• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
jhol

Any Uk People Joined Celiac Uk

Rate this topic

Recommended Posts

joined about 2 weeks ago,

 

 it took me abt 3 weeks to figure out how to join- i am a bit crap on computers though!) only joined for the food directory that you get. im finding it a bit odd. there doesnt seem to be a designated forum like on here and the "meeting room" they have( that doesnt belong to celiac uk) just seems to be questions about food. is that it - or have i just not found the correct place???

 

the other thing is - in the book it said that tesco,s own brand crunchy nut cornflakes are ok to eat. but it says contains barley malt in the indredients. ive had them twice now for breakfast and an hour later had to go to the loo!!  is barley malt considered safe - i thought it wasnt- but i could be wrong!

 

now i dont know if i should be using the book or not , any opinions welcome thanks :)  

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi jhol, Ive joined but like you find its difficult to use and its in need of a forum. The only thing Ive used it for is to try and find a local group so Ill be attending a first meeting at the weekend. They seem pretty friendly on the phone and well organised but really need a forum ..but maybe its me whos not used it properly !

Sorry I have no idea about the barley malt...I assumed it was a no-no but its still all new to me.

Share this post


Link to post
Share on other sites

Similar experience here. I got the directory, which is good, but discovered I needed a whole food diet anyway so eating naturally gluten-free. I like the magazine for research info. I agree they need an accessible forum. The helpline was useful at the start.

I do find them to be accepting of some things I have found different advice on elsewhere, I struggle with the 20ppm thing. It is a shame they get funded by food companies so much, but maybe the need for advertising makes that inevitable.

I kind of think of my subscription as more of a charity donation.

Share this post


Link to post
Share on other sites

when i joined it was free - till may i think . i,ll probably pay for the first year and see how it goes. not sure about this barley malt thing- not happy with it, so back to my very expensive small pack of organic cornflakes lol.

Share this post


Link to post
Share on other sites
Ads by Google:


Hi VeggieGal,

Yes, I'm a member of Coeliac UK too. I joined approx. 2 years ago. I wondered why they don't have a forum like on here. It seems odd for them not to have one, perhaps we should suggest it(?)

You are right about barley not being suitable for Coeliacs. Is it just their own 'regular' cornflakes? Or is it in the 'free from' isle? I only buy cereal if it's marked as gluten & wheat free, it's far safer as it won't be produced in an area where wheat & gluten produce are present.

joined about 2 weeks ago,

 

 it took me abt 3 weeks to figure out how to join- i am a bit crap on computers though!) only joined for the food directory that you get. im finding it a bit odd. there doesnt seem to be a designated forum like on here and the "meeting room" they have( that doesnt belong to celiac uk) just seems to be questions about food. is that it - or have i just not found the correct place???

 

the other thing is - in the book it said that tesco,s own brand crunchy nut cornflakes are ok to eat. but it says contains barley malt in the indredients. ive had them twice now for breakfast and an hour later had to go to the loo!!  is barley malt considered safe - i thought it wasnt- but i could be wrong!

 

now i dont know if i should be using the book or not , any opinions welcome thanks :)  

Share this post


Link to post
Share on other sites

By the way folks, membership for Coeliac UK is only free for the first six months and you need to have been diagnosed with Coeliacs disease in order to be a member. After that you need to pay per year. I think it's worth it though as you get to access other areas of the website that non-members can't, you also get up-to-date lists of gluten free foods in UK. Also, the money will also help with research.

Share this post


Link to post
Share on other sites

Hi flowerqueen,

Although I'm a free member (think i only got 4 months free) I can't say Ive used them apart from getting in touch with the local sheffield group. Ive found this site so good, quick and supportive so maybe i've just not given coeliac uk a chance yet.

Share this post


Link to post
Share on other sites

hi, 

 

there is a forum of sorts kind of connected to the site. i only found it by googling celiac uk forum - one of the sites that came up said useful links celiac uk. it brings up a page ,scroll down til u find the message board. dont know why they,ve made it so difficult to find. ive found though its mainly food based with people telling you that theyve found a bargain in aldi and such like!!!! very occasionally will someone ask a personal question!!- but thats british people for you lol god knows what they,d make of some of the threads on here ha!

