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lcarter

Member Since 20 Apr 2008
Offline Last Active Oct 21 2012 05:00 AM
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#751720 Negative Biopsies?

Posted by lcarter on 29 November 2011 - 04:51 AM

Here's a significant research paper of interest to all of those who have had a negative biopsy. Another reason not to fully trust negative biopsies is (1)labs miss read them 20% of the time, according to the attached research report, (2)the doctor may not take enough samples -8 are recommended,(3) or there are not enough taken in the right places, as damage can be spotty.

Variability in small bowel histopathology reporting between different pathology practice settings: impact on the diagnosis of coeliac disease.

Source: J Clin Pathol. 2011 Nov 12. Celiac Disease Center at Columbia University Medical Center, Division of Digestive and Liver Diseases, Department of Medicine, Columbia University, New York, New York, USA.

ABSTRACT
Background and Aims - Coeliac disease (celiac disease) diagnosis requires the detection of characteristic histological alterations of small bowel mucosa, which are prone to interobserver variability. This study evaluated the agreement in biopsy interpretation between different pathology practice types.
Methods - Biopsies from community hospitals (n=46), university hospitals (n=18) and commercial laboratories (n=38) were blindly assessed by a pathologist at our institution for differences in histopathology reporting and agreement in diagnosis of celiac disease and degree of villous atrophy (VA) by κ analysis.
Results - Agreement for primary diagnosis was very good between this institution and university hospitals (κ=0.888), but moderate compared with community hospitals (κ=0.465) or commercial laboratories (κ=0.419). Diagnosis differed in 26 (25%) cases, leading to a 20% increase in celiac disease diagnosis after review. Among those diagnosed with celiac disease by both institutions (n=49), agreement in degree of villous atrophy (VA) was fair (κ=0.292), with moderate agreement between the authors and commercial laboratories (κ=0.500) and fair with university hospitals (κ=0.290) or community hospitals (κ=0.211). The degree of VA was upgraded in 27% and downgraded in 2%. Within different Marsh score categories, agreement was poor (κ<0.0316) for scores 1 and 2, both missed at other centres, and fair or moderate for scores 3a and 3b. Information regarding degree of VA and intraepithelial lymphocytosis was lacking in 26% and 86% of reports and non-quantifiable descriptors, eg, 'blunting' or 'marked atrophy' were prevalent.
Conclusions - celiac disease-related histological changes are underdiagnosed in community-based hospitals and commercial pathology laboratories. Because incorrect biopsy interpretation can cause underdiagnosis of celiac disease, greater celiac disease awareness and uniformity in small bowel biopsy reporting is required among pathologists.
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#739156 New! Biopsy For The Folks On gluten-free Diet

Posted by lcarter on 16 October 2011 - 01:32 PM

WOW! This is great news! Hopefully it will be available real soon to those of us who are asked to do a gluten challenge so that biopsies can be done:

Patients who do not get a confirmed celiac diagnosis from standard tests could obtain one from an in vitro gliadin challenge, in which biopsied duodenal mucosa are tested using the toxic part of wheat gluten called gliadin, according to a study in the American Journal of Gastroenterology. University of Salerno researchers said the challenge method is helpful for patients who are on a gluten-free diet prior to the biopsy because they do not have to revert to eating gluten foods to achieve the diagnosis.

In Vitro Gliadin Challenge: Diagnostic Accuracy and Utility for the Difficult Diagnosis of Celiac Disease
The American Journal of Gastroenterology , (27 September 2011) | doi:10.1038/ajg.2011.311
Raffaella Tortora, Ilaria Russo, Giovanni D De Palma, Alessandro Luciani, Antonio Rispo, Fabiana Zingone, Paola Iovino, Pietro Capone and Carolina Ciacci

Abstract
OBJECTIVES: Diagnosis of celiac disease is difficult when treatment with gluten-free diet (GFD) is started before diagnosis and/or when the results of tests are inconsistent. The objective of this study was to evaluate the in vitro gliadin challenge.
METHODS: The study cohort included patients without celiac disease (negative controls, n=57), patients with celiac disease (positive controls, n=166 untreated and n=55 on GFD), and patients with difficult diagnosis (n=59). All patients underwent endoscopy for collection of duodenal samples, which served for the diagnosis of celiac disease and for the in vitro evaluation of the gliadin-induced mucosal expression of seven inflammatory markers: PY99, ICAM-1 (intercellular cell adhesion molecule), HLA-DR, CD3, CD25, CD69, and transglutaminase 2 IgA. Diagnostic work-up for celiac disease included the search of specific serum antibodies. Patients of the difficult diagnosis group were asked to stop GFD for repeated search of these antibodies under untreated conditions. The area under the receptor-operated curve (ROC) was used for statistical analyses on accuracy.
RESULTS: HLA-DR had the highest accuracy for celiac disease diagnosis in analyses on negative controls and positive controls also excluding patients on GFD (area under ROC=0.99). Accuracy of test did not increase combining data of HLA-DR with data of other markers. Findings were similar in the 39 patients of the difficult diagnosis group undergoing the search celiac disease-specific antibodies under untreated conditions.
CONCLUSIONS: The in vitro response of mucosal HLA-DR to gliadin is an accurate tool for the diagnosis of celiac disease also in patients with difficult diagnosis.


