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Cognitive Challenges & Career
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Ok, so I'm at a cross-roads; mid-30's male, well-educated, but a host of cognitive and neurological issues that have proven to be exceptionally challenging and have made career success difficult.

Back-story: Approximately 6-months ago I was diagnosed with Celiac disease and am making the adjustment. I don't knowingly eat anything with gluten in it, but am still feeling pretty crappy overall. I was/am a Marsh 3, so had near/complete villous atrophy.

I was actually relieved to be diagnosed, 'cause I knew something just wasn't right and in the 6-months since the diagnosis am increasingly aware of the deep impact this disease has had on my body, mind and spirit. Specifically, I had/have bad daily anxiety, brain fog for years and imo, very poor long-term memory. I grew-up in an intellectual family, and so am reasonably articulate and have both a BA & MBA, which I think, to some, masked the truly destructive nature of the condition. I would often complain to family members / wife, that I have little to no long-term memory, and they would point to academic accomplishment or mid-level career success as grounds for foolish speak. What they don't fully know, is how difficult the journey has been and how hard I had to scrap & struggle every day just for career survival. I was overwhelmed by anxiety and perceived cognitive deficiencies (forgetting co-worker names, clients' names, work flow, software programs, etc)...you name it; now unemployed and scared, but need to re-enter the work force. It hasn't proven to be that easy.

So, what do I do? I asked a few medical specialists about memory tests, but they glibly say that I'm fine and shouldn't necessarily pursue anything further. I just think that I need to be a bit more direct and forceful. When I say I have limited long-term memory, I truly have limited long-term memory. I was able to function in school, because my short-term and working memory are intact. However, my memory operates like the accounting principle FIFO: first in, first out. Meaning, I am only able to adequately recall current information. I'm a voracious reader or should I say researcher, though, so often have enough to speak @ in current terms, but if I don't actively use the information, I can't recall it. And, it not only frustrates the hell out of me, but has also impacted me vocationally. I also know that anxiety can badly effect memory, but the perceived memory issues are so pervasive, that I'm wondering whether it isn't something more? I've read that Celiac can cause plaque and/or calcium build-up in the brain, block neuronal connections, etc.

Has anyone experienced anything similar? Any success stories?

Thanks in advance!

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Are you taking vitamin B complex and calcium/mineral supplements and eating properly ?

If it's only been 6 months it may take a while longer to heal up and be absorbing nutrients better.

You may also have to change your diet, more protein, more good fats, more vegetables, less carbohydrate. I found out that if I am going to have a day where I need to be able to think/write, I can't do the typical milk (or rather gluten-free milk substitute or yogurt) and cereal routine at all for breakfast. I experimented with different foods and adding in more grain carbs after initially being on a grainless diet for awhile when I first went gluten free, and the higher amounts of carbohydrates do not help my brain function at all. I have this really old but very funny T- shirt with a cartoon joke on it. It says "Eggs for breakfast" and it has these little marsupial looking creatures (mammals) running around a nest of dinosaur eggs, raiding it.

I have some interesting memory glitches that have been with me my entire life, so I just work around them. But that was layered on my basic brain, which just happened to be the model with a good visual memory, only I could tell that something was off. Now that I am older I tell myself this is what it must be to have the brain with the not so good memory. Of course I am 2 decades older than you, and the hormone thing is different, so this doesn't surprise me that now it's getting even more interesting. BUT my husband is not celiac nor gluten intolerant, eats well and exercises, and I can clearly see the same thing happening with him, so what is his excuse ? ;)

We as human beings in this culture are required to remember an extraordinary cache of JUNK, compared to people in the past. Really, just to accomplish anything, you may have to be willing to work 10 hour days, and wade thru incredible amounts of distractions, multiple appeals for you to stop what you are doing and deal with "some crisis," and deal with dozens of passwords. This tends to drive me nearly batty, so I write a lot more notes to myself. To heck with doing this on a piece of electronics, I must be the queen of the post it note. Think of what you did in school - learned to manage information, but ended up having to save only a fraction of it. Life is the same way.

