This May Well Be The Answer

[strack2004]

Red345, I am wondering now about all the otc things I take in the morning. Apparently I will be unable to tell whether or not any of them have msg in them. I recall that on the day I had my cholesterol checked I had not eaten breakfast and had my test at 9 a.m. I had taken my lunch along since I planned to drive on to another town after the test to shop. I don't eat in restaurants since I am on a celiac diet. I had 2 hard-boiled eggs , a container of cooked carrots and several bananas along . I did not bring my otc's along. That day I felt good all day. Even my right foot didn't hurt as much as usual and my upper right under the ribcage burning was not bothering me. Now I think I will try cutting out my otc's again and see what happens. Don't like to be without my vitamins and my Glucosamine-Chondroitin, etc. for long, but would like to see what happens. The glucosamine stuff is for my body aches. I think I can tell the difference when I don't take it. The name of it is so similar to the things you are talking about that it makes me wonder about that, too. I hope you did not mean to sign off from this message board altogether. Cheers, RuthS.

[Deby]

Last year our local support group had a presentation pertaining to celiac disease as it relates to other autoimmuin diseases. The general gist was that if a person had celiac disease that went untreated, then the person was more likely to develop other autoimmuin diseases. I don't know your mother's history, but I had undiagnosed celiac disease for 15 years. Since I had atypical symptoms, and doctors really didn't test for celiac disease now and especially 15 years ago, I now have other autoimmune troubles cropping up like RA and boarderline type 1 diabeties. Just for the record, I ate whole grains, 100% whole wheat everything, lots and lots of fruit and veggies, was a real health nut. I never took beta blockers. After going gluten-free, I researched which flours had the best mix of flavor and fiber. I still eat fruit and veggies every day. However, my cholesterol is on the rise, not much, but I'm premenopausal and am sure that has a role. I try to be careful with cholorestol now and have upped my soy intake to compensate.

My boys on the other hand have absolutely no difficulties having been diagnosed right off as soon as the antibodies came up (they were in a celiac study) Their doctor anticipates no complications as long as they stay gluten-free.

Is it possible that your mother was celiac disease and asymptomatic for several years and is now reaping cummulative effects???

Just tossing out a thought.

[Deby]

I wanted to answer your question regarding acholisim and mental disorders. My grandfather (maternal) was an alcholic. My two older brothers are as well, though they would deny that to their death. There is mental disease all over. Schizophrenia, bi polar, obsessive compulsive disorder, and extreme anxiety. There have been suicide attempts and multiple threats/thoughts of suicide. Every one of my siblings is on some kind of medication or thearpy or both for depression. My daughter was committed to a mental hospital in September and is now on a host of meds (but out of the hospital thankfully)

It will be interesting to see how all of this discussion turns out. Though I do think that alcholoisim in our family is due to untreated mental disorders, AND that the mental disorders are a brain chemical imbalance, a condition that can be passed down genetically.

Oh, almost forgot, high intelligence for all on my dad's side. I don't know if that affects your calculations, but another post mentioned it so thought I'd toss it in. Of those in my family with celiac disease, the ones with high intelligence are certainly affected.

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[strack2004]

Hi, Red 345, It's been awhile!. Thanks for your reply. I have been very careful about gluten in the past three months. Have improved energy and sleep, but digestive problems remain pretty much the same. Actually, my diet consists of fresh vegetables and fruits and unprocessed meats. Beef (hamburger and roast, rarely), fish, mainly Pollock, occasional canned salmon or mackerel, ground turkey, roast turkey, chicken, eggs, natural peanut butter, olive oil for salad dressing. My main fruit is banana since most of the others tend to bother my gerd-nerd, problem. I have to check my medicines again. Am taking Provex CV as a probiotic. It contains: grape skin extract, grape seed extract, proteases - bromelain and Fungal (?), Ginko biloba extrace (leaves), bilberry extract (berry), and Quercetin. Other ingredients: gelatin, and rice flour. Perhaps the gelatin in this is working against me, although I have only been using this for the past month. Rice flour is allowed on most celiac diets, but not on the Selected Carbohydrate Diet I am following.

