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knitty kitty

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Posts posted by knitty kitty

  1. https://www.ncbi.nlm.nih.gov/medgen/14368







    ScienceDirect › article › pii › pdf
    Nicotinic Acid Therapy of Dermatitis Herpetiformis - ScienceDirect.com

    I don't think Niacin is a "cure-all" for Celiac.  I think Celiac Disease causes malabsorption which results in malnutrition.  Supplementing with Niacin, nicotine acid, nicotinamide helps repair skin in DH and helps alleviate intestinal damage.  

    I think you would be wise to reevaluate your treatment of others. 

  2. The OP always includes " this is not medical advice" in his closings.  

    Some of us are intelligent enough to connect the dots even though we don't have medical initials after our names. 

    There is a strong correlation between loss of niacin and worsening of Celiac symptoms.  It might not be cause and effect.  It might be "which came first the chicken or the egg?", but there is definitely a connection.  

    I admire people who keep an open mind, who can see possibilities, who can think outside of the box.  

    Isn't that what we want? The possibility of correct diagnosis without languishing for years infirm and in pain because a medical professional with a closed mind dismissed Celiac Disease or deficiency diseases because that doesn't happen anymore in our well fed modern world? 

    I think it's exciting to hear about these little pieces of information that show us baby step by baby step how the body's functions are affected by Celiac Disease.  These little snippets of information help us see the bigger picture.  Maybe in the future the snippets may have to be refined or corrected, but the point is we are learning more every day and maybe one day we will have a cure.  But for right now let those of us who like putting puzzles together contribute according to the gifts they were given.  


  3. Here's an article on some of niacin's effects on health....


    Perhaps niacin deficiency just goes by other names now...... 


    Just like Celiac Disease used to be only diagnosed in thin, "wasting away" people and now includes people who are normal weight or heavier, maybe niacin deficiency symptoms have changed a bit, too.  Maybe niacin deficiency isn't full blown pellagra with dramatic changes because our Western diet is fortified and suboptimal amounts may still be absorbed and the course of the disease changes when a person receives a suboptimal amount instead of none at all.  Maybe doctors aren't knowledgeable about deficiency diseases because they are so rare in our modern world.  Maybe the preliminary symptoms of niacin deficiency are renamed to modern terms.  Maybe the dementia symptom of pellagra is now termed Alzheimer's or Parkinson's.  

    Pellagra and Beriberi still do occur in bariatric surgery patients.  Maybe Pellagra is studied in relation to alcohol consumption because it's so easily recognizable in that context.  Maybe Pellagra still occurs but in other contexts it's missed altogether or misconstrued into something else, just like many Celiacs suffer for years misdiagnosed as IBS or depression or psychosomatic.....

    I applaud PosterBoy's research.  Yes, sometimes it does seem to go out on a limb with rats and small case studies, but there's advances being made by looking at mice and small case studies and investigating those tiny clues....and it's a good thing to look at those tiny clues and go "Hmmmm..."  We didn't get to the moon overnight...it took a very long time from the Wright brothers to Van Braun's rockets....Maybe one day we'll know everything about Niacin and Celiac Disease, but for now we need to be supportive of each person's contribution toward dealing with Celiac Disease.  

    Every one has a different experience with Celiac Disease.  Every one has different symptoms and the symptoms can change over time.  And some of us have experienced Pellagra first hand and know the truth.   

    Knitty Kitty 


  4. Rhyo9, 

    Sorry to hear about your daughter's illness.  She tested positive for Celiac Disease.  Many Celiacs have vitamin and mineral deficiencies when first diagnosed because Celiac Disease causes malabsorption which results in malnutrition.

    Intractable vomiting can be a symptom of a vitamin deficiency.  Thiamine (vitamin B1) deficiency, niacin (B3) deficiency, B12 deficiency, Vitamin D deficiency, magnesium and potassium deficiencies may cause vomiting.

    I hope your daughter is doing better and that you'll keep us posted on her condition.