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Hello and much sympathy to you. I'm afraid I can't offer much advice as I posted a similar message just yesterday. Few people have replied to either of us but I know there are people on here who have experienced cognitive symptoms. I'm a little afraid that no-one's said anything because they have nothing positive to report :( But if this is the case, perhaps people out there can at least advise on what tests might be useful or what coping strategies work for you?

I would at least make sure you are properly checked for thyroid issues and nutritional deficiencies. My B12 was pretty low; also, someone I know who had other health issues discovered that being prescribed B1 supplements really improved her mental agility. It may help to read around on this board about other food intolerances. I'm starting to suspect that brown rice makes me really tired the next day, for example, which doesn't help matters at all. Also, my anxiety has been much better since going gluten free in January, but I suspect that also giving up soy has helped with that.

You should also give yourself plenty of credit for all you've achieved. I don't mean to offer even more platitudes, but you're obviously tenacious and hard-working. If you're anxious about goign back to work, could you try volunteering for a while? There must be non-profit organisations who jump at the chance to benefits from your MBA and experience.

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It can take a long time for the brain to recover. Don't lose hope as you may find that in a year or two you realize you have come much farther than you thought you could. Do keep being strict with the diet and the suggestion to supplement the B vitamins is a good one. Often the progress that is made is such a gradual process that you may not realize that healing is taking place. If you are still having GI issues do make sure that your not getting cross contaminated somewhere or that you don't have another intolerance like dairy or soy slowing down the healing. It is not uncommon for us to have issues with those so you may want to eliminate or restrict them for a while and see if things get better. Also for some of us even gluten grain derived distilled alcohol is an issue so if you do consume you may want to switch to something else for a bit and see if that helps. Be patient, you didn't get as sick as you were overnight and healing also takes a bit of time also.

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I attended the annual conference of the Gluten Intolerance Group of North America that was held in Minneapolis last June. At that conference, a number of doctors and neurologists specifically addressed the neurological problems that are now associated with celiac disease....and there are many, unfortunately. Yes, it can cause memory problems, learning disabilities, ADHD, depression, anxiety, and even schizophrenia. After one neurologist spoke about how a typical child with celiac might have challenges in school, everyone at our table began discussing the heartaches from our own childhoods. We ALL had experienced learning challenges that we had tried to hide during both our childhood and adulthood, such as having impaired auditory memory, poor reading comprehension, and perception problems. Our experiences were almost identical, and we were teary-eyed after we'd shared them. Apparently, we had never shared this information with anyone because we felt embarrassed and different--and, quite frankly, until we had heard that presentation, we were all unaware that celiac was probably at the root of our learning and memory problems.

Now, do we get better? This is hard to answer. Studies have shown that most people with celiac do not go on to college because of their neurological disabilities. I didn't go to college straight out of high school because of my inability to remember things long term (like you), and I also felt that it was FIFO. I loved to learn foreign languages, but as I learned each new language, I would forget all the others that I'd learned previously. When I studied in Brazil for eight months, I had to cope with relearning English upon my return! Yes, I even forgot my own native language! I continued to take college classes from time to time, but it wasn't until I was diagnosed with celiac and had been on the diet for two years that I decided to return to college for my BA degree. I continued to work full time and managed to earn straight A's (though, I'd always been a top student, like you, I felt privately ashamed that I couldn't remember anything for long). I did feel as though my memory was better after being on a gluten-free diet for a while. It took me 18 months on a gluten-free diet before I felt completely better. Give it time. That said, two weeks before I earned my BA, I was diagnosed with breast cancer--probably because of low oxygenation of my cells due to long-term iron anemia caused by celiac. After the chemo and surgeries, I am sad to admit that I can hardly remember anything from all the college classes I took to earn my degree. When I get together with my former classmates and they discuss books we'd read, I can barely remember anything about them. I don't know if this is because of the celiac or the chemo, but I can fully understand and respect how you feel when it comes to vanishing memory. It can be harmful to our careers because of the constant need to learn new technologies and complete ongoing research. Hopefully, after you've followed the gluten-free diet for a bit longer, your memory and other perceived neurological problems will resolve themselves. I DO believe that mine improved after following the diet.

