Pots And Cfs - The Same Entity?

[ramakentesh]

http://www.phoenix-cfs.org/Symptoms.htm

I have a lot of those - particularly the visual ones. Cross over of these two diseases is often suggested.

[lorrie]

Thank you for the link...I read the entire thing and found that I have many of the symptoms also. My POTS doctor and my cardiologist have both mentioned that they think I have CFS and have put me on Lyrica for the pain. It has helped some, but mostly just the headaches. I still have muscle pain that becomes unbearable at times.

I do believe POTS and CFS are closely linked.

[flop]

Interesting link. I've read somewhere that when patients diagnosed with CFS were given tilt tests that a substantial proportion showed POTS on the test. Some doctors believe that POTS is the reason for many people's CFS, whilst other doctors say that as POTS is an explanation for fatigue that you can't be diagnosed with CFS too (CFS has unexplained fatigue). However as there is so much that is unknown about both conditions it seems sensible to find out as much as possible about both.

I followed a link from the phoenix rising website to an online questionnaire to see is CFS is likely - it said that my symptoms don't suggest CFS.

Flop

[EarthMother]

I was diagnosed CFS many years before the POTS diagnosis. It was probably an article like this that I began to investigate Dysautonomia in the first place.

There is certainly comorbidity between the two.

[Dizzysillyak]

People with CFS can have OI but they have other symptoms too, like sleep disorders, brain fog, nuerological problems like seizures, IBS, etc. From what I've read and witnessed for myself, a lot of this is just food intolerances and nutritional deficiencies caused by leaky gut and chronic hypoglycemia. Leaky gut appears to cause a lot of problems and is implicated in many chronic illnesses.

That's the problem with diagnosing a disease based on grouping symptoms. We need to start looking for the root of the problem not just diagnose by grouping symptoms. From what I've seen, most diagnosises cross over this way. Seriously, the only real advantage I can see of using a "diagnsosis" like CFS is to file insurance.

I see people diagnosed with celiac who have a lot of the symptoms of CFS and those with ataxia who have these symptoms too ... but their doctors diagnosed them with one or the other so they stopped looking for answers ... as did I ... Thankfully we have the internet to google our symptoms and do our own research.

It's especially discerning to hear people talk about what's "normal" for CFS or "normal" for celiac or "normal" for ataxia, etc ... as if it's the whole answer. Just because the medical community has funded a study saying that 30 out of 50 people have X when they have Y, doesn't make it science. Look at all those kids who ate peanut butter who now have ADHD ... (I better be quiet, I don't want to give them any ideas ... lol )

While orthostatic intolerance, hypoglycemia, IBS, etc is normal for CFS, it's not a reason to accept it ... up till this orthostatic intolerance problem, the other "normal" symptoms I have for CFS have been fixed (mostly) by dietary intervention. I just have to find a way to avoid gluten. It's everywhere ... .. ... and according to John Hopkins, my OI could be dietary too. So many of my symptoms are, that I wouldn't be surprised. BTW. My symptoms are probably due to my leaky gut allowing undigested foods into my body ...

The visual problems can be from gluten ataxia or hypoglycemia. Or maybe other food or chemical intolerances too though. I'm just up on the resarch about gluten and hypoglycemia ...

[juliegee]

My son's pediatrician, Dr. Peter Rowe, at Johns Hopkins is the one who did the research that Flop is referred to. The study concluded that 90% of CFS patients also had orthostatic intolerance. Dr. Rowe probably wasn't the first, but he was among them, to suggest that OI is THE major contributor to CFS. He gave us a great chart, with OI in the center and many other spokes (asthma, food allergies, anxiety, movement restrictions, depression, inhalant allergies, infection, Chiari type I or c-spine stenosis, EDS, pelvic venous incompetence) leading off of it. He suggested that he came up with a CFS DX, if a patient had OI and several of the other corrolating symptoms. Maybe I will work on trying to scan it so I can link it up here.

Interesting thread!

Julie

[ramakentesh]

A Dr.Bell caught my interest a while back when he demonstrated that something like 80% of CFS patients had low blood volumes. Then I did read that article about Dr.Rowe saying 90% of CFS had POTS and Dr.J Stewart who suggested that around 25 % of his patients with CFS had POTS.

