Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cognitive Challenges & Career


gifree

Recommended Posts

YoloGx Rookie

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!

Hi Rosetapper,

Thanks for the long post! We both have been through it, eh?

By the way, is it the "eh?" that made you think I am British? I am not though I have a dear friend and co-worker who is and may have picked up a few of his sayings.

I had forgotten about the L-Lysine vs Argenine. What is the Lysine supposed to do? I need to look these up. From what I I recall, Lysine is good against herpes, and Argenine needs to be avoided for that... But it seems you are positing that Lysine is also good for building up the myelin sheath on one's nerves.

The eggs are low salicylic acid by the way... though as you say they are high on the Argenine list. I figure if i have them once a week that is a vast improvement...

I found a list of salicylic acid foods finally. Seems the whole thing is a bit confused. Once again trial and error are in order. Some react to one thing and another to something else. Nevertheless they suggest choosing the no salicylic acid to low and not above.

I have not tolerated bananas or pears in recent years, whether ripe, cooked or not. Both of which are very low in salicylic acid. But maybe that is another story... Nevertheless, if I avoid the water filtered by charred coconuts and avoid other high salicylic acid items, maybe, just maybe I will be able to eat bananas and pears in the future.

I just sent you an email--drop me a line if you'd like! I am impressed with your comments and story. We might have a lot to talk about.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gifree Apprentice

Hi Rosetapper,

Thanks for the long post! We both have been through it, eh?

By the way, is it the "eh?" that made you think I am British? I am not though I have a dear friend and co-worker who is and may have picked up a few of his sayings.

I had forgotten about the L-Lysine vs Argenine. What is the Lysine supposed to do? I need to look these up. From what I I recall, Lysine is good against herpes, and Argenine needs to be avoided for that... But it seems you are positing that Lysine is also good for building up the myelin sheath on one's nerves.

The eggs are low salicylic acid by the way... though as you say they are high on the Argenine list. I figure if i have them once a week that is a vast improvement...

I found a list of salicylic acid foods finally. Seems the whole thing is a bit confused. Once again trial and error are in order. Some react to one thing and another to something else. Nevertheless they suggest choosing the no salicylic acid to low and not above.

I have not tolerated bananas or pears in recent years, whether ripe, cooked or not. Both of which are very low in salicylic acid. But maybe that is another story... Nevertheless, if I avoid the water filtered by charred coconuts and avoid other high salicylic acid items, maybe, just maybe I will be able to eat bananas and pears in the future.

I just sent you an email--drop me a line if you'd like! I am impressed with your comments and story. We might have a lot to talk about.

Warms my heart to see everyone's comments. Have people gone beyond diet and had any testing conducted -- i.e. SPECT scans or neurofeedback, etc.? In my initial quest, I read a number of books by Daniel Amen @ ADHD and he uses somewhat controversial SPECT brain scans to diagnosis specific ADHD subtypes and then recommends a regiment of medication, supplements, therapy, exercise, etc. It's a bit expensive though, so I haven't barked-up that tree. I have gone for neurofeedback however and not surprisingly, found that I had very underactive Beta & Alpha waves (waking state) and overactive Theta & Delta waves (near/sleeping state); not sure how any of that is related to Celiac?

What I do know, is that fatigue sucks! After each work day, I was often fried and for a while there, had only two alternatives: (1) go to the gym and blow-off nervous energy for a bunch of hours or (2) come home and nap most days. Regularly staying late at the gym was no longer an option, so I typically would come home from work, but didn't feel very conversant or alive. I'm very curious and love to learn, so I would often plop myself on the couch to watch something educational, but often didn't/don't have the energy nor alertness to fully attend to what's on the tube. Does anyone find that they need an overwhelming amount of down time? Regardless, of the sort of work I do, I just feel spent. I don't think my brain takes too kindly to work of any sort. B)

I have a child on the way, and desperately want to be the best possible me, so that i can be the best possible father!! I'll do anything to figure out what the heck is wrong, whether it's simply acknowledging that the healing process may take some time for someone whose likely had active Celiac for decades and/or whether thyroid issues, shot adrenal glands, etc might also be contributing factors. Let's keep this thread going -- love all of the responses and 'me toos'.

BTW: In rereading my own thread, I thought hmm, this doesn't sound like someone suffering from legitimate memory issues. Give it a year or less...I'll likely have no recollection of this thread B). This is all stuff that I've very recently beat into my uncooperative brain. It's like an unruly child that I need to behaviorally modify. In all seriousness, I've thought about my memory apparatus in visual terms and beyond the few retained broad brush strokes, I see a brain that only operates on the first floor and has a limited amount of space. Once that space is filled, the first (old) memories must be removed in order to make room for the most recent (new) memories...and this loop continues over and over, with only very few memories making it long-term.

rosetapper23 Explorer

Yes, I agree--the fatigue and malaise can feel life-sucking. I've always needed more hours of sleep than other people, and there have been times in my life when I simply fell asleep every night on the couch immediately after arriving home from work. Those days are behind me, thankfully. It sounds as though you may be deficient in any number of nutrients and/or hormones. I suppose that your doctor tested your ferritin levels since you have celiac (??). If not, you should really have that done--being low in iron can cause both physical and mental problems.