I'd still like to have the name of the book you mentioned at the beginning of this thread if you have time some time. I wonder how your research is going. Appreciate the reason you can't share the particulars at this time. Just a general question. Strack2004, Ruth S.

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[mda10]

I was just diagnosed with celiac today via duodenal biopsy. I have suffered for only 5 months (knowingly) with none of the classic symptoms-- no weight loss, no diarrhea. My symptoms were mainly dysphagia, ITP, some minor neuralgia and some intermittent gas pains and bloating, and ectopic heartbeat/arrythmia, rash around eye. I have a strong medical/science background, having worked doing research (in college) on some groundbreaking things. Though I wasnt expecting celiac, I scoured every autoimmune disorder. I demanded an endoscope and biopsy for h. pylori and celiac. My next step, which I requested to see a rheumatologist on my own, was to do testing for lupus (SLE), antiphospholipid disease, and mixed connective tissue diseases.

Seems that there has been much focus on beta blockers and the heart, so I'll chime in. I'm only 38 and male and swim extensively with pulse rates up to 200 bpm. So heart trouble seemed unusual for me and it's more of annoyance than anything serious at this point. So I've studied it extensively. The cardiologist wanted to prescribe beta blockers if I wanted them.

My own conclusions about this are the following: my extra beat is certainly a conductive disturbance. It seems to mostly correlate with muscle spasms in my esophagus, precipitated by eating. It can be a sympathetic nervous system response to neural irritations in the GI tract. Esophageal peristalsis and heart rhythms are both controlled by the vagus nerve, one of the major cranial nerves.

A second possibility, is that I have an absorption problem due to the ciliac. This could have prevented proper absorption of calcium, magnesium, and other compounds necessary for proper neural and muscular functioning. A third possibility, is that the inflammation caused by the autoimmune response triggers a release of catecholamines which are compounds inherently produced in stress response. Your heart has beta receptors that take up this compound where it can act on the muscle. Beta blockers lock up that "keyhole." So most likely, the catecholamines are causing the conduction annoyance in my heart. I have seen this in other diseases like Crohns and UC, where an inflammative immune response is present.

I'm still learning about this disease but it is interesting. And it was on the bottom of my suspected list so I have much to learn. One of my research projects was on brain function and gangliosides. I came across work from Linus Pauling (2 Nobel Prizes and of Vitamin C fame). In the 1960s he started a field called "orthomolecular medicine." It never caught on and very few people know about it. It means the "right chemicals in the right amounts." His premise was that if a phenylketonuric ingested phenylalanine, he would have behavioral changes from the accumulation of phenylalanine in the brain. If you extend the logic, each of us is different genetically and could be sensitive to various molecules based on our genetic make up. There are many diseases that catalog this, celiac is one of them as well. I believe that he will be correct and that we will each be able to develop a profile study of what amount of what things we can ingest and eat in the form of a powder drink specifically tailored for our needs. A little extreme for the 1960s but appears to be playing out that way. He was a very smart scientist.

[flagbabyds]

I have a wuestion, you said in your very first post that your mother was diagnosed w/ celiac disease 3 years ago, and she didn't go on the complete diet until a year ago, hence making her problem worse, she wasn't following the diet like her doctor told her to. She could have developed those other problems because she wasn't following the diet.

Also, I'm never going to go back on gluten. I was 5 weeks away from dying when I was diagnosed, I have thyroid disease also, and I won't say that I don't have Celiac, I know I have it.

[red345]

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[mda10]

I'll have to read thru everything more thoroughly later... but my general comments are as follows:

There are 2 areas of science that I think are just at the beginning, a)food as an antigen; b)bacteria as a functioning "organ system"

First, there are some reknowned Harvard doctors studying leaky gut syndrome. There is a membrane protein called zonolin that is well studied, that opens of the lumen of the small intestine. (Now I've just read this once so I need to recheck my accuracy, but the essence is there). Once the lining is exposed, then anything you ingest, plus viruses and other pathogens can get into the blood stream or raise an immune response. Your immune system has memory. So the first time nothing may happen but thru repeated exposure, the immune system starts "raising it's armies" to attack the invader. So, in terms of illiciting an immune response, I'm not sure amino acids, in and of themselves would illicit that.

