Opinion On Biopsy After Positive Bloodwork

[curiousgeorge]

I've been reading here for ages, and I now finally have the nerve to post. I had postive bloodwork this spring and was sent off for an endoscope.

My bloodwork was as follows:

TTG IGA 74 normal was less than 20

anti-gliadin IGA 17 normal is less than 20

anti-gliadin IGG 56 normal is less than 20

Based on the positive bloodwork I had the scope. I just got a copy of the results. I'm going to quote here:

"sections from the duodenal mucosla biopsies contain focal minor acute and chronic inflammation wtih neutrophils, lymphocytes and plama cells in the lamina propria. The brush border is intact. There is no evidence of dysplasia or malgnancy. The crypt to villious ratio is within normal limits."

DIAGNOSIS

1. Duodenal mucosal biopsies:

- Focal minor acute and chronic inflammation

2. Gastric Biopsies

- Focal minor chronic inflammation in the gastric antral mucosa.

There were only 4 samples taken from stomach and duodenum. That is from the pathology report.

Attached to it is the procedure repot which says the following:

After informed consent we started with spraying her throat with local Xylocaine, then the scope was introduced through the mough and the esophagus was intubaed under direct visualization. The scope was advance into the sedond part of the duodenum which showed some scalloping which is suggestive of celiac disease. Biopsy has been taken form the duodenum. There were no ulcers seen. The stomach was completely within normal. Biopsies have been taken from the stomach to rule out H. pylori.

ASESSMENT PLAN

38 year old with positive antibodies for celiac disease and scalloping in the duodenum suggestive of celiac disease. Patient has been on gluten free diet for 6 weeks. We adviced her to continue with that and to call us in two weeks for biopsy results to confirm celiac disease. If it has been confrmed we are goign to refer her for a dietician to assess her regarding diet for celiac disease. Patients bone densitometry should be followed and she should be on vitamen D and calcuim supplements if she has osteoporosis. Also she should have a bone densitometry every two years. We will se her again in the clinc in six months.

When I called the person on the phone was rather rude and told me it was negative and because it was neg I don't get to see GI doc. I'm canadian and I have to play by their rules. I asked about the nutritionist and she pretty much snubbed me. A few hours later, I got a call from the hospital nutritionist saying I must call and come in. I'm really confused by this. I dont' even know if I get to see them in 6 months or not. I guess I should call and see. I'm totally confused by the report as was my doc. By looking they said celiac because of the scalloping but by biopsy they are saying there is chronic inflammation which I'm assuming isn't completely normal.

Thoughts? Anyone else have similar results? I have been gluten-free for 5 months and do see a difference. I have had chronic issues iwth my ferritin levels and they are finally starting to go up. Thanks in advance!

[ShayFL]

First of all you had been gluten-free for 6 weeks prior to biopsy which is PLENTY of time for some healing to take place. Even complete healing. You did still have scalloping and inflammation though.

With those bloods and the biopsy (given the 6 week gluten-free diet) IMO you have CELIAC disease. And if it were me, I wouldnt let them tell me otherwise. I would stay on the gluten-free diet for life.

You have had a POS response to the diet as well which further supports the dx.

[Lisa]

Another lurker outted! Yeah!

With only four samples taken, it is likely that effected areas might have been missed; therefore, the pathology report would show negative.

Scalloping is consistent, as are your blood tests. Combined with a positive dietary response, I would consider myself diagnosed with Celiac Disease.

I understand the frustrations with the Canadian Health System. We often fuss in the US, but.. You might not meet the criteria for diagnosis in Canada without a supporting biopsy, but a personal diagnosis can change your life.

Welcome to the Club!

[curiousgeorge]

Well, I'm more or less happy to consider myself diagnosed but... I suspect that the follow up won't be there w/o it. I have my doubts that I will get the follow-up in six months as per the suggestion and will likely not get the bone density test every two years. It makes me feel like I've slipped through the cracks some. My blood work was taken bf going gluten-free btw. I went gluten light between having it taken and getting the results from it (5 weeeks) then totally gluten-free for 6 weeks before the biopsy.

Do you guys know if you would see inflammation if one was merely gluten intolerant? And what else scallops your insides? The doc that did the biopsy mentioned the possibility of a gluten challenge but aparently that isn't even an option given I don't get an actual appt with the doc.

I'm just really frustrated by the whole process. The only symptom I've ever had was issues with my ferritin. My doc didn't even get copies of the biopsy. I had to call the hospital and hound them to send it to him. He said he didn't really know what it meant either and that it wasn't neg. I know I've read that some pathologists only call it vili flattening if its completely flat and antying else is considered normal. I'm wondering how one gets their path re-read?

I think this paper would support me being dx with celiac form the increased lymphocytes.

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This is all just so frustrating....