I guess i have the same visual problems - most people with POTS have brain fog for the same reasons to (reduced blood flow to the brain), and sleep is also an issue for POTS patients.

[ramakentesh]

I dont know about Leaky Gut Syndrome. My friend is a medical researcher and he thinks that if things like leaky gut syndrome or candida were really the root cause of complex, multi-systemic illnesses like CFS and Dysautonomia then doctors would have recognised this years ago. Both of those suggested causes have been around for years and neither have been demonstrated in any way.

I wish it was that simple, but doubt it will end up being that simple.

[EarthMother]

My own sense is that we will never find a single one-size-fits-all cause/cure for POTS. But that the dysfunction occurs when a tipping point is reached in the body's system balance. It could be viral, hormonal, chemical, injury or a combination of several things, but it is the one that final breaks the camel's back that sends us off in a crash. That would explain why we hear so many "cures" and "success stories" from people who have tried various things including diet, drugs, exercise, chiropractic etc. Because for them, they found one of the triggers for their unique situation.

In my case, a few years back I DID test positive for systemic candida (expensive blood tests including those IgE tests for food sensitivities i.e. LGS) and after 9 months of treatment (diet) I improved dramatically and the blood tests showed no sign of candida in my system. But a couple years later I found myself in another POTS hole, only to discover Candida was not part of the equation that time around.

If it is indeed possible that any one of a myriad of causes can be enough to send out system over the edge and we relapse into symptomatic dysautonomia, then it may be we need to pinpoint the specific trigger at that time in order to see improvement. Or just wait for the body's own wisdom to kick in and find homeostasis on its own.

[Dizzysillyak]

My own sense is that we will never find a single one-size-fits-all cause/cure for POTS. But that the dysfunction occurs when a tipping point is reached in the body's system balance. It could be viral, hormonal, chemical, injury or a combination of several things, but it is the one that final breaks the camel's back that sends us off in a crash. That would explain why we hear so many "cures" and "success stories" from people who have tried various things including diet, drugs, exercise, chiropractic etc. Because for them, they found one of the triggers for their unique situation.

In my case, a few years back I DID test positive for systemic candida (expensive blood tests including those IgE tests for food sensitivities i.e. LGS) and after 9 months of treatment (diet) I improved dramatically and the blood tests showed no sign of candida in my system. But a couple years later I found myself in another POTS hole, only to discover Candida was not part of the equation that time around.

If it is indeed possible that any one of a myriad of causes can be enough to send out system over the edge and we relapse into symptomatic dysautonomia, then it may be we need to pinpoint the specific trigger at that time in order to see improvement. Or just wait for the body's own wisdom to kick in and find homeostasis on its own.

Well said ... I've read that this overload on our immune system is due to too many cytokines. Here's an article that explains this ...

http://www.prohealth.com/library/showartic...&t=CFIDS_FM

I believe, based on my own experience, that we can reduce those cytokines by changing our diets to avoid foods we're intolerant too since food intolerances create cytokines and by avoiding all those toxins they insist on putting in our foods.

BTW, On leaky gut and candida and how researchers aren't aware of it ... I have no idea why they aren't looking into it further. We all know that our immune systems are mostly in our guts so it only makes sense to me ... Could be that our health care is profit oriented and there's no money in telling someone to eat healthy.

[Guest tearose]

Clearly, I have had times of wonderful strength and thought I was all better! Then a virus or overexposure to mold began the POTS relapse again...I do not think CFS and POTS is the same. I don't have the fatigue like CFS folks get. I don't have pain like CFS people speak of. I get a weighted, no stamina hollow bone feeling, but golly, I sure have the desire and usually manage to eek out some kind of activity even if it is just brain activity.

When I complain of being tired, it is, in my opinion,in me, directly related to how much energy my body put out to keep me in balance or how active I have been. I know I am doing well when two days of activity can be followed by one day of rest and I can go on and on and on like this. Doing three days of activity in a row is usually pushing my body and I must be careful.

tearose

[juliegee]

Very interesting thread. I don't think that POTS and CFS are the same thing. I do think that autonomic abnormalities are a major contributor to CFS. Think about it, if the simple act of standing is a major strain to your body, of course you're going to be exhausted from that effort alone. I know folks who have occasional vasovagal episodes, but feel perfectly fine in between episodes. Then, I see my poor 16 year-old son, who suffers from NMH/NCS and feels exhausted 24/7. Given to his own devices, he would go to sleep around 10-11PM and sleep until 3-4PM the next day.