That said, I agree with others that you should take a B-vitamin complex--and the best type is the kind that you can dissolve under your tongue. Trader Joe's sells this type. Also, if your doctor has not yet suggested doing so, you should ask to have your thyroid tested. Since Hashimoto's is so common in people with celiac and can wreak havoc on memory and thinking, there exists the possibility that you might have this, as well.

Since you're good at researching, please find out as much as possible about the nutritional support you might need for anxiety. I've been able to resolve most of my celiac-related symptoms by finding obscure information on the effects of malabsorption of certain nutrients. Since your intestinal lining was so damaged, you may be lacking the ability to completely absorb some of the lesser known minerals. Sometimes there are nutritionists on staff at local health food stores who can serve as excellent resources when it comes to treating symptoms.

Good luck to you!

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I totally sympathize. I was a PhD level science researcher. During my PhD I published over a dozen articles in refereed publications. At post doc level my brain had already become quite poorly functional. At that point I took time off to have kids and my symptoms worsened. I didn't get diagnosed for another 13 years during which time things got worse and worse. Brainwise, I would have been completely incapable of pursuing my career. I had other symptoms which kept me trapped in the house near a toilet anyway. Now I am 3 years post diagnosis. It took almost 2 years for my mind to clear up. I still don't know if it has gotten back to what it once was, but at least I can remember stuff now, and seem to be capable of critical analysis. It still goes at the slightest trace of gluten, yet here I am wanting to return to work and terrified. I can monitor my thinking ability by seeing how easy it is for me to do things like SUDOKU puzzles. I think that you will heal if you give it time. I think that you should really work on you diet to get all traces of gluten out. Good luck to you.

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Make sure you are definitely as gluten free as possible - see other threads about equipment and other changes to make to achieve this.

I have had lots of neuro problems and continued major lack of energy and can still have bad days or weeks like this last week just gone (which was bad) and feel very demoralised.

I do have some glimpses of good days which helps keep me going. I had to give up my diploma course, I work as a community Nurse with a large caseload and a lot of information to process and struggle constantly, my boss isn't on my back though so I must be doing something right!!!! :rolleyes:

I suffer with depression which is an ongoing battle even when I am gluten free, have had (and sometimes still have) problems with paranoia, anxiety and obsessional behaviour and thoughts and am very negative. I will not let this beat me and there is some glimmers of hope that the longer I am Gluten free It will improve.....

Keep your chin up!! :P

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Make sure you are definitely as gluten free as possible - see other threads about equipment and other changes to make to achieve this.

I have had lots of neuro problems and continued major lack of energy and can still have bad days or weeks like this last week just gone (which was bad) and feel very demoralised.

I do have some glimpses of good days which helps keep me going. I had to give up my diploma course, I work as a community Nurse with a large caseload and a lot of information to process and struggle constantly, my boss isn't on my back though so I must be doing something right!!!! :rolleyes:

I suffer with depression which is an ongoing battle even when I am gluten free, have had (and sometimes still have) problems with paranoia, anxiety and obsessional behaviour and thoughts and am very negative. I will not let this beat me and there is some glimmers of hope that the longer I am Gluten free It will improve.....

Keep your chin up!! :P

I'm tearing-up reading the responses. Thank you so much for all of the kind words, suggestions and support!! I think I'm just coming to term with how difficult it's been to-date. My wife is pregnant, we have a nice house, etc, and I need to find a way to manage our world, but am scared about returning to the work force, along with all of the associated mental and physical demands.

I'm going to see a psychopharmacologist @ some pharmacological assistance. I currently take Adderall, which is a first for me and have found it to be quite helpful, but it exacerbates reflux, which is a bit concerning. I'm curious to hear more about any deficiencies/conditions that can be associated with cognitive decline. I was low in vitamin D 25-Hydroxy -- want to say 22 -- but have been taking a D supplement and am now @ approximately 40. Based on lab values, my B12 has always been very good @ 1000+, but I'm not sure whether there are other confounding factors. And, I did have a slightly elevated TSH level -- @ 4.875 2-months ago and most recently @ 3.750. I've heard differing feedback on the acceptable range and how everyone reacts differently to suppressed/elevated Thyroid levels. I can tell you that one of the greatest benefits of a stimulant is increased energy. Without Adderall, I am very tired most days -- speaking of which, can adrenal fatigue affect memory, mental health, etc?

