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Kamma

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Kamma last won the day on July 30 2013

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About Kamma

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  1. I'm wondering if there is an issue with lower levels of cross contamination of the nut flours you are using.  They could be certified at 20 ppm but perhaps they contain lower levels of gluten.

     

    When you remarked that you had been recently tested for ttg iga (?) levels, it showed you were fine.  Did that mean your numbers are decreasing and you are now in the 'normal range'?


  2.  

     

    Hi, Kamma,

    I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:

     

    ASSESSMENT AND PLAN

    My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

    temporal lesion. I cannot differentiate at this point a brain tumor, primary

    or metastatic, versus cavernous malformation that is less likely.

    The tumor seems to have a dural-based component, but it is very worrisome the T2

    abnormalities surrounding the mass. The plan is to repeat an MRI of the head

    with gadolinium with T1 stealth sequence and also GRE. We will make further

    recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

    understood and agreed to proceed with the plan. I am also providing her a

    prescription for levetiracetam generic per her request. Her insurance

    company does not cover Keppra. Once again, I appreciate the opportunity to

    participate in the care of the patient very much.

     

    His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  

     

    You're welcome, Gladgirl. 

     

    When do you go in for your next MRI?

     

    I also have a brain tumour in the pituitary/optic chiasm called a craniopharyngioma.  Slow growing.  At this point they don't want to operate as the symptoms are far more preferable to the excision.  

     

    Kamma


  3. Hi Christiana

     

    Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

     

    I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

     

    Kamma


  4. Hello,

    Sorry for the long post.

    I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

    We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

    Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

    ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

    I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

    I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

    Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

    Thanks and happy new year

     

    Jonvon,

     

    Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia.  https://sites.google.com/site/jccglutenfree/

     

    After being diagnosed with gluten ataxia a few years ago, my vertigo took months to resolve on a strict gluten free diet (i.e. I don't eat any 'gluten free' products at all and stick to eating vegetables, legumes, fruit and some fish).  The brain fog slowly disappeared as well.  After about a year I felt 'normal' for the most part but still have seizures and/or vertigo if I inadvertently get glutened.

     

    It's not a quick fix (sorry!) and Dr. Hadjivassilliou recommends to be very strict in what you eat as it appears by the research that gluten ataxia/neuro people are extremely sensitive to the lower amounts of gluten that can be found in 'gluten free' products.

     

    Please note that if you do have gluten ataxia and got a celiac test done, it will most likely be negative as gluten ataxia actually involves a different enzyme than what the traditional celiac panel tests for.  The celiac panels only test for ttg 3 and ttg 2. (ttg is Tissue Transglutimanase enzyme) Gluten ataxia is caused by an antibody reaction to ttg 6.  There are tests being developed by Dr. Hadjivassilliou but they are not on the market yet.

     

    The best indicator at this point if you have gluten ataxia is to go gluten free and if the symptoms resolve chances are you have it.

     

    Take care,

    Kamma

    PS - Prior to getting my diagnose, I went through three years of increasing dizziness/vertigo, stumbling, falling/walking like a drunk and seizures. The neurologist kept sending me to all these other experts for testing which included the ENT/Vesitibular Testing which came back normal.  


  5. That's the beauty of reading of others shared experiences:  you are encouraged that there is a light at the end of the tunnel or it gives you ideas to try. I'm a little shy of saying to people, you have this or that as it could be totally off base but it helps to figure out a possible path to pursue medically.  Check out the symptoms for meneire's disease as well as tinnitus (ear ringing) is a predominant symptom in that while it occurs sporadically in MAV.  If you're able to afford it or have coverage, get a hearing test done.  You can also get vestibular testing done which is pretty straightforward.

     

    Interestingly enough, there was a study on people with Meneire's in which they were put on a gluten free diet and 30% of those in the study had a reduction in their symptoms.  