Mack also meets Dr. Rowe's CFS criteria as he suffers from a milk protein allergy, experienced anxiety when his autonomic system went wacko, has severe movement restrictions; and although he's not DXed with a connective tissue disorder yet, has experienced cervival subluxations a few times. Clearly something besides an OI is going on.

CFS is simply a term to describe a constellation of symptoms of which autonomic abnormalities/OI plays a huge part.

Julie

[Ernie]

Hi,

I did not know I was diagnosed with CFS until I read my medical file last year. The doctor had never told me.

[ramakentesh]

Thanks for the replies and tearose is right - I dont suffer from the fatigue, muscle pains or those kinds of things either so I wouldnt probably fit into the catagory of CFS. I dont seem to have much in the way of immune disfunction either.

But I was surprised to read some of those symptoms - specifically the cognitive and visual symptoms because I have most of those and they were explained to me as results of decreased blood flow to the brain and vasoconstriction in the eye. I wonder if that is what causes them in CFS?

In relation to leaky Gut - I dont suggest I have all the answers. But I am aware that medical research is slowly making the possibilities clearer.

Most researchers who are studying CFS now agree that is seems to suggest both autonomic disfunction and immune disfunction - specifically the role of the inflamatory marker Tumor Necrosis Factor alpha has been implicated in CFS. This is the protein that basically tells the alpha immunocells which substances to attack. It results in a situation where the immune system gets locked into an alpha state where alpha cells are hunting allergins and reacting with histamine and does not allow the system to go back into its usual beta state (supression of viruses).

This could possibly account for food intolerances, allergies, immuno supression characteristics.

In other autoimmune illnesses TNFa is implicated and its disfunction can be explained through mutation of certain genes. So i dont see why CFS would be any different. TNFa is involved in inflamation in rheumatoid and reactive arthritis, Ankylosing Spondalitis (of which I am a mild sufferer)

Add to this autonomic disfunction and you ccould possibily account for the visual, brain fog, anxiety, sleep disturbances and dizziness.

This website has some interesting material on there. i wasnt aware that they had found measurable disfunction in 16 genes in CFS patients (genes that regulate the immune system, GABA, and other things).

I guess what I am trying to say is that just because someone tells you that its caused by leaky gut or gluten intolerance doesnt actually mean that this is the case in every situation. And Id take any diagnosis made by a naturopath, over the internet or through some iffy Doc with a grain of salt until they can show me proof of it through some demonstratable pathology test.

One thing I will point out is that I can precipitate an attack of Ankylosing Spondalitis through eating yeast.

[Dizzysillyak]

Thanks for the replies and tearose is right - I dont suffer from the fatigue, muscle pains or those kinds of things either so I wouldnt probably fit into the catagory of CFS. I dont seem to have much in the way of immune disfunction either.

But I was surprised to read some of those symptoms - specifically the cognitive and visual symptoms because I have most of those and they were explained to me as results of decreased blood flow to the brain and vasoconstriction in the eye. I wonder if that is what causes them in CFS?

In relation to leaky Gut - I dont suggest I have all the answers. But I am aware that medical research is slowly making the possibilities clearer.

Most researchers who are studying CFS now agree that is seems to suggest both autonomic disfunction and immune disfunction - specifically the role of the inflamatory marker Tumor Necrosis Factor alpha has been implicated in CFS. This is the protein that basically tells the alpha immunocells which substances to attack. It results in a situation where the immune system gets locked into an alpha state where alpha cells are hunting allergins and reacting with histamine and does not allow the system to go back into its usual beta state (supression of viruses).

This could possibly account for food intolerances, allergies, immuno supression characteristics.

In other autoimmune illnesses TNFa is implicated and its disfunction can be explained through mutation of certain genes. So i dont see why CFS would be any different. TNFa is involved in inflamation in rheumatoid and reactive arthritis, Ankylosing Spondalitis (of which I am a mild sufferer)

Add to this autonomic disfunction and you ccould possibily account for the visual, brain fog, anxiety, sleep disturbances and dizziness.