    On 8/7/2019 at 4:01 AM, Rhyo9 said:

    My daughter was admitted to the hospital for intractable vomiting and weight loss, was misdiagnosed with an eating disorder and transferred to an eating disorders unit. While there, the results of her antibody test for Celiac came back positive, they did an upper endoscopy and biopsy and guess what - she has Celiac. They still insist that she has Avoidant Restrictive Food Intake Disorder (ARFID) since she keeps throwing up. But she's been obviously glutened once and perhaps not so obviously other times. Also, I suspect that she may have developed some food sensitivities. She does not have anxiety around eating, etc.

    I guess medical people are still skeptical of food sensitivities? I'm pretty sure she is sensitive to peanut butter, as she throws it up pretty much immediately every time.

    Any insights on food sensitivities would be appreciated.


  5. TrailWalker, 

    Welcome to the forum.  You've found a good place to get good advice.

    I agree with GFinDC.  Get to a doctor who has experience with Celiac Disease.  Celiac Disease is not an allergy.  You do not need to be seen by an allergist!   

    Your symptoms sound similar to the ones I had before my diagnosis.  

    I had Sulfite/Sulfate Hypersensitivity.  I reacted to perfumes, air fresheners, cleaning products, dryer sheets, artificial flavorings, artificial coloring, wood smoke, brewers yeast, soaps, carrageenan, eggs, dairy, shellfish, crustaceans, jams and jellies containing pectin, condiments, anything fermented and some medications.  I even reacted to Sulfites in some black teas (tea leaves are fermented).

    I felt like I was reacting to everything around me including plastics and polyurethane.  There are Sulfites in these things.  (Yes, I only use leather purses, too.  I don't use cloth because they might pick up gluten crumbs or perfumes).  

    My face would turn red and rashy, then peel. (Glycerin soap helps alleviate the redness.)  I would have post nasal drip, dry eyes, heart palpitations, joint pain, digestive problems like dumping d, bloating and strange gurgling.  

    Here's an article that explains more about Sulfite Hypersensitivity.  (Note that Vitamin B12  helps alleviate sulfite hypersensitivity.  Many people with Celiac Disease don't absorb adequate Vitamin B12.) 


    Here's an article by a doctor with Celiac Disease and Sulfite Hypersensitivity caused by Mast Cell Activation Syndrome...


    Mast Cell Activation Syndrome and Histamine Intolerance can be found frequently with Celiac Disease.  Celiac Disease is an autoimmune disease.  Your body's autoimmune system over reacts to the smallest irritant.  

    Celiac Disease causes malabsorption which results in malnutrition.  Your body can be deficient in vitamins and minerals needed to rid itself of excess Sulfites or other irritants.

    Another article related to the one above


    And more info on MCAS...


    I found the Low Histamine Diet and the Autoimmune Paleo Protocol Diet (the AIP diet)  together helped to relieve my symptoms and put me on the road to recovery.  

    The Low Histamine Diet details are here.  (Make sure everything is gluten free, dairy free and grain free, too...) 


    The AutoImmune Paleo Protocol diet is here...


    So follow the AIP diet, making sure your food choices are low histamine foods.  Keep a food journal.  And....

    Incorporate Bone Broth for healing your gut, and as a source of calcium and other minerals and vitamins you think you can only get through milk.  (Kale and other leafy greens are good sources of calcium, Vitamin E, and potassium, too.)


    This is the bone broth recipe I use...


    Quit consuming DAIRY!  Celiac Disease damages the villi that produce the enzyme that digests the sugar in milk, lactose.  That undigested lactose and other carbohydrates are fermenting and feeding the wrong sort of bacteria in your gut causing all sorts of problems.  Some Celiacs have problems with Small Intestinal Bacterial Overgrowth (SIBO).  By going on the AIP AutoImmune Protocol diet, those troublesome bacteria are starved and die off leaving the good intestinal flora to repopulate.