     

    Grain free for me means all the grains (gluten containing ones of course but also others such as Teff, Sorghum, Corn, Soy and so on.  Technically they do not contain the gluten protein but are often contaminated in the production process with gluten grains.  There was a recent analysis by the Gluten Free Watchdog on both certified gluten free non-gluten flours and uncertified non-gluten flours.  You can find it here:  https://www.glutenfreewatchdog.org/blog.php?id=6

     

    Rice is considered a pseudo cereal along with quinoa, amaranth and buckwheat (there are a few other pseudo cereals in that group but I can't think of them at the top of my head.  I eat rice occasionally and it's always from a brand that assured me that they don't use wheat in the rice-wheat rotation planting.  Other people use nut flours like coconut, almond flour and so on but I'm in the place where I"m just happy to eat my veggies, fruit and fish and don't need or want the complex carbohydrates from substitute non-gluten flours.

     

    Hope this helps!


  6. Here's a list of the food triggers.  Some affect people while others don't.  You have to do an elimination rotation and introduce them back one at a time to see if they are a trigger for you.
     
    Cheeses that are aged or ripened (such as Blue cheeses, Cheddar, Gouda, Brie, 
     Parmesan, Romano, Gruyere) 
    Alcohol, especially red wine or beer 
    Chocolate, cocoa, or carob 
    Milk products – sour cream, yogurt, cheesecake, buttermilk 
    Asian foods such as miso, tempeh, and foods prepared with soy sauce or 
    Monosodium Glutamate (MSG) 
    Smoked, processed or cured meats (such as hot dogs, bacon, sausage, bologna, 
    salami, ham) 
    Pickled foods (such as pickles, sauerkraut, herring, olives) 
    Nuts and peanut butter 
    Baked items with yeast (yeast doughnuts, raised cakes and hot breads) 
    Certain fruits (citrus fruits, bananas, pineapple, avocados, figs) 
    Caffeine from coffee, tea or cola drinks

  7. I was diagnosed with a couple of labels and went through a year of testing with different specialists before they decided on MAV.  I don't have migraines so when they came up with that, I was like, waaaahhhht??? But they explained to me that you can have migraines without feeling them which seems ass backward to me.  I also have tulio's syndrome which is noise induced vertigo.   

     

    The process to healing started for me in going absolutely grain free as I was diagnosed with gluten ataxia and was reacting to minute amounts of gluten.  As my balance and gait started to steady and the seizures started lessening, I tackled the other food triggers to see if it helped with the vertigo and it did.  I'm very strict on it and don't cheat.  I notice that other people on the MAV boards are not as strict and don't have as much of a success.  Adhering to the diet and lifestyle changes is so important and I was so desperate to get better that it gave me great motivation.  

     

    Being in motion is actually a lot better than being still with MAV so driving and feeling okay makes sense.

     

    My attacks would last for weeks.  It was maddening.  I don't have the spaced out aura but other people on the MAV forum do.  

     

    Do you sometimes have pain in the ear and/or ringing with the attacks?


  8. Migraine Associated Vertigo.

     

    I was diagnosed with it around the same time I was diagnosed with gluten ataxia.  The rocking is horrible isn't it?

     

    There's a whole forum dedicated to it at the name mentioned above and you can access some good reading and research there.  Basically, there's two ways of treating it and neither are 100%.  Some choose the medication method, others choose avoiding the designated food triggers (caffeine, salt, yeast, msg, citrus fruits, nitrates, etc.) and others choose a combination of both.

     

    For myself, I eschewed the medication part of it and solely avoid the food triggers.

     

    The feeling behind it (and there's not much there as it's a relatively new diagnose) is that your brain has been overloaded and can't react to certain triggers any longer. This is the best hypothesis that they are able to come up with.

     

    It shares some of the same symptoms as Meneire's Disease and can often be confused with it.  However, Meneire's Disease has the additional symptom of hearing loss of which is missing in MAV.


  9. Morning, coil.

     

    Have you ever had what is called vestibular testing?  This usually involves an ENT (Ear, Nose and Throat) specialist and one of the tests is to pour water in your ear and measurement of your eye movements (nystagmus) in response to it.  If the testing was abnormal, then it would show the problem to be your vestibular system in your ears.  If these tests were normal, then the next step would be to look for neurological causes originating in the brain.  

     

    Some of the underlying conditions for a neurological cause are:

     

    Multiple Sclerosis

    Gluten Ataxia

    Brain Tumour

    Migraine Associated Vertigo

    Meneire's Disease

    Vitamin Deficiency

    Superior Canal Dehisence

     

    There is much overlap between Meneire's Disease and Migraine Associated Vertigo.  Vertigo plays heavily in both of them but Meneire's Disease also has tinnitus and some hearing loss.

