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Patholoy Report - Followup


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#1 alevoy18

 
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Posted 16 September 2011 - 02:51 PM

Some of you may know my history from past post. To summarize what has happened. I was diagnosed MArsh 3B and postive tTg-IGA (56 when >20 is strong positive) two years ago. Recently I had an tTg-IGA test come back as 372 (normal <20). My Gastro was alarmed by this number and said he has never seen anything so high. He just did an enteroscopy and have received the results. We are still waiting on the CD3/CD8 staining to rule out refractory sprue. My questions about the report are below.

1. What does "no definitive evidence of abnormal lymphocytes" mean? Why wouldn't it just say "No abnormal lymphocytes" like my first biopsy results said? Any insight here?

2. With a tTG of 372, my Gastro was sure it would be total atrophy. Also, he said by visual my intestine looked complete flat, cracked and fold scalloping. He said it looked like a textbook case of complete atrophy. With all of this, it seems weird it is just a Marsh 3A result?

3. Any reason why they mentioned the "Heavy infiltrate of lamina" when it already says increased IEL. Isn't that the same idea?

4. Any idea why this was chosen for Internal Consultation? I'm not sure what this is as my last one didn't have this.

5. My Gastro said he sent if for CD3/CD8 staining, but I don't see this mentioned here. Would it be a separate process since this is just the original surgical pathology report.


I know some of these questions probably wont have answers, but I wanted to see if anybody had experience. Thanks a million!!

Report
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The biopsy shows duodenal mucosa with mild villous abnormalities and increased IEL counts. The lamina propria shows heavy infiltrate almost entirely made up of plasma cells. In view of clinical history, the morphological findings are compatible with Celiac Disease. There is no definitive evidence of abnormal lymphocytes.

This case has been discussed at our internal consultations on Sept 9, 2011

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#2 kareng

 
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Posted 16 September 2011 - 02:54 PM

Have you been gluten free for 2 years? This is alarming for 2 years gluten-free. I will be checking back to see what others who know more say.
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#3 ravenwoodglass

 
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Posted 16 September 2011 - 03:22 PM

I agree that is quite alarming if you have been strictly gluten-free for a couple years. I with I had some answers for you and hope your doctor can figure things out for you soon. It must be very frustrating for you. How are you feeling? Could you maybe have another intolerance like perhaps soy or casien that is keeping you from healing?
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 alevoy18

 
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Posted 16 September 2011 - 04:38 PM

Thanks to both of you.

Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just 3 biopsies). I really was hoping for the staining results, but I didn't see mention here.

I have been tested for other food allergies and lactose, but negative for all. I had no GI symptoms through all of this, but over the last 2 months I've had gas, small amounts of mucus in stool, some floating stools and major constipation. Sorry if that is too much info. Who knows whats wrong, but no tumors or signs of lymphoma makes me happy at least!!!

Thanks again
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#5 ravenwoodglass

 
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Posted 17 September 2011 - 02:40 AM

Thanks to both of you.

Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just 3 biopsies). I really was hoping for the staining results, but I didn't see mention here.

I have been tested for other food allergies and lactose, but negative for all. I had no GI symptoms through all of this, but over the last 2 months I've had gas, small amounts of mucus in stool, some floating stools and major constipation. Sorry if that is too much info. Who knows whats wrong, but no tumors or signs of lymphoma makes me happy at least!!!

Thanks again


Be aware that soy and casien intolerance will not show up in allergy panels as they are not allergies. If you consume either of them drop them out of your diet for a bit and then challenge them. It may not be the case for you but soy does to me what you describe and it took me a long time to figure out I had an issue with it and it was in a lot of the gluten-free stuff I was consuming.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Twinklestars

 
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Posted 17 September 2011 - 03:05 AM

I agree with Raven. Perhaps strip your diet down to the bare minimum, like a new celiac. Rice, fruit, veg and meat for a couple of months. Then add in dairy, soy etc one at a time. Something is preventing you from healing.
Also, have you considered asking your doctor to run the blood tests again? Even though there is still damage in your intestines, the reading is very high and perhaps the lab made a mistake and it my be elevated but not quite that high. Labs make mistakes all the time! Once I had a blood test result that came back saying I wasn't pregnant and that was very wrong! :lol:
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