    Do get checked for vitamin and mineral deficiencies.  The dietician may be able to help with this.  Taking vitamin supplements may skew tests for vitamin and mineral deficiencies. You may be asked to quit taking supplements for a month before the tests.  The water soluble vitamins are the eight different B vitamins and vitamin C, which need to be replenished every day because they aren't stored in the body long.  Niacin (B3) and thiamine (B1) are necessary to heal the intestines.  Niacin will cause flushing, but that goes away as you take it regularly.  A good B Complex containing all the B vitamins may be helpful.  I took niacin with every meal because I was so ill, in addition to the B Complex. The fat soluble vitamins, A,D, E and K, may be deficient, too.  My Vitamin D level was extremely low.  Once I got my Vitamin D up, I felt much better.  Vitamin D helps stabilize Mast Cells so they don't degranulate and release histamine.  Liver is a good food source vitamins A and D.  

    I hope this helps.  Keep us posted on your progress.  









  6. Yes, I think you should have an endoscopy, not to diagnose Celiac Disease, but to examine the amount of damage done to your intestines and to look for other possible problems like atrophic gastritis.  Cycling Lady's atrophic gastritis was only diagnosed with an endoscopy.  Atrophic gastritis contributes to anemia.  And anemia is related to thyroid dysfunctions. 

    Here's an article that might be of interest.


    Ask for vitamin and mineral deficiency tests, too.  You might need B12 and folate in addition to iron in order to correct your anemia.

    Hope this helps!

  7. On 7/17/2019 at 12:08 PM, WheatlessAdventures said:

    Thanks to everyone! It's nice chatting with people who understand and have empathy.

    I looked into the AIP diet, and I'm going to start it tonight! It seems...restrictive, but I'm going to look at it as a way to make me feel better instead of what I can't eat. Thank you for the tip, knitty kitty! And thanks for the info on supplements. I take a lot of those supplements already but I think I'm having malabsorption issues. I eat and then I feel hungry about 15 minutes later, it's awful! Is that normal?

    Thanks to everyone for responding. I feel so welcome here already.


    So happy to be of help! 

    Yes, the AIP diet does seem to be a bit restrictive, but I adopted the mantra "eat to live, not live to eat" and reminded myself often I was healing on the inside.  I couldn't see it but I could feel it.  

    I found eating small frequent meals the norm at first.  As you heal, you'll absorb more nutrients and time between meals will get longer.  I found it helpful to keep posted on the fridge ideas for meals and snacks.  I often made crock pot soups, bone broth, or stews to have at the ready.

    In addition to a B-complex, I also supplemented low doses of some individual B vitamins (niacin and thiamine) with every meal.   The B vitamins all work together, so be sure to take a B-Complex even if you take additional individual B vitamins.  B vitamins are water soluble, so any excess is excreted in urine. 

    Don't forget to take vitamin C! I take an elderberry gummy containing vitamin C and zinc.  And to help with sleep, take magnesium, B6, and tryptophan.  Take calcium at a different time than magnesium as they compete for absorption.  As for iron, I actually like to eat liver, but a desiccated liver supplement works better for me than a constipating iron supplement.  

    And healthy fats are important for the brain and contain those important fat soluble vitamins A, D, E and K.  I'm in favor of having a high vitamin D level, so vitamin D supplements are a must for me.  

    I know it's a lot of information to take in, but you'll get the hang of it.  A food journal really helps.  And so does this forum!  It's been a guiding light for me and I hope it will be for you, too.

    Best wishes! 

  8. "Also, any suggestions for healing myself. I'm severely fatigued with headaches and cracks in the corners of my mouth, severe stomach pains and bloating (especially after eating anything), and horrible depression. "

    WheatlessAdventures, welcome to the forum!

    Many newly diagnosed Celiacs have vitamin and mineral deficiencies.  Talk to your doctor, dietitian, or nutritionist about being checked for deficiencies and about supplementation. Common deficiencies include B12, iron, magnesium, and Vitamin D.

    Cracks at the corners of your mouth are called angular cheilitis and are often caused by deficiencies in some of the eight  B vitamins (thiamine, riboflavin, niacin and cobalamin).  Here's a link to an informative article, but it's not written for the gluten free so be alert....


