The Dermatitis Herpetiformis Online Community Blog

The DHOC has moved servers

2008-03-11T16:55:00.006Z

I have today moved the Dermatitis Herpetiformis Online Community to a new web server. The domain hasn't changed so you'll still be able to view it at the same address as before: http://www.dermatitisherpetiformis.org.uk/

I've also taken the opportunity to streamline the site a little by removing some of the less popular facilities. The following features are still available...

The web forums/message boards.
Case studies.
Q's & A's database.
Photo library.
DH Links.
Links Xtra.
Coeliac & DH News.
What is DH article.
The blog.

You'll notice that the web forums have been condensed into two message boards:
Forum Notices/Announcements/Help
Dermatitis Herpetiformis Matters
Don't worry, we haven't lost any posts, I've merged the topics from the Archived and Coeliac UK boards into the DH Matters board. Hopefully, this will simplify things.

In case you're concerned, it's not my intention to shut down the DH Online Community - I've simply found that I have less time than I used to, to maintain and oversee the site.

Please continue to visit the DHOC and to converse and offer support to others on the message board.

Best wishes,

Annie (Site Admin)

Celiac Disease Center's Family Screening

2007-09-21T14:25:00.000+01:00

Sunday, October 14, 2007
9:00 am - 5:00 pm
Rye High School
Rye, NY 10580

Highlights...
Family screening for celiac disease
Test results
Educational sessions
Exhibits
Gluten-free vendor fair
Entertainment
(all included in your registration)

Registration
$25 per person. Registration by October 1 required.
Register online at http://www.celiacdiseasecenter.org/
No refunds.

Gluten-free lunch is available for purchase the day of the event. Cash only.

Family Screening
Because celiac disease is hereditary, family members--particularly first and second-degree relatives-of people who have been diagnosed should be tested for the disease. About 10 percent of an affected person's first-degree relatives (parents, siblings, or children) will also have the disease. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.

Criteria:
You must pre-register online at http://www.celiacdiseasecenter.org/ before Monday, October 1. Limited Capacity.
6 + years of age
You must be a first or second-degree relative of someone with celiac disease
You must be on a regular gluten containing diet for at least 60 days before testing

For additional information about celiac disease and the Celiac Disease Center at Columbia University, please visit us
online at http://www.celiacdiseasecenter.org/.

Celiac Disease Center at Columbia University
Harkness Pavilion
180 Fort Washington Avenue
Suite 934
New York, NY 10032
Tel (212) 342-4529
Cell (646) 812-1212
Fax (212) 342-0447
Email cb2280@columbia.edu
http://www.celiacdiseasecenter.org/

US FDA Proposes to Define the Term "Gluten-Free" for Voluntary Use in Food Labeling

2007-01-30T13:28:00.000Z

FDA Proposes to Define the Term "Gluten-Free" for Voluntary Use in Food Labeling

The Food and Drug Administration (FDA) has published a proposed rule in the Federal Register, Docket No. 2005N-0279, titled "Food-Labeling: Gluten Free Labeling of Foods" (72 FR 2795). Included in the proposed rule is a definition established by the FDA for the term "gluten-free" for voluntary use in the labeling of foods. A definition for the term "gluten-free" would assist those who have celiac disease (also know as celiac spue or gluten-sensitive enteropathy) and their caregivers to more easily identify packaged foods that are safe for persons with celiac disease to eat. Celiac disease occurs in genetically susceptible individuals and causes damage to their small intestine when they consume gluten found in "prohibited grains". Celiac disease has no cure, but avoiding the consumption of gluten can resolve its symptoms, mitigate and possibly reverse damage, and reduce associated health risks. This proposed rule has been prepared in response to the Food Allergen Labeling and Consumer Protection Act of 2004, Title II of Public Law 108-282, enacted on August 2, 2004, which directs the Secretary of the Department of Health and Human Services to propose, and later make final, a rule that defines and permits the use of the food labeling term "gluten-free".

FDA is proposing to define the food labeling term "gluten-free" to mean that a food bearing this claim does not contain any of the following:

an ingredient that is a "prohibited grain", which refers to any species of wheat (e.g., durum wheat, spelt wheat, or kamut), rye, barley or their crossbred hybrids;
an ingredient (e.g., wheat flour) that is derived from a "prohibited grain" and that has not been processed to remove gluten;
an ingredient (e.g., wheat starch) that is derived from a "prohibited grain" that has been processed to remove gluten, if the use of that ingredient results in the presence of 20 micrograms or more gluten per gram of food,
or 20 micrograms or more gluten per gram of food.

A food that bears the claim "gluten-free" or a similar claim (e.g. "free of gluten", "without gluten", "no gluten") in its labeling and fails to meet the conditions specified in the proposed definition of "gluten-free" would be deemed misbranded.

Currently, there is no Federal regulation that defines the term "gluten-free" used in the labeling of foods. Based upon comments FDA received during its public meeting on "gluten-free" food labeling held in August 2005 and other information available to the Agency, there is no universal understanding among U.S. food manufacturers or consumers about the meaning of a food labeled as "gluten-free". FDA believes that establishing a definition for the term "gluten-free" and uniform conditions for its use in the labeling of foods will ensure that persons with celiac disease are not misled and are provided with truthful and accurate information.