Thanks again!

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The fact that your TSH is going up and down is a bit of a concern. With Hashimoto's, the thyroid hormone goes up and down as the gland is dying. If you have a knowledgeable doctor, he/she may be willing to give you a small dosage of thyroid hormone to see if your symptoms improve. Without seeing what you look like, I don't know if you're already showing signs of Hashimoto's. Your face will seem a bit rounder than usual, and your eyes will look puffy (so that your eyes appear smaller). Generally, you wouldn't notice these signs when looking in a mirror, but you might notice if you look at a recent photo of yourself.

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Gifree, I know about the long term memory. There is a lot of my childhood memories that I cannot remember. Am no where near as smart as you or some of the other people on this board. My short term memory was horendous at the time. Between the social anxiety disorder and the cognitive problems I dropped out of high school. There are still days when I get my left and right mixed up. Talk about downright irritating.

It wasn't until after I went gluten free that my anxiety went away, my cognitive problems as well as short term memory is starting to come back but it wasn't until I took out gluten, dairy and soy that it started happening. All I can say is hang in there and with your villi as bad as they are from what I can understand it will take at least a couple of years to feel better. So, try to be patient. I know, easier said than done, huh :rolleyes: But keep going we're all here rooting for you.

I hope you get to feeling better. :)

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The fact that your TSH is going up and down is a bit of a concern. With Hashimoto's, the thyroid hormone goes up and down as the gland is dying. If you have a knowledgeable doctor, he/she may be willing to give you a small dosage of thyroid hormone to see if your symptoms improve. Without seeing what you look like, I don't know if you're already showing signs of Hashimoto's. Your face will seem a bit rounder than usual, and your eyes will look puffy (so that your eyes appear smaller). Generally, you wouldn't notice these signs when looking in a mirror, but you might notice if you look at a recent photo of yourself.

Hmm...I would think that an elevated TSH level that is decreasing/normalizing, would be a good sign...no? Are TSH levels typically static? Over the past 6-months, my TSH levels have certainly moved, in both directions -- first up, and then most recently down by over 1pt. I've had GI docs and a very good primary care physician not seem to be too concerned...even though I've questioned the TSH levels and revised range. Maybe I need to seek out an endocrinologist? I can tell you that my energy levels are pretty depleted.

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I'd like to add a few additions to to everyone else's excellent suggestions--starting with one comment:

To quote: " That said, I agree with others that you should take a B-vitamin complex--and the best type is the kind that you can dissolve under your tongue. Trader Joe's sells this type." I at least slightly disagree! Whereas I have found B vitamins to be essential, in both my experience and that of my significant other, Trader Joe's vitamins seem to be cross contaminated with gluten. You might not notice any other symptoms other than neurological perhaps, but its a clear no no in my opinion. Also most of the sublinguals use sorbitol, which some of us at least don't tolerate that well.

Like some of the other posters I have found that B vitamins are essential for good, clear mental health and related neurological issues. However for me I need to take co-enzyme B vitamins in order to absorb them adequately. I take them on an empty stomach. I have noticed a dramatic difference for my heart, memory and anxiety etc..

I take the country life co-enzyme B complex since I beleive its better to take a complex in order to not create an imbalance. They have them at WF. If they agree with you, I suggest you buy them in the large size online since then they are a lot cheaper. I am natively low on B-1, as is my celiac, dh mother. B-1 is essential for properly breaking down proteins and carbohydrates and thus is essential for the entire nervous system etc.

I also suggest eating lots of veggies, and blending them too to make sure you get plenty. It really perks me up and others that I know. Eating a lot of parsley and other curly green veggies or putting them in your veggie smoothies also helps reduce toxicity and improve memory etc.

Nattokinase and bromelain/papain and other fibronylitic agents can help reduce scar tissue even in the villi if taken consistently (also on an empty stomach). I know this has helped me a lot. The scarred villi after all are usually creating the malbsorption problem of things like B vitamins, and oil based vitamins like A and D as well as minerals.