    Migraines can be caused by deficiencies in the B vitamins pyridoxine, folate and cobalamin.  

    Fatigue can be caused by a deficiency in B12 (cobalamin), folate and iron.  B12 deficiency is also a cause of depression.

    Your intestinal tract needs niacin (B3) to heal so it can digest properly without pain and bloating. Another form of niacin, tryptophan, is used to make that "feel good" brain chemical serotonin which lifts that depression. Neurotransmitters like serotonin are made in your intestinal tract. 

    Vitamin D (and the other fat soluble vitamins A, E, and K) are often low in Celiacs because we have difficulty absorbing fats.  Low Vitamin D can be a cause of depression, too.

    I recommend following the Autoimmune Paleo Protocol diet (AIP diet).  I found the book "The Paleo Approach" by Dr. Sarah Ballantyne extremely helpful.  The AIP diet has been scientifically proven to promote healing.  It's basically meat and veggies, no grains, no legumes, no nightshades (tomatoes, potatoes, eggplants and peppers).  

    Keeping a food journal can help you identify problematic foods, especially after you've healed and can try expanding your diet.  

    Ditto what the others have said about eating out.  Eat before you go to a function or bring your own food.  

    And DO Visit the forum often to keep us posted on your progress and for support and understanding.  Like Ennis said, only another Celiac can truly understand gluten free.  

    Wishing you all the best on your journey! 









  9. 4 hours ago, mcbphd1 said:

    It is such a difficult risk/benefit for me to have medical procedures like an endoscopy.  I have so much trouble with anesthesia of any kind. 

    Anesthesia used during endoscopy, surgery or dental procedures contains nitrous oxide.  Nitrous oxide combines with the cobalt in B12 (Cobalamin) in a way that's irreversible.  The nitrous oxide combines permanently, leaving you deficient in B12.  If you have low stores of B12, deficiency symptoms may not appear for days to weeks later when the B12 stores are exhausted.  This time delay can prevent recognition of the actual cause and delay the remedy.  

    Be sure to tell your anesthesiologist and doctor you're prone to B12 deficiency and request vitamin B12 shots before and after procedures involving anesthesia.  

    This has happened to me! It's very scary to be severely deficient in B12 and suffer B12 deficiency related problems such as psychiatric problems (B12 deficiency dementia, depression) and physical problems (fatigue, anemia, nerve damage pain). 

    Here's some articles from National Institute of Health about it....




    With Intrinsic Factor problems like PosterBoy mentioned,  low dose B12 supplementation all the time might be a good idea.  

    Hope this helps connect the dots

  10. Here's an article that explains the gluten - gut - microbiome connection thoroughly.


    And here's a study done on the connection between low vitamin B12 and OCD.  


    And B12 deficiency and hypothyroidism:


    Celiac Disease causes malabsorption which results in malnutrition, aka vitamin deficiencies.  Vitamin deficiencies affect how your body and brain function.  

    You need vitamins to make those neurotransmitters your brain needs to function.  Vitamin B12 is maybe one of the most important for brain function.  Without it one can suffer mental changes such as brain fog, OCD,  dementia and depression a long time before a clinical manifestation such as anemia shows up.  Some Celiacs have a problem absorbing sufficient B12 from their diets because of the damage to their villi.  B12 (cobalamine) needs some other B vitamins to function properly like folate (B9) which needs riboflavin (B2) which needs thiamine (B1) which needs niacin (B3).... The nine B vitamins all work interdependently.  

    If you're deficient in B12 and other B vitamins, when you go gluten free, the deficiencies become readily apparent.  Gluten containing foods are required by law to be enriched with vitamins because vitamins are stripped out during processing.  Removing this source of vitamins when you go gluten free can make you feel awful because you're deficient already.  You feel better returning to gluten containing foods because you get those vitamins again.  It's nearly impossible to eat enough gluten free foods to make up for the deficiencies due to malabsorption and damaged villi.  