     

    The experience that you described as having is similar to what I went through for about three years.  Horrible, isn't it?  I really empathise with you.  In my particular case, I was diagnosed gluten ataxia and migraine associated vertigo.  I had extreme problems with vertigo, balance, walking properly and seizures.  Migraine associated vertigo  does not mean you feel migraine headaches but that it manifests as vertigo.  Gtuten Ataxia is where the reaction to gluten proteins takes place in the cerebellum (balance centre of the brain) and your body starts attacking the Pukinje Cells that make up the cerebellum.  I've been on a grain free/gluten free/processed food free diet regime for a year and a half and I am now back to normal.

     

    I would strongly urge you to try and get tested for the above conditions if you have not already done so.  If there are obstacles in obtaining testing here are some websites that would help in determining the direction you think you should go.  

     

    Meneire's Disease Forum

    http://www.menieres.org/

     

    Migraine Associated Forum

    http://www.mvertigo.org/forum/

     

    Dr. Timothy Haines (North American Renowned Neurologist who works with balance disorders)

    http://dizzy-doctor.com/dhd.php

     

    The Gluten File (a depository of research articles on gluten ataxia, gluten sensitivity, neurological manifestations of gluten reaction, etcetera)

    https://sites.google.com/site/jccglutenfree/theneurologicalmanifestationsofgluten

     

    and of course, here at celiac.com

     

    Hope this helps in some way.  Please do remember, that with proper treatment, the vertigo will go away.  You won't be stuck like this forever!  It might take some diligence on your part at the beginning to start digging and figuring out the causes and what you can do to manage it, but you have already started that process by asking here.  :)  Vertigo is not a forever thing and it pays to keep that in mind when you're having a really crappy day and can hardly walk without holding on to walls and you feel your life crashing in on you.  

     

    You'll get better.  Keep holding onto that.  :)

     

    Kind regards,

    Kamma


  10. Morning, Designer Stubble...

     

    Tissue Transglutaminase (ttg) is actually an enzyme contained in your body that cross links with the gluten proteins in wheat, rye and barley stimulating the immune system to respond with B Cells (White Blood Cells) to produce the Anti transglutaminase antibodies IgA and IgG to go on the attack.

     

    I'm reading your results as the normal range is 1 - 10 and the equivocal range (antibodies are present but not enough to confirm celiac disease causing an inconclusive test result) is 7 - 10.  Anything above 10 would be confirmation of celiac disease or not responding to the diet.

     

    Kind regards,

    Kamma


  11. Kamma.....people can choose to believe whatever they want from reading the vast array of responses presented on this forum. I choose to stick to information that is not founded on information that cannot be proven. If you do not have a lab set up in your home that can detect down to 1 ppm, then you cannot prove there is low level gluten in the suspect food. And if you read some of the other posts on other forums that some people here frequent, I can only say there is a lot of room for doubt. Most of what is posted is not based on any kind of reliable science.

     

    I understand what you are attempting to achieve, Gemini. I am a huge proponent on providing scientifically validated research and allowing people to make informed decisions based on that. The other side of this is the vast amount of personal experience that people bring to the table as well. It can provide ideas, tips or just plain old comfort. My point with dilettantesteph's postings is that she has provided a glimpse into her personal experiences and what she has done to determine what is causing her symptoms. .

    At this point, beyond Fasano's recent study, there are few other research studies dedicated to people who do not heal on a 'gluten free' diet. That there are those who do not respond except to a gluten elimination diet has been scientifically proven and can no longer be refuted. In the absence of this, personal experiences like dilettantesteph's can provide a starting point for those who are not healing. She's always been a balanced, intelligent voice, gives details, provides research and also assures that her experience is probably not shared by the vast majority of celiacs. This type of approach is deserving of respect.

