Kamma

Thank you, Peter.  I will continue to post in both places.  I'm sure you would agree that factual information based on credible and up to date research is valuable to all who read on here so they can make informed decisions no matter what level of sensitivity they are.  

In terms of soy bean flour I would proceed with caution as a fairly recent study showed cross contamination in various inherently gluten free grains.  Especially in the milled flour products of these grains.  Some flours tested above 20 ppm gluten and in one soy flour example, it tested in excess of 2000 ppm gluten.

 

Here is the abstract of the study here:

 

http://www.journals....0234-8/abstract

 

and an article on the same study here:

 

http://glutenfreecoo...Of-Revision.htm

It takes a while for the antibodies to leave your system.  For example, AGA antibodies have a half life of 120 days.  So even if you stopped all gluten now, the antibodies would still be circulating your system full on for almost half a year.  Hadjivissilliou seen the most improvements after one year.  That's of course if you can keep the trace gluten out of your system.  That probably explains the intermittent improvements.

 

I totally agree with you about still using it and exercising.  Absolutely essential and good on you for keep going with the exercise and walking.  I have done yoga for thirty years and in the middle of my journey I could no longer stand without swaying and wobbling back and forth.  I still tried to hold the poses but would fall over.  I tried to 'remember' what it felt like, each pose, how my feet would support me and so on and that helped a bit.  I walked like a drunk but made myself keep walking.  The alternative was giving in and not trying and that felt totally anathemic and horrible.  A living death!

 

I felt pretty good in my second week as well and then took a diver for about two weeks and the wobblies returned.  The fatigue lifted and the horrible blackness that you mentioned had disappeared.  I can always link the set backs to something that I ate.  Sometimes you get really strong and think "I can have that!" That being a seemingly gluten free food but you find out it wasn't.  In my first understanding of trace gluten, I made a lazy cabbage roll dish for my folk with ketchup.  That was the only non-whole food food ingredient in it.  When I phoned the manfacturer and gave the bar code, the public relations person checked and said it had been made on gluten containing production lines.  A light bulb went off in my head and I realized I would have to be way more careful.  I can't do vinegar either even though it's supposed to be gluten free.

 

I don't know if a full recovery can be made.  Occasionally I still stagger, lose my balance and my upper torso leans way over.  Those occasional times are acceptable compared to what it once was.  There is damage that is permanent and it's learning how to work with that. 

 

I understand about 'falling off the radar' when it comes to the medical professionals.  Throughout my whole journey I began to think the medical field was only beneficial in helping people who had broken bones and could go to the hospital and get fixed up.  I did have a good neurologist who was very open.  He kep sending me to all these other experts in the process of elimination and they would take a few of my symptoms and presenting issues and ignore the others that didn't fit their diagnosis.  My head was so confused and I felt utterly unhappy cause nothing seemed to fit right.  I would also have idiopathic seizures and those were the worst especially when they happened in a public place.  I didn't go out for the longest time because I was afraid of having another one in public. 

 

Finally, I got sick of the whole lot of them (medical professionals) and sat down and reviewed my family history.  Celiac runs in my family and I stumbled upon gluten ataxia.  I took it to my neurologist and he said, "Yes!"  Then looked at me and said, "My sister has neuropathy that was linked to gluten.  You'd think that as a neurologist I would have figured you out sooner"  Then he was full on board with learning about gluten ataxia and asked me to send him all the research I could come across.  It is so very new and as he said, 'still totally on the fringes of most medical people's awareness'.

 

Keep the faith clevercate, it will slowly get better. Push yourself where you can and rest where you can't.  Unlike me, you have been struggling with this for almost ten years and it's going to take time.  I think when you start to get better, you get really impatient and want to see improvement pronto.  At least it was like that for me.  Any setback would make me depressed until I began to see improvement again.  I'd have to remind myself, well, you couldn't do this or that six months ago.

 

You sound like a very strong woman that has really pushed herself over the last ten years.  Kudos to you for still striving and not giving up.  )

 

Kamma

Hi Leis

 

I looked at the links you provided.  I have never heard of Dr. Charles Parker and wanted to see what his credentials were and what qualified him as an expert.  He has a bachelors degree in biology and labels himself as a neuroscientist ( (which is different than a neurologist and there is nothing that certifies you as a 'neuroscientist') and has taken some courses in psychiatry.  This doesn't provide him any qualifications to be able to speak as an expert on gluten.  He has done no clinical research and it doesn't look like he's ever worked with celiac/gluten intolerance people in his practice which appears to be webbased.