Each of them is a building block of all enzymes in our bodies and are coded for in the DNA via 64 codons in a triplet code. So they are all over the place and we wouldnt exist without them. But when amino acids, which are single molecules combine with other molecules, they can illicit an immune response and be presented as an antigen or foreign invader. I think of the autoimmune response as the body using nuclear weapons to attack an enemy, which is self in this case. An allergy is merely one battalion of an army going after an enemy.

In terms of an immune response in celiac....as an example.... glutamic acid exists as part of a petide in gluten (multiple aminos connected in a chain). The glutamic acid is deamidated, meaning the NH3 group is removed by an enzyme in our bodies. Now everyone has something on all our cells which identify our tissues as "self." Kind of a friend or foe signal that is emitted. This is why transplants fail and have to be matched. It's called HLA typing. In celiacs case, or one subset of celiac patients, we have the HLA-DQ2 gene which codes for that sequence to be on the cell surface. When the altered glutamic acid from the gluten polypeptide chain is attracted chemically to the HLA -DQ2, an epitope is formed which is a sequence that gets presented as an antigen to the immune system. It now sees this as an enemy and raises the nuclear defense in the form of B cells, T cells, and

cytokines which destroys the intestinal tissue among other things.

So this is an example of how food, in a leaky gut, raises our immune response to attack self.

2)Second, and this is far more complex, are how the billions of colonies in the gut function as an organ system symbiotically with us. An example is how we absorb Vitamin K via e. coli. But there are billions of bacteria and they are very hard to study. I personally believe, that when there's an autoimmune response, the flora get out of balance and that's why you see candida infection or systemic yeast infections. This is also common with antibiotics since it kills beneficial bacteria and the yeast take over. But I believe and have seen this happen even without antibiotic treatment via the autoimmune response. Also, there is headway being made in research ini diseases such as Crohns where a bacteria is suspected-- the same one that causes Jones Disease in cows and may leach into the milk. But it's not a single factor--- there are genes, there are bacteria, there is food as an antigen and all the possible combinations of these. The permutations are mind boggling. That's why it's so hard to design experiments to research this stuff.

Furthermore, any scientist (or doctor for that matter), needs to be trained in bacteriology, genetics, molecular biology, immunology, among others. Not easy.

Now impact on behavior is a different ball game altogether. If you want to add a third thing, it would be the connection between the mind/nervous system and the immune system. There's much to learn there too.

As far as my personal experience, I've had these heart palpitations coincidental with duodenal and esophagael spasms. No doctor would believe this for years now. I forced a duodenal biopsy to get my diagnosis (and thankfully, relatively early) and I dont have 'classic symptoms- ( I have weight gain, no diarrhea, only GERD/dysphagia and heart palpitations a skin rash around my eyes and some other minor neuralogical stuff). I really shouldnt be diagnosed and I'm lucky I became obsessed. Upon research I see that the vagus nerve innervates the esoph and intestines right near the duodenum. I believe the inflammation in the duodenum goes thru all the mucosal layers and irritates the nerves. I've had costochondritis in this exact spot for 10 years. Now it makes sense. Now the location factor makes sense since the vagus nerve also regulates the heart electrical conduction system. Now there are some distal factors at play too. Like why are my feet and hands numb? So obviously, there is some endotoxin effect or something else that may trigger a cascade reaction where other autoimmune things come into play. What I'm driving at is this lifelong exposure to gluten can cause things like MS, lupus, diabetes and other immune diseases. Merely going NG/gluten-free doesnt reverse the process. It already has been set in motion.

All of this is very interesting.... I've only spent a few days on this stuff (15 hours of reading per day) but need my thoughts to congeal. Meanwhile, Im fortunate to be feeling a little better after only 5 days of going gluten-free diet.