    I have never accused anyone of being an "off the cuff" poster. But when I see someone post information saying they had a gluten reaction to vegetables, it is imperative to make sure the newly diagnosed do not get the wrong idea and think that plain vegetables have gluten in them and need to be questioned as to their safety. The "coating on vegetables" is a prime example. I have yet to see any reputable Celiac organization warn people about this and they would be a good source of truthful and reliable information.....for the most part. Nothing in life is 100% but I think that the major Celiac researchers and organizations that are here to help would have the most timely information. And we all know that just because someone states they had a reaction, does not mean it's a gluten reaction. There are so many other reasons why people do not heal well or heal slowly or have problems with many other foods, as I am sure you already know.

    In regards to edible coatings on vegetables and fruit, Canada has now implemented a guideline in which prepackaged fruits and vegetables must declare what kind of allergen might be present in their edible food coatings. This does not apply to unpackaged fruits and vegetables and consumers rely on the volunteering declaration of producers. In the US, I believe they must follow the GRAS guidelines. Prior to this, wheat based edible food coverings (and this is one of many types of edible food coverings) could very well be consumed unknowingly and could cause problems for those who are ultra sensitive. As you know, there are many degrees of sensitivity which all the research papers are adamant about. One size might fit the majority but not the all.

     

    I would have to offer a different viewpoint on official celiac organizations having timely information and posting that for consumers. Take in case gluten ataxia. Some celiacs have this and some people who don't react intestinally at all experience this. There is not one mention of this on the Canadian Association of Celiac and the Celiac Disease Foundation. There is a vague heading of "neurological symptoms" with no details. Further, the most recent research reports posted on their websites were research papers from 2009 (Celiac - CCA), 2011 (Gluten Sensitivity - CCA) and 2011(CDF). The CDF has a separate label for Research News in which some new research is  posted. The CSA fares much better in this in providing a link to search all (not just pertaining to celiac) recent research by date. In addition, none of these sites has any information regarding Fasano's recent study on celiacs who do not heal on a traditional gluten free diet. I tried searching for it on the link provided but gave up after weeding through hundreds of research papers. I can imagine what newcomers to the world would feel like trying to find information for themselves by systematically going through each one. Overwhelming to say the least.

    Gluten Ataxia has been consistently researched from 1996 while Fasano's study was released earlier this year but neither are mentioned on 2 of these sites. This is a little slow in releasing information to the consumer and it has been left up to reader's like diletanttesteph to bring that research here and educate people. I'd also like to point out that the existence of gluten ataxia was more than likely around before research started to look into it to determine it's causes. Just like super sensitivity is around and to date, we have just a few research papers on it.

    The initial responding of scientists in listening to patients who said they were experiencing either these conditions validated those experiences. It's only by taking heed and saying, 'there might be something here worth investigating" that the scientific proof can be developed. These scientists did not say, "you cannot be experiencing this because you have no proof". An open and objective mind is the hallmark and basis for scientific research and it develops theories, tests them and either validates or discards them. This is a valuable skill and it cannot hurt to practice it.

    I will state again that the 20 ppm limit does not mean there is 20 ppm's of gluten in a particular product. It could very well be zero. I would tend to believe that it is low because I am also very, very sensitive and would most likely still be sick if I routinely ate foods that were giving me a small constant gluten hit. Ditto for most Celiacs. The vast majority heal well and go on to live normal lives, without questioning whether their broccoli is safe. It's not too hard to figure out once you learn the diet and I don't think we need the expense of labeling laws that want to test down to 3 ppm....because that's going to drive the cost of food up even higher. If you are that concerned, eat whole foods and nothing else. If you question a company and find out what their manufacturing process is like, which I have done many times in the past, you'll know what food is safe to eat and what isn't. This isn't rocket science. BTW....most all of the companies I buy products from test down to either 5 or 10 ppm.....not 20. People throw that 20 ppm number aorund a lot, with regards to the US, and make it seem like our gluten-free food is contaminated and will make you sick. On the contrary.....it is growing by leaps and bounds, which is good. Most of the companies out there are very responsible and want to provide safe food for us to eat and I think they do a pretty good job. Celiac's are not going to buy food that makes them ill and companies will not last if they don't get it right.

    In your statement above you are asking to accept on faith your personal experience that you are very sensitive and would most likely get sick. I have no problem with this. Just as I have no problem with accepting on faith dilettantesteph's that she does get sick on lower levels of gluten. Neither of you can provide any proof except your personal experience. The vast amount of research out there always provides the addendum that there are varying degrees of sensitivity.