Regularly taking marshmallow root also helps soothe and heal inflamed and damaged villi.

I also take dandelion root and cleavers too now and then to help reduce toxicity and help out the liver, lymphatic system and kidneys, which are also essential for a clear mind and good energy.

In addition, I have discovered I have other allergies running around in the background of my celiac condition that have gotten in the way--like nuts, fruit, ascorbic acid, yeast etc. You might too. It could be worth investigating.

Try going on a very simplified cave man like diet (with foods that you don't normally eat) and then add one food every other day. Keep a journal, make notes of your pulse and how you feel before and after you eat etc. It could be a wonderful learning experience for you.

Of course, exercise is key to improving one's memory as well as overall disposition and health. Did anyone here mention that?

Also--gradually getting rid of silver amalgam fillings (read mercury) can make an enormous difference towards improving one's memory. The mercury etc. can really toxify you as well as create a condition that is like having a battery in your mouth. The thing is though, it needs to be done carefully and gradually so as to not over tox your system since the mercury can be released when you have the suckers removed. Dentists often want to take a bunch out at once, however that can be dangerous. INsist on only having one taken out at a time, once a month. And then take things like dentox or gluten-free whey powder, NAC, mucho green veggies, dandelion etc. to counteract the toxic effect.

On the final note, I am much more clear headed and have a better memory and health overall than I ever had before. Its gone in stages and taken a while but its been definitely worth it. So good luck to you; I am certain that your memory will improve whether gradually or quickly, or a bit of both...

Lastly, I am going to add the Indian herb Bacopa (aka Brahmi) to my supplements. It is supposed to be an excellent aid to one's memory. I intend to find a gluten-free version and try it out for my aged mother as well as for myself.

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Almost 30 myself and am currently just a bit past the 9 month mark past diagnosis. I must say that some of the most impressive gains in cognitive function have been in the past month or two. I know the first few months of being gluten-free were marked with severe improvements in psychological disorder symptoms and while my working memory did increase my thinking was still noticeably fuzzy. Lately however it definitely feels like I have been hitting new levels with my memory and logical processing.

Long term damage can take long term recovery periods to correct, just hang in there.

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I hope I'm not hijacking this thread when I also thank everyone for their comments. It's good to hear that improvement is possible. These problems, plus fatigue, have been the worse aspect of coeliac disease for me and your replies give me some hope. I'll be keeping your advice in mind and looking into new supplements too.

Best wishes to you all.

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I hope I'm not hijacking this thread when I also thank everyone for their comments. It's good to hear that improvement is possible. These problems, plus fatigue, have been the worse aspect of coeliac disease for me and your replies give me some hope. I'll be keeping your advice in mind and looking into new supplements too.

Best wishes to you all.

Hijacking? I think its good to comment on any of these threads if whatever condition relates to your own or those you know about.

It really amazes me how much this topic hasn't really been sufficiently discussed. The poster who related a conference where they did talk about it and how amazed everyone's secret fear was revealed and shared e seems very significant and liberating.

I recently had a similar discussion with my boyfriend. It was like we had the same experiences and responses growing up--being seemingly very intelligent on the one hand yet handicapped with these memory problems, spacing out etc. etc.

I think the more of us that share this the better. We aren't crazy, we just have these allergies often made worse by our gluten sensitivity that affects our nervous system in major ways. The leaky gut syndrome aspect of gluten intolerance/celiac needs to be further explored. So many of us are sensitized and running around with weak nervous system etc. as a result.

And yes, we can and do get better.

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Two things I forgot: Celiac.com has a great article that was published in October of this year on how celiac may cause neurological problems--it's a fascinating article.

http://www.celiac.com/articles/22317/1/Hippies-Werent-the-Only-Ones-Tripping-in-the-Sixties/Page1.html

Also, I forgot to mention that celiac experts recommend L-glutamine to help the gut heal. This really helped me tremendously.

And thanks to the poster that mentioned that Trader Joe's vitamins might be contaminated. I haven't found that to be the case with their B vitamins, but I don't trust a lot of their so-called gluten-free foods. A lot of their products simply say that no gluten ingredients were used. So what? What about the contamination??