The proposed rule has a 90-day public comment period.

A document titled "Questions and Answers on the Gluten-Free Labeling Proposed Rule" has been prepared by FDA and is available online.

In patients with positive endomysial antibody (EmA) tests, over what period...

2007-01-14T22:44:00.000Z

In patients with positive endomysial antibody (EmA) tests, over what period do EmA sera levels revert from positive to negative in patients on gluten free diets?

Source - National Library for Health Primary Care Question Answering Service

Interpretation:
Is the presence of endomysial antibody affected by a period of time on a gluten free diet?

Answer:
A CREST guideline on coeliac disease in adults, issued in 2006, states:

"TGA and EmA can be used not only for diagnosis but also for monitoring of dietary compliance:
seroconversion occurs rapidly with strict gluten exclusion."[1]

Midhagen et al measured the speed at which serum titres decreased following the introduction of a gluten free diet (GFD) in 20 patients. The authors report:

"The patients were followed for 1 year and sera were taken after 1, 3, 6 and 12 months after start of a GFD. Sera were stored at -20 °C and analysed for IgA antibodies against gliadin, endomysium and two different commercial tTG assays based on recombinant human tTG (tTGrh) and guinea-pig liver (tTGgp). Twenty patients could be followed during GFD and all antibody titres fell sharply within 1 month after introduction of a GFD and continued to decline during the survey interval. Thirty days after beginning the diet only 58, 84, 74 and 53% of all patients had positive antibody levels of tTGrh, tTGgp, EmA and AGA respectively...[2]

Fotoulaki et al assessed the effectiveness of immunological markers as monitoring tests in coeliac disease in 30 patients, aged between 1 and 24 years old, and found:

"One month following the exclusion of gluten from the diet, most antibodies are still positive. Twenty-three to 43% of antibodies remained positive by the end of the third month. At 6 and 9 months, 17% and 10% were positive, respectively. At 12 months no positive antibodies were detected. After gluten challenge, positive IgA-AGA and IgA-EmA titers were already demonstrated at 3 months (90% and 86%, respectively), while Ig-ARA titers showed a slow increase." [3]

Kapuscinska et al recruited 84 patients (33 children aged less than five years old and 51 adults) to evaluate changes in EmA levels in patients on gluten free diets:

"Of the 33 children, 11 were untreated and symptomatic and were IgA-EmA positive at initial presentation. Twenty-two children previously controlled on a gluten-free diet (GFD) exhibited IgA-EmA titers during gluten challenge. Furthermore, the antibody levels declined in all cases (usually to negative) when the patients were again placed on a GFD for 6-12 months. Changes in intestinal histopathology paralleled the changes in antibody titers in six cases undergoing serial biopsies. Of the 51 adult patients with proven CD who were prescribed a GFD for at least 12 months, IgA-EmA were detected in 10 cases who were noncompliant to their GFD, whereas the antibodies was found in only 1 of the remaining 41 patients strictly adhering to their diet." [4]

Finally, an e-Medicine article on coeliac sprue adds:

"The presence of serum IgA antibody to endomysium in untreated celiac sprue has higher sensitivity and higher specificity than antigliadin antibodies. However, serum IgA antiendomysial antibody often becomes undetectable after 6-12 months of gluten withdrawal." [5]

References
1. CREST. Guidelines for the diagnosis and management of coeliac disease in adults. May 2006. (http://www.crestni.org.uk/publications/coeliac-disease-adult-diagnosis.pdf).
2. Midhagen G.,Aberg A. and Olcen P et al. Antibody levels in adult patients with coeliac disease during gluten-free diet: a rapid initial decrease of clinical importance. J Intern Med 2004; 256(6): 519-524. (http://www.blackwell-synergy.com/links/doi/10.1111/j.1365-2796.2004.01406.x/abs/).
3. Fotoulaki M, Nousia-Arvanitakis S, Augoustidou-Savvopoulou P, Clinical application of immunological markers as monitoring tests in celiac disease. Dig Dis Sci. 1999 Oct;44(10):2133-8. (http://www.hubmed.org/display.cgi?uids=10548368).
4. Kapuscinska A, Zalewski T, Chorzelski TP et al. Disease specificity and dynamics of changes in IgA class anti-endomysial antibodies in celiac disease. J Pediatr Gastroenterol Nutr. 1987 Jul-Aug;6(4):529-34. (http://www.hubmed.org/display.cgi?uids=3323442).
5. Klapproth J and Yang V. Celiac sprue. e-Medicine. January 2007. (http://www.emedicine.com/med/topic308.htm#section~workup).

Finding a feed on the fly

2006-12-11T10:31:00.000Z

I thought this was a good idea, which more cities and towns would do well to take up. It seems it could be a useful resource for people with dermatitis herpetiformis and coeliac disease.

Finding a feed on the fly
Source - news.co.au

EATING out is a way of life for many Sydneysiders and it's now easier than ever to book a table.

Passionate diner Stewart Noble launched 1300 Eat Out in September as a way for would-be diners to book a table on the fly.

As a mortgage broker running three franchises, Mr Noble was accustomed to eating out five times a week but he says it became frustrating trying to find new places to eat, especially when eating out was a last minute decision.