    I read an interesting study done at the University of King Fahd, Saudi Arabia in which they measured dietary compliance to the gluten free diet. They found that there was a marked decreased in compliance the less a person was educated citing lack of knowledge and skills in obtaining that knowledge. These findings are not just exclusive to celiac as health indicators are always lower for uneducated and/or poor people. I imagine you to be an intelligent woman, Gemini and have great skill in obtaining the information you require. However, there are those who are not in your position and would not or could not go about getting the information that would help them to be healthy or be informed. For them it would be hard and quite difficult and the consequence of it would be repeated glutenings. Lowering the acceptable gluten level to "no detectable gluten" would greatly improve consumer confidence, eliminate confusion (which we see here all the time) and help eliminate the trace glutens that people are getting because they don't know how to do that for themselves.

    I cannot speak to whether it would increase the price of gluten free food or not. I know the food lobbyist group in Australia does say that it would decrease their costs if they raise the gluten levels but countering that is the statement of the Director of Freedom Foods (Former Director of Kellogg's Australia) which produces gluten free products and is protesting this proposed changed who says that it wouldn't make one bit of difference. To date, I cannot find any research that studies the cost effectiveness of gluten levels in gluten free food.

    I do agree that first hand knowledge is invaluable, as we see here all the time. However, if it goes against everything we know about Celiac or people are making claims that cannot be proven or backed up by valid information, expect to get feedback. It creates a lot of fear of food, which does not do anyone new to this any good. There are many reasons for reactions and people should be aware of that.

    The research on celiac is evolving. A few short years ago it was believed it was a child hood disease and you would grow out of it or that 100 ppm million was a safe gluten level to consume to name a few things. We don't know everything about celiac and should hold an objective mind to experiences that cannnot be proven or backed up by valid information. After all, this is what Hadjivassilliou and Fasano did and they started to develop the research for gluten ataxia and super sensitives. By it's very nature, a forum is not the place where we can prove personal experiences. I understand that you want to eliminate fear mongering but there are some posters whose experience lies outside of the mainstream celiacs and until further studies can be completed all we can do is listen, question, support and provide constructive insight in a way where everyone can feel valued and not feel scared to come on here or feel misunderstood.

    None of us are experts except in our own personal experiences.

    Thank you for replying.


  12. The laws in Australia require that for a product to be labelled gluten free, it must contain no detectable gluten and the current standards test down to 3 ppm not 8 ppm.  Products that test above that and up to 20 ppm can be labelled 'low gluten'.

     

    Gemini, I find dilettantesteph's posts to be very informing and she provides her experience which can be valuable for some celiacs who are still reacting to lower, trace amounts of gluten.  Her reactions to gluten at lower levels are proof enough that she is reacting and she has always been diligent in testing out her reactions against the suspect food, ruling out different causes and sharing that here.  She is not an off the cuff poster and has always provided much detail in her experiences and what she has done to make herself better.  

     

    Please do remember that the 20 ppm is a recommendation/suggestion from the studies and is always said in conjunction with "safe for the majority/most celiacs".  Dilettantesteph's posts reflect the experience of a celiac that is outside of the majority of celiacs but is esteemed in providing information for those that still have problems with the 20 ppm gluten levels.  There is very little research on these sensitive celiacs (but are confirmed by Fasano's recent study) so first hand knowledge shared here by posters such as herself is valuable to those still finding their way.


  13. Sounds like you really suffered a lot that summer, Fire Fairy.  Sorry to hear that.  I agree with Steph - be very careful with CC so you don't get inadvertently glutened. Your safety is at stake as Steph's friend's experience demonstrates.

     

    If you haven't had one since going gluten free, I would say that there is a chance of a link between the two.  

     

    _____________

     

    Nikki, you just gotta love dogs.  :) They give so much back to humans.  


  14. Thank you Kamma. I had an MRI in 2008 and there was no calcification on my brain then.   

     

    Thank Heavens for that.  I know I was quite relieved to find out that the seizures were not caused by epilepsy.  

     

    Researcher's don't quite know why gluten can cause non-epileptic seizures but it's documented throughout out the research on the neurological presentations of gluten intolerance/sensitivity.  