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Two things I forgot: Celiac.com has a great article that was published in October of this year on how celiac may cause neurological problems--it's a fascinating article.

http://www.celiac.com/articles/22317/1/Hippies-Werent-the-Only-Ones-Tripping-in-the-Sixties/Page1.html

Also, I forgot to mention that celiac experts recommend L-glutamine to help the gut heal. This really helped me tremendously.

And thanks to the poster that mentioned that Trader Joe's vitamins might be contaminated. I haven't found that to be the case with their B vitamins, but I don't trust a lot of their so-called gluten-free foods. A lot of their products simply say that no gluten ingredients were used. So what? What about the contamination??

Thanks for the heads up on the l-glutamine and that fantastic article! I just forwarded the article url on to two celiac friends as well as my doubting research nurse sister.

And yes, I wouldn't trust TJ's for any supplement these days, especially if I was still having weird neuro complaints.

Bea

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Bea,

I'm glad you liked the article, too--I found it positively riveting. After hearing how doctors are now convinced that celiac is a neurological disease (rather than a gut disease), this type of research seems to confirm that they're heading in the right direction. At the conference, they referred to gluten as a neurotoxin. My grandmother had schizophrenia, and I wonder if she perhaps had celiac all along....so sad. Her daughter (my aunt) suffered from what looked like extreme acne on her face and neck, which looked a lot like my DH. Unfortunately, she died before I was diagnosed and knew what I had. Oddly enough, they are both on my father's side, and it is my mother, her mother, her brother, and her grandfather who all have/had celiac. Having celiac on both sides of the family would explain why both of my children and several of my siblings' children have celiac. Go figure...

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I also feel I've been hugely held back by mental issues. I've always had issues with anxiety, brain fog and mental exhaustion. I did fine at school and despite getting good grades, not as good as they should have been. I've always felt, despite being successful, that I'm under achieving due to issues with my mind.

I find it near impossible to focus, my brain is so fuzzy and I'm always so incredibly tired.

I'm 2 months in to my gluten free lifestyle. I've had a couple of decent days, where I've felt a little better and felt hope. But still struggling like crazy.

I hope you start to feel better soon.

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Bea,

I'm glad you liked the article, too--I found it positively riveting. After hearing how doctors are now convinced that celiac is a neurological disease (rather than a gut disease), this type of research seems to confirm that they're heading in the right direction. At the conference, they referred to gluten as a neurotoxin. My grandmother had schizophrenia, and I wonder if she perhaps had celiac all along....so sad. Her daughter (my aunt) suffered from what looked like extreme acne on her face and neck, which looked a lot like my DH. Unfortunately, she died before I was diagnosed and knew what I had. Oddly enough, they are both on my father's side, and it is my mother, her mother, her brother, and her grandfather who all have/had celiac. Having celiac on both sides of the family would explain why both of my children and several of my siblings' children have celiac. Go figure...

I think all this is very big in its implications. There is so much denial alongside so much suffering! I am so sorry your family has had to suffer like that. Mine has too in many ways. It is so amazing, it is so very political. So many folks are in denial. It amazes me that the researchers just stopped investigating this because it didn't fit their paradigm!!

Actually that article made me cry and makes my boyfriend want to get militant about all this. He was diagnosed with ADD and migraines which he has suffered since he was a child. Since he has gone on diet all his ADD symptoms went away--as well as the migraines, unless he gets CC'd. His father had DH and his mother ADD--and his siblings have multiple allergies, DH etc.

His psychiatrist of course didn't believe him when Chris told him that gluten was causing his symptoms--so Chris just stopped seeing him. The Dr. said you are doing fine, keep taking your meds. Chris had stopped taking them two months beforehand! He's going to email the article to him just to see if it might get through and could help someone else. Of course to acknowledge a simple solution without pushing pills might be a little threatening to the psychiatrist's pocketbook perhaps...

For me its a little more complicated since I am allergic to a lot more things--like now discovering that coconut and tomatoes/potatoes/peppers give me itchy eczema and cause my legs to feel like they are on fire. The St. Vitus Dance aforementioned in the article?