"I thought how great it would be if I could just call a single number."

1300 Eat Out allows callers to do just that. They specify which area of Sydney they'd like to eat in, what kind of food they are in the mood for and how much they want to spend. The call centre staff do the rest.

While the caller is on hold, they call a suitable restaurant and make a booking on their behalf. If no tables are available, other restaurants are contacted until a booking can be confirmed. If the restaurant is closed at the time, the customer gets their booking confirmed through a callback once the restaurant has opened.

Diners can also specify dietary requirements such as gluten-free meals, vegetarian or low-fat meals.

About 250,000 Australians suffer from coeliac disease, a medical condition which results in a permanent intestinal intolerance to gluten. If left untreated, coeliac disease causes permanent damage to the lining of the small intestine, which results in the body being unable to properly absorb essential vitamins, minerals and nutrients. The only way to treat the condition is for sufferers to commit to a lifelong gluten-free diet, which means avoiding all grains of the type commonly used in bread, cakes or pasta. The result is that eating out can be a minefield.

"One of my team members and her mother are both coeliacs, yet they love eating out," Mr Noble says. "So, when I launched the service I wanted to make sure it was sensitive to the needs of those with this condition, as well as other dietary sensitivities."

Although there are online restaurant booking services available, 1300 Eat Out is the only such service in Australia which has a call centre open 24 hours a day.

"Most people research restaurants online these days, but that can be hard when you're short on time or on the road," Mr Noble says. "We see the service as a mobile food guide for the convenience age."

About 45 Sydney restaurants have signed up to the service with another 250 expected to join next year not just in Sydney but in Melbourne and Canberra too.

1300 Eat Out's Sydney restaurants inclue the likes of Yipiyiyo, Sails on Lavender Bay, Portofino, Una's, Oh Calcutta and Zest.

Mr Noble thoroughly researched the market before launching the business. They assessed competitor offerings, conducted extensive market research with restaurants and employed a statistician to crunch the numbers to make sure the business plan was actually viable.
About 1.3 million people eat out in Sydney every week and about 400,000 of those diners book ahead.

"I've always wanted to start my own business completely from scratch," Mr Noble says. "I'm getting to combine my passion for dining out with my passion for business."

Future plans include SMS capability, a frequent diner program, expansion to regional areas and other major cities, and an enhanced service which is designed to help with large-scale events.

Bookings through 1300 Eat Out are free.

Member restaurants pay $4.95 per booking and a fee of $495 a year.

Alba Therapeutics Presents Data from Positive Phase Ib Clinical Trial at the XII International Celiac Disease Symposium

2006-11-15T22:17:00.000Z

New York, November 10, 2006

Source - Alba Therapeutics

Data presented on November 11th at the XII International Celiac Disease Symposium in New York City show that when AT-1001, an investigational oral zonulin receptor antagonist being developed for treatment of Celiac Disease (CD), was assessed in a double blind, placebo controlled study of CD patients, the product induced a positive result on the trial's primary endpoint, intestinal permeability. The objective of the Phase Ib proof of concept study was to establish the safety, tolerability and effectiveness of single doses of oral AT-1001 in adult CD patients in remission that are challenged with a large dose of gluten. Key findings from this Phase Ib study include:

Intestinal barrier function was maintained by AT-1001 despite a supramaximal stimulus with gluten. There was a significant increase in permeability in placebo recipients but not in AT-1001 recipients following the 2.5 gram gluten challenge, as determined by urinary Lactulose-to-Mannitol (L-to-M) ratio.
AT-1001 was generally safe and well tolerated, and no serious adverse events were reported.
AT-1001 plasma concentrations were unmeasureable (< 0.5 ng/ml), indicating little to no systemic absorption when administered orally.
The biological effect of AT-1001 persisted beyond the drugs residence time, suggesting that AT-1001 modulates both persistent leak and immune activation.
Symptoms of acute gluten toxicity were inhibited in the AT-1001 arm when compared to placebo.

"AT-1001's inhibitory effect is most likely related to its capacity to prevent zonulin binding to its receptor on the lining of the gut, reducing exposure to gliadin and immune activation" stated Blake Paterson, M.D., Alba's Co-founder and CEO. "We are excited by the demonstration of a systemic immunological benefit arising from a physiological event at a mucosal surface of the small bowel, and look forward to completion of our Phase II clinical trial to further assess AT-1001's impact in this debilitating disease."

Discover why Celiac Disease is an Emerging Epidemic

2006-11-15T21:58:00.000Z

Peter H.R. Green, MD

One in every 100 people in the United States is affected by this autoimmune condition and 97 percent of them are undiagnosed. Discover how this inflammatory condition of the intestines can affect every system in the body and why it is important to get a proper diagnosis.

Peter H.R. Green, MD, is the director of the Celiac Disease Center at Columbia University, a professor of clinical medicine at Columbia's College of Physicians and Surgeons and the author of Celiac Disease: A Hidden Epidemic.

Date & Time: Tue, Nov 28, 2006, 6:30pm
Location: 92nd Street Y, 1395 Lexington Avenue, New York, NY 10128

Tickets are $10; $5 for May Center Members.