  15. Here's an article from a newspaper in Sydney.  The push to change the labelling comes from inside the industry.

     

    Excerpt:

    Australian food manufacturers and suppliers are pushing to increase the amount of gluten allowed in so-called ''gluten-free'' foods on which thousands of people with digestive problems rely.

    The Australian Food and Grocery Council is preparing to ask Food Standards Australia New Zealand to relax its current standard, which states there must be no detectable gluten in foods labelled ''gluten-free''.

    The lobby group instead wants such foods to be able to contain up to 20 milligrams of gluten per kilogram, which would bring Australia in line with British and European standards.

    A confidential survey by AFGC of 98 businesses that either manufacture ''gluten-free'' foods or supply them found nearly 80 per cent think the new standard would cut down manufacturing plant costs, including gluten testing costs, and make it easier to source products from overseas.

    http://www.smh.com.au/national/industry-push-to-allow-gluten-in-glutenfree-foods-20130525-2n3z5.html

     

     

    So it's fuelled by a cost cutting measure.within the industry.


  16. I like Australia's labelling requirements and cannot understand their reasoning why they would want to bring them in line with Europe and North America.  In my opinion, the goal is to protect and inform people with gluten intolerance, not to create standardization internationally.  Especially when there are many that still react to less than 20 ppm and are initially confused by 'gluten free' labelling as to mean 'no gluten present'.  

     

    Australia also has a caveat in their labelling that manufacturers can claim their product is 'low gluten' if it falls under 20 ppm.  

     

    An interesting note is that in Europe historically, it was believed that 200 ppm gluten levels were considered safe for celiacs (1981 standards) and thus food containing <200 ppm was labelled gluten free.  It was only decreased in 2009 to <20 ppm.  This was also in conjunction with the industry using a variety of  detectability tests that had different sensitivities of detecting gluten.  For example, one commercial method that was approved by the American Association of Official Analytical Chemists could only detect gluten levels above 160 ppm.  As different tests were developed that had a higher degree of sensitivity in detecting gluten, the acceptable 'gluten free' level was dropped to 20 ppm. based on serological testing that this level was safe for most celiacs.  (However, Fassano's recent study of some celiacs not healing at all on a diet of <20 ppm is throwing a bit of a curve on the <20 ppm being safe for all celiacs).

     

    At this point, if they have the ability to detect gluten levels down to under 3 ppm (they do and it's what Australia bases their 'gluten free' labelling on) they should label the products as such.  I wish more countries would standardize to Australia, not the other way around.

     

     

    Ref:  http://link.springer.com/article/10.1007/s00216-009-2943-1#page-1

    Ref: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.02768.x/full

    Ref  http://celiacdisease.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-symptoms.htm


  17. Thank you so much for your responses and the information you shared. I appreciate it!

     

    You're welcome.  :)  When you first start out examining everything it can seem daunting at first.  But as time goes by, and the more knowledgeable you become and tuned into your body's response to different foods (if you are going to pursue the food sensitivity angle) things will start 'clicking' for you.  Your body is your best guide.  

     

    Keep me posted on how your progress comes along.  If you want to read more about gluten ataxia, the leading researcher in the field right now is Dr. Marios Hadjivassilliou.  You can google his name and it should pull up some of his research.

     

    Kind regards.

    Kamma


  18. Hello Allie,

     

    The twitching in your muscles and tingling and tingling in your hands and feet is called "peripheral neuropathy" and is common in gluten ataxia.  Some studies that you can read on this are: 

     

    Autonomic neuropathy and coeliac disease

    http://www.ncbi.nlm.nih.gov/pubmed/15774451?dopt=AbstractPlus

     

    Sensory ganglionopathy due to gluten sensitivity.

    http://www.ncbi.nlm.nih.gov/pubmed/20837968

     

    Your muscle aches and joint pains sound like fibromyalgia and while there has been no exclusive link between celiac and fibromyalgia, many FM patients experience some relief from their symptoms on a gluten free diet. Jane Anderson, About. Com Celiac writes:

     

     "It's not uncommon to suffer from fibromyalgia or chronic fatigue syndrome (CFS) in addition to celiac disease or gluten sensitivity. And while some physicians still don't acknowledge the connection (and research hasn't proven it), people with fibro or CFS increasingly are going gluten-free in an effort to ease their symptoms.

