Living With Ataxia - Online Support Group

Happy New Year everyone!
Does anyone suffer from ataxia caused by gluten ingestion? I am still trying to figure out if mine is due to gluten or just plain old episodic ataxia. I would love to hear other's expeiences with trying the gluten-free diet and if it worked for them. I have been doing it all summer, and apart from losing weight, I haven't noticed a difference.....if anything my ataxia seems to have gotten worse. Someone had mentioned it might be due to not getting enough b vitiamins since a lot of breads are fortified with b vits......so I am increasing my b vitamin supplement. But I would like to hear if that diet has worked for anyone else....
Thank you,
Jennifer

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Hello Jennifer
Whilst I am for trying anything that keeps this condition at bay, unless your ataxia has been stated to be a gluten ataxia, or the Doctor or Specialist advised the diet, I wouldn't try it. Have you discussed this with your Doctor or Specialist?
I worked with someone whose Husband was a coeliac (I think that is how its spelt) and to treat this disease the person is put on a gluten free diet. The point I make is that gluten free diets are usually for a condition and it does lack certain vitamins which are needed, and should be provided for some other way. Take care.
Regards
Carol
Jennifer,
I have gluten ataxia and (really bad) celiac disease. Send me a personal message/email if you have specific questions. I'll do my best to answer them from my experience. In short, going gluten free saved my life. No exaggeration. Whenever I get contaminated the least bit, I end up in the hospital. Ataxia ensues about 5-6 weeks later for me, though for some with gluten ataxia, it is the first sign that they have ingested gluten. Only 13% of celiacs and those with gluten intolerance have both the GI symptoms and the neurological symptoms says some research. I have a lot of research that I've read and would be glad to share with you, if you become interested in learning more. Thanks for writing. I'm trying to find others who have gluten ataxia. For me, it never seems to fully go away, but does more or less "fade into the background" except for when I become tired or my body is literally fighting itself.

Sarah
Hi Jennifer,
Im Caz and I have gluten ataxia. The diagnosis is made by looking for antibodies to gluten and genitic study. The diet is extremely strict gluten and wheat free. The diet will hault progression in those where the ataxia is triggered by gluten. It takes a year on the diet before major improvements, but I noticed improvement quite quickly and then big attacks if accidently exposed to gluten. I still get some symptoms all the time and more if I dont manage fatigue, stress or heat intolerance. Also in winter I am worse due to reduced vit D. SInce I caught it early before evidence of changes on MRI I have been told I could get completely better, but I'll be happy even just to get no worse. You do not need to have coeliac disease to have gluten ataxia, but you would be gluten intolerant as evidenced by the antibodies. It is the antibodoes that trigger an autoimmune response and become neurotoxic. Write any time.
Best wishes
I have had ataxia over 20 years it is undisgnosed. I have been tested for everything but glutten. I also have no family history. Gluten Ataxia srrms to fit me. How do I get tested? Will a regular gluten sensitivity test do?

Sarah M. Bosse said:
Jennifer,
I have gluten ataxia and (really bad) celiac disease. Send me a personal message/email if you have specific questions. I'll do my best to answer them from my experience. In short, going gluten free saved my life. No exaggeration. Whenever I get contaminated the least bit, I end up in the hospital. Ataxia ensues about 5-6 weeks later for me, though for some with gluten ataxia, it is the first sign that they have ingested gluten. Only 13% of celiacs and those with gluten intolerance have both the GI symptoms and the neurological symptoms says some research. I have a lot of research that I've read and would be glad to share with you, if you become interested in learning more. Thanks for writing. I'm trying to find others who have gluten ataxia. For me, it never seems to fully go away, but does more or less "fade into the background" except for when I become tired or my body is literally fighting itself.

Sarah
Hi Meghan,
Nice to meet you. Well, the diagnosis of gluten ataxia isn't easy to get unless you have a very knowledgeable doctor who knows about Celiac Disease. I'm sorry you've been undiagnosed for so many years!!