This website has some interesting material on there. i wasnt aware that they had found measurable disfunction in 16 genes in CFS patients (genes that regulate the immune system, GABA, and other things).

I guess what I am trying to say is that just because someone tells you that its caused by leaky gut or gluten intolerance doesnt actually mean that this is the case in every situation. And Id take any diagnosis made by a naturopath, over the internet or through some iffy Doc with a grain of salt until they can show me proof of it through some demonstratable pathology test.

One thing I will point out is that I can precipitate an attack of Ankylosing Spondalitis through eating yeast.

CFS didn't used to include Fibro pain but I see a lot of doctors including it now. It's really not the same though. You can have one without the other. I hardly ever have pain anymore and when I do it's always the result of overusing a set of muscles. I don't have most of the CFS symptoms now either unless I eat gluten. KOW ...

It was my experience that most of my balance, cognitive and visual problems were from gluten ataxia, BUT that doesn't mean it will be that for everyone. I know of people who get seizures from dairy but that research isn't as easy to find as the research on gluten. I suspect that there are plenty of toxins that are causing these kinds of problems including MSG, aspartame, etc. I just haven't researched these because I gave them all up just in case.

You mentioned that yeast will bring on your AS. I have a good friend who has RA and was just diagnosed as a celiac. It's getting more and more difficult to ignore the relationship between foods and disease.

IMHO, we're lucky to have the internet to do our own research ... Many in the medical community has been slow to adopt the idea that gluten can cause multiple problems even though their is strong research to support it. Pubmed (a division of the NIH) has a ton of articles on this ... check out www.theglutenfile.com

Leaky gut is called gut permeabily by traditional doctors and if you google it you'll see the same type of info that the naturopaths are saying. The problem

is that traditional doctors, including gastroenterologists, aren't dealing with this. And I'm sure it's because it's dietary intervention and there's no money in it. On top of this, most gastroenterologists aren't running vitamin and mineral deficiency tests on their celiac patients and celiacs have to be deficient in most vitamins and minerals since that's what the villi do for us. I didn't get this or even an osteoporosis test ... which I heard was the norm.

I'm not up on TNF ... but it sounds exactly like the definition I got back in 1992 about how our immune system is up regulated ... meaning it's stuck in an infinite loop and unable to stop fighting anything it gets ahold of ... This results in elevated viral titers and I'm guessing severe allergies. I have both ..

If our immune systems are in our guts then it seems to me that the way to fix this is to fix our guts. I'm not sure this is do-able, but since this is a problem for a lot of autistic kids too, their test result would tell us.

I'm a newbie to all this research but there are books on the DAN protocal that can explain this. This one was highly recommeded as well as the books by Jenny Mc Carthy.

http://www.amazon.com/gp/reader/0345494504..._pt#reader-link

good discussion ... Marcia

[ramakentesh]

It was my experience that most of my balance, cognitive and visual problems were from gluten ataxia, BUT that doesn't mean it will be that for everyone.

This is ofcourse quite possible if you have been diagnosed by a Doctor as a Celiac. But how can you be 100% certain if you also suffer OI?

These symptoms are all the major symptoms of OI - infact they are my main symptoms.

POTS and OI result in measurable reductions in blood flow to the brain. This results in presyncope or dizziness and lightheadedness. Reduced blood flow to the head results in arterial vasodilation which has significant affects on the eyes resulting in the visual disorders of POTS/OI.

If my doc said to me that I suffer from Celiac disease and then later I found out I had OI Id be more likely to think that perhaps the Celiac thing started the OI which resulted in these symptoms rather than thinking it was an independent expression of Celiac Ataxia (something I believe only severe and prolonged cases of Celiac Interolance experience). I certainly wouldnt be suggesting that other POTS patients who havent been diagnosed with Celiac Intolerance were also suffering from Gluten Ataxia before suggesting that they were suffering symptoms of OI.

As for the immune system - it isnt based purely in the stomach or digestive system - its blood born so its all over the body with the exception of the blood brain barrier (an implication of MS). The argument people in the alternative medicine arena contend is that the leaky gut allows particles and toxins to travel from the stomach into the blood stream and eventually across the blood brain barrier to cause a variety of symptoms. I dont think there is really much in the way of solid evidence that supports this. It may be true and it may not.