To order tickets call 212.415.5700 or visit www92y.org

WANTED! DH volunteer for Crossed Grain Case Study

2006-11-14T10:08:00.000Z

Coeliac UK are looking for a volunteer with DH to act as a short case study for the Crossed Grain Magazine. If you think you can help please contact:

Emma Merrikin
Dietitian
Coeliac UK
Suites A-D
Octagon Court
High Wycombe
Bucks
HP11 2HS

Emma.Merrikin@coeliac.org.uk

Blood lipids after diagnosis of coeliac disease

2006-10-09T11:11:00.000+01:00

Source - Coeliac UK's October eXG

Scientific evidence suggests that raised levels of fat in the blood are related to increased risk of developing heart disease. Undiagnosed or poorly treated coeliac disease has been associated with individuals having low levels of fat in the blood, which could be potentially beneficial in lowering their risk of developing heart disease. However, there is a lack of evidence to back this up. It has been suggested that after diagnosis of coeliac disease and subsequent gluten-free diet, cholesterol levels in the blood may rise possibly due to improved absorption of nutrients.

This study looked at the levels of fat in the blood of 132 patients at the time of, and after, diagnosis of coeliac disease and starting a gluten-free diet. After an average time of 20.5 months on a gluten-free diet it was found that total cholesterol and High Density Lipoprotein, (HDL, "good" cholesterol) levels had increased, and that Low Density Lipoprotein, (LDL, "bad" cholesterol) levels had not increased significantly. The amount of 'bad' LDL cholesterol compared to 'good' HDL cholesterol (known as LDL/HDL ratio) was found to have decreased.

This study concludes that despite an overall increase in total cholesterol, the increase in HDL and reduction in LDL/HDL ratio should calm concerns that dietary treatment of coeliac disease worsens a persons risk of developing heart disease and, in fact, may lead to improvements in changes of fats in the blood.

Reference: Brar P et al. Change in Lipid Profile in Celiac Disease: Beneficial Effect of Gluten-Free Diet. The American Journal of Medicine 2006;119:786-790

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Change in Lipid Profile in Celiac Disease: Beneficial Effect of Gluten-Free Diet

Source - The American Journal of Medicine

Purpose

Celiac disease is associated with hypocholesterolemia, which is thought to contribute to a favorable cardiovascular risk profile. This led to suggestions that the diagnosis of celiac disease and its treatment with a gluten-free diet may result in elevation of the serum cholesterol level and worsen this risk profile. However, no study proves this in adults. We therefore examined the effect of a gluten-free diet on the lipid profile in patients with celiac disease.

Subjects and methods

We identified 132 patients with celiac disease who adhered to a gluten-free diet and had lipid profiles performed before and after a median of 20.5 months on the diet. The patients lacked diseases that may affect serum lipids.

Results

There were significant increases in total cholesterol and high-density lipoprotein (HDL) cholesterol (P < .0001) but not low-density lipoprotein (LDL) cholesterol (P=.06). The LDL/HDL ratio decreased by 0.36±0.7 (P < .0001). Both men and women had a significant increase in total cholesterol and HDL and a significant decrease in the LDL/HDL ratio. Only men had increases in LDL (P=.02). The greatest increase in lipid values was seen in those with the lowest initial values. The largest increase in HDL was seen in subjects with more severe disease as indicated by low albumin level and presence of total villous atrophy.

Conclusions

Diagnosis of celiac disease and its treatment with a gluten-free diet resulted in improvement in the lipoprotein profile, which included an increase in HDL and a decrease in the LDL/HDL ratio.

Alba Therapeutics Announces Phase II Trial for Zonulin Antagonist AT-1001

2006-09-22T11:59:00.000+01:00

Source - Alba Therapeutics

Alba Therapeutics Corp. today announced that it had dosed its first patient in a Phase II trial for the treatment of Celiac Disease (CD). In October of last year, the FDA granted "Fast Track" designation to AT-1001, an orally administered zonulin receptor antagonist for treatment of Celiac Disease.

The multicenter, double blind, placebo controlled dose ranging study will evaluate the safety, tolerability and efficacy of AT-1001 in 79 Celiac Disease subjects during gluten challenge. "The initiation of the Phase II CD study is an important milestone for Alba Therapeutics as we continue to build our clinical experience with this disease and advance our program towards additional therapeutic applications for our zonulin antagonists" stated Dr. Blake Paterson, CEO of Alba. "Our understanding of the zonulin pathway coupled with AT-1001's excellent safety profile and the positive Phase Ib proof of concept data lead us to believe that the Phase II study will yield high quality results." "Moreover, because there is no effective treatment for CD, entry into Phase II studies is a tremendous step forward for those patients suffering from this disease and other autoimmune diseases."

About Zonulin
Zonulin is an endogenous signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia. Discovered by Alba's co-founder, Dr. Alessio Fasano, zonulin appears to be involved in many disease states in which leakage occurs via paracellular transport across epithelial and endothelial tight junctions (tj), and thus may play an important potential role in the treatment of autoimmune and inflammatory diseases.

About Alba
Alba Therapeutics Corporation is a privately held biopharmaceutical company based in Baltimore, Maryland . Alba is dedicated to commercializing disease-modifying therapeutics and vaccine and drug delivery adjuvants based on the zonulin pathway. Alba's lead molecule, AT-1001, is targeted towards the treatment of Celiac Disease and Type 1 Diabetes.