Do you know anyone who lives near to you who has Celiac Disease? If not, I suggest calling your local CSA office: http://www.csaceliacs.org/ Hopefully you'll be able to find someone there who can tell you which doctors in your area might be able to make a diagnosis of Celiac Disease / Gluten Ataxia and actually know what they are doing. :) You will most likely need a GI doctor because CD is diagnosed with endoscopy and bloodwork to show that there are antibodies to gluten in your blood. There is considerable debate about how accurate such measures (except for the endoscopy results, which will show flattened villi in someone who has CD, so long as the "damaged" parts of the small intestine are viewed and not just the "healthier" parts!) are in diagnosis, as you will see on forums at www.celiac.com and in the Celiac Disease forum at www.MDJunction.com. These two places are GOLD MINES for information! For now, here's the very basic of the basics about diagnosis of CD and gluten ataxia. http://www.csaceliacs.org/celiac_diagnosis.php

I am very glad to help in any way I can and I have much more information on this topic if you're interested. Please email me and I'll do what I can to answer questions. I have also shared quite a bit of information about gluten ataxia and such on the forums mentioned above. In fact, if you just start looking around in there, you might say, "ahhh....this makes more sense now!" You see, folks who have CD or gluten intolerance often present with very different symptoms. That's why it's hard to diagnose. Some people seem to only have the neurological problems associated with it and none of the GI symptoms, others get GI problems but no neuro problems, and some (like me) get walloped by BOTH! Some folks even have cognitive/emotional problems because of the effects CD/Gluten Intolerance has had on their bodies, and schizophrenia is related to CD. I don't say this to scare you or anyone else. The point is that, if you have ANY REASON to suspect you might have CD or Gluten Intolerance or Gluten Ataxia, PLEASE GET EVALUATED THOROUGHLY and PURSUE a diagnosis until it is clearly either diagnosed or ruled out!!!

The damage accumulates over time and may or may not be reversible. (Research studies disagree on the reversibility of such damage to the brain, CNS, and even PNS.) But it IS POSSIBLE TO STOP THE DAMAGE from getting worse, by maintaining a STRICT gluten-free diet, and that, for many of us here struggling with ataxia, is in itself a GIFT. How many people who have ataxia would give almost anything to keep their ataxia from progressing (if it is a progressive form) and perhaps have a chance at getting better?!

By the way, I have no clear family history of it either. I'm just the "oddball" of the bunch and seem to have so far accumulated every disease and health problem possible from both sides of the family.

Honestly, many people, as you'll find when reading the forums, may never actually get a doctor to say or put into writing, "Patient has Celiac Disease" but after maintaining a gluten-free diet, it's become clear to them that regardless what "traditional medicine" and doctors and tests say....they are convinced they have either Celiac Disease or Gluten Intolerance based on how their symptoms decrease when gluten-free and fire-up when they get "glutened".

Talking to real people who have it can be very very helpful. Their stories are interesting and you can learn a lot from each person's journey.

Feel free to email me.

Truly Gods Grace [at] g mail d ot com (no spaces - I did this so that spam software won't find it...hopefully)


Meghan McBrearty said:
I have had ataxia over 20 years it is undisgnosed. I have been tested for everything but glutten. I also have no family history. Gluten Ataxia srrms to fit me. How do I get tested? Will a regular gluten sensitivity test do?

Sarah M. Bosse said:
Jennifer,
I have gluten ataxia and (really bad) celiac disease. Send me a personal message/email if you have specific questions. I'll do my best to answer them from my experience. In short, going gluten free saved my life. No exaggeration. Whenever I get contaminated the least bit, I end up in the hospital. Ataxia ensues about 5-6 weeks later for me, though for some with gluten ataxia, it is the first sign that they have ingested gluten. Only 13% of celiacs and those with gluten intolerance have both the GI symptoms and the neurological symptoms says some research. I have a lot of research that I've read and would be glad to share with you, if you become interested in learning more. Thanks for writing. I'm trying to find others who have gluten ataxia. For me, it never seems to fully go away, but does more or less "fade into the background" except for when I become tired or my body is literally fighting itself.

Sarah

Hi Sarah


I just read your comment stating you have Celiac Disease and Gluten Ataxia. I was diagnosed with Celiac Disease 6 months ago and have been gluten-free since. I trace problems back to my childhood. I had not connect my neurologic problems to gluten until I read an article in "Living Without" magazine. It was like a light bulb moment. The article could have been written about me. It took me years to get a diagnosis of Celiac Disease. The thought of now trying to convince the doctors that the neurologic problems could be related to gluten as well is overwhelming, I do not know where to start.

