Cyrex, EIM's of Celiac and the Food Intolerance Question
There's a fascinating article today from Gluten Free Watchdog about food intolerance or cross reactivity with gluten in the Celiac population. While the subject of that article was focusing on cross reactive foods, there is another aspect of the study that got my attention, they also tested various tissues (parts of the human body) for cross reactivity.
What they were trying to show was how often a gluten antibody was attaching to these tissues. We don't know exactly, in every case, what it means that the antibody attaches to these tissues, but if you look at it through the lens of extra-intestinal manifestations of Celiac, it could provide some clues of where to look for biochemical reactions that affect people with Celiac.
The commonly recognized therapy for these disorders is a gluten-free diet (GFD). However, the response to a GFD is poor in up to 30% of patients, and patients may exhibit persistent or recurrent symptoms [5]. Reference
I'm still struggling after 18 months to maintain a good level of energy and low levels of flu like symptoms. My FODMAP tolerance went up, and then, went away again. My tolerance of histamine foods like probiotic yogurt or sauerkraut continues to be in question. I'm trying to separate my ME/CFS symptoms from my Celiac symptoms, and my Arthritis symptoms. Currently, I'm walking with a stoop because my arthritis acts up when I have a gut infection (taking antibiotics for that). If I forget to eat liver, I get pains in my upper right quadrant of my abdomen. My triglycerides are high, at a point where my pancreas is likely to be affected. In short, I'm struggling.
So that's my interest in the extra-intestinal manifestations of Celiac. I'm guessing the longer you go undiagnosed, the more likely it is that the GFD will be less than a complete solution. Other organs will become affected and it won't be so simple. Yet so often we're told that the only thing we need is to avoid gluten. OK, that's a hard prescription, so I can understand not telling people that there's a good chance it won't be enough.
So what were these tissues that they tested? Let's look at it graphically and discuss.
I want to be as conservative as possible when discussing this so I've chosen to modify their data chart with a very conservative line showing only the highlights of cross reactivity with body tissues. It looks like they had a line drawn but they removed it and their line was much lower than mine. So I'm fairly safe in saying that things which touch my threshold are very likely to be affected by Celiac. What we're looking at is this process:
1. You eat gluten.
2. Your body makes antibodies to it.
3. These antibodies also bind to other parts of your body.
4. This may or may not have a bad effect on that body tissue.
5. It's well established that the thyroid and pancreas are affected in Celiac, so they had to be included when I drew my line.
But look at what else is showing up, touching that conservative line I drew.
Parietal - while they could be referring to the parietal lung envelope, I think the rest of the tone of the article is indicating the parietal lobe of the brain where sensory information is processed.
Intrinsic Factor - without which you cannot absorb any iron, not even from steak.
Thyroid peroxidase - a test called TPO is used to find out if you have autoimmune hypothyroidism. It targets this molecule.
Adrenal - hmm, how many times have you found yourself on an "adrenal fatigue" article, and then talked yourself out of it thinking, "Nah, science based medicine says that's a scam." Eh, maybe not. Maybe we just need to look more carefully.
Myocardial... - hey wait... that's the heart muscle!
Ovarian and Testes - both of these are bonding to the gluten antibody, does anything happen as a result? I honestly don't know, but it's disturbing.
Osteocyte - this is a bone cell, do Celiacs have a higher rate of Osteoporosis?
Hepatocyte - this is a liver cell. Well besides that I have specific liver issues which get much worse if I am glutened, this link seems to be real too.
Islet cells - these are the cells that produce insulin, if they die, you are Type 1 Diabetic and totally dependent on insulin to survive.
GAD-65 - a biochemical that your pancreas needs, and which can be targeted by autoimmune responses.
Myelin basic protein - Myelin is destroyed by an "unknown process" in Multiple Sclerosis. My own guess is that MBP is used to attempt to heal the nerves during active MS, but it's not something proven.
Asialoganglioside - this is under intensive research judging by the number of companies offering antibodies for it. It seems to be involved in autoimmune neuropathies, but you might want to discuss that with a neurologist. If eating gluten can cause it to be attacked, then... I just ran out of speculation, but it probably isn't good.
Cerebellum - if this is damaged, clumsiness results, I definitely have this symptom. I used to be the type who could catch something falling off a counter in mid air. I've lost this ability, though I'm not sure if my clumsiness is actually harmful yet.