    Ask your doctor or nutritionist about supplementing with the methylated forms of B vitamins.  The methylated forms are readily utilized by the body.  Baseline vitamin deficiency tests should be done before starting supplementation or three weeks free of supplements.  The water soluble B vitamins (whether from foods or supplements) will only stay in your system three weeks.  After three weeks, deficiencies begin.  

    I suffered through the OCD/depression/dementia from B12 deficiency and other B vitamin deficiency problems (pellagra and beriberi).   Please don't give up on the gluten free diet!  The Autoimmune Protocol Paleo diet along with supplementing with methyl forms of B vitamins really does work!

  11. 4 hours ago, mcbphd1 said:

    I was diagnosed with celiac and have been gluten free since 2012.  It took a year or two to figure out what that really meant. Then another couple of years to figure out no restaurants, no gluten in the house, etc, as I am extremely sensitive.  Now, I only occasionally have issues if I have to travel, especially if I cannot take my RV or if I am around the grandkids who are young and very gluten covered.  After continued problems, I had allergy blood work over a year ago and found I am allergic to avocados, lemons, tomatoes, shrimp, and eggs.  So more creative cooking and dietary restrictions.  It seems I also have mast cell issues, which contribute to inflammation and reactions.  My problem is this - despite careful dietary planning, I continue to struggle with vitamin and electrolyte deficiencies.  My potassium drops low and this makes me feel like I am going to die.  After 6-9 month of terrible joint and muscle pain, we discovered I am very deficient in Vitamin D.  Here is my question - is it possible that the small intestine was damaged to the point where I just can no longer absorb vitamins?  Could the years of undiagnosed celiac have created vitamin absorption issues long after I have been gluten free and even though I am almost 100% certain I get zero explosure?  I was diagnosed late - for many years my only symptoms were odd blood work, neurological and psychiatric symptoms, and pernicious anemia.  Only for about a year prior to diagnosis did I have any symptoms that involved gastro systems.  Anyone else have continued issues absorbing nutrients even after years of being gluten free?

    Hello, sorry to hear you're having ongoing challenges.  

    Some Celiacs do take longer to heal and because you're having problems with mast cell activation syndrome, you may not be recovering as quickly as you would like.

    Correcting your vitamin D deficiency will help stabilize those pesky mast cells.  Do get your vitamin D level up to 75 nmol/l or above. 

    Stick to a low histamine diet.... no fermented or pickled foods, no vinegar, no sulfites or sulfur rich foods (wines, shellfish and shrimp, eggs, and preservatives), no cured meats, no dairy, and no citrus.  These are all things that trigger those mast cells.

    Keeping a food journal is really helpful in identifying problematic foods.  

    Try the Autoimmune Paleo Protocol diet.  It is wonderful in calming down your over reacting system.  It may sound extremely restrictive, but you won't stay on it forever.  Just meat and vegetables.  No legumes, no dairy, no nightshades, no processed foods. After a few months on the AIP diet you can try expanding your diet one food at a time once a week.  Keep that food journal! 

    Do consider vitamin and mineral supplementation while you're still healing.  Celiacs often have problems absorbing fat based vitamins (vitamins A, D, E and K).  While you're healing, you need extra B vitamins. The nine B vitamins are water soluble and so are lost quickly if you have digestive upsets.  Some Celiacs have a Mthfr genetic mutation and need to take the methylated versions of the B vitamins.  I take Thorne Research - Methyl-Guard Plus.  

    I understand what you're going through.  I've been through it myself, the vitamin D deficiency, the mast cell activation syndrome, the Mthfr gene mutation requiring methylated B vitamins.  I found the AIP diet and the low histamine diet to be tremendously helpful.  

    Do talk to your doctor and nutritionist about diet changes and vitamin supplementation.  (And to rule out physical problems like Cycling Lady's.)

    Hope this helps!


  12. I think it's related to a deficiency of Essential Fatty Acids (EFA's).  Celiacs often have trouble absorbing essential nutrients, especially fat based nutrients like EFA's, vitamins A, D, E and K.  

    You might try adding healthy fats to your diet like cod liver oil, flaxseed oil, olive oil, or hemp oil (not CBD oil although that has benefits, too).  