I have seen many doctors, (neurologists, gastroenterologists, rheumatologists allergists) since I was 8 years old and I was never given reasons for all the symptoms. I was told I had neuropathy but no reason. My fear is that the doctors will know nothing about ataxia as they know little about Celiac.

 

I found your comment very interesting. I would appreciate any advise you can give.


Sarah M. Bosse said:

Jennifer,
I have gluten ataxia and (really bad) celiac disease. Send me a personal message/email if you have specific questions. I'll do my best to answer them from my experience. In short, going gluten free saved my life. No exaggeration. Whenever I get contaminated the least bit, I end up in the hospital. Ataxia ensues about 5-6 weeks later for me, though for some with gluten ataxia, it is the first sign that they have ingested gluten. Only 13% of celiacs and those with gluten intolerance have both the GI symptoms and the neurological symptoms says some research. I have a lot of research that I've read and would be glad to share with you, if you become interested in learning more. Thanks for writing. I'm trying to find others who have gluten ataxia. For me, it never seems to fully go away, but does more or less "fade into the background" except for when I become tired or my body is literally fighting itself.

Sarah
Hi Barbara,
The article in Living Without was actually written about me and another lady (Carolyn D.) who participates on this forum. Glad you saw the article and had a lightbulb moment! I do have a few ideas about how to talk to doctors regarding Gluten Ataxia, but you're right - it's downright daunting! If I have time tonight after my work shift, I'll give you some info. Hope I can be helpful!

Sarah Bosse

Sarah and Barbara -  I too had that lightbulb moment when reading the "Living Without" Article.  Sarah - thanks so much for participating in the article.  I would have to say that I am pretty lucky in the fact that I was raised in a "wheat free" (pretty much gluten free) house as a kid, and when I started getting really sick in my first year at college - major brain fog, being uncoordinated (never thought about it until now - but short term memory loss issues) and severe fatigue - one of the things I tried relatively early on - was eliminating wheat.  Every doctor that I told about it just gave me a funny look when I said what "cured" me.  I have never had any (not even slightly) of the typical stomach issues common with a gluten intolerance.   Gluten Free or gluten intolerance or even any of my wierd issues from college have never been noted on my chart.  Even with the most well meaning doctors rarely understand the gluten/brain connection.

 

It took a few years - but I did finally recover coordination (oh the sad, comedy of me climbing mountains as a college student and how many times I fell!)  And though I never realized that it could have been caused by my college episode - (that was the true lightbulb for me) and have trained myself to get around short term memory issues (timers and post it notes, emailing messages to myself, etc.).   I am wondering if the migraines that I've had since about that time could be related, but I'm not sure.

 

After reading what others went through, I realize that I am extremely lucky that I tried the elimination diet so early on (not to mention growing up in a wheat free house!)  I am constantly amazed that I never hear about the other side of gluten intolerance, I KNEW I couldn't have been the only one to have a strong neurological reaction.  I am glad there is a place were someone else might be able to help themselves figure out what is going on. 

 

Good Luck Barbara - you can do it!  I hope you get some answers :)

