Pots And Cfs - The Same Entity?

[juliegee]

Hi Marcia,

Mack's had biopsies taken from his small bowel that indicated he was NOT allergic to dairy, BUT a detailed examination of symptoms/diet revealed a different story. Dr. Peter Rowe is the OI/CFS expert for children and adolescents at Hopkins. When Mack was at his sickest, (age 12 y/o, 5'8", 100lbs) he missed a year of school. he was unable to eat w/o vomiting and he was lightheaded all of the time. Once we found Dr. Rowe and got a good treatment plan (including a dairy- free diet) he improved dramatically. He is 16 y/o now, 6'1" and 170lbs, attending school full-time. He takes quite a few meds to function (prilosec, florinef, thermotabs, lexapro and concerta), but he's doing much better. Much to my chagrin, he eats some dairy now, and is tolerating it better. I know he'd be much better off without it. It greatly contributes to his aches and pains, and fatigue.

Julie

[Dizzysillyak]

Hi Marcia,

Mack's had biopsies taken from his small bowel that indicated he was NOT allergic to dairy, BUT a detailed examination of symptoms/diet revealed a different story. Dr. Peter Rowe is the OI/CFS expert for children and adolescents at Hopkins. When Mack was at his sickest, (age 12 y/o, 5'8", 100lbs) he missed a year of school. he was unable to eat w/o vomiting and he was lightheaded all of the time. Once we found Dr. Rowe and got a good treatment plan (including a dairy- free diet) he improved dramatically. He is 16 y/o now, 6'1" and 170lbs, attending school full-time. He takes quite a few meds to function (prilosec, florinef, thermotabs, lexapro and concerta), but he's doing much better. Much to my chagrin, he eats some dairy now, and is tolerating it better. I know he'd be much better off without it. It greatly contributes to his aches and pains, and fatigue.

Julie

I have a 21 year old who about killed me (and herself) while trying to prove she wasn't allergic to peanuts when she was 16. I'd love it if she would agree to go on the elimination diet. She's got a lot of medical issues.

I've never heard of taking a biopsy to determine food allergies. Seems extreme ...

It's good to hear he's doing well. Let's hope the two of them can continue this. I'm thinking their health will hold out until their immune systems take a big hit of some sort. My DD has a high ANA and gets really sick when she gets sick but still won't listen to me ... I keep trying though ..

[ramakentesh]

The last thing Ill say in this post is that if someone has been diagnosed with orthostatic intolerance or POTS and is visiting this website chances are they are experiencing visual disturbances as an effect of the condition they have been DIAGNOSED with. Pretty much everyone I have met with POTS who suffers from pre-syncope experiences visual disturbances.

And these visual disturbances can be quickly and easily explained to them and it is MUCH MORE likely that these visual disturbances are the result of Orthostatic Intolerance or POTS than it is some other condition that they HAVENT been diagnosed with - such as the one you specifically mention which is Gluten Ataxia; a condition in which in some cases a positive diagnosis is NOT possible.

At the end of the day where medicine doesnt have any of the answers self-diagnosis is probably fine - but with these kinds of illnesses where all the answers arent yet available but actual research is ongoing - you would be doing yourself a dis-service to make concrete assumptions about the nature of your illness based on internet research.

[Dizzysillyak]

The last thing Ill say in this post is that if someone has been diagnosed with orthostatic intolerance or POTS and is visiting this website chances are they are experiencing visual disturbances as an effect of the condition they have been DIAGNOSED with. Pretty much everyone I have met with POTS who suffers from pre-syncope experiences visual disturbances.

And these visual disturbances can be quickly and easily explained to them and it is MUCH MORE likely that these visual disturbances are the result of Orthostatic Intolerance or POTS than it is some other condition that they HAVENT been diagnosed with - such as the one you specifically mention which is Gluten Ataxia; a condition in which in some cases a positive diagnosis is NOT possible.

At the end of the day where medicine doesnt have any of the answers self-diagnosis is probably fine - but with these kinds of illnesses where all the answers arent yet available but actual research is ongoing - you would be doing yourself a dis-service to make concrete assumptions about the nature of your illness based on internet research.

Sorry if this is annoying you but I'm only trying to help here.

Again, I am diagnosed with CFS which includes OI. I'm NOT self diagnosed ...

No one told me until I'd recovered from gluten ataxia that I had gluten ataxia all those years. Most doctors don't know enough about gluten ataxia to know to look for it. IMHO, It would be crime for me to tell someone that all their balance problems were from OI and not tell them about gluten ataxia.

BTW. I've seen some of the best docs in the US. I'm not self diagnosed. Although, I did use the internet to diagnose myself with gluten ataxia, none of the highly qualified doctors that I told about walking normally again questioned my description of how gluten ataxia affected me.

