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Should I Go To A New Gi?


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#1 nineof9

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Posted 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!!!


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#2 stanleymonkey

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Posted 18 May 2013 - 03:18 PM

You said weak positive IGG? Positive is positive weak or not, it's like saying a lady is weakly pregnant.
How long we're you back on gluten, our daughters GI Sadi for an accurate scope 3 months minimum, consuming the equivalent of at least 4 slices of bread a day
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#3 GottaSki

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Posted 18 May 2013 - 03:28 PM

I would go to a GI that specializes in celiac disease.

 

Your endoscopy sounds like damage from celiac disease...do you have the pathology report along with the procedural report?

 

The most telling piece of information is your improvement gluten-free.

 

Also of interest is a Total IgA is low...just not out of range which could mean the IgA blood work is of no use.  Have you had a tTG-IgG? or and AGA-IgG -- I do see you have a positive DGP-IgG.

 

Here is a simple explanation of the Marsh Scale for Celiac Disease...note Stage 1 and 2 are not specific to celiac disease...yet damage plus positive DGP-IgG plus familial history plus dietary response seems like Celiac to me:

 

Here is a basic explanation of the Marsh Scale used to type Celiac Disease.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal. 

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:
3A--Partial villous atrophy
3B--Subtotal villous atrophy
3C--Total villous atrophy

Stage 4, the villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.

 

PS...there are many gluten-free beers available.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 cyclinglady

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Posted 18 May 2013 - 03:59 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!!!

 

My iron levels were okay, but my Ferritin levels (iron stores) were low.  Did they test your Ferritin levels?  That would show malabsorption and help support a Celiac diagnosis.  Don't forget you are a runner and could have "heel strike anemia" as well.  Finally, the ulcers you described could be bleeding and contributing to your anemia.

 

Low hemoglobin and low hematocrit can be indications of Thalassemia, a genetic anemia (you usually have low MCV, MCHC and MCHC levels too (tiny little red blood cells).  Nothing can be done to improve this type of anemia but potential spouses will need to be tested.  If both parents are carriers of this gene their child can be born with a more severe form of Thalassemia and require lifelong blood transfusions.  I have Alpha Thalassemia and have always been active.   I'm assuming that mild anemia all my life has prevented me from placing first in Triathalons, but I can live with that! 

 

My Celiac blood test came back as "mildly celiac" with only symptoms of anemia and Hashimoto's Thyroiditis.  For six weeks prior to my endo, I ate gluten like crazy.  I mean a loaf of bread a day!  I bought every cookie I adore, baked goodies like mad as if it were my last supper!  The results went from mild on my blood test  to moderate to severe damage to villi and I developed all the lovely intestinal symptoms to boot in just those six weeks.  And it's taken a bit longer to reverse those symptoms.....sigh!

 

Perhaps, you just didn't consume enough gluten to get a good result.  I would consult with another Gastro and retest since your family history is so strong.  Or if you're like my husband, you can stop the gluten  on your own without an official diagnosis (he's be gluten-free for 12 years).  At least he doesn't have a major "ding" on his health history.  This has been a big problem for me since we are self-employed and finding companies to accept me has been difficult, but not impossible -- yet!   I have to pay a lot more for health insurance.  I  went for the formal diagnosis to help my immediate and extended family and to get their support (Are you sure you can't eat this......?)

 

Hope this helps!


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Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#5 Deaminated Marcus

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Posted 19 May 2013 - 06:29 AM

If you can get a copy of the reports then that would be helpful when seeking a second opinion.

 

My total IgA serum was also low normal which makes me doubt my negative IgA blood tests.

 

Did you get the DGP-IgG Celiac blood test?

 

If you are still eating gluten, I would say to ask your PCP for that blood test.

 

Good luck and keep us posted.


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#6 IrishHeart

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Posted 19 May 2013 - 08:52 AM

I would go to a GI that specializes in celiac disease.

 

Your endoscopy sounds like damage from celiac disease...do you have the pathology report along with the procedural report?

 

The most telling piece of information is your improvement gluten-free.

 

Also of interest is a Total IgA is low...just not out of range which could mean the IgA blood work is of no use.  Have you had a tTG-IgG? or and AGA-IgG -- I do see you have a positive DGP-IgG.

 

Here is a simple explanation of the Marsh Scale for Celiac Disease...note Stage 1 and 2 are not specific to celiac disease...yet damage plus positive DGP-IgG plus familial history plus dietary response seems like Celiac to me:

 

Here is a basic explanation of the Marsh Scale used to type Celiac Disease.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal. 

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:
3A--Partial villous atrophy
3B--Subtotal villous atrophy
3C--Total villous atrophy

Stage 4, the villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.

 

PS...there are many gluten-free beers available.

 

 

Listen to this woman! She is speaking the truth.

