Fascinating, any chance you could do one on B27. I knew about the uveiitis and the joint pain, and was pretty pleased with myself for getting biologic treatment as soon as it attacked (I was tested as a child and always knew I was positive) But because my symptoms completely remitted on Humira I got a bit lax about the injections, and blow me if a month ago I didn;t have a lacunar stroke. All better now and super strict BP control etc, but I get so cross at this nonsense that B27 is harmless or even good for you unless you have AS when suddenly it is terrible and takes 15 years off your life. And wouldn't you know it men are far more likely to have AS and be taken seriously, women just have a life of autoimmunity/inflammatory issues oh yes and attacking your own brain small vessel endothelium. I run an ADHD clinic and turns out 20-25% of people (usually women) with hEDS (huge comorbidity with ADHD) are B27+ve. I really think that a good unbiased dive might save more people losing bits of their brains like me. Thanks for this (suspect ADHDers likely have more coeliac too)
that's fine...except that the antibodies created in celiac disease are not antibodies to gluten. They are antibodies to the enzyme that breaks down gluten. Unfortunately, that enzyme breaks down many other proteins, all over the body. True celiac disease is a whole-body disease, and attacks occur in other organs. Those patients may be very sick indeed.
Antibodies originating in the intestines are usually IgA antibodies...they have a different stem molecule from the IgG antibodies that are made in most other tissues. The tests for antibodies to the enzyme are tests for IgA, and on rare occasion the blood tests for celiac disease come out false negative if a person has a defect in the ability to make IgA antibodies.
The presence of antibodies specific to gluten itself...antibodies that don't attack other proteins....does not constitute celiac disease. It may give GI symptoms (cramping and diarrhea) if huge amounts of antibodies are released all at once. However, there is no gluten in the rest of our body, and those anti-gluten antibodies don't attack anything in the rest of the body.
Interesting to note that some diagnoses take years to reach despite multiple autoimmune disorders. My son was diagnosed in 1993; he was 2 1/2. If my husband had not been an Internal Medicine physician (trained to diagnose adults), I am not sure our son would have been diagnosed. A happy, healthy baby suddenly became miserably colicky when he started eating solid foods. His pediatrician shrugged it off as "manipulative behavior" until our son fell from 90th percentile to 10th on growth and weight charts. We finally got a diagnosis and I became a gluten sleuth. Our son recovered his health, learned to enjoy all kinds of (gluten free) food, and returned to a normal growth and weight.
Can we please call it Celiac Disease, though? We all have celiac, but not everyone has a disorder or disease affecting that part of the body.
I’d be interested in more commentary on whether there’s a threshold for the amount of gluten to trigger autoimmune responses or symptoms. I’m a paediatrician who had coeliac disease diagnosed over 20 years ago and been on GF diet since with TTG always very low having initially been in thousands. I’ve heard about people reacting to bread in fryer as you mention particularly from colleagues who look after type 1 diabetes. However this isn’t me & I was advised by a researcher on coeliac vaccines that 10mg was threshold. There’s also the divergence of opinion about oats - oats do not seem to be an issue for me but have developed small fibre peripheral neuropathy in last few years - mild & stable but all investigations negative so association with CD seems likely. Could more rigid gluten avoidance of the separate toaster variety be of benefit?
It’s frustrating that there aren’t stricter laws here in the US about food labels. So many foods list “natural flavor” as an ingredient, making it impossible to assess whether it’s gluten free. This is an issue for many people on strict diets or who have allergies not just celiacs, and needs to be changed. Most people who read all the ingredients aren’t being trendy, they are trying to stay alive.
There are clinical trials for celiac disease utilizing the IL-2 (Interleukin-2) blood assay, which detects gluten-specific immune cells within hours of exposure. This test assesses one's gluten response by measuring immune biomarkers in the blood.
I also found this:
"The investigational study drug, FB102, is a monoclonal antibody. It is designed to block signals the immune system sends when it detects gluten. Blocking these signals may prevent inflammation and damage in the small intestine caused by gluten ingestion in people with celiac disease."
I struggled for a very long time, even being told by a gastroenterologist that my persistent issues were caused by an E. coli infection then later he told me it was IBS, and that I didn't have celiac disease.
It saddens me to see people making fun of those who avoid gluten, as if celiac disease is a lifestyle choice.
I’m not sure I follow your last comment. Is the implication that we are making fun? The whole point here is to raise awareness about this disease which as you know can be a challenge to diagnose and manage. It’s important to distinguish between a food sensitivity and an autoimmune condition because there are very real systemic effects of the autoimmune disease that often require treatment and support.