Enzyme Could Help Celiac Disease Patients Tolerate Gluten

2006-09-10T17:08:00.000+01:00

Source - News Target.com

Patients with celiac disease have to carefully monitor their diet to avoid consuming gluten, a ubiquitous protein found in whole grains.

Now, researchers say a newly discovered enzyme may prevent an allergic reaction in celiac patients who have accidentally consumed gluten.

Gluten causes an inflammatory reaction that can lead to significant intestinal damage in people suffering from celiac disease. The damage prevents the intestine from properly absorbing nutrients from food. Avoiding gluten in the diet prevents this damage, but the risk of accidentally ingesting gluten remains high.

However, researchers at Stanford University say they've identified an enzyme called EP-B2 that successfully digested gluten in an acidic environment similar to that of a human stomach. The enzyme even broke down the elements of the protein associated with causing the inflammatory reactions in celiac patients.

"Non-dietary therapies that allow celiac patients to safely incorporate low-to-moderate levels of gluten into their daily diet would be of considerable benefit," study author Dr. Chaitan Khosla, of Stanford University and the Celiac Sprue Research Foundation, said in a prepared statement. "Having demonstrated earlier that certain types of enzymes can detoxify gluten, our laboratory set out to devise an optimal oral enzyme therapy for celiac sprue by borrowing from nature," Khosla said.

"In germinating barley seed, gluten serves as a nutritious storage protein that is efficiently digested by enzymes. One enzyme, EP-B2, plays a crucial role in this process by breaking gluten proteins after glutamine residues, which comprise one-third of all amino acid residues in gluten," Khosla added.

Khosla's team used a combination of EP-B2 and PEP, another enzyme known to digest gluten. The two enzymes together broke down and detoxified gluten within 10 minutes. Neither was effective when used alone.

"Our results suggest that recombinant EP-B2 should be effective as supportive therapy to help celiacs cope with the 'hidden' gluten in everyday life, and that a two-enzyme cocktail containing PEP and EP-B2 may even allow celiacs to resume a more normal diet in the future," concluded Khosla.

Wanted - Coeliac families to try out free Biocard Celiac Test in exchange for offering their stories to the press.

2006-08-30T15:25:00.000+01:00

STOP PRESS!!!

Do you live in the inner M25 area of the UK?

JRBiomedical are currently recruiting 10 families with a known coeliac sufferer in them as part of a local media campaign for the new Biocard Celiac Test.

Coeliac disease affects 1 in 100 people in the UK but 80% of sufferers are unaware they have the condition.

Your risk of having a positive result is ten times greater if a close family member has already been diagnosed. It is therefore vitally important that first and second degree relatives of known sufferers are also screened for the condition.

The new Biocard Celiac Test gives a result in less than ten minutes so your mind can immediately be put at rest. As accurate as those carried out in a hospital laboratory, the test marks the first step in the diagnosis process and is both quick and painless.

If you meet the criteria for inclusion JRBiomedical will happily supply you with up to ten FREE tests with which to screen your parents, siblings, children and other close relatives. Please note, all participants must be willing to speak to the press about their experiences.

If you would be interested in taking part in their campaign please contact Dr John Rees on j.rees@jrbiomedical.co.uk. The deadline for inclusion is the 30 September 2006.

Firm offers home-test kit for coeliac disease

2006-08-11T17:21:00.000+01:00

Source - icWales - Aug 11 2006

A self-diagnosis kit which can identify gluten intolerance - the modern disease which affects thousands of families - is being marketed by a Welsh biomedical firm...

...Until now, diagnosing the illness has been a laborious process, and many people reach middle age before they realise they have a problem.

Now the first do-it-yourself testing kit for has been launched in the UK by a Welsh biomedical firm. The test, which was originally developed in Finland, is designed to speed up the diagnosis of coeliac disease - the official name for gluten intolerance.

It is hoped that it could help thousands of people who are currently undiagnosed and help prevent serious health complications.

Coeliac disease is a genetically determined auto-immune disease. It is a life-long condition, but is not an allergy to gluten. Symptoms are varied and can include tiredness, anaemia, diarrhoea, weight loss, vomiting, bloating, mouth ulcers, and constipation. Sufferers must stick to a strict gluten-free diet after they have been diagnosed to enable the body to heal and also to avoid further damage to the small intestine and a recurrence of symptoms.

Failure to eliminate gluten from the diet can increase the risk of osteoporosis, infertility and cancer.

The Biocard Celiac Test is being distributed by JRBiomedical, which is based in Colwyn Bay. The test can give an accurate result in just 10 minutes.

This is the first time people in the UK have had access to this potentially life-changing technology...

...The test works by analysing a pin-prick blood sample for a particular enzyme that is known to be a marker for coeliac disease. The test itself, which costs £19.99, is as easy to read as a pregnancy test and uses the same technology as that currently used to test for coeliac disease in the laboratory.

Although the Biocard Celiac Test can tell whether a person has coeliac disease, the patient must still have that diagnosis confirmed by a gut biopsy before starting on a gluten-free diet.

The self-test's main benefits lie in the fact that it can speed up diagnosis and referral to a consultant to carry out the necessary biopsy.

