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nineof9

Member Since 29 Dec 2012
Offline Last Active Jun 15 2013 10:24 AM
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Posts I've Made

In Topic: Should I Go To A New Gi?

11 June 2013 - 10:21 AM

Ok, so I got more labs done, this time they were TTG IGG and IGA, which were both negative.  I guess I don't have celiac but most likely have a very strong gluten sensitivity.  However, I am very concerned because I am anemic... and have been chronically anemic with my Hematocrit being low since January.  In January, my HCT was 27.9 and just recently it was 39.3, with a reference of 42-54.  My new GI is probably going to do a colonoscopy because I have had rectal bleeding for probably 2 years.  I thought it was just hemorrhoids but I am now very fatigued, constantly getting headaches, and my GI system is in complete turmoil every time I eat something.  There have been times when I pass stool and the toilet is completely red (I always thought it was just a hemorroid) but I constantly have blood when I wipe and thought it was something not too serious (sorry to be so frank).

 

Clearly there is something going on with my HGB/HCT since this is what started the whole problem in the first place.  Everything else is normal but my HGB was low for a mid 20s male and my HCT is also clearly low.  Has anyone else had this???  I am starting to get concerned it may be something a little more serious and I just don't know what is going on with my body :(


In Topic: Should I Go To A New Gi?

31 May 2013 - 07:02 AM

So recent labs came back. My IGG was HIGHER this time than it was the last time.  I had a level of 25 compared to 22 a few months ago and I was eating more gluten this time because of the endoscopy..... what is going on?????  IGA and EMA negative but I believe my IGA is low to begin with.  I am certainly going to go to a new GI and hopefully will be able to figure this all out.

 

What are your thoughts???  Clearly I am having an immune reaction to gluten.


In Topic: Should I Go To A New Gi?

23 May 2013 - 02:26 PM

Just an update.  I went for a check up today with my current GI and I am more convinced then ever that he does not really know what he is doing.  I luckily got a prescription for another celiac panel, and am worried that since they did not write for the Diaminated Gliadin blood test that they will not run this.  I guess when I go to give blood I will just ask that they run that too since every lab runs the tests differently.

 

My GI informed me that he would give me the script for the blood test just to appease my concerns but restated that he thinks that my biopsy report was so unremarkable that the likelihood of me being positive is minimal.  I also got more information from him regarding the samples and found out that he only took 2 samples from the 3rd part of the duodenum.  The reasoning behind this was that "celiac disease manifests distally in the small bowel."  Her further told me how he had a fellow who took 6 samples throughout the duodenum from a patient and that he found that this was very invasive and most likely did not reveal more about whether celiac disease was actually present.  Given my current knowledge and understanding of celiac at the moment, I understand that there has been CONVINCING evidence that celiac does not present itself in the typical distal parts of the small bowel and that it has been found more and more to be in the more proximal parts of the small intestine. 

 

Clearly my current GI is not very learned with regard to diagnosing and treating celiac and he basically told me that all of the problems that I have been encountering are all due to the stomach ulcers.  He stated that I keep fixating on celiac when the "proof and evidence all points to the stomach ulcers."  I kind of felt like an idiot and he definitely did not make me feel more convinced in his abilities to treat me making me feel like a paranoid person.  He refused to look at the "big picture" and stated that the mucosal flattening and reddening were only initial clinical impressions during the endoscopy and were not "final."  Basically, he was saying that those were just his impressions and they don't mean anything.... but honestly someone who has been in practice for 20+ years SHOULD know what they are looking at and I am sure that these are adjectives that are not used for everyone.

 

I will keep everyone posted with my latest celiac panel in hopes that they will reveal more information.  Do I request the DGP IGG and IGA or should I assume that they will be done.  Thanks in advance for all of your help.


In Topic: Should I Go To A New Gi?

21 May 2013 - 12:19 PM

Thank you all for the advice.  I guess I am going to request a DGP blood test since I called the lab and was informed that they do indeed run that test but most likely it was not the DGP version.  If I am positive for DGP then I have my answer, but I am worried that being off gluten for about 2 months would really mess up the results.  I have been back on gluten for 3 months so I hope that I have done enough damage to indicate that there is a problem (my senses feel as though it will be considering the preliminary report from the endoscopy and the flattening and reddening of the 2, 3, and 4th part of my duodenum).  I never thought I would have to fight this hard and care to know the answer, but I will not be at ease without it. 


In Topic: Should I Go To A New Gi?

20 May 2013 - 01:27 PM

Sorry for posting 500 times in a row, but I was wondering if anyone can offer any advice as to why only 1 sample was sent for pathology screening.  I read the official report and despite my preliminary report stating that I had mucosal reddening and flattening of the 2, 3, and 4th parts of my duodenum as well as mucosal erosions in the duodenal bulb why only the 3rd part of the duodenum was send.  The report states that the pathologist received one tube labeled "third part of the duodenum" and another that stated "antrum of stomach." 

 

My major question is why on earth did they take samples from all parts of my duodenum and only send 1????  This is really frustrating me because at the moment I feel as though the GI I went to really messed up and now I need to have another biopsy done.  I have done research and know that for some celiacs there may not be major changes in the more distal parts of the duodenum and that the duodenal bulb and 2nd part may be the only areas in which the disease appears. 

 

If anyone can share similar stories of their procedures and whether or not this is a common way for GI's to test for celiac I would be very appreciative.  IMHO, if samples throughout my duodenum were taken, why not send THEM ALL, especially knowing that celiac appears in patches throughout the small intestine.