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nineof9

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

Should I Go To A New Gi?

18 May 2013 - 03:03 PM

I posted a little while ago regarding my lab values for celiac disease and recently got an endoscopy.

Here is a quick run-down:

 

History:

- mid twenties male, went for testing due to a low HgB while trying to give blood (14.2, which is not very low, but low for someone my age and level of health... I'm an avid runner). 

- Celiac Panel--> Gliadin IGG Antibodies:  22 Ref. > 20 so its considered a weak positive (EMA and IGA negative).  Total Serum IGA was 80, reference was 70-400 (this still puzzles me).

- Other labs normal, Fe, and Folic Acid and B12 normal

- Hematocrit was low, 38.7 (reference 39.3-52.5)

Key take aways... there is definitely something going on with my HgB and Hematocrit

- Went gluten-free for about 2 months based off of the + IGG result and FELT AMAZING.  However, missing beer and the convenience of food I wanted more information so I went back on gluten for the EGD.

- EGD Prelim Results:  Moderate Esophagitis, a few superficial ulcers were found in the pre-pyloric region of the stomach, Erosions of mucosa noted in the antrum of the stomach.  Duodenum--> reddening and flattening of the mocosa was noted in the 2nd, 3rd, and 4rth parts of the duodenum, as well as having erosions of the mucosa in the duodenal bulb. 

- Also worthy to note, I have a strong familial history of celiac.  My eldest sister, first cousin, and uncle (all blood relatives) have been diagnosed with celiac disease.

 

My dilemma is currently that when I went for the follow up, I was told by my GI that I did not have celiac disease and that the pathology reports confirm this.  I understand that the pathology is the golden standard and was kind of shocked because of all the problems that were found in the endoscopy.  I understand that having ulcers and high acid production can cause some changes, but to the best of my knowledge there should NOT be damage to the furthest parts of my duodenum (maybe just the duodenal bulb).  My GI basically brushed it off and put me on PPIs to treat the ulcers.  He rushed through the consult and did not want to really address the changes to my duodenum that I feel are still a concern.  He was very expressive in stating that I did not have celiac, but when I protested about the changes to my duodenum (which are not normal) he just said not to change my diet and to take the pills for the ulcers.

 

Since I have been back on gluten, I have had constant headaches, diarrhea, nausea, constant bloating, fatigue, and my anxiety has come back. I don't want to be one of those people that has to suffer more through this but, at this point it is REALLY nagging me!!!  I also cannot take the stomach pains and diarrhea/ crappy fatigue feeling anymore.  I hate to sound like the person who is seeking a diagnosis when there is none, but i feel as though there is major convincing evidence that he is refusing to take into account due to the pathology report (which he could have taken bad samples to begin with).

 

Thank you for all of the advice or help that you may be able to give me.  I truly appreciate it!!!


Confused.... A Little Frustrated

04 January 2013 - 03:27 PM

I could use some input from people who have some experience. I recently got tests back that were a little bit more frustrating than I thought. I tested mildly positive a week ago on the celiac panel for Gliadin Igg Transglutaminase with a result of 22 (Ref. is <20) and negative for both EMA and Ttg Iga. Other notable findings:
Triglycerides: 150 (high) (ref. <150)
HCT: 38.7 (low) (ref. 39.2-52.5)

My doctor emailed me back and said that she was suspicious and was willing to go forward with a GI consult and endoscopy. She ordered more tests, and I requested a total serum Iga since it was not part of the panel with these results:
Iron: 99 (Ref. 45-150)
IgA Serum: 88 (Ref. 70-300) seems on the lower end to me... but is "normal"
Folic Acid: 16.33 (Ref. > 5.38)
Vit B12: 427 (Ref. 211-911)

Clearly from these labs I am not malnourished and am sitting here scratching my head. I thought I was IgA deficient since when I was a kid I had chronic sinus infections that led to the removal of my tonsils and adenoids. However, my IgA levels are "normal" even though they are on the lower side. Other than the symptoms that I have, I am a healthy mid-twenties male.

Another very interesting thing to note is that my sister and my first cousin both have celiac disease as well as my uncle who is blood related. There are a lot of thyroid issues in my family as well. My symptoms are foggy headedness, intense anxiety at times, slight anemia. I have a feeling that I may not have celiac based off of these test results. My doctor said she was willing to move forward with a GI and endoscopy but I was hoping for something more substantial to hold on to before that.

The problem lies in the fact that I have a MAJOR exam coming up at the end of the month for which I constantly get anxiety. I want to go gluten free before this to see if it helps with my concentration (I can read a page and sometimes forget what I read, which is eternally frustrating.) My plan is to go gluten free from now until the test and then go back on gluten for a few months for an endoscopy (I know this is crazy but my future pretty much rests on this and I cannot mess it up).

Any advice would be greatly appreciated. Thanks in advance and God Bless.