**************************************
Coeliac UK recently commented on this test in their July Newsletter.

The home testing kits developed by Biocard will soon be available over the counter. While we welcome a new tool that could help to get more people diagnosed we would stress that blood tests for coeliac disease are not 100% accurate and there are individuals who may have false negative results - even if they have not changed their diet.

The new self-testing kits should not replace a medical diagnosis but it may be a tool if someone is having difficulties getting diagnosed. We would still recommend that if anyone has symptoms of coeliac disease they should go to their GP.

The Biocard Celiac test is currently on sale in the UK and readers can purchase a kit from http://www.coeliactest.co.uk/ for £19.99.

**************************************
Medscape Today recently evaluated the sensitivity and specificity of two commercial kits used to screen for coeliac disease, one being the Biocard Celiac Test.

Excerpt: "Conclusions: The commercial kits described here produce high values of sensitivity and specificity, offering the general practitioner who suspects a possible case of CD the real possibility to look for anti-h-tTG antibodies in his own medical office during a standard visit at a satisfyingly low cost."

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Background: The Finnish company which developed the Biocard Celiac Test is called Ani Biotech, a biotechnology company developing, manufacturing and selling diagnostic rapid tests for laboratory, physician office and home use.

Their web site states..."Ani Biotech products are marketed and distributed by specialized diagnostic and pharmaceutical companies worldwide. The largest customers are based in Asia and Europe. Some promising steps have been taken towards the US market in 2005. Several tests are now undergoing FDA registration."

Dr John Rees, Managing Director of JRBioMedical, advised me that the Biocard tests are expanding out from Finland through Europe and JRBiomedical Ltd has the exclusive distribution rights for the UK.

Living with Dermatitis Herpetiformis

2006-08-09T22:05:00.000+01:00

What follows is based on fact together with a personal view of my own, and others', experiences of living with dermatitis herpetiformis (DH).

DH is unbelievably itchy and stings and burns until a patient usually scratches and draws blood. It seems like the pain is deep under the skin rather than a surface feeling. Often the sensations arise a day or so before the spots are actually visible. Purplish marks remain for months afterwards, even once the condition is treated. The rash can appear clumpy, in patches or as single spots and these are blistery in nature. If you look at the photographs on the DH Online Community web site you'll see that some pictures look quite different to others. Different parts of the body can highlight slightly different looking rashes and some people have milder symptoms than others, etc. The rash itself can move through different stages, sometimes being more severe than at other times, and can even appear to go into remission for a period of time. Dermatitis herpetiformis is, more often than not, symmetrical, for instance, it'll manifest on both elbows, both knees, both shoulder blades, etc.

The skin biopsy, which is performed to check for DH, is a specialized test using immunofluorescence and many sufferers can go for several years without a correct diagnosis. This can be because, either the biopsy isn't performed correctly (it should be taken from unaffected skin), the laboratory isn't experienced enough to examine the sample, or the dermatologist simply doesn't recognize it in the first place. All these factors can contribute towards making DH difficult to diagnose. It can be an anxious time when patients don't know what they have wrong with them as DH is often misdiagnosed as scabies, atopic dermatitis, eczema, hives, psoriasis, to name a few.

There seems to be some debate as to whether all DH sufferers also have coeliac disease (CD). It is the view of many specialists who have vast experience of DH, that all DH patients have some form of gut involvement, even if it's a case of increased lymphocytes in the intestine. This can sometimes be missed under a microscope and therefore the patients can be told they don't have CD. In addition, many people with DH don't experience typical CD-related intestinal symptoms, as the gut damage is often slight, and they may have negative coeliac blood results because the positivity of these correlates directly with the amount of intestinal damage. As with those who have coeliac disease, it's well worth family members of DH patients getting tested for CD - some relatives can have CD without necessarily having DH.

Once diagnosed, some DH sufferers are never told they have coeliac disease and the need to keep to a strict gluten-free diet, so they are vulnerable to the conditions which are associated with CD. These include osteoporosis, lactose intolerance (in particular in the early stages after diagnosis) and other autoimmune conditions such as thyroid disease, pernicious anaemia and diabetes. As a result, for years and years many rely upon drugs (usually dapsone), which can be prescribed to suppress the rash (but these do not heal the gut). These drugs can have nasty side effects too, including haemolytic anaemia and inflammation of the liver. Patients may also suffer with anaemia and poor nutritional status due to malabsorption. All this can improve with a gluten-free diet.

DH sufferers may be on a strict gluten-free diet for several months before there is even the slightest relief in their symptoms, unless they are taking the drugs. It can sometimes be 2 years or more before the skin is completely clear. After this, if a DH sufferer mistakenly eats gluten, there may be no apparent effect, either in the intestine or on the skin. However, damage to the villi almost certainly takes place. For others, they may find their rash flares up again. Some do say they have tummy troubles. For many, the motivation to stay gluten-free is harder than for people with coeliac disease alone. It can be tempting to pop a pill instead of restricting one's diet if intestinal symptoms are minimal or non-existent because, apart from being able to cease taking the drugs, there may seem to be no other improvement in general well-being. Having said this, not all DH patients respond to the gluten-free diet and they need to continue taking a maintenance dose of dapsone to keep the rash under control, which can be very frustrating indeed.