 

hi flower queen. the book says most of the supermarkets own brand cereals are ok to eat even though they all contain barley malt- ive gone back to the cereal in the free from aisle.

i joined and im not celiac - i put on the questionnaire that i was gluten intolerant. having said that i was told that someone from the nearest group would be in touch - they havent. so dont know if its because im not diagnosed or if its coz im a "free member" up to yet .maybe im being a softie and should just contact them..

Share this post


Link to post
Share on other sites

Hi! Coeliac Uk is definitely good for some things. I like this forum though, as there always seems to be someone that knows something extra and usually there's someone around to reply to your questions.

Hi flowerqueen,

Although I'm a free member (think i only got 4 months free) I can't say Ive used them apart from getting in touch with the local sheffield group. Ive found this site so good, quick and supportive so maybe i've just not given coeliac uk a chance yet.

Share this post


Link to post
Share on other sites


Ads by Google:


I'm very surprised that it says it's suitable if it contains barley. If you look in the front of the directory it tells you that you must not eat it. I certainly wouldn't be prepared to risk it.

I don't think the website is manned as often as other websites. I sent them an email about something and they didn't get back to me and I'm a full member :(

Thanks for info. I will scroll down next time I visit the site to see where the forum is. I do like this one though!

hi, 

 

there is a forum of sorts kind of connected to the site. i only found it by googling celiac uk forum - one of the sites that came up said useful links celiac uk. it brings up a page ,scroll down til u find the message board. dont know why they,ve made it so difficult to find. ive found though its mainly food based with people telling you that theyve found a bargain in aldi and such like!!!! very occasionally will someone ask a personal question!!- but thats british people for you lol god knows what they,d make of some of the threads on here ha!

 

hi flower queen. the book says most of the supermarkets own brand cereals are ok to eat even though they all contain barley malt- ive gone back to the cereal in the free from aisle.

i joined and im not celiac - i put on the questionnaire that i was gluten intolerant. having said that i was told that someone from the nearest group would be in touch - they havent. so dont know if its because im not diagnosed or if its coz im a "free member" up to yet .maybe im being a softie and should just contact them..

Share this post


Link to post
Share on other sites

Yes, I joined Coeliac UK a few weeks ago.  I was so chuffed to receive the Welcome pack, I didn't really read the details of signing up as I wanted to access a part of the site only available to members.  So as I said I was chuffed to receive the Food & Drink Directory.  They sent me a Crossed Grain magazine this week, too.  Which has been a god send; as I have been home sick this week with severe tiredness, I think due to Iron deficiency (awaitng results from full blood test).

 

As for moving around the site and the forum bit, it is a bit confusing, but they say there will be a revamp of the site soon.

 

On another note Juvela sent me two loaves of bread.  Again that was a total surprise. :D

 

Off to the Coeliac Food Fair in Salisbury today B) (I'll added the details if that is ok?) :)

 

The South Wiltshire Food Fair is taking place on Saturday 29 June from 10.30am to 3pm at:

Southern Counties Auction Rooms
Salisbury Livestock Market
Salisbury Road
Netherhampton
Salisbury
SP2 8RH

For more information on this and other Local Group events, visit http://bit.ly/cukevents or email the Local Group at southwilts@coeliac.org.uk.

Share this post


Link to post
Share on other sites

Hi

I'm on coeliac uk too. Directory would be useful if I was able to eat processed food! I think coeliac UK is really behind on up to date information although obviously it's better than nothing. I'm like CM and see my membership as more of a donation/ support. I never really use the website much unless its UK food related.

Share this post


Link to post
Share on other sites

I must say I was not impressed with the Food Fair.  It was all cakes, biscuits and cereals.

 

One stall asked me to sample their bread, but did not know what was in it (dried milk powder, when I checked)  it had Country Life butter on it.  Being Lactose Intolerant, I thought I would give it a miss. :rolleyes:

 

And on top of that; the restaurant did not have gluten-free sandwiches or soya milk so I couldn't even have a cup of tea :( .

 

The one and only time I stupidly thought I could eat out and be safe...stupid, stupid, stupid (bangs head against wall).

Share this post


Link to post
Share on other sites

I must say I was not impressed with the Food Fair.  It was all cakes, biscuits and cereals.

 

One stall asked me to sample their bread, but did not know what was in it (dried milk powder, when I checked)  it had Country Life butter on it.  Being Lactose Intolerant, I thought I would give it a miss. :rolleyes:

 

And on top of that; the restaurant did not have gluten-free sandwiches or soya milk so I couldn't even have a cup of tea :( .