Hi Folks!
I am pretty worn out tonight, so I probably don't have energy to give to really writing well about how to tell your doctors about Gluten Ataxia. :/ Sorry. So I'll write just a little and go to bed, hoping to have more energy to spend on this tomorrow so I can really give you something that's useful. :) On the positive side, I spent some time talking to a friend of mine who has recently been diagnosed with celiac or gluten intolerance...so the energy wasn't wasted. :D
Several things come to mind:
* The doctor him/herself - is he/she INTRINSICALLY willing to help?
* Why are doctors reluctant to help?
* Who IS able to help? - Naturopathic / Homeopathic medicine.
* Research - how credible is it? how is it funded?
I've not had much luck with doctors. I can tell you what's happened so far and what hasn't worked (sorry to rain on the parade). Maybe in the future I can tell you what works by experience! :D But for now, I can tell you what I understand about how the whole process at large works and hopefully you can come up with some great ideas off of that which I've never thought of - please share the wealth! :D
Doctors in traditional medicine respect research. Well...some do anyways. I literally have 3-inch D-ring binders absolutely crammed FULL of gluten ataxia and celiac research from countless hours of PubMed and Medline database article digging and reading I've done in the last two years. I've even created CD's of these articles, organized with several different filing systems for the doctor's convenience. I wonder how many times I've now slapped my binders and CD's down on an exam table or counter, and then begun BEGGING my doctors to READ the material and see if there is ANY WAY to help me beyond telling me to "stay 100% gluten free" (which, as you know from reading the article, is something I absolutely must do anyways or there are very dire consequences). I've even said to them, "I know that you're human and you cannot possibly know EVERYTHING there is to know about every disease, and I don't expect you to have answers for absolutely everything, but if you don't know how to help me further because you can't prescribe meds, then please spend time reading articles and searching for answers or at very least finding people in the medical field who already have the answers and helping me contact them! I am the one WORKING here. Every single day I'm working to improve my health by eating healthy (now on the candida diet plus have cut out many foods I'm reacting to), exercising (as best I can), taking responsibility to get adequate sleep (using sleep meds), taking supplements to improve deficiencies, and pushing myself to give 175% of myself to everything I commit to doing. A doc may make recommendations, but I'm the one doing the daily work to make it happen. Instead of punishing me for my resourcefulness by just "letting my case fall into the cracks," won't you help me by providing some direction to my efforts, being proactive to find answers and get results, seeing as I'm very committed to improving my health?" My pleas have very often fallen on deaf ears. I'm about to try this again with a new GP. She said she will help me. But that's what they all say, and when the papers hit the exam room table, nothing happens in terms of follow-up. I've tried being super nice. I've tried living up to my last name (Bosse). I've cried out of desperation and frustration, I've blown up in anger and yelled. I've done it all. I am human too. :/
This leads to a question. Is the doctor willing to help out of intrinsic (internal) positive motivation to help another human being even if it requires some long nights of study after clinic hours and some phone calls and footwork? Is this doctor "done" with you if he/she cannot prescribe you a medication to take? Many doctors are trained to see celiac disease and its related disorders as incurable, something they can't solve with medication (that = incurable in our western medicine culture), so they figure if you're doing everything right (i.e. eating 100% gluten free, exercising, sleeping...), then you're going to feel as good as you can feel anyways. If you're still complaining, then you're in denial about the disease and you need to get used to the idea that you're not going to get better. I was told this by a physiatrist (rehabilitation medicine doctor) for whom I had previously had much respect. I gave him my CD and copies from my binder with a letter that I had painstakingly written, imploring him to help me research further into other lifestyle changes, diets, treatments, supplements, etc that could help me. He threw all my hours of work into a file in a filing cabinet and to my knowledge has never looked at it since. In their medical training, most docs get perhaps a paragraph of text regarding celiac disease. My life is wrapped up, inadequately so, into that doctor's textbook paragraph.
IF THAT DOCTOR ISN'T MOTIVATED TO HELP YOU, GO DOCTOR SHOPPING YET AGAIN! There may be nothing you can do to convince him or her to help you (short of leaving dead stinky fish at his or her doorstep each morning). You can also try writing a kind, sincere note explaining how that doctor's decision not to help you affects your life and the lives of his/her other patients. Explain that undiagnosed gluten ataxia will progressively get worse, but that the damage can be STOPPED in its tracks by a gluten free diet. Explain that there are people whose ataxia has become serious because they were not properly diagnosed for years, after being ignored by neurologists (neuropathy from gluten ataxia doesn't show on nerve conduction tests like typical neuropathy, so it's discounted by neurologists; and MRI's show advanced GA, but it's usually in very small little white spots that western doctors call "UBO's" or unidentified bright objects - "artifacts"), general physicians, gastroenterologists, ER doctors, physiatrists, and therapists. If only their doctors had taken the time to listen, research, and reach out, their lives may have been very different now. Doctors need to hear this in a calm, focused way. They need to be reminded that "do no harm" is sometimes synonymous with "do all you can and do not ignore".
So, who IS able to help? Naturopathic and Homeopathic practitioners. Thus far, these are the only folks who have REALLY helped me. Doctors only told me to do things I have already been doing without (or prior to) their golden stamp of approval. But Naturopaths and Homeopaths have lead the way in helping me understand other processes at work in my body. For example, the candida and celiac disease connection.
I'll give you a few examples that you can check you for yourselves. These are all articles and information from natural health sources:
http://www.denvernaturopathic.com/news/celiac.html
http://www.youtube.com/user/healthnowmedical
http://www.healthnowmedical.com/index.html
http://www.lenandjoe.com/
http://www.thecandidadiet.com/
If you took even a few moments to look through any of those sources, you were probably confronted with helpful and useful, applicable information (imagine that!) which was more than your traditional doctors EVER gave y

Sorry...continued from above...