Here:  http://docparker.typ....com/about.html

 

I'd just like to caution you to familiarize yourself with the basic fundamentals of both MS and gluten ataxia or celiac as there is a lot of people out there who write on it, claim they are experts, but pull their opinions out of their ass and without credible research.  It's okay to hypothesize.  But without a firm understanding, you can be easily manipulated to believe one thing versus the other even when it's not accurate.  Also, when you're first diagnosed with something, you're at your most emotionally vulunerable point and you can be tossed around like a little boat in a huge storm at sea.

 

From the gluten ends of things the more credible researcher to start out with, other than Hadjivassilliou is:

 

Dr. Alessio FAssano, Centre for Celiac And Research, Massachusetts University Hospital, http://www.celiaccenter.org

 

and the MS Society's have a whole whack of information to start building your knowledge level.

 

Kind regards,

Kamma

Hello Leis,

 

I was diagnosed with gluten ataxia last year and do have some lesions.  My brother was diagnosed with progressive relapsing MS, the rarest and most disabling type, fifteen years ago.  My understanding of the lesions is it's where they are forming in the brain and brain stem that decides whether it can be diagnosed as MS or not.

 

On a positive note, my brother adopted a totally gluten free/grain free diet after I was diagnosed and shared information with him.  He had also eliminated dairy products years ago.  There are some studies that show some but not all MS afflicted people gain some relief of symptoms after going absolutely gluten free (i.e. no processed gluten free products and little non gltuen grains / cross contamination).  There has been no clear connection established as of yet.  In my brother's case, his fatigue and restless leg syndrome decreased as well as his vertigo.  He's had fewer acute attacks.

 

Jane Anderson writes about the research on the connection between gluten and MS here:

 

http://celiacdisease...e-Sclerosis.htm

 

and includes the research paper citations that she used to compile the article at the bottom of the page.  You can read first hand the research that is being done in this area.

 

If accurate, a diagnosis like this is devastating.  The bright side could be that you might have the kind of MS where you can have an attack and then go into remission for years.  I applaud your efforts to dig deep and research what would be the best approach to move forward.  Some people have ms and are able to live full lives with minimal impact.  I hope that in your case, this is the situation. 

 

Big hug,

Kamma

 

Edit:  Hello Leis, I've done some checking and found a few more things that might help.  According to the MS Society of Canada and the National MS Society, a diagnosis of MS must include:

 

"In order to make a diagnosis of MS, the physician must:

• Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
• Find evidence that the damage occurred at least one month apart AND
• Rule out all other possible diagnoses

In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), visual evoked potentials (VEP) and cerebrospinal fluid analysis to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as a clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS."

 

and the strategies used for doing this should not just be an MRI but also:

 

"At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. The doctor uses several strategies to determine if a person meets the long-established criteria for a diagnosis of MS and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis."

 

http://www.nationalm...g-ms/index.aspx

 

So, hold out judgement on the MS for a little while until your doctor completes the other tests and follow through on the different strategies.  There is hope that it could be something else. 

 

Kind regards,

Kamma

Fingers crossed too that you won't have to have radiation.  Radiation is one of my fears as well.  The only good thing I can say about that is that the effects of radiation do go away after time. 

 

You're on an emotional rollercoaster ride with the hormonal state that you're body is in and the anticipatory/anxiety feelings that all this is bringing on.  Throwing hair straighteners is totally acceptable and understandable.  When we're in the clutches of the hormones and we don't feel any control over our emotional selves life just feels rotten.  One of the things that I do to kind of help maintain a steady, calm presence is to remind myself that the crazy, tearfilled emotions that I'm feeling are 'not me' - just my body  wildly fluctuating.  It helped to be able to stand back and just observe instead of getting caught up and lost in it.  It's called 'mindfullness training' in Western medical circles and is derived from Buddhist meditation practices.  They also use it to help people with pain and depression so it could also be useful for the migraines until you get your prescription filled.  Just google it if you want to know more.

