Anyone Have False Negatives on Testing Prior to Diagnosis?

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dancemusic
Regular Member


Date Joined Oct 2012
Total Posts : 21
   Posted 12/9/2014 3:59 PM (GMT -7)   
Hello, I'm just wondering if anyone knows about the likelihood of false negatives on either blood testing or intestinal biopsy? I have had an array of changing GI symptoms over the years (gas, bloating, pain, diarrhea, constipation, acid reflux, nausea) as well as fatigue, joint pain, brain fog, depression, anxiety etc. I have been diagnosed with GERD, IBS, Fibromyalgia and Hashimoto's Disease which can certainly account for these symptoms, but I know that Celiac and Hashimoto's often go hand in hand, and I am positive for the Celiac Disease Gene. Also, I had severe unexplained Iron Deficiency Anemia (corrected with an IV iron infusion). I had a negative intestinal biopsy several years ago, and have had at least 3 or 4 negatives on the Celiac blood test. I have had differing opinions from doctors but have been told that I could be getting false negatives on testing from 1 or 2. Eating gluten does not make a difference in my symptoms (that I note). Has anyone else encountered this? I very well may not have Celiac but am just curious if anyone else got false negatives before getting a diagnosis. Thank you!
Hashimoto's Disease, Fibromyalgia, GERD, IBS, Vestibular Migraines, Chronic Allergies, Inappropriate Sinus Tachycardia, Generalized Anxiety Disorder & OCD.

Meds: Zegerid, Xanax, Claritin, Zofran PRN & Carafate PRN.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 12/10/2014 7:42 AM (GMT -7)   
How long have you tried to be GF? You mention intestinal biopsies - were those upper GI, lower GI or both?
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!

dancemusic
Regular Member


Date Joined Oct 2012
Total Posts : 21
   Posted 12/17/2014 4:06 PM (GMT -7)   
Kazbern - I've tried going gluten free twice for about 2-3 months each time and am currently trying again. The only thing I'm not positive of is if any of the medications I take now or took then have trace gluten or gluten contamination. I stopped each time because I felt the same and there was no concrete evidence of celiac. I should say even when I have not been GF, I've been on a low gluten diet for about 4 1/2 years (which I know means nothing if I do indeed have celiac). The interesting thing is there were a few periods during this time where I ate much more gluten than normal for a couple weeks, but I had no direct change in symptoms from that.

My biopsy was a duodenal biopsy for celiac during an upper endoscopy. The biopsy was 4 years ago and I wonder if it is possible that that area of the intestine was not yet damaged? Doctors seem to be undecided on the possibility of something like this.

Thanks for the response!
Hashimoto's Disease, Fibromyalgia, GERD, IBS, Vestibular Migraines, Chronic Allergies, Inappropriate Sinus Tachycardia, Generalized Anxiety Disorder & OCD.

Meds: Zegerid, Xanax, Claritin, Zofran PRN & Carafate PRN.

Post Edited (dancemusic) : 12/17/2014 4:09:32 PM (GMT-7)


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 12/19/2014 10:39 AM (GMT -7)   
Based on what you've written, I don't know why you think you have celiac disease. You see no changes from a GF diet and your biopsy was negative. So why continue to pursue this line of thinking?

Have you had a colonoscopy? I see you have "IBS" in your signature. What was done to reach that diagnosis?
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!

dancemusic
Regular Member


Date Joined Oct 2012
Total Posts : 21
   Posted 12/21/2014 10:36 PM (GMT -7)   
I have not had a colonoscopy. My diagnosis of IBS was pretty much based on my fitting the Rome diagnostic criteria perfectly. My GI doctor did consider doing a colonoscopy a few years ago when I had a period of uncontrollable diarrhea, but my lower GI symptoms have vastly improved since so nobody seems to think I need one at the moment.

I don't necessarily think I have celiac, but I have had several doctors over the years (I have seen several different GI Drs for a few different reasons) question my original biopsy results based on my symptoms - upper & lower GI symptoms, chronic fatigue, migraines, joint pain and particularly my severe iron deficiency. When I was diagnosed with Hashimoto's a month ago I wondered again because of the high comorbidity of Hashimoto's and Celiac. The only way to check though is to have another endoscopic biopsy, and I've gone through enough medical testing lately so would like to avoid that unless absolutely necessary. I was just curious if anyone had ever had a false negative biopsy for that reason.
Hashimoto's Disease, Fibromyalgia, GERD, IBS, Vestibular Migraines, Chronic Allergies, Inappropriate Sinus Tachycardia, Generalized Anxiety Disorder & OCD.

Meds: Zegerid, Xanax, Claritin, Zofran PRN & Carafate PRN.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 12/22/2014 9:41 AM (GMT -7)   
Given your digestive issues and chronic anemia, it seems that a colonscopy or small bowel follow-through would be a reasonable next step.

I had negative results for celiac on biopsy and blood work, but I have seen significant improvement in my quality of life from being GF. Bowel issues and joint pain and brain fog are eliminated or reduced on this diet. I have a diagnosed inflammatory bowel disease and adopting a GF diet was the last change I made after many years of medication got me almost all the way better but not quite. I stopped having chronic anemia at the same time as I experienced all the other improvements from the GF diet, too.
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!

littlemama33
Regular Member


Date Joined Oct 2011
Total Posts : 54
   Posted 1/13/2015 11:48 AM (GMT -7)   
I was on GF diet after being positive for celiac for 6 months. I saw no difference in my CFS. But When I ate some gluten after 6 months..I got a headache an small stomachache. Then slipped on my GF diet a year later and got
very ill for 3 days n then it happened one more time n I got even sicker!! I have heard of many people having false tests!!
Sherry

fibro, chronic fatigue, rls, ibs, depression, insomnia, and celiac.
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