Oh, no, not you. I've read and heard people make statements that gluten sensitivity / allergy / celiac disease is made up so medications can be sold. Or that its a fad. Or its a diet of choice. It seems those of a more extremely polarized conservative mindset fall into that category (like Infowars). There was even a sign at a local auto shop making fun of us.
I understand your perspective here but celiac isn’t a gluten sensitivity- that’s the whole point. It’s an autoimmune disease that attacks an enzyme produced by your body. That’s a distinct biological process as compared with a food sensitivity.
My mother was told by my brother's (born 1959) pediatrician that he had celiac, and was told he'd "grow out of it". And so he did, or seemed to, until he was in his 50s, when he began testing anemic. Upper and lower endoscopies failed to find a source of his presumed bleeding. He hadn't outgrown his celiac.
This was a good read! I was diagnosed in 2004- thankfully it only took 1.5 years to figure out what was causing my issues due to a provider who was well educated! A few years ago my family did some of ancestry and genetic testing and, sure enough, I have one of the celiac variants and so do my 2 sons AND my husband! One of sons has active celiacs now. I must say I’m getting very worried about all the companies starting to promote their products using “gluten free” wheat starch, saying they’re safe for celiac sufferers. Maybe for those with mild sensitivity but anyone diagnosed with celiacs really need to stay away from it. And those with wheat allergies need to be extra cautious and check ingredients on gluten free products!
So glad you liked this article. We tried to encompass the science and the challenges beyond as well. I hope you and your family have the support and care that you need to thrive without gluten. I know it can be challenging. Thanks for sharing your story!
Rebecca - I agree that Celiac is very misunderstood, which is why we wrote the article. It is important to raise awareness and to acknowledge that it is a tough disease in so many ways. One of my daughters friends has Celiac and I see her struggle to read all the labels and opt out of eating if she can't tell if gluten is in the mix. I hope you are getting the support you need. Thanks for sharing your story.
Fascinating, any chance you could do one on B27. I knew about the uveiitis and the joint pain, and was pretty pleased with myself for getting biologic treatment as soon as it attacked (I was tested as a child and always knew I was positive) But because my symptoms completely remitted on Humira I got a bit lax about the injections, and blow me if a month ago I didn;t have a lacunar stroke. All better now and super strict BP control etc, but I get so cross at this nonsense that B27 is harmless or even good for you unless you have AS when suddenly it is terrible and takes 15 years off your life. And wouldn't you know it men are far more likely to have AS and be taken seriously, women just have a life of autoimmunity/inflammatory issues oh yes and attacking your own brain small vessel endothelium. I run an ADHD clinic and turns out 20-25% of people (usually women) with hEDS (huge comorbidity with ADHD) are B27+ve. I really think that a good unbiased dive might save more people losing bits of their brains like me. Thanks for this (suspect ADHDers likely have more coeliac too)
Such a well written comprehensive article! Thank you for expanding my knowledge base regarding this disease.
Fantastic content, well presented and thorough. Well done!
that's fine...except that the antibodies created in celiac disease are not antibodies to gluten. They are antibodies to the enzyme that breaks down gluten. Unfortunately, that enzyme breaks down many other proteins, all over the body. True celiac disease is a whole-body disease, and attacks occur in other organs. Those patients may be very sick indeed.
Antibodies originating in the intestines are usually IgA antibodies...they have a different stem molecule from the IgG antibodies that are made in most other tissues. The tests for antibodies to the enzyme are tests for IgA, and on rare occasion the blood tests for celiac disease come out false negative if a person has a defect in the ability to make IgA antibodies.
The presence of antibodies specific to gluten itself...antibodies that don't attack other proteins....does not constitute celiac disease. It may give GI symptoms (cramping and diarrhea) if huge amounts of antibodies are released all at once. However, there is no gluten in the rest of our body, and those anti-gluten antibodies don't attack anything in the rest of the body.
just about everything you mentioned here is mentioned in the article
Interesting to note that some diagnoses take years to reach despite multiple autoimmune disorders. My son was diagnosed in 1993; he was 2 1/2. If my husband had not been an Internal Medicine physician (trained to diagnose adults), I am not sure our son would have been diagnosed. A happy, healthy baby suddenly became miserably colicky when he started eating solid foods. His pediatrician shrugged it off as "manipulative behavior" until our son fell from 90th percentile to 10th on growth and weight charts. We finally got a diagnosis and I became a gluten sleuth. Our son recovered his health, learned to enjoy all kinds of (gluten free) food, and returned to a normal growth and weight.