 

Honestly, I would have given you the same exact response and I will add: there is no better 
test of a gluten intolerance than the recurrence of symptoms you report while consuming it.

 

Give up the gluten and feel --in your words--AMAZING!  again, but not before you have sought a second opinion.

 

Family history speaks volumes and "positive " is positive in my book. So it's "weak".but you were off gluten for a while. 

 

Seek out another GI's opinion--one who understands celiac. 

 

Here is what the U of C celiac Center says about this topic:

 

What does a “weak positive” blood test result for celiac disease mean?

Each lab defines “weak positive” differently. Unfortunately, diagnosis is not always a clear cut positive or negative. If you receive a weak positive, please work with your medical professional to determine the next best course of action.

The diagnosis of celiac disease is like an iceberg; the obvious, symptomatic, yet smallest, part of it exists above the water visible to all, but the majority of those with active disease have no visible symptoms at all.

 


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#7 nineof9

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Posted 19 May 2013 - 07:32 PM

Thank you everyone for your thoughts.  I was figuring that I really should go for a second opinion.  I work at a hospital and one of the physicians informed me that the reddenning and flattening could be due to the ulcers.  Unfortunately, the damage was throughout the duodenum and due to the other tests, I honestly feel as though it is celiac disease.  The celiac panel that i had done was "Gliadin and Transglutaminase."  I am unsure if having more blood tests would be more conclusive but I have been back on gluten for almost 3 months now and I am starting to get really frustrated with this whole process.  Even though I was incredibly frustrated with the gluten free diet, I know that my health is much more important and I would rather have that official diagnosis.  I know it sounds weird but being gluten free has become so trendy lately and in no way do I want to come across as someone who is just a picky eater.  I would hate to be "THAT" person at a dinner party who has to eat something special because I want to be a trendsetter.  Honestly, gluten free living is so hard that there really isn't anything "trendy" about it, and the media makes it no better!!!!

 

I think I am definitely going to make an appointment with another GI and get my records from the old one.  Hopefully I will be able to find someone who will be able to run more tests or even make a diagnosis with the tests that I already have had done considering the current signs that are pointing towards a diagnosis.  I feel as though looking at the big picture (morphological changes to my duodenum, symptoms, low HgB and HCT, as well as a positive IGG test, strong family history) all point to a diagnosis that would be missed if it were based ONLY off of the pathology report.  It still kind of gets to me that knowing how difficult it is to diagnose celiac disease, and the fact that a MAJORITY of people with celiac go undiagnosed, doctors remain very conservative in making an official diagnosis.  I understand the risk in making an incorrect diagnosis, but when testing is not 100%  at the moment, I feel like going with your "gut" (pun intended) is a good way of making sure that people who fall between the cracks get healthy faster.

 

I will certainly keep you all posted with how things transpire in the coming weeks.  Thanks again for all of your input!!!!!


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#8 nineof9

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Posted 20 May 2013 - 01:12 PM

I got the official pathology report so that I can take it to another doctor.  The report states that there was unremarkable duodenal mucosa in the sample from the 3rd part of the duodenum.  I was wondering if it is standard to take this as the sample instead of possibly the 2nd or the duodenal bulb which is why the report was non-conclusive.  Thanks again!!


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#9 nineof9

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Posted 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.


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#10 kareng

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Posted 20 May 2013 - 01:33 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.


They didn't take samples from all the parts. They have to send them to the pathologist if they did. Is it possible you only got part of the path report?
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#11 frieze

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Posted 20 May 2013 - 03:46 PM

it would appear that they only took one sample and that the rest was by observation only....good luck


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#12 nvsmom

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Posted 21 May 2013 - 06:22 AM

I did not see if your positive gliadin IgG test was deaminated gliadin peptide (DGP IgG) or the outdated anti-gliadin antibody (AGA IgG). The DGP IgG is one of the most specific tests you can run for celiac disease. It's specificity is 99-100% meaning that if you had 100 people who had a positive DGP IgG test, 99 to 100 of them would be celiacs... it doen't get much more specific.

 

The AGA IgG test is not as specific at 80-95% specifity, but still... with a positive tests, chances are it is celiac disease.

 

I got my numbers from the World Gastroenterology Celiac Guidelines: http://www.worldgast...long_FINAL.pdf Page 12 talks about specifity.

 

If you can't find a doctor to declare you a celiac, you should probably go gluten-free anyways. Giving up gluten is not a huge price to pay for feeling better.  Best wishes.  :)

 

ps.  Greens beer is pretty good.  ;)


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#13 nineof9

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Posted 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. 


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#14 GottaSki

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Posted 21 May 2013 - 01:37 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. 

 

Might be of comfort to know...

 

The DGP - both IgA and IgG antibodies are the first to react to gluten...as in if you were off gluten for a while and then back on...these Gliadin Peptide antibodies are the most likely to be reflected in blood tests.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 nineof9

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Posted 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.


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