 

The one and only time I stupidly thought I could eat out and be safe...stupid, stupid, stupid (bangs head against wall).

 hi , 

i havent been to the site for a while, may have a look later on.the fair doesnt sound good - if you cant get gluten free at a celiac fair where can you get it?? i cant do dairy either or potato-which is in  nearly all gluten free goods.its plain wholefoods for me .

Share this post


Link to post
Share on other sites

 hi , 

i havent been to the site for a while, may have a look later on.the fair doesnt sound good - if you cant get gluten free at a celiac fair where can you get it?? i cant do dairy either or potato-which is in  nearly all gluten free goods.its plain wholefoods for me .

lol,  yes starch for me too.   I registered with Juvela, they have sent me a couple of loaves of bread and today I received a starter pack.  Which I think is really nice, I know they are promoting their products, but I still think it's nice.

Share this post


Link to post
Share on other sites

Hi I joined - I'm in Yorkshire in the UK  :)

 

I was diagnosed 8 months ago whilst I was away in NZ.  I also can't eat dairy or soya which is giving me a bit of trouble finding things.  I've just come back from being overseas so getting used to the UK supermarket choices (I ate gluten-containing foods before).  Shame about the food fair - how silly for them not to have allergen free foods in the coffee shop!!

 

Heather

Share this post


Link to post
Share on other sites

Hi heather.....welcome!

I'm from yorkshire (sheffield) and nearly 8 months into it too. Ive let my membership lapse on coeliac uk, its ok but this site has been far more valuable to me since diagnosis but I may join it again at some point. Yes I'm the same, and had to cut out dairy and soya, but there is alternatives but its finding out what works best for you. All the best . Helen

Share this post


Link to post
Share on other sites

I just had their latest magazine, and they are shortly launching an app version of their book listing gluten-free products. I quite like that idea, and it means it will be kept up to date, hopefully.

If only we could pesuade them to break it down to avoid dairy and soy, we'd be sorted :)

Share this post


Link to post
Share on other sites

Yes definately cmw! To be honest, I've got their food directory but have never used it...what do you think to it? I've 'liked' their facebook page but they recently gave questionable info about what they class as gluten free beer and my dietician said they were promoting kelloggs rice krispies as gluten-free but as far as I can tell they're not suitable ?!? Maybe I should read it and see for myself lol

Share this post


Link to post
Share on other sites


Ads by Google:


 hi , 

i havent been to the site for a while, may have a look later on.the fair doesnt sound good - if you cant get gluten free at a celiac fair where can you get it?? i cant do dairy either or potato-which is in  nearly all gluten free goods.its plain wholefoods for me .

 

The situation for those of us with fewer allergies is perhaps worse. Our most common options are packed with sugar and starch, which lead happy consumers down the path to diabetes.

Share this post


Link to post
Share on other sites

This thread is also old but I would like to contribute and corroborate the fact that coeliac uk are very behind with their information- and often inaccurate with respect to foods one can use which in other parts of world are taken to be dangerous for celiacs. They've launched their new website , but I haven't had a chance to study it in detail yet, I hope it has improved.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Who's Online   4 Members, 1 Anonymous, 1,175 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

  • Forum Statistics

    • Total Topics
      109,700
    • Total Posts
      947,220
  • Member Statistics

