Celiac (Sprue) Disease Community
celiac blood test negative, but have symptoms
About This Community:

This patient support community is for discussions relating to Celiac (Sprue) disease, anemia, behavioral changes and neurological issues, dental issues, diet and nutrition, infertility, gastrointestinal issues, gluten-free recipes, growth issues, infants and children with Celiac, pain management, and skin and dermatology issues.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

celiac blood test negative, but have symptoms

Blood test came back normal, but have lower abdominal pain at times, and lots of gurlgling and gas.  Have also noticed weakness in arms at times, which usually coincides with feeling of anxiety.  Sometimes feel lightheaded.  I have read on this forum that I could still be glucose intolerant, and I'm wondering if I could still get intestinal damage if I don't have celiac disease, just intolerance.  Also wondering how long it takes to go w/o gluten before a change in symptoms.  I suppose it depends on the person.  Another question: I'm having a colonoscopy tomorrow, and wonder if celiac would show up on biopsy, or if it has to be a endoscopy?  Thanks!
Related Discussions
11 Comments Post a Comment
Blank
Avatar_n_tn
Just because the blood test is negative does NOT mean that you do not have Celiac's or are gluten intolerant. It is not very reliable. I do not know if it would show up on a colonoscopy, in fact I have my doubts because the disease shows up in the small intestine, not the large intestine. The test for that is an upper endoscopy. I believe that it can still damage the intestine because it cause inflammation in the long run and chronic inflammation is bad. I personally had to go with how I felt off gluten, and the difference is night and day.

I hope this helps,
achilles2
Blank
Avatar_f_tn
Thanks!  Since my Dr. doesn't seem willing to do an endoscopy to find out, I will try going off gluten for a while.  I believe the people on the forum who are actually living it.  It's too bad it's hard to get a straight answer.  So much I have read has been conflicting, as well as the medical community.  
Blank
Avatar_n_tn
Can you have an endoscopy and colonoscopy done at the same time? After all they use the same anesthesia for both procedures. If you have to can you find another doc and get a second opinion?
Blank
Avatar_n_tn
I just saw you are in MN can you just to the Mayo clinic? You can fill out the forms on line (or call) and do not need a referral, or you just show up and try to get admitted. (If you do that get there early there is a long line.
Blank
Avatar_f_tn
Wish he would have done both at the same time.  Why not?  My friend's Dr. did.  My Doc says it's probably IBS, but I don't  know...haven't tried gluten free yet, but will next week.  
Blank
Avatar_f_tn
I was told it was IBS for over 15 yrs before I saw a smart GI dr that scoped me. To just go off gluten is a highly difficult thing to do. Reading lables is great, but it seems most contamination comes from eatting out and in the house with others sharing your butter, mayo, jellies, things that one wouldn't think twice about. It took me 6 months to figure a lot of thing out. Especially so many things that shouldn't have gluten like candies or chips, most often oats. Good luck!
Blank
209987_tn?1334790318
I was told 18 years ago that I have IBS...the blood work for Celiac came back as being 0.5 away from having it...whatever that's supposed to mean. So the doctor said it was IBS.
I cannot eat anything with flour, potatoes, etc without getting horrible stomach cramps, bloating, gas and diarrhea. Any change in my diet causes nasty stomach upset...feeling like I'm in labor.
I have read the symptoms for both IBS and Celiac disease and I show more of the symptoms for Celiac. Is it possible that the doctor was wrong in his assumption?
They had done a barium enema when I was 28 and all they said was that I had a quivering bowel...after spending the entire night on the toilet after drinking that nasty stuff that was supposed to flush me out...who's bowels wouldn't quiver?  The spasms had me feeling like I was in labor for 3 days straight...it was awful. No further testing was done, and the doctor gave me pills for excess gas...back then they were only available as a prescription, but now you can find them everywhere...ovol 80.
These helped to a degree...until I ate again.

Think I might ask him to check again, now that I have read these posts.
Blank
Avatar_n_tn
Sounds like Celiac also I was wondering if you might have endometriosis. If you have painful periods THIS IS NOT NORMAL. At least 80% of women with endo also have some sort of gluten intolerance. If you suspect endo do not go to a gen ob/gyn as they do not know enough. You need to find an endo specialist. You can do this by contacting the endo association
http://www.endometriosisassn.org/
and they will give a name or names of specialist near you.
I hope this helps,
achilles2
Blank
1340994_tn?1374197577
If he's doing a lower endoscopy (colonoscopy), then for your symptoms, he should also be doing upper endoscopy.  I suppose you might have colitis, which would show up on the colonoscopy, but you need upper endoscopy for Celiac disease.  However, there are certainly other problems beside Celiac or colitis that could be causing your symptoms.  
Blank
Avatar_f_tn
Thanks for feedback, everyone.  Fortunately, colonoscopy showed no problems, and after that my symptoms - gone!  I think the cleanse is a good thing.  However, since Doc. says probably IBS, I know it could come back.  IBS will not kill you, though.  Yes, he should have done endoscopy, too, and not dismissed Celiac because of neg. blood test.  Now I am thinking probably not Celiac after all.                                                                        
Blank
Avatar_f_tn
The day after I wrote this last entry I was sitting in the lobby of my childrens' clinic and opened up a magazine, and there was a small article on the page I turned to that said research has shown no health benefit to doing a colon cleanse, and that it may do more harm than good.  That being said, a friend of mine who did one before her colonoscopy also had her symptoms clear up (her Doc said she was having diarrhea from a bacterial infection).  I just didn't want to give anyone bad info.  

*sorry, I don't remember which magazine it was!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Celiac (Sprue) Disease Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Digestive Answerers
Avatar_f_tn
Blank
CalGal
CA
1340994_tn?1374197577
Blank
Caryopteris
Raleigh, NC
168348_tn?1379360675
Blank
ChitChatNine