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Patholoy Report - Followup


alevoy18

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alevoy18 Explorer

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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kareng Grand Master

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.

ravenwoodglass Mentor

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?

alevoy18 Explorer

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

ravenwoodglass Mentor

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.

Twinklestars Contributor

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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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