    Hope this helps.

  13. "I'm pretty low on Vitamin D, but every time I take any type of supplement I have bad reactions. I even went out my way to findVitamin D that is organic and has no sweeteners, fillers or any other ingredients other than what is core to makingvitamin D. But hey, my body doesn't like it."

    2 hours ago, Defokus said:

    I had a blood test from an allergist and my ECP levels were 3x normal range. ECP differs from standard eosinophil percentage that is common in a CBC blood test. 

    Levels are 66.7ug/l normal is <20ug/l.

    From what I read this is pretty dangerous and is also a marker for tumours or can cause organ damage. It is also termed as eosinophilia which is quite scary. 

    I couldn’t find anything related to this on the forum which also makes me wonder what is going on. Any advice?



    Get your Vitamin D level up!  

    Vitamin D is extremely important to your health!  Low Vitamin D levels affect many of your body's functions and your immune system. 

    Low Vitamin D can make your eosinophils go crazy....


    "Vitamin D-deficiency induces eosinophil spontaneous activation"


    "Impact of vitamin D deficiency on increased blood eosinophil counts"

    Low Vitamin D also affects your liver...


    "Vitamin D Supplementation and Non-Alcoholic Fatty Liver Disease"


    I'm allergic to fish and shellfish, and have reactions to cod liver oil and krill oil (both are sources of Vitamin D).    Lanolin in another fat based Vitamin D source.  Some Celiacs have difficulty absorbing fats like these and so you might opt for a "dry Vitamin D" supplement.  Desiccated Liver supplements are a good source of Vitamin D as well as Vitamin A and B12. There are also vegan sources of Vitamin D.  These are made from microalgae and lichen.  

    Vitamin D 3 is the natural form of Vitamin D and is easily used by the body.  Vitamin D 2 is the synthetic form which is often prescribed, but is not as well used by the body.  This is the form added to fortified milk.  Some Celiacs become lactose intolerant due to damage to their intestinal villi which produce enzymes to digest dairy. So, dairy with its D2 might not be a good choice.  

    Once you have a significant deficiency, it's very hard to make it up by just getting enough sun (especially in the northern latitude where you are) or consuming Vitamin D rich foods like salmon or milk or liver.  (Actually I like eating liver!)

    Optimum Vitamin D level should be 30 ng/ml (75 nmol/l) or above.  At these higher levels, Vitamin D can work as it was intended and fight autoimmune problems. 

    I had a severe Vitamin D deficiency.  I can't express what a difference getting my Vitamin D level up made to my health.

    Please don't ignore your Vitamin D deficiency.   Try different Vitamin D supplements until you find one you can tolerate and that works for you and you will see many of your health problems improve.  

    Hope this helps!

    Knitty Kitty










  14. 3 hours ago, cyclinglady said:

    I have researched this a bit, but I can not determine which US  companies might be using this stuff.  It sounds like it is a cost reduction measure (gluing  scraps of meat or improving inferior/low gluten cheap wheat).  I hope the Gluten Free Watchdog or celiac groups are researching this!  

    Here is company who sells this stuff:


    In the first article I posted, the paragraph above the Conclusion.....

    "Academical and Authoritative Warnings on the Potential Harmful Functions of mTg Usage by the Processed Food Industries

    The mTg is not labeled, since it is considered as a processing aid, thus escaping the definition of a food additive. Due to the potential detrimental public health aspects, several scientists and organizations issue warnings, trying to increase the awareness of the regulatory authorities, academical communities and the general public on the subject. Following are some citations: “The usage of transglutaminase as a food additive is permitted in some countries. However, its utilization has to be declared to ensure transparency for consumers” Kaufmann et al. (57), “Therefore mTg can enhance the immunogenicity of gluten and should not be used in food products intended for consumption by celiac disease patients” Dekking et al. (66). Not surprisingly, the worries and warnings on mTg nutritional industrial usage safety appear in numerous publications (26, 38, 57, 62, 66–68). More so, at least, in Switzerland and Germany, public warning were issued concerning mTg food safety, recommending labeling of the enzyme (69)1. The warnings mentioned the risk of mTg consumption by celiac disease patients, “Suitable labeling of foods produced using mTg would enable these patients to avoid the uncertainties that the scientific community has yet to clarify”1."


