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Researches tried to identify whether children with positive celiac blood tests (endomysial antibodies or EmA) but negative biopsy results for celiac disease would benefit on a gluten free diet. The children suffered with gastrointestinal symptoms similar to celiac disease symptoms. The researchers found that children who continued to eat gluten had increased symptoms and worsening of their condition.Source: J Pediatr. 2010 Apr 16.The study provided evidence that children who are EmA positive have a celiac-type disorder and benefit from early treatment despite normal mucosal structure, indicating that the diagnostic criteria for celiac disease should be re-evaluated.
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23 Responses
So how does one go about getting genetically tested for Celiacs? I was given a blood test and told I was fine but still continued to have symptoms (that was about 2 years ago). These last eight months things have gotten a lot worse. I had an endoscopy and a colonoscopy and was told everything is fine, you just have IBS.
I don’t even know where to start to just see if I might be sensitive. Lately pretty much everything makes my stomach ache, gives me the runs. I’ve always had dizzy headaches and two years ago diagnosed with diabetes. It’s just so confusing.
Wendi,
Sorry to hear you are having health issues. The following article discusses the gluten IBS connection:
https://stg-gfsociety-testing.kinsta.cloud/gluten-sensitivity-causes-irritable-bowel-syndrome-ibs/
Genetic testing is very easy to do. The following link will help you find testing services.
https://stg-gfsociety-testing.kinsta.cloud/genetic-testing-for-gluten-sensitivity/
All the best
This is great news to get rid of a gold standard test that does not work. However, a person with non-celiac gluten sensitivity does not always have a positive genetic test. My 14 yr old has been gluten free for 4 years without being sick. Her genetic test was negative as well as blood testing. Maybe Enterolab has the answer with stool testing and should be looked into more.
Deb,
Most likely her genetic test was only negative for celiac genes. There are different genetic variant markers for non celiac gluten sensitivity as well. Most doctors only look for the classic HLA-DQ2 and DQ8 markers. Do you happen to know what her markers are? I can help you interpret them.
I was tested by Enterolab and had double HLA-DQ1 genes. Did not get better on a gluten free diet until I gave up all grains. After many years of illness, I am finally returning to good health once again by going grain free.
from Australia –
Genetic testing misused for coeliac disease
by Michael Woodhead
Patients are being misdiagnosed with coeliac disease on the basis of inappropriate genetic testing, clinicians warn this week.
Writing in the MJA (192: 477-478), gastroenterologist Dr Neil Porter and colleagues at the John Hunter Hospital in Newcastle, NSW say they are seeing a worrying trend of practitioners using a positive result from coeliac disease genotyping to confirm coeliac disease, when the test should only be used to exclude the disease.
The cite one case in which a 42-year-old woman with nausea and lethargy was diagnosed with coeliac disease and was referred to a dietitian to commence a gluten-free diet, after a genetic test for the HLA-DQ gene detected genotype susceptibility for coeliac disease. The doctor has been told by a lab representative that this was now the best test for coeliac disease.
However, further testing showed she had normal IgA and IgG transglutaminase antibody (TGA) levels and normal iron, folate and IgA levels. Gastroscopy and duodenal biopsy also ruled out coeliac disease.
The authors say coeliac disease genotyping is increasingly requested under the misconception that a ‘genetic’ test must be a more reliable detector of disease than other tools. While the HLA risk genotype is necessary for development of CD, 20% of Australians share this risk factor, but only 5% of these express coeliac disease, they note.
Serological testing and biopsy confirmation of gluten-responsive bowel changes are still the gold standard for diagnosing coeliac disease, they say.
“We recommend that coeliac disease genotyping be confined to its negative predictive role,”, they conclude.
http://www.6minutes.com.au/articles/z1/view.asp?id=515707
WHICH makes life difficult for us, because if the biopsy is ? normal and the basic testing shows nothing then TOO BAD its all in your head!
Don’t even get me started!
dealing with the same thing daughter still sick on GF diet must be in her head I’VE HAD IT WITH THESE DOCTORS you get paid a fortune and you don’t have a clue
I’m 13 I have the common symptoms as well some unusual ones (like asthma that isn’t helped with ventlin) my doctor says this could all be celiac. My Nana has celiac disease and my Mum is defiantly gluten sensitive but might not have celiac she hasn’t been tested yet. My blood test came back negitive so I’m having an edsocopy and biopsy tomorrow, I know the biopsy isn’t that reliable but neither is the blood test a test can never be 100% accurate. I suggest do your own research and go get referred if you can the general doctors sometimes have no clue with the unusual cases. At least I have become a bit of a biology nerd from this!