Synapsin - This is another theoretical one, its function is not fully understood. However, if you remove the gene for it from mice (Synapsin TKO mice), they develop adult onset epilepsy and may be used to study epilepsy. It keeps the neurotransmitters balanced, we think. And it works together with BDNF to create new connections in the brain.
All of this shows that we need to do much more research and for those connections that can be proven, they should be treated exactly as manifestations of diabetes are. Today it's assumed that a doctor checks your circulation and your eyes, among other things, with diabetes. Diagnostic, monitoring and treatment plans for people who are Celiac and show signs of these other manifestations should be established similarly. We're still in the middle ages of Celiac treatment. We have nothing proven except the Gluten Free Diet, and even that is not enough for some.
We're just getting to the point where new guidelines say that doctors should check thyroid function along with Celiac disease screening (and the reverse), and if someone develops Type 1 Diabetes they should be tested for Celiac. But it seems like we need more than that. A Migraine diagnosis should probably include a Celiac screening too. A neurological disease diagnosis should also include Celiac screening.
I imagine the early days of diabetes treatment were like this too. Overwhelming, seemingly endless, and bewildering. But we did it before and can work these problems out.
What they were trying to show was how often a gluten antibody was attaching to these tissues. We don't know exactly, in every case, what it means that the antibody attaches to these tissues, but if you look at it through the lens of extra-intestinal manifestations of Celiac, it could provide some clues of where to look for biochemical reactions that affect people with Celiac.
I should also say that there is a lot of antipathy toward Cyrex because they provide multiple food allergy tests usually used in functional medicine to help identify problem foods for people. These food allergies are not the IgE type which cause anaphylaxis, but IgG, more of an immune reaction. This method is not universally accepted, but it's been around for over 40 years according to Cyrex. There's a woman who claims to have cured her arthritis based partly on this kind of testing. I really don't think she's making it up, but we live in a skeptical world.
antigen - something that causes an immune reaction
antibody - when there is an immune reaction, this is produced to direct the immune response to the antigen
So what happens is an antigen(gluten) causes the body to react by producing an antibody. The antibody attaches to the antigen, and meanwhile the Lymph system produces more blood cells such as T-cells that destroy antigens. Once the immune cells mature they go find their targets and destroy them. This research was looking for other things that the antibody could attach to, besides gluten.
I admit I'm not very good at avoiding things that may be cross reactive. I eat dairy and corn, which are both no-nos for a lot of people with Celiac. I did give up dairy for a while, but I went back to it. Now it seems I'm reacting to corn, so I'm avoiding it, though sometimes that's impossible for me. I'm no angel when it comes to avoiding all grains either. So while there is disagreement among scientists about whether or not certain foods cross react with the gluten antibody (the immune response to gluten), this part of the article got my full attention:
"
The commonly recognized therapy for these disorders is a gluten-free diet (GFD). However, the response to a GFD is poor in up to 30% of patients, and patients may exhibit persistent or recurrent symptoms [5]. Reference
"
I'm still struggling after 18 months to maintain a good level of energy and low levels of flu like symptoms. My FODMAP tolerance went up, and then, went away again. My tolerance of histamine foods like probiotic yogurt or sauerkraut continues to be in question. I'm trying to separate my ME/CFS symptoms from my Celiac symptoms, and my Arthritis symptoms. Currently, I'm walking with a stoop because my arthritis acts up when I have a gut infection (taking antibiotics for that). If I forget to eat liver, I get pains in my upper right quadrant of my abdomen. My triglycerides are high, at a point where my pancreas is likely to be affected. In short, I'm struggling.
So that's my interest in the extra-intestinal manifestations of Celiac. I'm guessing the longer you go undiagnosed, the more likely it is that the GFD will be less than a complete solution. Other organs will become affected and it won't be so simple. Yet so often we're told that the only thing we need is to avoid gluten. OK, that's a hard prescription, so I can understand not telling people that there's a good chance it won't be enough.
Also, if you tell people that, they might decide to cheat because it seems hopeless. Don't do that, think of the GFD as a good foundation to build on instead.