My point is that its just a theory and there are lots of those around, but until the true causes are demonstrated by medical science you cant rely on them definitively.

There are newer threories about the causes of CFS that I would suggest are more probably - specically the role of nitric Oxide levels and oxide stress as well as the overactivity of the immune system. I say these are more probably only because there are recent studies that seem to confirm them.

After all for 200 years people insisted that Bubonic Plague was caused by bad vapours in the air and were totally convinced of this to the point that they would not accept it was caused by the flea of certain breeds of rats.

[Dizzysillyak]

There's gluten ataxia and then there's celiac ataxia. I'm not sure if both of them are from gluten antibodies in the brain though. Those who are diagnosed with gluten ataxia don't have celiac disease though. Dr. Hadjivassilou first proved that gluten was damaging the Purkinje cells in the brain in 2002 ...

I know I had gluten ataxia based on the fact that I failed the Rhomberg back in 1990 - 92 when I first got sick and the fact that after eliminating gluten for one year, I no longer fail it. I can spin in circles with my eyes closed if I want to ...

The Rhomberg test is specific for ataxia. I wouldn't suggest trying this alone .. I would've bit the dust without realizing it prior to Sept 2006. If you have ataxia you don't realize that you're off balance until it's too late. I used to bump into anyone walking next to me ... and didn't realize it until I almost knocked them over ... In case you're interested though ... you can google Rhomberg or I think all you have to do is stand up with your feet a little apart. Put your arms out in front of you and close your eyes. Seriously, don't do this if you think you have ataxia and you're alone ... if you have ataxia, you'll fall without realizing it .. I didn't just sway and catch myself, I fell ...

The test for OI is a drop in BP after standing for 2 minutes or longer which mine does and continues to drop the longer I'm up. My BP was low much of the time from 1990 - 2008 when I finally figured out how helpful salt was. I'm not up on the different types of OI but I'm not sure that matters since all I want to do is fix it.

You can be gluten intolerant and not have celiac disease. I think I'm a good example of that but since my doctors never tested me for celiac disease I'll never know for sure. But get this ... I had gluten ataxia from 1990 - 2006 and only got the severe D they talk about in 2005 when my digestive tract just finally stopped working. My guess is that I didn't get celiac disease until 2005. If this isn't what happened, then everything they say about celiacs not being able to eat gluten is wrong, because I ate it every day, 3 times a day, from 1990 - 2005 ...

My case really doesn't matter though .. Dr. Hadjivassilou proved in 2002 that anyone who has ataxia could have gluten antibodies in their brains and not have celiac. There's been a lot of research on how gluten can affect us since then .. And these are real doctors proving this ...

Here's an article from the NIH (National Institute of Health) on leaky gut. I'm sure there's more like this but this one was handy.

Gut permeability to lactulose and mannitol differs in treated Crohn's disease and celiac disease patients and healthy subjects.

Vilela EG, Torres HO, Ferrari ML, Lima AS, Cunha AS.

Instituto Alfa de Gastroenterologia, Hospital das Cl?nicas, Universidade Federal de Minas Gerais, Belo Horizonte, MG, Brasil. evilela@medicina.ufmg.br

The gut barrier monitors and protects the gastrointestinal tract from challenges such as microorganisms, toxins and proteins that could act as antigens.

There is evidence that gut barrier dysfunction may act as a primary disease mechanism in intestinal disorders.

The aim of the present study was to evaluate the barrier function towards sugars after the appropriate treatment of celiac disease and Crohn's disease patients and compare the results with those obtained with healthy subjects.

Fifteen healthy volunteers, 22 celiac disease patients after 1 year of a gluten-free diet, and 31 Crohn's disease patients in remission were submitted to an intestinal permeability test with 6.0 g lactulose and 3.0 g mannitol.

Six-hour urinary lactulose excretion in Crohn's disease patients was significantly higher than in both celiac disease patients (0.42 vs 0.15%) and healthy controls (0.42 vs 0.07%).

Urinary lactulose excretion was significantly higher in celiac disease patients than in healthy controls (0.15 vs 0.07%).