[mda10]

Very interesting post Red. The immune system and most things in the body function as a lock and key. The immune system encounters an antigen (enemy) once and raises the IgA's or IgG's specific to that enemy, i.e the antigen is like a key that fits into the IgA/IgG lock. The immunoglobulins summon the troops since they are on the surface of B Cells/T Cells. Once that lock and key go together, things occur inside the immune cells that cause a massive cascade and proliferation of armies and the cytokines that do damage. It's quite amazing.

So glutamic acid or glutamate by itself probably wouldnt do this. Things are based on size, chemically. That's why the polypeptide or the combo with the HLA epitope would form the thing that would be recognized as foreign. It's more like a bacterial surface or other typical invader found in nature. THe body would be unlikely to attack a single amino acid, imo.

But an amino acid in the brain affects pathways of neurotransmiiter synthesis. Thats why tryptophan causes sleepiness for instance. You have enzymes in your brain tissue that are proteins that synthesize from individual amino acids to form the proteins. In certain illnesses, like PKU, the patient is missing a key enzyme that would put the phenylalaninine or whatever aa into the polypeptide chain. Instead, it builds up to toxic levels and cause strange behavior. Certainly, other aminos can do the same thing.

Wrt, the glutamic acid causing brain problems in celiac...it's certainly possible. But I'm also thinking it's elements of the immune system, like certain endotoxins that is doing the damage. I certainly think your points about aspartame are valid. I for one dont trust it nor drink any. 2 amino acids and methanol. phenylalanine, glutamic acid and methanol. and your point about MSG are valid too. but remember, the structure of those isnt the same as the structure of gluten. it's the lock and key thing going on. single molecules are too small and dont have the affinity for the HLA-DQ2 molecule, so it wouldnt follow that pathway in illiciting an immune response. certainly, could be possible but not based on the know genetics. more than one gene would have to be involved.

more later...

[mda10]

Last post....I promise... I spent all weekend reading about MS and celiac connection since my older brother has MS and has many of the symptoms I had for celiac his entire life. He's never been tested for celiac. Anyways... it's interesting the connection between food and the antigenic response. MS is the classic disease with neurological implications. Many celiac patients report similar symptoms, though they disappear before any onset of MS. You all should read these articles:

Open Original Shared Link

In particular, I find interest in this article sub-linked at that link:

"Researchers find increased zonulin levels among celiac disease patients is an alert of a study published in The Lancet. Suggest that increased levels of zonulin are a contributing factor to the development of MS."

This allows for that leaky gut I was talking about, that opens up the immune system so that it can react to everything we ingest and everything in our gut-- viruses and bacteria.

[pixiegirl]

I'm not sure I'm actually adding anything to this... its really a technical discussion and I'm a new Celiac and still learning about all of this. However you seem to imply that the beta blockers somehow caused your mom's Celiac? Is that what you are sort of saying? Why doesn't she have her DNA tested and see if she has the genes for Celiac. I happen to have 2 of the main celiac genes, so for me that was a big answer.

For what its worth, I had rhumatic fever as a child, I too have a MVP but my heart damage is mimimal, I just had an echo last week and was told evreything is looking good.

I was diagnosed with Chronic Fatigue Syndrome and Fibromyalsia about 10 years ago.... diagnosed with Celiac about 2 months ago and have been as gluten-free as a beginner can be since then. I feel good at this point.

Susan

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[mda10]