Can we please call it Celiac Disease, though? We all have celiac, but not everyone has a disorder or disease affecting that part of the body.
I’d be interested in more commentary on whether there’s a threshold for the amount of gluten to trigger autoimmune responses or symptoms. I’m a paediatrician who had coeliac disease diagnosed over 20 years ago and been on GF diet since with TTG always very low having initially been in thousands. I’ve heard about people reacting to bread in fryer as you mention particularly from colleagues who look after type 1 diabetes. However this isn’t me & I was advised by a researcher on coeliac vaccines that 10mg was threshold. There’s also the divergence of opinion about oats - oats do not seem to be an issue for me but have developed small fibre peripheral neuropathy in last few years - mild & stable but all investigations negative so association with CD seems likely. Could more rigid gluten avoidance of the separate toaster variety be of benefit?
It’s frustrating that there aren’t stricter laws here in the US about food labels. So many foods list “natural flavor” as an ingredient, making it impossible to assess whether it’s gluten free. This is an issue for many people on strict diets or who have allergies not just celiacs, and needs to be changed. Most people who read all the ingredients aren’t being trendy, they are trying to stay alive.
Thank you for writing this article, Aimee.
There are clinical trials for celiac disease utilizing the IL-2 (Interleukin-2) blood assay, which detects gluten-specific immune cells within hours of exposure. This test assesses one's gluten response by measuring immune biomarkers in the blood.
I also found this:
"The investigational study drug, FB102, is a monoclonal antibody. It is designed to block signals the immune system sends when it detects gluten. Blocking these signals may prevent inflammation and damage in the small intestine caused by gluten ingestion in people with celiac disease."
I struggled for a very long time, even being told by a gastroenterologist that my persistent issues were caused by an E. coli infection then later he told me it was IBS, and that I didn't have celiac disease.
It saddens me to see people making fun of those who avoid gluten, as if celiac disease is a lifestyle choice.
I’m not sure I follow your last comment. Is the implication that we are making fun? The whole point here is to raise awareness about this disease which as you know can be a challenge to diagnose and manage. It’s important to distinguish between a food sensitivity and an autoimmune condition because there are very real systemic effects of the autoimmune disease that often require treatment and support.
Oh, no, not you. I've read and heard people make statements that gluten sensitivity / allergy / celiac disease is made up so medications can be sold. Or that its a fad. Or its a diet of choice. It seems those of a more extremely polarized conservative mindset fall into that category (like Infowars). There was even a sign at a local auto shop making fun of us.
Can you also please comment on the gluten-free trend that so many jumped upon in the 2010’s?
Perhaps the headline might be more accurate as “not JUST a gluten sensitivity”?
I understand your perspective here but celiac isn’t a gluten sensitivity- that’s the whole point. It’s an autoimmune disease that attacks an enzyme produced by your body. That’s a distinct biological process as compared with a food sensitivity.
My mother was told by my brother's (born 1959) pediatrician that he had celiac, and was told he'd "grow out of it". And so he did, or seemed to, until he was in his 50s, when he began testing anemic. Upper and lower endoscopies failed to find a source of his presumed bleeding. He hadn't outgrown his celiac.
This was a good read! I was diagnosed in 2004- thankfully it only took 1.5 years to figure out what was causing my issues due to a provider who was well educated! A few years ago my family did some of ancestry and genetic testing and, sure enough, I have one of the celiac variants and so do my 2 sons AND my husband! One of sons has active celiacs now. I must say I’m getting very worried about all the companies starting to promote their products using “gluten free” wheat starch, saying they’re safe for celiac sufferers. Maybe for those with mild sensitivity but anyone diagnosed with celiacs really need to stay away from it. And those with wheat allergies need to be extra cautious and check ingredients on gluten free products!
So glad you liked this article. We tried to encompass the science and the challenges beyond as well. I hope you and your family have the support and care that you need to thrive without gluten. I know it can be challenging. Thanks for sharing your story!
Rebecca - I agree that Celiac is very misunderstood, which is why we wrote the article. It is important to raise awareness and to acknowledge that it is a tough disease in so many ways. One of my daughters friends has Celiac and I see her struggle to read all the labels and opt out of eating if she can't tell if gluten is in the mix. I hope you are getting the support you need. Thanks for sharing your story.