Urinary mannitol excretion in Crohn's disease patients was the same as healthy controls (21 vs 21%) and these values were significantly higher than in celiac disease patients (10.9%).

The lactulose/mannitol ratio was significantly higher in Crohn's disease patients in comparison to celiac disease patients (0.021 vs 0.013) and healthy controls (0.021 vs 0.003) and this ratio was also significantly higher in celiac disease patients compared to healthy controls (0.013 vs 0.003).

In spite of treatment, differences in sugar permeability were observed in both disease groups. These differences in the behavior of the sugar probes probably reflect different mechanisms for the alterations of intestinal permeability.

PMID: 19148373

[Ernie]

Hi dizzy,

That's very interesting you mentioned the Romberg test. Everytime a neurologist makes me do it I faint immediately. I asked many doctors what caused this and even the syncope specialists had an answer. The more you talk about the ataxia the more I am convinced I have it.

[ramakentesh]

There's gluten ataxia and then there's celiac ataxia. I'm not sure if both of them are from gluten antibodies in the brain though. Those who are diagnosed with gluten ataxia don't have celiac disease though. Dr. Hadjivassilou first proved that gluten was damaging the Purkinje cells in the brain in 2002 ...

I know I had gluten ataxia based on the fact that I failed the Rhomberg back in 1990 - 92 when I first got sick and the fact that after eliminating gluten for one year, I no longer fail it. I can spin in circles with my eyes closed if I want to ...

The Rhomberg test is specific for ataxia. I wouldn't suggest trying this alone .. I would've bit the dust without realizing it prior to Sept 2006. If you have ataxia you don't realize that you're off balance until it's too late. I used to bump into anyone walking next to me ... and didn't realize it until I almost knocked them over ... In case you're interested though ... you can google Rhomberg or I think all you have to do is stand up with your feet a little apart. Put your arms out in front of you and close your eyes. Seriously, don't do this if you think you have ataxia and you're alone ... if you have ataxia, you'll fall without realizing it .. I didn't just sway and catch myself, I fell ...

The test for OI is a drop in BP after standing for 2 minutes or longer which mine does and continues to drop the longer I'm up. My BP was low much of the time from 1990 - 2008 when I finally figured out how helpful salt was. I'm not up on the different types of OI but I'm not sure that matters since all I want to do is fix it.

You can be gluten intolerant and not have celiac disease. I think I'm a good example of that but since my doctors never tested me for celiac disease I'll never know for sure. But get this ... I had gluten ataxia from 1990 - 2006 and only got the severe D they talk about in 2005 when my digestive tract just finally stopped working. My guess is that I didn't get celiac disease until 2005. If this isn't what happened, then everything they say about celiacs not being able to eat gluten is wrong, because I ate it every day, 3 times a day, from 1990 - 2005 ...

My case really doesn't matter though .. Dr. Hadjivassilou proved in 2002 that anyone who has ataxia could have gluten antibodies in their brains and not have celiac. There's been a lot of research on how gluten can affect us since then .. And these are real doctors proving this ...

I hope you dont mind me clarifying a few things in your post.

Ok firstly the Romberg/Rhomberg test is used to test for vertigo and is often nowdays also used to assess people with Chronic Fatigue Syndrome as well as for sobreity when driving. I was given this test by a neurologist when I first became ill myself with POTS. And I did a fair bit of wobbling myself, primarily because I was dizzy, but I didnt fall over.

Falling over is more indicative of ataxia but it doesnt mean you are automatically diagnosed with a form of ataxia. Many patients with OI and CFS are reported to have failen over during this test.

Here is a link discussing the Romberg's test used in Chronic Fatigue Syndrome:

http://www.dreglobal.org/romberg.htm

So from my understanding of your post your not a celiac and your basing the diagnosis of Gluten ataxia based on the fact that there is a study out there from 2002 talking about gluten antibodies attacking the brains of a cohort of patients and the fact that you excluded gluten from your diet and no longer failed the rhomberg's test. The blood brain barrier normally stops antibodies from entering the brain.

This point really concerns me. Self diagnosis is the bane of most medicos for a reason - patients often get it wrong. Sure you can guess that your stomach complaints and other symptoms are the result of a gluten intolerance but from the evidence you have provided I would say that you cannot state that you 'know it'.