    • Total Members
      72,016
    • Most Online
      3,093

    Newest Member
    Blonde121057
    Joined
  • Topics

  • Posts

    • What are you eating?  Many of our DH members swear that they must eat a non-processed gluten-free diet and often have to reduce iodine temporarily (for some reason it causes issues).  Please read through our DH section.  Member SquirmingItch and Ravenwoodglass usually offer excellent advice.  You can read some of their previous postings.   Rice is safe.  Buy plain rice (not parboiled or instant just to be extra safe),  wash it three times while looking ( this is a RAW agricultural product which does have some arsenic) and cook it.  Avoid ANY gluten free grain that is not certified with the exception of rice which is not grown next to wheat, rye or barley.  NO oats at all, even gluten free oats.  Once  you get relief, you can experiment with grains.   Of course, your rash might not be DH at all. If your diet is strict, you should consider consulting with a dermatologist and find out   Exactly what you are dealing with.  
    • The celiac blood tests are good, but not perfect.  Despite a decade of researchers trying to use just the celiac antibodies tests in order to avoid the endoscopy which is more invasive, the reality is that the British and American GI Associations and all the celiac centers in the world, still rely on the endoscopy for a firm diagnosis.   There are reasons why the endoscopy may not be ordered.  You could be at death’s door and any procedure might kill you because you are so sick.  You might not have access to a GI.  You might not have insurance.  You might have very long wait times (e.g. areas in Canada).   If you can, get it.  It can set a benchmark for celiac damage.  It can also discover that you might have another concurrent illness like cancer, SIBO, H. Pylori or Crohn’s.  Odds are that you do not have cancer, but it has happened to members.   The villi can grow back in just a few weeks.  Typically symptoms can last longer usually because 1) there is a steep learning curve to the gluten-free diet and 2) damage can be systemic (e.g. neurological).   Eat gluten.  Plenty.  Between my blood tests and endoscopy, I ate all my favorite gluten filled foods.  In reality one or 2 slices of bread,  (make it fresh sourdough with blobs of sweet butter, please) should be plenty.   My gluten fling,  was a fond farewell.  
    • Reactions to alcohol may not just be autoimmune in nature, but due to a damaged gut from an autoimmune disorder.  So, hard to say what can be blamed on wine and hard liquor.  I know that when either my celiac disease is triggered or my autoimmune gastritis is flaring (no known trigger), I can not drink any alcohol.  I follow standard celiac recommendations usually sticking with wine or some vodka.   As far as Omission beer, I am going to continue to avoid it until the research is complete.  I am adhering to th Gluten Free Watchdog’s advice: https://www.glutenfreewatchdog.org/news/can-individuals-with-celiac-disease-drink-barley-based-gluten-removed-beers-such-as-omission-a-gluten-free-watchdog-special-report/ I just had a recent endoscopy that revealed a healed small intestine.  I would be interested to know that if you consumed an Omission beer daily for a few months and then had an endoscopy, what would it reveal?  
    • Well, you can always post the result here.  Include all the lab ranges.  We are not doctors, but we can read celiac lab results. Even the pathologist’s report (exact wording) would be useful.  I would definitely get a second medical opinion.  So, the biopsies revealed a lactose (milk sugar) intolerance.  Why would he NOT recommend going lactose free?  Ugh!  Take her off all dairy for a week or so.  Then start adding in dairy that has the least amount of lactose like hard cheeses or yogurt.  Those items through fermentation have had lots of the sugar removed by the bacteria.  The last bit of dairy to add back is regular milk or ice cream.   If she has celiac disease, going lactose free can help with intestinal symptoms, but the damage villi that releases the enzymes to digest lactose will still be damaged.  Once a celiac heals, they often can then digest lactose again, unless you are part of the world’s population who can not digest lactose for genetic reasons (e.g. not historically herders).   The med prescribed?  I would get a second opinion preferably from a Ped GI.  I would make sure she has a firm diagnosis for the Colitis which is commonly linked to celiac disease and may resolve on a gluten free diet.  This drug is powerful and we are talking about a kid.   So, post the results and get a second opinion.  In the meantime, get her off lactose ASAP.   I am so sorry that you both are dealing with this!  
    • I know this topic has probably been beaten to death as far as what liquors contain gluten, used to contain gluten, and have had gluten removed.   I've been gluten free for nearly 15 years now and I left alcohol alone for a long time except red wine but that time came to an end a few years ago and I am trying to put together some experiences of others to figure out what can/cannot be had, or what causes the reaction.   Has anyone ever compiled a list of what makes them react, and what does not?   I can drink Omission Lager by the 6 pack and feel perfect while I've heard tons of others have a bad reaction.  I love bourbon...I can take a sip of Makers Mark and feel terrible.  Basil Haden does OK by me.  JW Black and Blue I feel fine but Blanton's gives me fits.  Willet, Journeyman, and Angels Envy I feel fine.   Japanese whiskeys like Hibiki and Kikori(although this is 100 percent rice) I feel fine but Toki(made by the same company has Hibiki) I feel ill within 20 minutes.   Would some of you mind posting things that do/do not make you react?  I know a lot of people also forgo trying different things because of one bad experience but any info some could provide would be helpful.
  • Blog Entries

  • Upcoming Events