No, sweetheart, you sound like a woman that is dealing with a helluva lot and trying to get through it.  Whiny bitches moan about small things like breaking a nail, having streaks from their foam on suntan and not plucking their eye brows in time.  You are most assuredly not a whiny bitch.  Let that thought be banished from your head - you already have a lot going on in there.

 

Crying is a good thing to do.  It releases a lot.  I spent a year crying in the most inopportune situations and times.  One time I was at a farmer's market, getting my free run eggs.  I was late in coming and they had no more eggs.  I just started bawling and I mean bawling.  An old man stopped and thought something horrible had happened to me and I looked at him with tears running down my face and said, No, I can't have any eggs and just started bawling again.  He gave me a strange look and hurriedly went on his way.  Jeesh.  Things like that happened all the time.  People thought I was a crackpot.  I was never a 'crier' before but I sure made up for it in that year. 

 

 

What is the cause of the pain you are experiencing, kristenloeh?

Butterflychaser, that was one hell of a good post.  I especially like how you described the rampant usage of drugs and the whole movement in the medical field to attribute symptoms to a mental disorder which is, of course, backed up by the pharmaceutical companies. 

Try, 'migraine associated vertigo'.

The research out there suggests that certain foods trigger it like msg (which is can be hidden under different names), caffeine, cheeses, nitrates, sulfites and so on.

Yes, the key would be to identify one or two things that you like to do for exercise and then start off slow with them and set goals.  At my worst, I was also confined to my bed with ataxia and fatigue.  I went from doing yoga every morning and bike riding 16 km a day (I was a commuter cyclist, in both summer and winter) to barely forcing myself to roll out of bed to use the bathroom.  Life looked bleak and I felt pretty hopeless.

As tired as I was and as wobbly as I could walk, I realized that I needed to force myself to do something after awhile.  I started with  walking down my back lane (and I'm sure neighbours thought I was drunk as I staggered along) and doing some yoga.  After a week I promised myself I would walk around the block for awhile and that graduated to walking a half mile and then a mile and so on until I was able to walk up to four miles a day.

Of course, the exercise is in conjunction with eating correctly at the same time.  I didn't have a lot of brain power to figure a really complicated eating plan out at first so I went on the paleo diet which is basically lean meats and fish, lots of fresh vegetables and some fruit. No grains or rice whatsoever. However, I also ate potatoes and beans which is not part of the paleo diet. I stayed away from anything that was in a package, jar or can.  Within weeks I was feeling better.  The key is the vegetables and some fruit and eating it raw.   I felt so good eating this way that I started to play around with gluten free grains but I seem to be extremely sensitive to cross contamination so I think I'm going to have to stop eating these as well.

If you don't like meat you can get amounts of protein from beans and legumes. They are an incomplete source of protein meaning they don't have all the amino acids like meat does.  You have to combine them with another protein source like rice, nuts and seeds.  If you can eat it, quinoa has a complete source of protein, one of the few vegetable sources that do.  Lentils, dried peas, kidney beans, pinto beans, navy beans and chick peas have the highest amounts of protein.  Pumpkin seeds also have high amounts.  Chick peas also help with weight loss because of their high fibre content and high satiety levels (you feel full for longer resulting in eating less).

Originally I thought it was the soy in the tuna that was making me nauseous.  So I bought the cans with just tuna and water.  No soy.  But after 3 tries, 2 weeks apart for each try, I still get nauseous and fatigued.  I use Kraft Best Foods mayo in it, my own bottle, so it's not contaminated.

So frustrating.  I have always loved tuna.  Up until the mono triggered this nightmare with gluten, I ate tuna all the time with no problems.

Is it possible I have developed an intolerance to tuna?

Is the mayonnaise made with soy oil?

Apple slices with peanut butter on top deliver the crunch and a bit of the saltiness of chips.

I keep a bag of broccoli in my fridge for quick snacks.  Also raw pumpkin seeds, carrots, celery sticks, blueberries and strawberries.

I agree with Takala.  The more you eat the whole foods, the more your body wants less of the processed stuff.  At first, you have to be really mindful about what you are reaching for but as you get more into the habit, it will be easier.  Plus, your body starts to crave the whole foods.

Oh yes, red bell peppers are awesome for just snacking on.

Hope it goes well and if you need more encouragement, keep us posted!

