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Doctor Said It Is Not Celiac, Likely Ibs


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16 replies to this topic

#1 BuckeyeGirl

 
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Posted 30 June 2012 - 04:57 AM

I finally had my follow-up appointment with my doctor and she said it is not likely celiac disease. Here are the test results:

Tissue Transglut IgG <10 Negative (Reference <20 negative)
Tissue Transglut IgA <10 Negative (Reference <20 negative)
Gliadin Ab, IgA <10 Negative (Reference <20 negative)

They also tested my stool for various parasites, infection, etc. and it was negative for all, as well as negative for elevated fecal lactoferrin, which the doctor said indicates there is no sign of inflammation or celiac going on.

My diarrhea and other symptoms are on-going (please see this post for more details: http://www.celiac.co...ery-frustrated/ ). After my bloodwork last week, I went gluten free. I had one day of no diarrhea earlier this week and since then, I've had an increase in the diarrhea. My doctor said it is likely irritable bowel syndrome and blew me off on all my other symptoms that I brought up. I'm really starting to feel depressed about it all.

Could anyone with more experience give me some input into the test results? Did they order the right labs?
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#2 KMMO320

 
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Posted 30 June 2012 - 06:37 AM

I dont have answers because im in the same boat. Chronic D, headaches, muscle aches, fatigue, sinus.infecions...and all tests negative and they tell.me its Ulcers and IBS. I am not content with that. My GI even insists that Im not even gluten intolerant...yet when I went gluten-free for 3.weeks, I felt good.
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#3 Kamma

 
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Posted 30 June 2012 - 10:15 AM

Hi, BuckeyeGirl...

Aside from the fact that some celiacs test negative, you might have non celiac gluten intolerance in which case the celiacs testing won't catch it.

Keep going on the gluten free eating and see if your issues subside substantially within the next few weeks. It takes a while to heal and for your body to slowly get healthy so you might have to be patient with yourself.

Also, you might want to find out what your total IgA is as some people are deficient in it and it will show as a false low or negative on the ttg IgA test.
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#4 tom

 
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Posted 30 June 2012 - 03:20 PM

...
My doctor said it is likely irritable bowel syndrome and blew me off on all my other symptoms that I brought up.
...

Argh! I hate that Drs can think that saying IBS ends the conversation. :angry:

IBS is a symptom, not a diagnosis.
I Be Stumped is all they're saying.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#5 1974girl

 
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Posted 30 June 2012 - 05:07 PM

My family doctor recommends a gluten free diet for IBS anyway. My family has "IBS" everywhere and some of us have tested negative for celiac. So I don't know what is going on. My great-great-grandfather was sent home from the Civil War because his diarreah was contaminating the camp!
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#6 Skylark

 
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Posted 01 July 2012 - 07:02 AM

Your doctor ordered the right tests. You can have diarrhea from gluten intolerance though. It's worth staying gluten-free for a few more weeks to see if things improve.

If not, have a look at the Specific Carbohydrate Diet http://breakingtheviciouscycle.info or if you suspect dairy sensitivity the GAPS diet http://gapsdiet.com.

Another thing to consider that gave my mom chronic GI trouble and "IBS" is fructose malabsorption. You would test for that by eating a low FODMAP diet for a few weeks.
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#7 BuckeyeGirl

 
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Posted 01 July 2012 - 05:19 PM

Thank you for your feedback. I had a particularly bad day yesterday after eating out at Olive Garden (and I did order off the gluten free menu,so I don't know what the deal is). However, I looked into the GAPS diet and I started today with a modified version using the homemade chicken broth. I'm not following the intro version exactly, because I am adding in a few other non-grain foods (mostly fruits, vegetables, and a few nuts). But I am already feeling better! I know it's too soon to tell for sure, but I've only had one episode of diarrhea today, so it's promising.
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#8 Skylark

 
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Posted 01 July 2012 - 11:26 PM

Glad to hear you had a good day! The GAPS book is well worth buying if you start to find the diet helpful. It explains why the diet works and all the details of how to really heal your gut.
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#9 Green Eyes

 
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Posted 02 July 2012 - 07:13 AM

Although I have tested positive for celiac I have continued searching why I have been the only family member affected. I have two 2nd cousins which are on a gluten free diet because of celiac symptoms and have been successful. What I have found is "IgA Deficiency." If you are deficient in this antibody this can alter your celiac test results. Certainly something to check in to. My recommendation: if you have a doctor that is not searching for answers keep looking for a doctor who will. Took me a while to find a doctor but has been worth the search!!!
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Jennifer

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8/1/08 - Positive Celiac results from blood work
Gluten Free since 8/1/08
8/12/09 - Celiac Test Results - "Normal"

#10 BuckeyeGirl

 
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Posted 03 July 2012 - 10:12 AM

Although I have tested positive for celiac I have continued searching why I have been the only family member affected. I have two 2nd cousins which are on a gluten free diet because of celiac symptoms and have been successful. What I have found is "IgA Deficiency." If you are deficient in this antibody this can alter your celiac test results. Certainly something to check in to. My recommendation: if you have a doctor that is not searching for answers keep looking for a doctor who will. Took me a while to find a doctor but has been worth the search!!!