"
The demonstration of cross-reactivity between α-gliadin 33-mer peptide antibodies with various tissue antigens is important to show that celiac patients have an increased risk for various autoimmunities, and a gluten-free diet may not be sufficient to prevent the progression of autoimmune processes. Indeed, in a very recent study, a one-year follow-up revealed that the gluten-free diet was not enough to reverse autoimmune atrophic thyroiditis, which was demonstrated by ultrasound find- ings, thyroid function tests or thyroid autoantibodies [52].
"
So what were these tissues that they tested? Let's look at it graphically and discuss.
 |
| Reference |
I want to be as conservative as possible when discussing this so I've chosen to modify their data chart with a very conservative line showing only the highlights of cross reactivity with body tissues. It looks like they had a line drawn but they removed it and their line was much lower than mine. So I'm fairly safe in saying that things which touch my threshold are very likely to be affected by Celiac. What we're looking at is this process:
1. You eat gluten.
2. Your body makes antibodies to it.
3. These antibodies also bind to other parts of your body.
4. This may or may not have a bad effect on that body tissue.
5. It's well established that the thyroid and pancreas are affected in Celiac, so they had to be included when I drew my line.
None of this is proof of disease process, it's a clue map, a springboard for more research.
But look at what else is showing up, touching that conservative line I drew.
Parietal - while they could be referring to the parietal lung envelope, I think the rest of the tone of the article is indicating the parietal lobe of the brain where sensory information is processed.
Intrinsic Factor - without which you cannot absorb any iron, not even from steak.
Thyroid peroxidase - a test called TPO is used to find out if you have autoimmune hypothyroidism. It targets this molecule.
Adrenal - hmm, how many times have you found yourself on an "adrenal fatigue" article, and then talked yourself out of it thinking, "Nah, science based medicine says that's a scam." Eh, maybe not. Maybe we just need to look more carefully.
Myocardial... - hey wait... that's the heart muscle!
Ovarian and Testes - both of these are bonding to the gluten antibody, does anything happen as a result? I honestly don't know, but it's disturbing.
Osteocyte - this is a bone cell, do Celiacs have a higher rate of Osteoporosis?
Hepatocyte - this is a liver cell. Well besides that I have specific liver issues which get much worse if I am glutened, this link seems to be real too.
Islet cells - these are the cells that produce insulin, if they die, you are Type 1 Diabetic and totally dependent on insulin to survive.
GAD-65 - a biochemical that your pancreas needs, and which can be targeted by autoimmune responses.
Myelin basic protein - Myelin is destroyed by an "unknown process" in Multiple Sclerosis. My own guess is that MBP is used to attempt to heal the nerves during active MS, but it's not something proven.
Asialoganglioside - this is under intensive research judging by the number of companies offering antibodies for it. It seems to be involved in autoimmune neuropathies, but you might want to discuss that with a neurologist. If eating gluten can cause it to be attacked, then... I just ran out of speculation, but it probably isn't good.
Cerebellum - if this is damaged, clumsiness results, I definitely have this symptom. I used to be the type who could catch something falling off a counter in mid air. I've lost this ability, though I'm not sure if my clumsiness is actually harmful yet.
Synapsin - This is another theoretical one, its function is not fully understood. However, if you remove the gene for it from mice (Synapsin TKO mice), they develop adult onset epilepsy and may be used to study epilepsy. It keeps the neurotransmitters balanced, we think. And it works together with BDNF to create new connections in the brain.
***
All of this shows that we need to do much more research and for those connections that can be proven, they should be treated exactly as manifestations of diabetes are. Today it's assumed that a doctor checks your circulation and your eyes, among other things, with diabetes. Diagnostic, monitoring and treatment plans for people who are Celiac and show signs of these other manifestations should be established similarly. We're still in the middle ages of Celiac treatment. We have nothing proven except the Gluten Free Diet, and even that is not enough for some.
We're just getting to the point where new guidelines say that doctors should check thyroid function along with Celiac disease screening (and the reverse), and if someone develops Type 1 Diabetes they should be tested for Celiac. But it seems like we need more than that. A Migraine diagnosis should probably include a Celiac screening too. A neurological disease diagnosis should also include Celiac screening.
I imagine the early days of diabetes treatment were like this too. Overwhelming, seemingly endless, and bewildering. But we did it before and can work these problems out.