I'm not feeling too well today. I cant really concentrate and I'll have to re-read your posts when I feel better. Sorry. I'll share this... last night I had neurological symptoms. I've had them in minor occurences the past few months--- numb finger tips, neuralgia in my big toe, the heart palpitations, and various muscle spasms. And a kind of brain fog at times. Last night, my whole left side was messed up. Fingers more numb than usual. Foot hurt more than usual and brain fog was bad. General weakness. And I had to think long and hard to remember my wife's and kids names. It lasted for 3 hours and I'm exhausted today. So I had to do some digging when I'm clear-headed. In general, I can address your posts for now. Celiac patients and perhaps other autoimmune patients have that increase in amounts of zonulin protein which causes the leaky gut. It is also the same protein that regulates the blood-brain barrier. So, I firmly believe that genetics are at play, at many levels. It's quite likely that a second gene, besides HLA-DQ2, causes this increase in zonulin production. Well, now that the blood-brain barrier and the intestinal mucosa are opened up, anything can come in and cause damage, including your MSG, aspartame, etc. Why do my neurologic symptoms magnify during the 5 days I go gluten-free? Now I have this increase in anti-gliadin antibodies circulating in my blood with nothing to do. No more gluten around. So they wreak havoc on my central nervous system instead. The zonulin is still there keeping the blood-brain barrier opened wide. I hope this resolves over time. But I suspect this is what is at work. In addition to the IgG and IgA, there are all the other autoimmun cytokines and lymphotoxins that are still at work.

To answer some of your question which I may or may not remember since my short term memory is fuzzy:

1)diabetes. I think the bodys reaction is complex. You have the thyroid gland and the adrenals and others in the endocrine system that are working together to orchestrate a response. They get fooled from the havoc that celiac has wreaked. Or diabetes. I, for one, notice a problem with my temperature regulation system at a certain time each day-- 5pm to 8pm. Every day. I am going to request that I get bloodwork done that test things like TSH (thyroid stimulating hormone) and some of the adrenals.

2)ammonia concerns. Ammonia, chemically is an NH group and that is broken off and produced in the metabolites of amino acid synthesis into proteins. so hard to say. Ammonia is removed from the blood by the kidneys.

I am not a medical doctor nor do I pretend to be. I dont work in the science or medical field any more. I merely have undergrad/graduate degrees in biochemistry, immunology, genetics, and molecular biology and conducted research in those areas as well for many years. I researched, coincidentally, gastroenterology genetics and brain biochemistry, among other projects.

I have also studied pharmacology, physiological psychology, physiology and anatomy... among other things. And I regularly attend medical conferences (as a patient) in the gastroenterology field.

Understand that medicine is very complex and multi-disciplinary. You basically have to not hold a job in order to keep up with all the advancements. I quit my job and have been doing this and consulting with some top researchers in the GI field and may get back to research once I understand the big picture and get healed.

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[Guest NancyNet]

I am really glad for all this information and very interested...and Concerned!

I was severely allergic systemically for years and was diagnosed with Sarcoidosis before diagnosed with Celiac years later. Since being diagnosed with celiac disease, I healed up my intestinal tract, (still have colon problems) and have put weight back on. Then I had a Super bad case of the Flu a few years ago, and after that, was diagnosed with high blood pressure and put on a diuretic and a beta blocker , then I was diagnosed with Fibromyligia. So as you can see I pretty much have allot of the symptoms of subject we are talking about I am now really concerned about the Beta Blocker I am taking after reading all of this, but my doctor said I will be on it for the rest of my life, Much like my Celiac Diet... Oh and by the way, the Beta Blocker as you can see did not bring on my Celiac like the Mother in questions problems ... Just thought this might be of interest... Take Care All....Nancy

[Guest barbara3675]

After reading and watching this thread into page four, I have to add this one thing. I was on a beta blocker, Inderal, for some time to help not get migraines. At the same time the SAME doctor diagnosed me with asthma and had me on pills and inhalers. I ended up at a specialist that told me he didn't think I had asthma at all, but that it was caused by the beta blocker. The doctor that prescribed the Inderal yanked me off of it within a week (should have been gradually).I never did have asthma and have had no symptoms of it since. Found a doctor that has helped solve the migraine problems other ways. I wonder, though, if all the medicine that I take for other things has made me vulnerable to gluten. I have the gene and have passed it on to my granddaughter and she has celiac disease. Also stress, they say, can bring on the gluten intolerance at a later age. Seems like everything that goes wrong with me is caused by stress-----migraines, TMJ, fibromyalgia, now gluten and most recently shingles. Makes ya wonder, doesn't it?

Barbara

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