It could quite plausibily be coincidental that you passed a Rhomberg's test a year later; when I first got POTS i improved considerably after 8 months and would have easily passed the test without ever excluding anything from my diet.

There are published medical studies that prove all sorts of things. It really depends on the reputability of the publishing journal but not every published study is correct or is proven correct and its application can only be relied on in relation to the specific cohort of patients studied. They certainly dont indicate that their results can be applied to other circumstances.

Finally your test for OI is not exactly correct. The most common form of OI is POTS and there is quite often no drop in blood pressure on postural stress.

Dont take me wrong here. I dont want to offend you and your entitled to think what ever you like. But I hope you have considered what you have concluded well and are not excluding another treatable diagnosis.

[ramakentesh]

Ive just done some research and it appears that there are many tests that can be done to confirm whether you are suffering gluten related neuropathies or ataxia. Although in 15% of cases there are no positive antibodies and probable diagnosis is through exclusion of gluten. have you had your anti-gliadin antibodies tested?

I can see that its an area of some controversy - autism and gluten is a VERY controversial area. There is no real understanding of the cause.

Unlike coeliac disease, there is no developed pathophysiology for gluten-sensitive idiopathic neuropathies. Many studies rely either on the diagnosis of elevated anti-gliadin antibodies or an improvement with the removal of gluten. In either case the disease pathway is unclear. There is currently no consensus whether antigliadin antibodies can cause disease, with the exception of IgE in which it is known that omega-gliadin can mediate anaphylaxis and urticaria. Recently, Synapsin I has been identified as an autoimmune target of crossreactive anti-gliadin antibodies, and possible links to patients with peripheral neuropathies or cerebral ataxia.[42] Other studies show that antigliadin antibodies can cross react with tissue-transglutaminase. These studies have to be considered in light of idiopathic sensitivity, where gluten in removed and anti-gliadin antibodies remain. The key to enteropathy is in the T-cell responses, not antibody responses. Fifteen percent of people with elevated anti-gliadin antibodies do not have coeliac disease, and also may not have enteropathy. In cases where enteropathy is subclinical or underdiagnosed, avitaminosis may play a role. Paralleling the neuropathological gliadin issue, it has been recently shown that removing wheat as well as other allergens identified by RAST testing in autoimmune arthritis patients results in the reduction of certain indicators or disease. With wheat, unidentified allergenic motifs can potentially elicit crossreactive autoantibodies. Another possibility that has precedence in EIA is the possible action of glutens directly on nerves or a combination of IgE or IgA and gluten on these neuronal tissues. The bottom-line on idiopathic sensitivity is there can be many causes from different pathways, most of which have not been thoroughly investigated

So some people can have positive antibody tests without disease, and the connection between these antibodies and disease isnt clear.

[Dizzysillyak]

Hi there ... It's good to see that you're looking into gluten sensitivity.

I was blown away back in Aug / Sept 2005 when I started reading all of this. My doc gave me info on the LEAP food elimination diet in July 2005 because I was still soooo sick after seeing a GI and going through all those invasive tests and taking those meds. Then I dropped 10lbs in one month from "D'. I was 108 lbs, gaunt, and looking grey by then and there was no end in site ...

Within days I stopped feeling jittery and sleeping at the drop of a hat. So when I found out about gluten, I wasn't all that surprised when I read that gluten could be causing other nuero problems. What shocked me and left me in denial for a couple of years was that I hadn't been told about this from my doctors.

Let me clarify this ...

I went on the elimination diet for 9 months back in 1990 - 92 with the help of a chiro who used a machine to tell me what I could or couldn't eat but it didn't make a bit of difference. I don't recollect him ever telling me about gluten though so I was no doubt eating it ...

Then I vaguely remember another doctor of mine suggesting I go on the elimination diet, but I don't think I took him seriously either. Afterall, I'd tried it and it didn't help ... and it's not like he really explained it. Not like the doc who put me on the elimination diet in 2005. She spent at least 30 minutes telling me how to do it .. what to eat, what not to eat, digestive enzymes, etc etc etc ...

