, including the strictures! We think my high usage of ibuprofen (at prescribed levels for my AS/RA) may have cause the ulcers that were present. Biopsies were negative as well. If the Celiac tests come back negative, I get one last c-scope just to make sure. Not that I want the Celiac test to be positive, but I'd rather not have the c-scope! Ah the joys of funky intestines!!! I'll let you know how things go...
"My "Trifecta" - CD, AS & RA...

Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


stevenwbucey
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/10/2007 5:09 PM (GMT -7)   
"If it does come back positive, I believe I will have the biopsy to make sure. Oh joy!"

It's not that bad. You MUST have somebody with you that can drive you home; for me that was my wife. They put an IV in my arm and wheeled me into the room. The GI talked over my blood work while the assistant put some juice in my arm that puts you in a very relaxed state but not completely under, and the whole thing takes maybe half an hour. I kid you not, literally the next thing I knew my wife and I were over at the mall an hour later and I was eating a banana. Apparently after the procedure was done I had a lively conversation with the GI as he talked to my wife about post-op do's and don'ts, and then when we got in the car I asked to go over to the mall to walk around and bought a banana at one of the snack bars there.
------------------------------------
Going against the Grain in 2007

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