I also used to have definite symptoms that mocked schizophrenia--seeing people sometimes who weren't there. I didn't get worked up about it however since I grew up being aware of shamans, however it still was a little disturbing.

I have also had memory problems and unexplained depression/anxiety at times--both of which are now largely gone unless I get glutened. Like my boyfriend I can still get horrendous migraines if I get CC'd--so I remain very careful about my diet.

I am certain the long term trauma to my villi created a very bad case of leaky gut syndrome--thus causing multiple food sensitivities as well as deficiencies that have affected my nervous system. I contracted celiac after all when I was just 4 months old--and was put back onto eating gluten at age 4.

Nattokinase has helped reduce the scar tissue--as has marshmallow root, bromelain etc. I am also planning on taking the L-glutamine again as suggested. I worried a little and stopped taking it a year or so ago since its bad for folks that have diabetes. I don't--but I was cautious since I had low blood sugar symptoms. The symptoms are pretty much gone now however so I figure I have more flex room these days.

In 2006 I was diagnosed as having the myelin sheath that covers the nerves down to 50%. At that time they suggested I eat eggs--but I couldn't. However just this week--I discovered Now I can eat organic eggs and well washed brown rice if I avoid the coconut and nightshade family as well as, of course, the gluten. Something to be thankful for this Thanksgiving weekend!

Bea

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Bea,

What a long, hard road you've traveled--so many celiacs have met with similar difficulties. I wish I could just spend the rest of my life training doctors, nurses, psychiatrists, and patients about celiac and gluten sensitivities. Advocates for this disease are so essential, but we don't fit into the medical community the way it is presently established. I plan to pull out this article as many times as necessary to educate people about the dangers of gluten.

So, the doctors recognized that you had celiac when you were little? You're so lucky! Unfortunately, they still didn't realize back then that the diet had to be a lifelong one. My mom suffered from her first celiac attack when she was five months' pregnant with me after she had to undergo an emergency appendectomy. As a result, I was born with Rickets and spent a childhood and young adulthood with horrible bone, joint, muscle, and tendon pain. I also suffered from horrible migraine headaches that came on every few days and lasted 2-3 days. I had three miscarriages and infertility issues....and still the doctors were clueless. Even after a lifetime of iron anemia, broken teeth, and night blindness, not a single doctor put all the clues together. All I have to say is "thank goodness for the Internet"; otherwise, the doctors would probably still be scratching their behinds.

As for your myelin sheath problem, I responded on another thread that you started that you should seriously consider taking 1000 mg of L-Lysine daily. I had fairly severe myelin sheath impairment, too, but my research indicated that I need to take L-Lysine and maintain a low L-Argynine level (which means that you should definitely NOT be eating many eggs!).

By the way, Bea, where do you live? I notice that you use British spellings...do you live in Britain or perhaps Australia? I live in California, but my daughter lives in Australia (which is a wonderful place to live a gluten-free life!). Everyone on this forum seems to live so far away from each other....

Take care!

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Bea,

What a long, hard road you've traveled--so many celiacs have met with similar difficulties. I wish I could just spend the rest of my life training doctors, nurses, psychiatrists, and patients about celiac and gluten sensitivities. Advocates for this disease are so essential, but we don't fit into the medical community the way it is presently established. I plan to pull out this article as many times as necessary to educate people about the dangers of gluten.

So, the doctors recognized that you had celiac when you were little? You're so lucky! Unfortunately, they still didn't realize back then that the diet had to be a lifelong one. My mom suffered from her first celiac attack when she was five months' pregnant with me after she had to undergo an emergency appendectomy. As a result, I was born with Rickets and spent a childhood and young adulthood with horrible bone, joint, muscle, and tendon pain. I also suffered from horrible migraine headaches that came on every few days and lasted 2-3 days. I had three miscarriages and infertility issues....and still the doctors were clueless. Even after a lifetime of iron anemia, broken teeth, and night blindness, not a single doctor put all the clues together. All I have to say is "thank goodness for the Internet"; otherwise, the doctors would probably still be scratching their behinds.