    So, they get away with not labeling mTg on ingredients labels because mTg is used in "processing" and not as an ingredient.


  15. "As soon as I add processed food (chips, crackers, fruit snacks) back into her diet, her symptoms (though subtle) return. The longest I tried a whole food based diet is probably a 3-4 weeks, which has not been long enough to positively impact her blood-work. "

    Go back to the whole foods diet.  Processed foods can contain a food additive called microbial transglutaminase or "meat glue" and is used to enhance texture and flavors.  It's used in formed meats like hot dogs, chicken nuggets, yogurt, ice cream, and gluten free bread-like products.  Microbial transglutaminase is produced by bacteria and will trigger tissue transglutaminase to be produced in the human body, causing raised tTg levels on blood tests.  

    Here's an article that explains it better:



    Hope this helps!


  16. 17 hours ago, SabineHP said:

    While traveling out of state,  I managed (once again) to get glutenized (is this a word?)

    Back home and in crippling migraine pain, I took migraine pills in hopes for relief. It turned out that Advil Migraine pills contain gluten and needless to say, I am now in worse shape. The joint and body pains, headache, neck, shoulders, back, it all hurts. Painful bloating (picture 9 months pregnant), brain fog to a point that my head feels like it's under water. I can't follow the simplest conversation A. due to hearing impairment from gluten (anyone else familiar with this?) and B. my level of comprehension has drastically declined (anyone else experience this?)

    I was diagnosed almost three years ago and I am so disgusted with myself for continuing to get accidental gluten exposure!!! I need advice, a system, something... I don't know how to get this under control😫 

    Also, I am seeing and reading more studies that are suspecting correlation between Celiac and dementia. This is scary to me, as it runs in family on maternal side and the fact that I went undiagnosed for nearly 30 years. 

    What do YOU do to manage Celiac, control it and keep exposures at bay?


    I have suffered from the brain fog and hearing loss when glutenized.  It is very scary to have one's cognitive powers decline into dementia.  I found mine was related to Vitamin B12 deficiency.  

    Celiac Disease can impair absorption of vitamin B12.  If one is already low in B12 and gets glutenized, the problem can be exasperated.  You may want to check with your doctor to have your B12 levels checked.  

    Here's an article that explains more about B12 deficiency and dementia.


    Hope this helps!

  17. Healthysquirrel, 

    Please have your doctor check your Vitamin D level!  

    Vitamin D deficiency is related to vertigo


    Vitamin D can help with high IgE


    Low vitamin D and low ferritin are tied


    Dry eye problems including blepharitis can be helped with vitamin d and vitamin a


    And chronic pain can be helped by vitamin D


    Vitamin D is needed for repair of plantar fasciitis

    I used to suffer from all these things, too.  I was found to have terribly deficient vitamin D level.  I've supplemented and keep my vitamin D level above 70 nmol/l.  Vitamin D is a fat based vitamin which may not be absorbed properly by people with Celiac Disease.   

    Hope this helps!



    On 3/16/2019 at 12:43 PM, Alaskaguy said:

    Hello All,

    As you may have read in my other recent threads, as of a couple of days ago I have decided to try the Fasano Gluten Contamination Elimination Diet, for at least three or four months, to both try to resolve my recurring dermatitis herpetiformis (DH), and to help me determine which (if any) conventionally-considered gluten-free foods might have been causing me these ongoing problems (suspects are purity protocol oats, teff, corn, eggs, and/or buckwheat).

    Given that I am doing this for DH, I apparently also have to avoid any high-iodine foods, so I will be eliminating iodized salt, all dairy products (both the iodized salt and the dairy products I actually already gave up seven months ago), all seafoods, and most eggs (I might use one or two in a meatloaf, that'd be about it).