For some DH sufferers, there is the prospect of trying to cope with the social stigma of having a horrible looking rash on various parts of the body and forever scratching. Disturbed sleep is also very common. The gluten-free diet also has its drawbacks, both financially and socially. In the UK, diagnosed patients are eligible to receive certain gluten-free foods on prescription, which can help with the cost. However, commercially-bought gluten-free products are generally at least twice the price of equivalent standard food products. Eating out, holidays, travel, social gatherings involving food can all prove stressful and this can lead to social isolation. The situation is improving day by day as more people are diagnosed with coeliac disease and as a result, more restaurants and eating establishments are beginning to provide a gluten-free menu, albeit with limited choice.

Because DH is still relatively rare (the Coeliac UK website quotes around 1 in 10,000), sufferers can feel alone and cut-off and it's not always easy to identify one another at local coeliac group meetings. In view of this, the DH Online Community website and message boards were created to give patients the opportunity to meet online.

I feel it's important for DH sufferers to be identified as a separate group with their own needs because diagnosing and dealing with DH can be quite different to dealing with CD alone, although the general treatment, namely the gluten-free diet, is ultimately the same.

One advantage of DH (if you can say that about an illness) is that once it's been diagnosed correctly, there is usually a treatment, namely the gluten-free diet and/or drugs. Treatments for psoriasis, for example, can be a lot more hit and miss.

Annie Barnes
The DH Online Community Administrator

FSA begins consultation on loose foods labelling (UK)

2006-08-08T15:34:00.000+01:00

Source - Coeliac UK

The consultation process which is due to report in 2007 has now begun for the draft voluntary best practice guidance on the provision of allergen information for loose foods that are not pre-packaged. Coeliac UK has been involved in developing this in conjunction with the Food Standards Agency. Click here for information on the FSA loose foods consultation.

The FSA has also published the Guidance on Allergen Management & Consumer Information. This provides best practice guidance on managing food allergens with particular reference to avoiding cross-contamination and using appropriate advisory labelling (e.g. 'may contain' labelling). Click here for information on the FSA best practice guidelines.

Email subscriptions now working

2006-08-05T20:00:00.000+01:00

It has come to my attention that the blog's email subscription sign-up wasn't working properly at first but this has now been fixed. If you wish to subscribe, please try again.

Latest DHOC Mini Poll Results

2006-08-05T18:03:00.000+01:00

The results of the latest mini poll on the Dermatitis Herpetiformis Online Community web site are:

Question: DH sufferers, did you have low energy levels before diagnosis?

Answers:

Yes. My energy levels have improved since going on a gluten-free diet. - 43 votes (45.2%)

No. My energy levels were fine. - 26 votes (27.3%)

Yes. My energy levels are still low since going on a gluten free diet. - 16 votes (16.8%)

Yes. My energy levels are still low. I am not on a gluten free diet. - 8 votes (8.4%)

Yes. My energy levels have improved. I am not on a gluten free diet. - 2 votes (2.1%)

Total votes: 95

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The next mini poll question is:

DH sufferers, did you suffer classic coeliac symptoms (ie. bowel related problems) before diagnosis?

DH sufferers, click here to vote.

NIH Launches Celiac Disease Awareness Campaign for Health Care Providers and Public

2006-08-05T11:58:00.000+01:00

NIH Launches Celiac Disease Awareness Campaign for Health Care Providers and Public
July 18, 2006 News Release - National Institutes of Health (NIH)

The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease.

"We now know that celiac disease is more prevalent that previously thought - affecting nearly 1 percent of the U.S. population - and remains under-diagnosed," said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. "Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients."

Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease.

Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet.

"One of the challenges with celiac disease is the vast array of symptoms associated with the disease," said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. "We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease."

For more information about the campaign or to download any of the campaign materials, visit http://www.celiac.nih.gov/. For more information about the consensus development panel's recommendations, visit http://consensus.nih.gov/2004/2004CeliacDisease118html.htm.
The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans.

The National Institutes of Health (NIH) - The Nation's Medical Research Agency - includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov/.

A good way to improve diagnosis?

2006-08-05T10:40:00.000+01:00

Source - August eXG: Coeliac UK Newsletter

Researchers in Italy have developed an approach to help improve early identification of coeliac disease. The strategy involved testing patients with pre-defined signs and symptoms plus those in at-risk groups, such as relatives of coeliacs and those with auto-immune diseases associated with coeliac disease. The researchers worked with a total of 129 primary care doctors, who used the strategy to identify patients who should be tested for coeliac disease.

The year before the study started the prevalence of diagnosed coeliac disease was 1:1506 in adults and 1:827 in children. This was significantly improved during the year of the study and continued to improve for the following year, to increase the diagnosed prevalence to 1:832 in adults and 1:602 in children.
The case findings show that with a defined strategy set out for primary care doctors to follow, it can clearly improve diagnosis rates.

Berti I et al. Coeliac disease in primary care: Evaluation of a case-finding strategy. Digestive & Liver Disease 2006;38(7):461-7

XII International Celiac Disease Symposium 2006

2006-08-04T17:14:00.000+01:00

This is a notice from the Celiac Disease Center at Columbia University who are hosting the XII International Celiac Disease Symposium 2006.