I completely agree with your comments regarding finding a doctor who is interested in helping to find the root cause of symptoms. This whole situation has completely turned me off to my family doctor. I already decided that it's time for me to find someone who is willing to really LISTEN to me and my concerns.

I also want to update everyone on my situation. After one good day on Sunday, I had a horrible day yesterday. The diarrhea was just SO bad and I can't understand why because I'm barely eating anything besides the chicken broth. After numerous episodes in the bathroom, at work no less, I had a major "freak-out" moment when I noticed some blood on the tissue paper. I went to the ER and they helped to schedule a colonoscopy, which took place this morning. The only visual abnormality noted was a polyp, which they are sending to pathology for confirmation. They seemed a bit surprised because I have no family history and I'm only 27-years-old. If nothing else, these symptoms have been a blessing in disguise because I'm quite sure I never would have had a colonoscopy until age 50 otherwise. The GI doc took several biopsies and is screening for numerous conditions- Celiac, Chron's, and several types of colitis. I don't know how accurate the Celiac biopsy will be because I have been gluten free for about 10 days now. Is that enough time to show a negative biopsy IF you truly do have Celiac?

Regardless of the outcome, I've decided that I'm going to continue trying the gluten free diet. I have too many other symptoms that could point to gluten sensitivity. I've noticed that I haven't had a single migraine or headache since going gluten free (even after a crying episode yesterday, which is usually a major trigger). I also feel "clearer" somehow and more alert. I've been having very vivid dreams every single night since going gluten free. Is this a common ocurrence? I used to never remember any of my dreams.

I will keep you updated on the test results!
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#11 kareng

 
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Posted 03 July 2012 - 10:32 AM

Sorry to tell you that a colonoscopy cannot diagnose Celiac. Did they do an endoscopy at the same time? A colonoscopy goes thru the end of the digestive tract and sees that last part. The endo goes thru the mouth and looks at the top portion ( sm intestine). celiac is found in the small intestine.
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#12 Skylark

 
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Posted 03 July 2012 - 10:43 AM

Don't freak out. Bright red blood on tissue paper is usually a small anal tear, probably irritation from all the diarrhea. Didn't they tell you that? Try a little diaper rash cream like Desitin to soothe your skin. Dark red or black clotted blood in your stool (can look like tar or coffee grounds) is the really bad kind because it comes from further up your colon or intestines.

Yes, I was much more alert off gluten. I didn't notice differences in dreams, but I did start sleeping a lot better.

If you had an endoscopy and celiac biopsies as well a the colonoscopy, they would see damage after only 10 days gluten-free. If not, you need to go back on gluten until you can get the endoscopy.
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#13 BuckeyeGirl

 
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Posted 03 July 2012 - 01:06 PM

This forum is certainly a great source of information. They definitely didn't mention that they cannot test for Celiac through a colonoscopy and that is all I had done- not the endoscopy. In fact, the doctor explicitly said that she was testing for Celiac. This is so frustrating! Now, I'm wondering if she meant the blood test again. I had the blood testing done by my primary care physician a few weeks ago. She is in the same health system as the GI doc, but maybe the GI doc missed the fact that I already had it done. I am a little upset about this now...why wouldn't the GI doc just have done the endoscopy while I was already out for the colonoscopy?
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#14 kareng

 
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Posted 03 July 2012 - 01:56 PM

. I am a little upset about this now...why wouldn't the GI doc just have done the endoscopy while I was already out for the colonoscopy?


I think that is an excellant question for the doctor.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#15 GFinDC

 
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Posted 03 July 2012 - 07:22 PM

Yep, it's a real good question for the GI. You don't have to have an endoscopy if you don't want. You can just go gluten-free and stay that way. The diet doesn't require a celiac diagnosis. And there is no treatment for celiac right now except the gluten-free diet anyway. Even if your testing came back negative, you should try the gluten-free diet for several months. The testing isn't perfect and false negatives do happen. Even on the endoscopy.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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