    The guidelines of the diet state that any fresh and whole fruit and vegetable, and all fresh and unprocessed meats, should be OK. 

    My question for anyone is this: are there any OTHER potential pitfalls or problem foods that I should avoid on this Fasano Diet, keeping DH in mind?

    For example, the guidelines seem to allow potatoes and tomatoes, although I have read that some people have problems with nightshade family vegetables --- potatoes, peppers, tomatoes, eggplant.  Elsewhere, I have read indications that foods high in oxalates might be a problem for others --- chocolate (I was going to avoid anyway), spinach, rhubarb, etc.  And in yet another reference, I have read that for some people, vegetables from the carrot/parsley family ---- carrots, celery, parsnips --- can be problematic.

    Obviously, I cannot avoid ALL of these potentially problematic foods, or I'd be left with just water!  So I'm just wondering if anyone has any good advice for what I should watch for on this diet, again taking into account that I am doing it to resolve DH and not any gastrointestinal symptoms (which all cleared up long ago for me).  Thanks as always.


    On 3/20/2019 at 12:13 PM, Alaskaguy said:

    Oh yes, that does sound good!  I've always been fine with potatoes, but just haven't eaten them all that frequently, and usually in a recipe that specifically needed or called for them.  But for the next few months, at least, I think I'll be using them much more.

    Not that I want to try to subsist mostly on carbs here, but I am also going to be using more sweet pototoes, and also trying to incorporate both plantains (cooking bananas) and yuca (cassava root) into my diet as well.  Both of the latter are readily available at some ethnic food stores in Anchorage, as that city has large Hispanic, Samoan and Phillipino communities  (I know, who would have thought?).  Fresh Taro root is also available, but for some reason taro is MUCH more expensive than those others, like $5.00/lb.  Sorry, but I'm not paying meat prices for a root vegetable!

    I've already noticed, on this whole-grain, fish, dairy and legume-free Fasano Diet, that I am going to need to watch and supplement both my calcium/magnesium/Vitamin D intakes, as well as fiber.  I know that the Fasano Diet does allow dried beans, but I am very wary of them right now, somewhat for their moderate iodine content, but mainly because of  the potential for cross-contamination with gluten grains and/or dust.  Maybe I'll reconsider that down the road, as they would be good for adding both non-animal protein (which my version of the Fasano Diet mostly now lacks), as well as for adding fiber to the diet, as Alaska in the winter is not exactly a mecca for fresh green vegetables, particularly leafy vegetables, which in the stores are both expensive and often rather old and sad.


    Sorry to interrupt, but I wanted to put in my two cents.

    I prefer the Autoimmune Protocol diet because it helps heal the gut so quickly.  It's a bit more strict than the Fasano diet but the results are striking.


    People with Celiac and DH have a problem with leaky guts.  The AIP diet helps heal this problem.


    Nightshade vegetables are not allowed on the AIP diet because they contain glycoalkyloids that contribute to permeable guts.



    Mast Cell Activation Syndrome is also involved in celiac disease and DH.  Mast Cells are triggered into releasing histamine when stuff gets through that leaky gut. That histamine is what aggravates DH.



    A Low Histamine Diet is also helpful because it helps the mast cells not to trigger.


    So, the Autoimmune Protocol diet crossed with the Low Histamine Diet may sound really strict, but you can see results within weeks and you won't need to stay on it forever.  Once your symptoms disappear, you can start adding more options into your diet.  

    Make sure your vitamin levels are not deficient. (Get them checked before starting supplementation to get correct levels.)  People with celiac disease and DH are often low in Vitamin D and B12.  I'm a big fan of having vitamin D level above the usually accepted level of 30 ng/ml.  70ng/ml or above is better and allows vitamin D to work as it should.  And nicotinamide (vitamin B3) helps mast cells not to release histamine.  The nine B vitamins all work together, so discuss with your doctor the benefits of taking a good B Complex supplement.

    Hope this helps! 

    P.S. Himalayan salt may have less iodine than sea salt.  Sea salt may contain plastic waste particles because of pollution in our oceans. 






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