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November 9-11, 2006
Hilton NY Hotel
New York, NY 10019

We're looking forward to your participation in what will be largest gathering of celiac experts in the world. The XII International Celiac Disease Symposium is expected to attract healthcare industry leaders, clinicians, nutritionists, patients, diagnostic and pharmaceutical executives, scientists, policy makers and journalists and will touch on every aspect of adult and pediatric celiac disease - diagnosis, treatment, science and public policy. Register before August 15, 2006 to receive the early registration rate...

Program
There are three programs to select from:

International Symposium
This is a scientific program designed for physicians and scientists. This program is AMA and ADA approved with 18.75 hours of category 1 CME credit.
http://www.celiacdiseasecenter.columbia.edu/symposium/program_symposia.html

Clinical Forum
This program is designed for patients, dietitians, nurse practitioners, nurses, physician's assistants and others in the healthcare arena who would like to enhance their knowledge of the most current research and developments in patient care in the field celiac disease. This program is AMA and ADA approved with 19.5 hours of category 1 CME credit.
http://www.celiacdiseasecenter.columbia.edu/symposium/program_clinical.html

Connecting Teens With Celiac Disease
Connecting Teens With Celiac is an interactive, educational program that is designed for teens that are 13-18 years of age and have been diagnosed with celiac disease or are a first or second degree relative or friend of someone who has been diagnosed with celiac disease.
http://www.celiacdiseasecenter.columbia.edu/symposium/program_teens.html

Register NOW!
Register before August 15, 2006 to receive the early registration rate...
http://www.celiacdiseasecenter.columbia.edu/symposium/attendee_categories.html

Housing
Rooms are still available at our $285 reduced rate at the Hilton NY Hotel where the symposium will be held. The rooms will go quickly--reserve now!
http://www.hilton.com/en/hi/groups/personalized/nycnhhh_icd/index.jhtml#reservation

For additional information visit us online at http://www.celiacdiseasecenter.columbia.edu/symposium/index.html

We're looking forward to seeing you in November at the XII International Celiac Disease Symposium!

All the best,

Celiac Disease Center at Columbia University
180 Fort Washington Avenue
Suite 934
New York, NY 10032
Tel. (212) 342-4529
Cell (646) 812-1212
Fax (212) 342-0447
Email: cb2280@columbia.edu

XII International Celiac Disease Symposium
http://www.celiacdiseasecenter.columbia.edu/symposium/

Understanding The Immune Response To Forbidden Foods In Celiac Disease

2006-08-04T16:24:00.000+01:00

MediLexicon
30 Jul 2006

Individuals who suffer from the chronic autoimmune condition celiac disease possess serum antibodies to gluten, a protein found in wheat, barley and rye, causing a wasting away of the small intestine and poor absorption of nutrients. Currently, the only effective treatment is the life-long elimination of gluten from the diet. Antibodies to the enzyme tissue transglutaminase are found in an overwhelming majority of cases, and cross-react to gluten. This reaction occurs almost exclusively in patients with the human leukocyte antigen types HLA-DQ2 and HLA-DQ8. Over 95% of celiac patients carry 1 or 2 of the HLA-DQ2 or HLA-DQ8 genes.

In a study appearing online in July, in advance of print publication in the August issue of the Journal of Clinical Investigation, Ludvig Sollid and colleagues from the University of Oslo used intestinal T cells from celiac patients to locate DQ2 and DQ8 binding sites (known as epitopes) within 2 gluten proteins - alpha-gliadin and gamma-gliadin. The authors show that DQ2 and DQ8 are preferentially triggered by deamidated peptides and have a preference for binding to negatively charged residues in the gluten proteins. In addition, the authors examine the similarities and differences between peptides recognized by these two molecularly distinct DQ molecules and their association with disease susceptibility. These insights will aid our understanding of the immunopathology of celiac disease and are broadly relevant to the mechanisms of immune recognition at work in other autoimmune diseases.

Welcome to the new DHOC Blog

2006-08-04T16:11:00.000+01:00

For subscribers to the old DHOC mailing list, many will know that it has been far too long since I sent out the last DHOC Newsletter. The main difficulty for me has been the time factor and so, in a bid to overcome this dilemma, I have decided to dispense with the newsletter and start up a new blog instead. And here it is!

What's a blog, I hear some of you asking. Well, in simple terms, a blog is a web site or section of a web site, where you can write stuff on an ongoing basis. New stuff shows up at the top, so visitors can read the latest news. The subject can be anything you want it to be. I've decided to use mine to post articles of interest for people with DH and coeliac disease and to communicate notices to you, my web site visitors.

Why will this save me time? Well, instead of putting together a complete newsletter, I can post articles one-at-a-time, and you can be kept updated on a regular basis.

If you want to receive regular updates, you will need to subscribe to the web feed or sign up for email notifications. These options are available on every blog page in the right hand column.

For more on web feeds, try the following link:
http://computing-dictionary.thefreedictionary.com/syndication+format?p

And so... as they say, "as one door closes, another one opens", I hope you'll decide to join up to the new DHOC Blog.

All the best.

Annie (DHOC Admin)