My understanding of this is that: first, they did biopsies on each of the three groups. Then, they had the "hard to diagnose" group drop the gluten free diet [after the biopsies]. It was done this way so that the blood antibody tests could be done while on a GFD, in order to cross check that these patients are positive on both tests. It was a scientific way to verify the validity of the in vito testing. Furthermore, the abstract of the article and the preceding paragraph [starting with "Patients who do not get confirmed..."] came from from Digestive Health Smart Briefs, by Craig H. Lubin, MD and the American College of Gastroenterology. So, their conclusion on the success of in vitro testing as a diagnostic tool for possible celiac disease in patients who are already on a GFD, is the conclusion stated by the scientists and doctors, not my conclusions. That is why this is so fantastic! Hope this helps. [See:[url="https://mail.google....022e2dcfa3ca7"]
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#731905 Always Feeling Cold

Posted by lcarter on 19 September 2011 - 05:07 AM

I agree with the others who think you could be hypothyroid because of feeling cold and the lower blood pressure, both key signs of hypothyroid [low thyroid hormone level]. Thyroid problems are a likely companion to celiac disease. Most doctors only do a TSH [Thyroid Stimulating Hormone] screening which really doesn't tell the whole story. In other words, the TSH is only the hormone which stimulates the thyroid to produce thyroid hormone - so, it's not a direct test. Besides that, the American Endocrinology Association, a few years ago, changed the range for "normal" from a high reading of 5.0 to a new high of only 3.0. Many labs are still using the 5.0 range which leaves a lot of folks with symptoms without a diagnosis.

For example, in my own situation, if I hadn't been able to eventually talk my general family doctor into running the whole thyroid panels [TSH, T4, Free T4, and Free T3 + the antibody panel of TPOAb and Anti-TPO] I would have never found out that I am hypothyroid and have autoimmune Hasimoto's thyroiditis. My TSH hovered between 4.7 to 5.1 for a few years there before I finally got it fully checked out. All that time I was having various symptoms, including joint pain. Three days after starting a low dose of thyroid medication, the joint pain totally disappeared and has never returned! That was 3 years ago. When a follow up sonogram was done after being on medication for a while, my thyroid had shrunk back down to a normal size. My family doctor had been manually feeling my neck and kept telling me that the thyroid felt normal. Only after the initial scan did we know it was enlarged and sitting at an angle that was not easily manually felt. Needless to say, you know your own body best. If you think there could be a problem, insist on the correct testing. And, if your doctor won't go along with it, find a doctor who will.
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#730966 Is Maltose Sugar Safe?

Posted by lcarter on 16 September 2011 - 04:53 AM

If maltose is not gluten related...it makes me wonder then if what I am reacting to is the sugars in the candy, since I am also fructose intolerant. I seem to do better with sugars in foods that are balanced between fructose and glucose, as in some fresh fruits. However, I have to really limit denser sugery foods because they quickly make me nauseas.

Just for history....I have had 3 glucose tolerance tests run over my lifetime and each time have had a "flat-curve" reaction. Also, I was a research subject for a group of scientists and doctors who were studying nutrition's roll in disease. They told me that every time my cells came in contact with sugars, they died...particularly quickly with fructose. Although, I seem to have a problem with all kinds of sugars, even the alcohol-sugars of dietetic foods. So, something in the pathway that either breaks-down or up-takes sugars in the digestive process is not functioning properly in me.
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#645148 Dining As A Gluten Free Guest

Posted by lcarter on 10 October 2010 - 05:45 AM

This very situation happened to me last night when we were invited over for the first time to have dinner in the home of my son's girlfriend. When she emailed me to confirm, I emailed her back the following reply:

We are really looking forward to seeing everyone later this afternoon! I know cooking for me is such a pain since I can't eat any gluten or dairy. So, I was thinking I would bring something to add to our dinner. I 'm planning on bringing fried rice to share with everyone. I make it with natural brown rice, veggies, and frequently meat. That way it will make planning a lot easier on the cook, plus it's always fun to have something extra to share. See you at 4:00! Linda

My fried rice is really a meal unto itself. First, cook the rice. Cut up the chicken breast {or other meat of choice] into cubes and marinate while preparing and cooking the veggies. For the marinate, I like a gluten-free soy sauce [Bragg Liquid Aminnos is my favorite], a little dried ginger powder, and pepper. Then, in a wok or frying pan saute onion in a bit of olive oil. Add a bag of chopped, fresh mixed stir-fry veggies [or any of your favorite veggies for that matter] to the wok. When the veggie mixture is cooked, but just slightly still crisp, remove veggie mix to another bowl. To the chicken + marinate to the wok with a bit more olive oil and stir-fry. When the chicken is done, add veggies and cooked rice back into the wok and heat through.

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