    Does it work? In many cases, yes, while in others, no."

    http://celiacdisease.about.com/b/2012/05/30/do-you-have-fibromyalgia-or-chronic-fatigue-syndrome.htm

     

     

    Anxiety can also be a common extrainestinal symptom of gluten ataxia and celiac.  There's a recent study (2012) that examines the linkages here:

     

    Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

     

     

    As Irish Heart says, migraines are also quite common in celiac and gluten ataxia.

     

    At present the best measurement of diagnosis of gluten ataxia is a strict gluten free diet.  There is no current test for it (the current test is strictly for celiac: intestinal manifestations  and dermatology  manifestations .respectively.  There is evidence that symptoms caused by gluten ataxia take a longer time to resolve so if you go gluten free and don't see results within a few weeks, don't give up!  It could take up to a few months before you start noticing any changes.

     

    I hope this helps,

     

    Kind regards.


  19. Good morning, Kham

     

    Another thing to consider would be gluten ataxia of which you share some of the symptoms.  G.A. is caused by an immune response to gluten but it manifests itself neurologically (poor balance, vertigo, pins and needles (which is called neuropathy), slurring of speech, extreme fatigue, cognitive difficulties).  Some people who have gluten ataxia will show damaged villi on a biopsy examination but most do not.  Most also will experience stomach upset, constipation and diarrhea but will show no damage to their villi.

     

    The immune response in celiac is an antibody attacking the enzyme Tissue Transglutaminaise 2 (ttg2) in the intestine.  The immune response in gluten ataxia is an antibody  attacking the enzyme Tissue Transglutaminaise 6 (ttg6)  in the cerebellum in the brain.  Currently there is no test on the market for measuring the antibody response against ttg6 in the brain but it's being developed and will be ready over the next few years.

     

    If you have gluten ataxia, the current testing which is just for celiac (ttg2) (and which you were probably tested for) will not be able to capture it.  Currently, the only thing to do is go on a gluten free diet and see how you respond.  The neurological issues associated with gluten ataxia take a longer time to resolve than the intestinal issues on a gluten free diet.

     

    There is also evidence that gluten ataxia people are extremely sensitive to small amounts of trace gluten (which is present in processed gluten free foods which have been tested to have 20 ppm or below levels of gluten) so it's recommended that gluten ataxia people start and try and maintain a 'whole foods' diet.  This would consist of meat, nuts, vegetables, rice and fruit.  Some people have problems with dairy and others do not.

     

    Speaking personally, I shared the same symptoms as you and had them to the point where my balance had deteriorated to the point that walking was difficult and I spent many months just laying in my bed.  Vertigo was horrendous and I would also slur my speech. I was also experiencing seizures.   I would often joke that I had lost fifty I.Q.  points because I could no longer have a decent conversation - my head felt like it was stuffed with cotton wool and my brain processing had slowed right down.  I had alternating constipation and diarrhea with bloat.  

     

    I was diagnosed with gluten ataxia last year after inconclusive results to celiac testing (ttg 2) and my neurologist recommended going gluten free.  Within weeks the fatigue had lessened and my head felt clearer.  The balance issues and vertigo took longer to resolve but I began to see subtle improvements within months.  I had to go extremely clean in my diet and removed all processed food and now stick to the whole foods diet.  After a year and a half I'm almost back to normal.  If I inadvertently get gluten in my diet through cross contamination, I have seizures, my balance is thrown off and I'm running for the bathroom and it takes weeks for the symptoms to resolve.

     

    There is much research coming out on gluten ataxia.  If you are interested in examining this as a  possible cause of your symptoms, you can read more on it here: https://sites.google.com/site/jccglutenfree/

     

    Dr. Marios Hadjivassilliou is a neurologist based out of the UK who is at the fore front of the gluten ataxia research.

     

    Kind regards,

    Kamma


  20. Yes, MisterV, that is entirely possible.  For those who react extra-intestinal to gluten with ataxia and neuropathy responses, physiological responses have a longer rate of resolution with some symptoms lasting for up to a year before final resolution and after adopting the gluten free diet.