 

 

If you took even a few moments to look through any of those sources, you were probably confronted with helpful and useful, applicable information (imagine that!) which was more than your traditional doctors EVER gave you regarding celiac disease or gluten ataxia.  The info IS out there - but it is your responsibility to HUNT for it.  I don't expect my doctors to do all the searching FOR me, but I do expect them to do some searching WITH me.  :)  

 

I'd like to address that last point - RESEARCH - but I'm pretty tired, so please forgive me for copying and pasting from an email I wrote to a friend earlier today.  It gets the point across, though I may have repeated myself up above.  

 

RESEARCH

Oh, by the way, if you start looking for medical research or anything of that type, you should save your time and SKIP looking for American Medical Association sources.  Most doctors in the US don't have a clue, and many of the research studies are skewed and have really poor controls (i.e. study is not double-blind, or sample is very very small, etc).  I was actually feeling offended when I read some of the conclusions to the articles in the AMA journals!  I couldn't believe what they had written and passed off as "professional".  Head for UK journals in general, and the researchers who are well-known in Celiac research.  http://sites.google.com/site/jccglutenfree/topceliacdoctorsandresea...  Dr. Hadjivassiliou (I think I even spelled his name right without looking it up!) would definitely be one.  Celiac was discovered in Holland, and there's good research from Holland, Ireland, and Australia.  Some research has also come out of Canada.  Interestingly, countries that have socialized health tend to have better Celiac research.  I think this is because there are no drugs to specifically treat celiac and their research money is government-funded.  Our research money is almost entirely funded by Big Pharma, so very little research funds get put into diseases (like Celiac) that have no medicinal "cure".  Guess that's one thumb up for socialized medicine in the US!  Ha!

 

That Dr. Vikki Petersen I told you about would be another good source of info that's practical, though she (like so many others who are actually HELPFUL in dealing with Celiac etc) studies and works as a Naturopath.  Naturopaths and Homeopaths (which sounds more like the name of a mental disorder to me - lol!) will become your friends.  :)  They really are very helpful.  (The candida link I gave you above from Denver came from a Nauturopath.)  Here's Dr. Vikki's book.  Here also is her website and her youtube channel.  I'd love to fly out to CA to see if she could help me...but the money will probably never exist for that to happen in reality (although I'm not so sure I want to fly in the sky anymore anyhow! http://www.threadless.com/product/2591/Land_of_the_Free).

 

So...research ties together ideas and theories.  It's a good thing in general.  But Naturopathy and Homeopathy take those theories and apply natural SOLUTIONS to them so that you can actually heal.  It's great to have the head knowledge of what's going wrong, but if you can't apply that knowledge then what good does it do you?  Not much.  That's why traditional medicine doctors often don't know what to do for you besides tell you to "stay gluten free, exercise, and get good sleep," since they can't prescribe a pill and if they can't write an Rx they figure their job is done and it's on to the next patient.  That's where naturopathy and homeopathy pick up the baton and keep running with it.

 

This website, http://sites.google.com/site/jccglutenfree/home, though not the prettiest, is by far one of the best and most useful websites I've found for "trying to figure out what's wrong with me" by reading.  Almost anything you pick up to read on this website will be worthwhile.  (This was where I actually first heard of "gluten ataxia" and Dr. H's research.)

 

 

Alright, thanks for reading, and I hope I've been helpful and not too long-winded!  :P  Feedback is greatly appreciated.  I wade these deep waters with lots of help from folks like y'all!


