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alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)3 Year Followup - Biopsy ResultsHi everyone,
I just recently had a 3 year followup scope due to multiple nutritional deficiencies and recent weight loss. Here are my results below. My 2 year followup showed very minor villous abnormalities and only plasma cells in the lamina propria. I am wondering if anybody knows what "foci of neutrophils" means? Or any other experiences are appreciated. THanks a lot!
- Recently tTG-IGA spiked to beyond 200+ levels
- Rule out refractory sprue and lymphoma
1. Small bowel appearance classic for celiac disease, refractory to years of gluten restriction.
2. Small bowel folds show evidence of complete flattening of the villi, multiple mucosal ridges, endoscopic scalloping, mosaic appearance and classic cracked cement appearance. No frank ulceration or friability or mucosal lesions frankly seen. No luminal narrowing or dilated areas. The pyloric channel is clear.
1. Villous abnormality, acute and chronic inflammatory cells in the lamina propria and increased IEL's found
Sections show villous abnormality varying from slender to blunted to completely flattened villi. These are increased inflammatory cells in the lamina propria composed of lymphocytes, plasma and foci of neutrophils. IEL's are also increased and present. These finds are non-specific and consistant with Celiac Disease. No evidence of lymphoprofilerative disorder is seen. Slides reviewed at intra-departmental rounds.
- 2 replies
- 803 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Low B12/ferritin/testosteroneHi,
I have been diagnosed with Celiac Disease (Nov 2009) and Addison's disease (May 2011). I also am being investigated for autoimmune hypopituitarism due to low LH/FSH/Testosterone as well. My question is regarding my vitamin levels. Here were my levels pre and post treatment:
B12 = 151 (range 150 - 900)
Ferritin = 46 (range 30 - 300)
Free Testosterone = 4 (range 30 - 90)
LH = 1 (range 4 - 12)
FSH = 3 (range 3 - 15)
B12 = 75 (range 150 - 900)
Ferritin = 20 (range 30 - 300)
* Started B12 Injections every two weeks *
Feb 2012 (levels taken 2 weeks after last injection)
B12 = 160 (range 150 - 900)
My questions are,
1. Is it normal for my B12 to only be at 160 after all these injections. I would think two weeks post injection, my levels would still be higher.
2. The doctors said while my ferritin is low, it is common in celiac and is not urgent to be treated. I would think a 25 year old male should have a ferritin much higher than 20 and does anybody know what would cause it drop so quickly?
3. Does anybody know why testosterone levels would drop, no pituitary tumors were found.
I know nobody hear is a doctor, but any input is appreciated. Thanks a lot!!
- 0 replies
- 938 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)B12/ferritin Extreme Drop - Advice NeededHi everyone, thanks in advance.
I'll try to keep this short, but I'm basically wondering if my GP is overreacting or not. Here is my sequence of events:
Nov 2009 - Celiac Diagnosis tTG=56 - biopsy Marsh 3B - b12=210 ferritin=60
Nov 2010 - tTG=40 - b12=180 - ferritin=52
Mar 2011 - Addison's diagnosis with low cortisol and high ACTH - started cortisone
July 2011 - Hypopituitary diagnosed with severely low free testosterone and low LH/FSH - started testosterone therapy
Aug 2011 - tTG=286 - B12=151 - ferritin=48
Sept 2011 - tTG=275 - B12=75 - ferritin=19
I started to get really sick and lost 30 lbs in 3 months, so I had a repeat biopsy and tTG in Aug of this year. Endoscopy showed damage has improved slightly to Marsh 3A, but still there, yet tTG is now 286 (normal <20). GI was extremely confused. Endoscopy showed increased IEL and it worded it as "extremely heavy plasma cell and IEL infiltrate, but no definite abnormal cells found". I am waiting for immunostaining to be done to check for refractory, but it takes awhile. AT my age, I'd expect this is not the case.
While waiting I went to my GP and told her I've been having lots of joint pain, nerve type pain and feeling weak as of late. She rechecked my B12 and it was 75 (range 250 - 1000). My ferritin was rechecked too and it was 19 (range 50 - 300). My GP is really concerned with the sudden drop, especially since I am a 25 year old male, so I should be higher. She has called my Gastro and asked him to see my immediately as she said my levels should not drop that fast. I;m not too worried honestly, as I have addison's and autoimmune hypopituitarism (caused low testosterone and LH/FSH) as well, so I know my body is messed up.
Does anybody have any experience like this or knowledge in the area, as help is appreciated. I'm just not sure if her worry is warranted or are these levels not that bad? Any help or advice is appreciated! Thanks.
- 3 replies
- 2,069 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Patholoy Report - FollowupSome 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!!
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
- 5 replies
- 669 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)2 Year Follow-Up EnteroscopyHi everyone,
After two years gluten free, my tTG went through the roof. It was initially 28 (range <10) in 2009, then it was 26 (range <10) in 2010 and now it is 186 (range <10). I had a scope this morning with an extension on it to look further in the small bowel (called a Enteroscopy). The initial results are below. The doctor came and spoke to me. He said my results showed text book advanced celiac and will likely show total villous atrophy. When I was original diagnosed, I was at Marsh 3b (subtotal atrophy). He said when the biopsy results come back, he will also send them to another hospital for CD3/CD4 staining. He said the odds of occult lymphoma or refractory sprue are low, but he can't rule anything out until the biopsy comes back. I don't understand, if there was no tumor or mass, how could lymphoma even still be an option? Does anybody know anything about CD3/CD4? Thanks a lot!