As for your myelin sheath problem, I responded on another thread that you started that you should seriously consider taking 1000 mg of L-Lysine daily. I had fairly severe myelin sheath impairment, too, but my research indicated that I need to take L-Lysine and maintain a low L-Argynine level (which means that you should definitely NOT be eating many eggs!).

By the way, Bea, where do you live? I notice that you use British spellings...do you live in Britain or perhaps Australia? I live in California, but my daughter lives in Australia (which is a wonderful place to live a gluten-free life!). Everyone on this forum seems to live so far away from each other....

Take care!

Happy this thread has sparked such a lively conversation!

Rosetapper: did you get my email response (on page 1 of the thread), inquiring about TSH levels that move? Your initial response, indicating that TSH levels that go up and down may indicate a 'dying' thyroid has me listening. You have my ear!

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Oh, my gosh! I'm sorry I didn't get back to you regarding the thyroid matter. Here's a good piece of information on how Hashimoto's can cause an up-and-down ride with regard to thyroid hormones. The part you'd be most interested in deals with "thyroiditis flares."

http://thyroid.about.com/cs/hypothyroidism/a/hypoandhyper.htm

Hope this helps!

Laura

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I've also had some neuro symptoms that I didn't realize were connected to Celiac until now! I'm only 28 and I have a B.A. but I also have memory problems, brain fog, mental tiredness, and problems remembering names of things. I also have emotional fogginess too - I feel ambivalent about most things but then silly sappy movies can get me teared up.

I was layed off a few months ago which has turned out to be bittersweet. The money was good, the environment was poor. But I can't imagine having to go through what I have in the past 2 months and still have to drag myself to work every day. I have been hesitant to go on any interviews because I still don't feel very well and I'd rather stay home. But I need the money, so I'm having some anxiety trying to find something where I could work from home :/

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    • Why would your PCP go against the advice of leading celiac researchers and the American and British GI Associations?  The endoscopy/biopsy is still the gold standard for diagnosing celiac disease.     I understand your daughter's  situation, but I would get a second opinion from a GI before going gluten free.   http://www.cureceliacdisease.org/screening/ http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578.long#T2 http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english  
    • It might not be Celiac, if your tests are negative.  Have you been to a doctor and been tested for diabetes or thyroid issues lately?  What are your parents doing about your issues?  Some things like acne and shin splints might be explained by age or activity, but passing out and depression need to be addressed.
    • I will visit  Johannesburg  international airport, is there any gluten free food available? The so called customer service office did not answer my question! So I am taking it to the forum. If you know of any restaurants inside the airport please let me know.  
    • I will visit Beijing international airport, is there any gluten free food available? The so called customer service office did not answer my question! So I am taking it to the forum. If you know of any restaurants inside the airport please let me know.  
    • Instead of going to my doctor I went to theranos to get a celiac blood test done. Doctors never seem to want to hear about you diagnosing yourself so I decided against going to the doctor . So my symptoms are/were being bloated after eating, stomach pain, constipation, also diahrea (my poop is always green ik tmi), bad anxiety, depression, irritability, insomnia and anger after consuming a big meal of gluten, I also have a rash on my right leg below my butt I don't think it's dh tho, I'm always thirsty (like I can't get enough water), dizzy spells (fainting and blacking out), my left side of my face tingles (could do with anxiety), my face also feels hot after consuming gluten, I have acne, hip pain and shin inflammation, back pain, and dandruff. My theranos results came back negative with everything ranging from 0-3 so it was super low. I had the celiac panal done. Well anyways I thought maybe it's wrong and went off gluten anyways. This is my 6 day gluten free and my symptoms haven't resolved at all really. My bloating has lessened a tiny bit but I still get bloated after every meal. And im constipated all the time. My poop stopped being green though. I'm not eating dairy right now either. I'm also having worse anxiety and am still depressed. If Im gluten sensitive shouldn't I be feeling better by now? I also live in a house with gluten eating people sense im only 15 but I try hard not to cross contaminate. I eat lots of veggies  (Kale and salads) and lots of nuts and beans and indulge salmon and tuna a few times a week and eat quinoa every morning for breakfast. I'm scared I'm not gluten sensitive and I don't know what to do. 
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