Yes, Alice, listen to Skylark.  

Also, really think about this:  

If Gluten relief enzymes actually worked, don't you think that they would be mass marketed to all the celiacs out there just dying to conveniently eat bread, buns, cookies, cereals, trips to MacDonalds and so on?  

Don't you think that if these things actually worked, the manufacturer would be trying to make millions off them by marketing them via doctors, health care centers and so on?


You have been had twice, Alice:
1. Through your money.
2. Through your trust.

There's good, decent people on here who have been around the celiac block many times over and can offer good, sound support.  It would really benefit you if you gave them some credence.

I wish I had run into someone like you when I was so sick for so long. I even remember hobbling through the grocery store late at night because I drove like I was drunk so I had to go to a 24 hr. store late at night to keep from being in traffic. Anyway, as I was hobbling through the grocery store I glanced at the gluten free food and saw the price and said a small thank you to God that at least I didn't have THAT problem. OMG!!! I did too have that problem. I didn't even know what THAT problem was. I didn't even associate gluten with Celiac. I was so ignorant of this disease. I wish for the day when clerks say "hey...you look like you might have Celiac..." It would have saved my life..or at least 7 eyars of it. Tell your neighbor....she may well appreciate the information. Or at least mention what is working for you and let her figure it out.

I had started avoiding all preservatives and salicylates thinking that must be it. A co-worker said to me one day, how is it going avoiding gluten? I said Gluten? I don't avoid gluten....it's about the ONLY thing I'm not allergic to! That day I went home and googled gluten...and found Celiac.com...and the answer to 7 long years of being sick, sick, sick. Took my symptoms and the word Celiac Disease to my Dr. and asked if this may be what I have. He said, "yup. I bet that is what you have...." After giving me Lyrica for fibromyalgia, pain pills for migraines, Promethazine for nausea, and telling me to take Immodium AD every day for diarrhea. Oh yeah, and Zoloft and Xanax for depression.... Yup, I bet Celiac is what I have doc...thanks for everything.


If one in a hundred have the disease and 90% of them don't know it and Dr.'s aren't diagnosing it, then word of mouth is the only way. I tell my friends to tell their friends and their kids and their kids friends and their kids friends parents. And if I hear of anyone with "Fibromyalgia"...I write a note about Celiac.com and have their friend give it to them. I tell people in the grocery store. One guy was shopping for his wife and said she had been sick a long time...I asked what she had....headaches, muscle weakness....etc. He said he tried to understand but she never gets any better. I said try Celiac.com...dug in my purse and jotted it down for him. I often wonder if that was her problem. Anyway, there are exactly 11 gluten free people in the world because I see Celiac everywhere and I talk about it when I can without being overbearing.....and they diagnosed themselves because their Dr. couldn't or wouldn't.

So I say Rock On!!
And Talk On!!!
Celiac.
It IS Everywhere!!

I would have to agree with you, eatme4good.  My neice was diagnosed with celiac some years ago.  My brother and his wife are standoffish and didnt disclose much or really connect with the rest of the family about it.  My mother displayed all of the neurological affects of celiac and spent years in bed with vertigo, depression, fogginess and overwhelming fatigue.  Her last ten years were spent like that coupled with the sad descent into thinking it was all in 'her head'.  One of my other brothers has the full gluten ataxia thing going on and it's progressed to where he's in about the same place as where my mother was.  

When I stumbled upon how gluten affects the cerebellum I let my brother know and hes in the process of bringing it to his doctors attention.  

I think its good to bring it to peoples attention.  Even if they shrug their shoulders and roll their eyes, maybe somewhere, sometime down the line when they have symptoms that motivate them to seek help, they'll remember what you told them and have an easier time of finding an answer.  My brother (father of my neice) was very irresponsible and dare I say it?  Selfish.  He could have alleviated alot of suffering if he had just spoken up.

I've always had cold feet and hands but in the last few years it has gotten worse to where I am much like you:  dressing up to go to bed.  In the day, my bare skin feels like an ice pack is placed against it.  

Regarding the pain up the left arm, I get something similiar where it feels numb/dead like.  Also My hands falls asleep when I'm holding a book or the phone.

I'm one week into begin gluten free after going for the blood test.  At this point I don't notice much difference except the deadness in my left arm has gone.

Hope this helps.