The problem I see looking back though is that 1 - we didn't have the internet and 2 - not that much was known about gluten. It wasn't until 2002 that Dr. Hadjivassilou proved that gluten ataxia existed ... now we have tons of info on gluten, etc so it's much easier to take advantage of this.

Gotta run ... HTH ..

BTW, I'm not self diagnosed but I have no problem with those who are. I actually admire them for taking charge of their health and not getting sucked up in what we call Health care in this country ... I wasn't this way until this past year though ... live and learn ... Marcia

I almost forgot ... I can't find the website now that said a positive rhomberg = ataxia ... It was there in 2006 though .. But ... If you're constantly bumping into people who are walking next to you and you're legs feel like they weigh a ton .... and you have to bring your arms down to rest when washing your hair ... and your vision gets fuzzy when you're walking ... suspect gluten ataxia ...

[juliegee]

I'm learning so much from everyone on this thread. I have a quick question for Marcia/Dizzysillyak Who is your doctor at Johns Hopkins? My son is also treated there. Dr. Peter Rowe is his pediatrician. He also specializes in CFS/OI. Dr. Rowe has implicated milk protein as a part of my son's CFS/OI. I see vestiges of allergy/mast cell issues here as so many have food allergies as a big part of their problems.

Julie

[ramakentesh]

'and your vision gets fuzzy when you're walking '

again this is a cardinal symptom of OI.

[Dizzysillyak]

Mack's Mom,

I don't see a doc at John Hopkins. I just like their literature on OI.

Has your son's doctor told you how to go on the elimination diet ? Has he tested your son for the common food intolerances including gluten, dairy, soy, corn and eggs ? I'd go with the stool tests at this point since they appear to be more reliable. Diagnos-Techs, Genova or Enterolab seem reliable. My doc is using Genova now ...

BEWARE - There are times when these tests aren't as good as the elimination diet and there are times when the elimination isn't as good as these tests ...

I tested negative for dairy, but the racoon eyes I get after eating dairy tell a different story. And I test positive for eggs, but really never noticed any problems from them ... At any rate, I'm off gluten, dairy and eggs ... I eat a tiny bit of soy and am playing with corn every once in awhile.

hope your son feels better soon ...

[Dizzysillyak]

'and your vision gets fuzzy when you're walking '

again this is a cardinal symptom of OI.

Ok, I'm obviously not doing a good job of expaining this ... I'm not a writer .. or a doctor ...

What I've been trying to say is that you shouldn't just take for granted that any symptom that is considered "normal" for OI is automatically just OI. Or that any symptom considered 'normal" for CFS is just CFS ... Many of us have co-existing conditions ... and these may be treatable ... I'm betting OI is too I just haven't gotten it figured out YET .

Fuzzy vision can be from a lot of things ... just google fuzzy vision and I'm sure you'll find a lot of causes. Hypoglycemia is one I deal with from time to time now but it was a much bigger problem before going on the Paleo diet and getting my BG levels stabilized a bit.

This goes for balance problems, heavy arms, yada yada ... IE ... I was in several car accidents prior to gettig sick with CFS and have been told I have permanent damage from these .. I know this contributes to my heavy arms at times.

What is unique about my experience is that I have OI and used to have gluten ataxia so I know how different they feel. Not that everyone with gluten ataxia is going to have my exact symptoms but according to Dr. Hadjivassilou, most of his patients with gluten ataxia have balance issues, heavy arms and visual disturbances. I have a link to this article, but I'm busy nowadays trying to get ready for company ... if you google gluten ataxia Hadjivassilou though you should find it ..

Ok, does this explain it better ? You may just have to start googling to see what I'm trying to say. That's what I had to do in order to finally get it ... I'm as thick headed as they come ..

PS. Here's a book I just started reading "Healing the New Childhood Epidemics Autism, ADHD, Asthma, and allergies" . It's by a DAN doctor and I'm hoping it pulls together all the research / studies I've witnessed on the web in the last 3 1/2 years. I ran into several DAN members when researching using diet to cure hypoglycemia and kidney stones (oxalate problems). Most of them had noticed some benefit on the GFCF diet and were ready to try something new. I have the utmost respect for these parents and kids ...

http://www.amazon.com/Healing-New-Ch...pr_product_top