     

    There is less research on accidental or inadvertent gluten ingestion but in my case, I am looking at up to three weeks before seeing an improvement in the ataxia, slurring, tiredness.  It takes a while for the antibodies to leave your system and consequently for your body to quiet down. I also notice the severity in my reaction is increasing the longer I am gluten free and inadvertently get glutened.

     

    A word of note:  Hadjivassilliou's research in gluten ataxia points to the fact that the damage to the cerebellum could become permanent due to the loss of the Pukinje cells which are the target of the ttg6 antibodies if gluten is continually ingested.  He highly recommends avoiding all gluten (even processed gluten free products) as gluten ataxia / neurological persons appear to be more sensitive to lower levels of gluten that some other celiacs/NGCI can safely consume.

     

     

    "In order to work as a treatment for gluten ataxia, the gluten-free diet must be strict: You can'tcheat on the gluten-free diet at all, and you may need to eliminate "gluten-free" products that still contain tiny amounts of trace gluten, according to Dr. Hadjivassiliou.

    This may be a stricter diet than is necessary to eliminate intestinal damage, he notes. "It is imperative ... that close monitoring should be undertaken with the use of antigliadin antibodies [i.e., celiac blood tests] and dietetic review to ensure strict adherence to the diet," Dr. Hadjivassiliou and his co-authors concluded."

     

    Good on you for being able to talk yourself out of the anxiety.  Sometimes it's hard once we're in the midst of the anxiety to maintain some distance from it and consequently be able to manage it.  It always helps to remember that the anxiety is 'not you' and it's totally based on your body responding to the gluten.

     

    I hope this was of some aid to you.

     

    Kind regards.

     

     

    Referenced: 1  http://celiacdisease.about.com/od/GlutenAtaxia/a/Gluten-Ataxia-Treatment.htm

     

    2. http://www.etseq.urv.es/cdmedics/pdfs/Celiac%20disease%20from%20gut%20to%20brain.pdf

     

    3. http://celiacdisease.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=celiacdisease&cdn=health&tm=158&f=22&su=p284.13.342.ip_&tt=2&bt=4&bts=4&zu=http%3A//www.ncbi.nlm.nih.gov/pmc/articles/PMC1738682/pdf/v074p01221.pdf


  21. Would the sensitivity be to the avenin protein in the oat cover crop?

     

    It's my understanding that the avenin shares similarities with the gliadin proteins of wheat.

     

    Coeliac Australia advises that:

     

    "Gluten is the name given to the protein in wheat, rye, barley and oats that affect people with coeliac disease. It is a composite name representing

    • Gliadin in Wheat
    • Hordein in Barley
    • Secalin in Rye
    • Avenin in Oats

    The current tests for gluten can measure gliadin, hordein, and secalin but not avenin as it is a slightly different protein. Accordingly it is prohibited under the Food Standards Code to use oats in foods labelled or advertised as gluten free. When people discuss gluten free oats (and laboratories advise that oats are gluten free) what should be said is that they are free from wheat (and rye, barley) gliadin i.e. there is no measurable contamination.

     

    Avenin is an essential part of oats (as gliadin is with wheat). Oats will never be gluten (i.e. avenin) free [even if they are described as gluten (i.e. gliadin) free]. As mentioned in The Australian Coeliac magazine on several occasions, Dr Robert Anderson has found that approximately 1:5 people with coeliac disease react to pure uncontaminated oats i.e. they react to oat avenin.

     

    Since we cannot determine who is the 1:5 and we know that damage can occur in the absence of symptoms, Dr Anderson’s advice (and Coeliac Australia’s) is that oats should not be consumed without a biopsy prior to and during consumption."

     

    Referenced here:  http://www.coeliac.org.au/coeliac-disease/faq.html


  22. I hope I didn't give the impression that I was saying that it isn't possible to drink water in a bar.  I only had that problem one time.  They had the ice stored right under where they served up the draft beers.  I just meant that if you are sensitive you might want to check that out.

     

    Yeah, I could see that.  Pulling a draft beer there's always some spillage and it's totally conceivable that some could have spilled on the ice.  Thanks for the tip, dilettantesteph.