I see we diagree on using the internet for medical info. But you know ... even my docs are looking at the articles I've brought them including the one from John Hopkins ... as long as you only use reputable sites, I think it's self defeating not to use the web ...

Hope you do well with what ever route you chose though ...

[juliegee]

Rama, I want to try to connect the dots in a slightly different way. According to Dr. Peter Rowe at Hopkins, food allergies are an integral part of what contributes to OI. (In an allergic reaction blood vessels leak out causing low blood volume and the subsequent OI) His research shows that 90% of CFS sufferers also suffer from OI. This is not to say that every OI sufferer has food allergies contributing to their OI. But they may (especially if you also have severe GI symptoms) and the elimination diet is a good place to start figuring out which food is the culprit. Marcia has found her culprit. Dr. Rowe has helped my son figure out his culprit. Rama, if you'd like, I can dig out a research study that Dr. Rowe passed on to us by Dr. Kevin Kelley, pediatric GI, that indicates food allergies contribute to OI.

Marcia, yes- a biopsy is dramatic, but my son was fighting for his life. He couldn't eat anything. He had many awful procedures that year in an attempt to figure out what was wrong- endoscopies, colonoscopies, biopsies, gastric emptying studies, antroduodenal manometry with a tilt table test, etc. We didn't start at Hopkins, we ended up there after exhausting local pediatric GI's, Atlanta pediatric GI's, etc. A pediatric GI motility expert at Hopkins figured out that Mack's small bowel wasn't functioning properly due to an underlying autonomic dysfunction. That's when he got passed on to Dr. Rowe. An underlying sensitivity to milk protein was contributing to Mack's issues and eliminating that helped, but didn't magically solve all of his problems.

This thread began by asking if POTS and CFS are the same thing. Indeed, Dr. Rowe's research strongly suggests that the majority of CFS sufferers also have an OI. And.....undtected, underlying food allergies can contribute to OI. An important piece to the puzzle.

[juliegee]

Another thought, Rama. Check out all of the mast cell chatter on this site. There is a growing body of research providing evidence that mast cells- involved in allergic reactions- irrefutably play a very important part in orthostatic intolerance.

I have learned SO much from listening to everyone's experiences here, trying to find trends, then reasearch to back them up. I really think medical researchers could learn from us at this point

Julie

[ramakentesh]

I can kinda see where your coming from, but there are a whole lot of doctors who are specifically studying POTS that would suggest that there are other causes for the majority of POTS patients - Dr.Grubb, Dr. J Stewart and the Baker institute in Australia.

Again im not disputing that people have food intolerances when they have OI - I did - but all the major research on these conditions with the exception of the Mast Cell disorders does not indicate that they are the chief cause of these disorders.

The majority of the research does indicate that OI is caused by either an autoimmune attack on the peripheral nerves of the veins either in the legs or possibly the stomach, faulty reuptake of Norepinephrine at the synaptic cleft, Low Nitric Oxide levels in specific local artery groups.

Either way, time will tell, but again my point was that gluten ataxia is quite different to OI and the majority of patients here have OI which doesnt automatically mean they have gluten ataxia.

[juliegee]

I can kinda see where your coming from, but there are a whole lot of doctors who are specifically studying POTS that would suggest that there are other causes for the majority of POTS patients - Dr.Grubb, Dr. J Stewart and the Baker institute in Australia.

Again im not disputing that people have food intolerances when they have OI - I did - but all the major research on these conditions with the exception of the Mast Cell disorders does not indicate that they are the chief cause of these disorders.

The majority of the research does indicate that OI is caused by either an autoimmune attack on the peripheral nerves of the veins either in the legs or possibly the stomach, faulty reuptake of Norepinephrine at the synaptic cleft, Low Nitric Oxide levels in specific local artery groups.

Either way, time will tell, but again my point was that gluten ataxia is quite different to OI and the majority of patients here have OI which doesnt automatically mean they have gluten ataxia.

Hi Rama-

I think you're right. Allergy/mast cell issues are just a piece of the puzzle. Certainly not the only cause of OI or CFS. There may be NO one cause that fits each of us. (BTW, allergy issues ARE mast cell activated.)

If you are interested, look back at this thread on Page One to my description of Dr. Rowe's model of CFS. OI is an overriding symptom affecting 90% of CFS patients. Allergy issues are ONE of many issues that further complicate this syndrome. Dr. Rowe lists "pelvic venous incompetence" as another issue affecting many CFS patients. I researched it a bit and it sounds an awful lot like the vein issues you describe affecting the stomach or veins.

There is much overlap and agreement between the top CFS/OI researchers, but we are a long way off from a consensus about all of the cause of CFS/OI's.

I appreciate all of your insights, sharing of research, etc. Rama. You are a unique thinker and I look forward to your posts.

Julie