Sarah M. Bosse said:

 

Hi Folks!
I am pretty worn out tonight, so I probably don't have energy to give to really writing well about how to tell your doctors about Gluten Ataxia. :/ Sorry. So I'll write just a little and go to bed, hoping to have more energy to spend on this tomorrow so I can really give you something that's useful. :) On the positive side, I spent some time talking to a friend of mine who has recently been diagnosed with celiac or gluten intolerance...so the energy wasn't wasted. :D
Several things come to mind:
* The doctor him/herself - is he/she INTRINSICALLY willing to help?
* Why are doctors reluctant to help?
* Who IS able to help? - Naturopathic / Homeopathic medicine.
* Research - how credible is it? how is it funded?
I've not had much luck with doctors. I can tell you what's happened so far and what hasn't worked (sorry to rain on the parade). Maybe in the future I can tell you what works by experience! :D But for now, I can tell you what I understand about how the whole process at large works and hopefully you can come up with some great ideas off of that which I've never thought of - please share the wealth! :D
Doctors in traditional medicine respect research. Well...some do anyways. I literally have 3-inch D-ring binders absolutely crammed FULL of gluten ataxia and celiac research from countless hours of PubMed and Medline database article digging and reading I've done in the last two years. I've even created CD's of these articles, organized with several different filing systems for the doctor's convenience. I wonder how many times I've now slapped my binders and CD's down on an exam table or counter, and then begun BEGGING my doctors to READ the material and see if there is ANY WAY to help me beyond telling me to "stay 100% gluten free" (which, as you know from reading the article, is something I absolutely must do anyways or there are very dire consequences). I've even said to them, "I know that you're human and you cannot possibly know EVERYTHING there is to know about every disease, and I don't expect you to have answers for absolutely everything, but if you don't know how to help me further because you can't prescribe meds, then please spend time reading articles and searching for answers or at very least finding people in the medical field who already have the answers and helping me contact them! I am the one WORKING here. Every single day I'm working to improve my health by eating healthy (now on the candida diet plus have cut out many foods I'm reacting to), exercising (as best I can), taking responsibility to get adequate sleep (using sleep meds), taking supplements to improve deficiencies, and pushing myself to give 175% of myself to everything I commit to doing. A doc may make recommendations, but I'm the one doing the daily work to make it happen. Instead of punishing me for my resourcefulness by just "letting my case fall into the cracks," won't you help me by providing some direction to my efforts, being proactive to find answers and get results, seeing as I'm very committed to improving my health?" My pleas have very often fallen on deaf ears. I'm about to try this again with a new GP. She said she will help me. But that's what they all say, and when the papers hit the exam room table, nothing happens in terms of follow-up. I've tried being super nice. I've tried living up to my last name (Bosse). I've cried out of desperation and frustration, I've blown up in anger and yelled. I've done it all. I am human too. :/
This leads to a question. Is the doctor willing to help out of intrinsic (internal) positive motivation to help another human being even if it requires some long nights of study after clinic hours and some phone calls and footwork? Is this doctor "done" with you if he/she cannot prescribe you a medication to take? Many doctors are trained to see celiac disease and its related disorders as incurable, something they can't solve with medication (that = incurable in our western medicine culture), so they figure if you're doing everything right (i.e. eating 100% gluten free, exercising, sleeping...), then you're going to feel as good as you can feel anyways. If you're still complaining, then you're in denial about the disease and you need to get used to the idea that you're not going to get better. I was told this by a physiatrist (rehabilitation medicine doctor) for whom I had previously had much respect. I gave him my CD and copies from my binder with a letter that I had painstakingly written, imploring him to help me research further into other lifestyle changes, diets, treatments, supplements, etc that could help me. He threw all my hours of work into a file in a filing cabinet and to my knowledge has never looked at it since. In their medical training, most docs get perhaps a paragraph of text regarding celiac disease. My life is wrapped up, inadequately so, into that doctor's textbook paragraph.
IF THAT DOCTOR ISN'T MOTIVATED TO HELP YOU, GO DOCTOR SHOPPING YET AGAIN! There may be nothing you can do to convince him or her to help you (short of leaving dead stinky fish at his or her doorstep each morning). You can also try writing a kind, sincere note explaining how that doctor's decision not to help you affects your life and the lives of his/her other patients. Explain that undiagnosed gluten ataxia will progressively get worse, but that the damage can be STOPPED in its tracks by a gluten free diet. Explain that there are people whose ataxia has become serious because they were not properly diagnosed for years, after being ignored by neurologists (neuropathy from gluten ataxia doesn't show on nerve conduction tests like typical neuropathy, so it's discounted by neurologists; and MRI's show advanced GA, but it's usually in very small little white spots that western doctors call "UBO's" or unidentified bright objects - "artifacts"), general physicians, gastroenterologists, ER doctors, physiatrists, and therapists. If only their doctors had taken the time to listen, research, and reach out, their lives may have been very different now. Doctors need to hear this in a calm, focused way. They need to be reminded that "do no harm" is sometimes synonymous with "do all you can and do not ignore".
So, who IS able to help? Naturopathic and Homeopathic practitioners. Thus far, these are the only folks who have REALLY helped me. Doctors only told me to do things I have already been doing without (or prior to) their golden stamp of approval. But Naturopaths and Homeopaths have lead the way in helping me understand other processes at work in my body. For example, the candida and celiac disease connection.
I'll give you a few examples that you can check you for yourselves. These are all articles and information from natural health sources:
http://www.denvernaturopathic.com/news/celiac.html
http://www.youtube.com/user/healthnowmedical
http://www.healthnowmedical.com/index.html
http://www.lenandjoe.com/
http://www.thecandidadiet.com/
If you took even a few moments to look through any of those sources, you were probably confronted with helpful and useful, applicable information (imagine that!) which was more than your traditional doctors EVER gave y