- Normal esophagus appearance
- Normal stomach appear (1 biopsy taken)
- Abnormal small bowel appearance
- mucosal atrophy
- "cracked cement" appearance
- mucosal scalloping
- mucosal ridging
- 5 biopsies taken
- 0 mass lessons found
Need to rule out refractory sprue
Biopsies taken for CD3/CD4 staining
- 7 replies
- 974 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Need Some AdviceHi everyone, thanks in advance.
To keep this short, I was diagnosed in 2009 with Celiac disease by positive anti-tTg IGA and positive biopsy. My tTg at the time was 28 (range 0 - 10) and my biospy put me at Marsh IIIb (moderate villus atrophy). My blood test at 1 year had my tTG up to 40 which was a disappointment, so I restricted my diet down to mainly whole foods. The only processed foods I eat are gluten free cereals from my health food store. My most recent test showed that my tTG was now 190!!!! How can this be in one years time??? I also have been dealing with on and off mild anemia. My reticulocyte count has also been low consistently, so I may be going for a bone marrow biopsy. In the end my question is how can the tTg go up almost 5 times the original value in one year when I've restricted my diet over that time. Even if I accidentally got CC'd here and there, I don't see how it could change so fast. I am just worried about having elevated levels as I want my risk for other health issues to go back to normal. Also I am confused as to why my stomach issues have improved. Since going gluten free I no longer have any bowel issues. My bowel movements are normal, my gas is gone and all seems fine. My only issue is 20 lbs weight loss in the last 6 months and fatigue, but no stomach problems. Anyways, any advice is appreciated!!!
- 5 replies
- 717 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Low Blood CountsHi, I was diagnosed by ttg/biopsy about 1 and a half years ago. I have been strictly gluten free ever since. Recently at my physical I had a blood test come back showing:
RBC: 3.99 (normal 4.4 - 6.0)
HB: 120 (normal 140 - 160)
HCT: .34 (normal .40 - .50)
WBC: 3.8 (normal 4.5 - 11.0)
Absolute Neutrophil: 2.0 (normal 1.8 - 7.0)
Absolute Lymphocyte: 0.9 (normal 1.0 - 4.0)
Plat: 170 (normal 150 - 400)
ABS Retic: 7 (normal 28 - 80)
All other results were normal, blood smear showed Normocytic & normochromic appearance.
My GP wanted to send me to a hematologist, but the hematologist wanted a repeat test in one month because she said I likely just had a bad infection. My results are below. Nothing really changed too much, except my retic is higher, but still way to low if calculated as a corrected retic for the level of anemia. My GP said the hematologist had no real interest to see me before. My GP wont be able to see me about the recent results until June because she is away (I just got a copy faxed to me for own records). Do you think I should push the hematologist to see me if she still doesn't want to after seeing these results? Something doesn't seem right for a fit 25 year old male to have low counts, especially since nutritional deficiencies have been tested and ruled out (the blood smear also was normal). Any suggestions of what it can be or experience is appreciated!! Thanks!
RBC: 4.01 (normal 4.4 - 6.0)
HB: 122 (normal 140 - 160)
HCT: .36 (normal .40 - .50)
WBC: 3.4 (normal 4.5 - 11.0)
Absolute Neutrophil: 1.8 (normal 1.8 - 7.0)
Absolute Lymphocyte: 1.0 (normal 1.0 - 4.0)
Plat: 185 (normal 150 - 400)
ABS Retic: 37 (normal 28 - 80)
All other results were normal, blood smear showed Normocytic & normochromic appearance.
- 1 reply
- 1,304 views
alevoy18 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Enlarged SpleenHi Everyone,
I was diagnosed by tTG blood test and positive biopsy (Marsh 3B) in November 2009. Over the last couple of years I've had a few ultrasounds, due to finding lymph nodes in my neck/armpit. Prediagnosis I had a Ultrasound that showed my spleen as 11cm long. 6 months later after going gluten free, I had another ultrasound which showed my spleen was still normal sized at 10.6cm long. On my most recent U/S (Feb 2), my spleen was 14cm long and listed as mild/moderate splenomagly.
Has anyone experienced this? I have had issues with my RBC/HB/HCT counts being borderline low for the last couple of years and my reticulocyte (immature red blood cells) counts being extremely low. I saw a hematologist, but they were not concerned until my red cells dropped lower. I'm just curious if anyone knows what the enlarged spleen is likely from or if I should see my doctor about it. A specialist ordered the U/S for the lymph nodes, no nodes were found in the abdominal section, just the spleen size. Is the spleen something that needs to be investigated or do I not need to bring it up to my family doctor?
As for the lymph nodes, last check the largest in my neck was 2.0cm x 0.8cm and the largest in my right armpit is 3cm x 1.5cm. The biopsy of the armpit had a damaged specimen, so I am awaiting to see if I need another one. This is all likely nothing since my CBC tests are only borderline low, but I would like a bone marrow biopsy to ease my mind. Does anybody agree with the biopsy being done or am I just worrying too much?
Thanks a lot!
- 3 replies
- 3,512 views