BTW, one of the supplements I forgot to mention that I take for memory and cognitive health is Gotu Kola (people also take it for its anti-aging and anti-cancer properties).

You may think this is far fetched, but for me personally, what worked best to make me feel more energetic and clear headed was taking a ratio of parent Omega 6s and 3s, which supposedly causes the body's cells to become fully oxygenated. This is a new concept to most people, but I attended a lecture on it by Brian Pectin after I'd completed chemo for breast cancer. I read his book and was convinced that he was on the right track. I've been taking the blend of oils for 3-1/2 years now, and I'm still amazed at how much energy I have and how much better my cognitive abilities are--it really helped me overcome chemo-brain, too. If you're interested in learning about this concept, you can take a look at www.brianpeskin.com. He provides a lot of articles online that you can read if you don't want to buy any of his books. I do other things, too, to increase my body's oxygenation level, such as using essential oils in all of my personal care products and taking Cordyceps, since studies have shown that this mushroom (in capsule form) increases oxygenation. Since a fully oxygenated body is essential for staving off cancer, I've done a lot of research into how to increase my oxygen rate. I just thought I would mention this because of how helpful it's been to my health, but I realize that not everyone might be convinced that this is the way to go. However, I think most people could agree that a fully oxygenated brain operates a lot better than one that is oxygen deprived.

Thank you for posting this thread--it really has started an interesting conversation.

gifree Apprentice

Yes, I agree--the fatigue and malaise can feel life-sucking. I've always needed more hours of sleep than other people, and there have been times in my life when I simply fell asleep every night on the couch immediately after arriving home from work. Those days are behind me, thankfully. It sounds as though you may be deficient in any number of nutrients and/or hormones. I suppose that your doctor tested your ferritin levels since you have celiac (??). If not, you should really have that done--being low in iron can cause both physical and mental problems.

BTW, one of the supplements I forgot to mention that I take for memory and cognitive health is Gotu Kola (people also take it for its anti-aging and anti-cancer properties).

You may think this is far fetched, but for me personally, what worked best to make me feel more energetic and clear headed was taking a ratio of parent Omega 6s and 3s, which supposedly causes the body's cells to become fully oxygenated. This is a new concept to most people, but I attended a lecture on it by Brian Pectin after I'd completed chemo for breast cancer. I read his book and was convinced that he was on the right track. I've been taking the blend of oils for 3-1/2 years now, and I'm still amazed at how much energy I have and how much better my cognitive abilities are--it really helped me overcome chemo-brain, too. If you're interested in learning about this concept, you can take a look at www.brianpeskin.com. He provides a lot of articles online that you can read if you don't want to buy any of his books. I do other things, too, to increase my body's oxygenation level, such as using essential oils in all of my personal care products and taking Cordyceps, since studies have shown that this mushroom (in capsule form) increases oxygenation. Since a fully oxygenated body is essential for staving off cancer, I've done a lot of research into how to increase my oxygen rate. I just thought I would mention this because of how helpful it's been to my health, but I realize that not everyone might be convinced that this is the way to go. However, I think most people could agree that a fully oxygenated brain operates a lot better than one that is oxygen deprived.

Thank you for posting this thread--it really has started an interesting conversation.

Interesting. I'll definitely look into that...along the list of potential cognitive impacts. As for next steps, I'm off to a psycho-pharmacologist on Monday...will let you know what she says. I'd really like some more conclusive testing conducted, to, at the very least, either corroborate the cognitive issues that I'm perceiving or dismiss, with evidence.

GFinDC Veteran

Hi Gifree,

I have had plenty of problems with short term memory myself. Long term memory also. I used to have a heck of time remembering peoples names, although I could recognize their faces. And short term memory doing tasks on the computer was abysmal. Like switching from one application to another to look for some information I would forget why I had switched to the other application within seconds. It is very frustrating stuff. I found that my memory has improved since going gluten-free though, and also soy free and dairy free. Another thing that affected me a lot was not being able to sleep. And that seemed to be related to the soy and several other things, like food colorings and dairy. I went on an elimination diet, several times over the last 3 years to figure out what things were affecting me. Every time I would identify one more things that I needed to avoid. Now that I am free of the bad foods that bothered me, I can sleep, I can remember things better, and I am much more relaxed. I used to have thot loops where I couldn't stop thinking the same things over and over. And a racing mind went I went to bed that prevented me from sleeping. Later I found that dairy would keep me awake for days on end, although after I was off soy a while I could at least tolerate dairy to some extent. Not enough to eat it again though. I also used to have a tick above my left eye that stopped after going gluten-free. For a while last summer I would pass out while sitting at the computer for no apparent reason. The doctors couldn't find anything with their tests including an EEG on the head thing. But I did an elimination diet and stopped the soy and that fixed the fainting problem. It took a few months to get completely better but it happened. Now as long as I stay clear of my food intolerances I feel pretty good and can think ok too. But if I get into any of them the problems start re-appearing. My latest mistake was buying some Food for Life gluten-free bread with carrot fiber. Carrots and I don't get along and yesterday i was pretty out of it. So it's back to the brown rice tortillas for me. Things can get better so keep working it and keep trying to find the food culprits that cause you problems. :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748

    KittyKatJill
    Newest Member
    KittyKatJill
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.