I feel like that a lot just hang in there and become your doctor really. I’m not saying self diogonise yourself that is foolish but get to know why is happening and why better come up with theories an ficus them with your doctor I wish for all the best for your daughter.
In an allergy test for wheat, I tested HIGH. I immediately went gluten-free and have not had a migraine headache since that time (Mid-March).
Annette
Was dx about 3 yrs ago. Was getting sick every time I would eat. Getting diahrea, tired all the time, could not focus. Doctor took colonoscopy,endoscopy and said my vili was all down and should have been up. He dx me with celiac disease. Put me on a gluten free diet. I started it right away. The diahrea stopped and I started feeling alot better. The minute I start to cheat, I start feeling sick again.
My blood tests and biopsy were negative but self impossed a gluten diet, which stopped all the bloating and pain caused by being bloated and have been relatively fine since. However, I would occasionally have a day or two where I would get bloated and then it would go again? I realised that it was happening after I had eated some gluten free bread, normally on a Saturday morning in the form of a bacon butty. I have since cut all bread from my diet, including GF and have been fine ever since. I had previously noticed that yeast extract (marmite etc) was upsetting my guts and had excluded that at the start of my self imposed diet and strongly believe that it has something to do with the Yeast, which is why GF bread was still causing me problems.
About a year ago, I tested slightly high for antibodies, had a negative biopsy and extremely high risk of celiac disease on Prometheus gene test. I had been diagnosed throughout the years with IBS but nothing I tried made my symptoms any better. My new gastroenterologist was the one who suggested I get tested for celiac disease, and even though my biopsy was negative and my antibodies weren’t through the roof although not normal, after my gastro saw the results of the gene test, she told me to just assume I have gluten intolerance and stop eating gluten. Because I felt so much better after going gluten free, I have followed her advice for over a year and could never go back to eating gluten. I don’t have any problems with corn or gluten free bread or pasta. The only time I have a reaction is when I eat yogurt with gluten free granola, but it’s not really too bad and nothing like when I used to eat something like turkey on rye for lunch. Anyone who feels better eating gluten free should just eat gluten free. Simple as that. Don’t let old-fashioned thinking from doctors dissuade you from feeling better.
Fructans*
Excuse the spelling mistakes above. Autocorrect.
I have been very sick (mostly unable to do day to day things) for 2 years. Been to several doctors and no one knows what’s wrong with me. Because of this, I decided to have genetic testing done. It says that I do have the Celiac marker. I went to my doctor with this information and she informed me that I had had a biopsy done for Celiac 10 years ago and it was nagarive. She said that in no way do I have it due to that test. (They hadn’t told me they were testing it during my scopes). So I continued eating gluten. I recently developed brown at the bottom of some of my teeth. I googled and it said it’s a common symptom of Celiac. Could my negative results have possibly changed? I have almost every single symptom of Celiac.
Jennie,
The traditional testing for celiac disease is often inaccurate. Here is an article on that topic.
If you strongly suspect a gluten sensitivity I would highly recommend changing your diet.
1. Check out this page. It contains a list of gluten and the hidden terms commonly used for gluten on food labels.
2. Follow the 30 diet protocol in No Grain No Pain.
Let me know how you do.
All the best,
Dr. Osborne
Hello, I have been with joint pain for many, many years. After doing testing a year ago I found out I was allergic to dairy. That solved my eczema, constipation, stomach pain, acid reflux and some allergy symptoms. However, my joint pain did not get any better. Some of my blood work revealed red flags and was told to do an Upper GI. My blood work while on gluten was IGA 253 and Tissue Transglutaminase Antiobody IgA was 43.
The GI came back negative for Celiac and was told not to worry about being gluten free. I then went to see a Rheumatologist that specialized in auto immune diseases. He questioned the slightly higher blood work. I went gluten free for 7 weeks and Gliadin Antibody IgG was 23 units and Gliadin Antitbody IgG , deaminated was 7 units. He said that something doesn’t seem right but was not sure. He said to see a GI…he only specialized in autoimmune. I was a bit confused as I though Celiac was an autoimmune disease. So neither Dr. have given me any answers. I am wondering if I should be gluten free and how serious I should be on the diet. Are there other types of Dr. that are more knowledgeable?
We’re looking for a doctor who will diagnose Celiac based on overwhelmingly positive blood results. There is no need for biopsy in this circumstance. Any referrals?
Ben,
It is not typical. Unfortunately, the gold standard of care for celiac diagnosis is biopsy. Doctors are not likely to make a diagnosis of celiac disease without one. Your best bet would be a pediatrician who will listen and take a proactive stance.
All the best,
Dr. O