Thank you so much Sarah! I apologize for not recognizing that the article was about you. I am so sorry for all you have been through. Hopefully, we can help each other.

 

I am lucky to have immediately made an appointment at Columbia Presbyterian Celiac Center when I got the diagnosis of Celiac. (My gastro-enterologist said, "Your biopsy came back positive for Celiac, I will not say you do or do not have Celiac Disease. You can try a gluten free diet if you want to but it is really restrictive. The bloodwork came back and one test is positive and the other is negative. I will see you in a year" (the bloodtest he was referring to was the DQ2 and DQ8 genes, rarely are both positive)- This was like being hit over the head with a bat. I knew nothing about Celiac Disease and knew I was not going to learn anything from him. I went home and did research online. I order Dr Green's book "Celiac Disease a Hidden Epidemic". Reading it I knew I had to go to his clinic. Long story short, I went to Columbia Presbyterian. When I spoke to a dietician she told me that my gastro-enterologist was giving me a death sentence by saying "it was up to me whether I decided to "try" a gluten free diet.

 

Today I am off to my GP. To discuss ataxia. I will let you know how it goes. I have a crazy day but I will be back to let you know how it goes. I am really new to this forum ( first day in) so I am sort of trying to figure things out here. Again, thanks for offering to share your experience and help others.

 

Thank you

Barbara

http://www.denvernaturopathic.com/news/celiac.html

This article is like a mimi summary - right down to the Yeast and Irish!) I had figured out the Candida separately not realizing there was a possible connection. Thanks for the posts.

I completely agree with the reason for lack of research - and, indeed how hard mainstream media also fights the awareness of this issue- no pill therefore not a worthwhile issue for research-and since "real" doctors won't recognize it- it has got to be some sort of fad. Since I self diagnosed 20 years ago, I am past caring whether or not anyone in the medical profession agrees with me (for years when people would argue with me that it's not possible for a connection between wheat and a brain issue I would simply say: "if this is my own personal psychosis, then fine I will take it!"). To get an official diagnosis now would mean I'd have to trash myself by going off the diet - sorry, NOT going to do that to myself for a rubber stamp. But I like to hear about other things to look for or avoid (like the Candida - that took me 2 to 3 years of pain and frustration). What other ties are there that I should know about - the more I read the more I nod my head!

So I guess what I am saying is: 1) thanks so much for the leads and links, 2) yes, there are people with "after" stories- I do just fine- I think you can self repair on some things, other changes you can learn to compensate for, and last but not least 3) we ARE our own best advocate - kudos to any and all who keep fighting to figure out what is going on long after the "experts" give up. I am Not anti- doctor... If I break my leg, off to emergency I will go... But this disease/condition demands that you become more health informed than others, and constant vigilance to it may seem an overreaction but it's a key to a healthy now and future for us. (okay off the soap box)

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