Doctor Said It Is Not Celiac, Likely Ibs
Posted 30 June 2012 - 04:57 AM
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?
Posted 30 June 2012 - 06:37 AM
Posted 30 June 2012 - 10:15 AM
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.
Posted 30 June 2012 - 03:20 PM
Argh! I hate that Drs can think that saying IBS ends the conversation.
My doctor said it is likely irritable bowel syndrome and blew me off on all my other symptoms that I brought up.
IBS is a symptom, not a diagnosis.
I Be Stumped is all they're saying.
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
Posted 30 June 2012 - 05:07 PM
Posted 01 July 2012 - 07:02 AM
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.
Posted 01 July 2012 - 05:19 PM
Posted 01 July 2012 - 11:26 PM
Posted 02 July 2012 - 07:13 AM
7/17/08 - Positive Celiac diagnosis with biopsy
8/1/08 - Positive Celiac results from blood work
Gluten Free since 8/1/08
8/12/09 - Celiac Test Results - "Normal"
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!
Posted 03 July 2012 - 10:32 AM
Posted 03 July 2012 - 10:43 AM
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.
Posted 03 July 2012 - 01:06 PM
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.
Posted 03 July 2012 - 07:22 PM
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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