Newly diagnosed with DH

[knitty kitty]

Here's links to the kind of Benfotiamine I take... 250mg

https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine

Or...100 mg

https://www.lifeextension.com/vitamins-supplements/item00920/benfotiamine-with-thiamine

 

Vitamin D 3 in cold pressed olive oil... you want your Vitamin D in the 80 nMols/L or better range.  

https://www.naturewise.com/products/vitamin-d3-5000-iu-supplements

 

And ... magnesium...

https://drbvitamins.com/products/doctor-s-best-high-absorption-magnesium-lysinate-glycinate-100-chelated-52-5-mg-120-veggie-caps-102678

 

And B Complex...

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gclid=EAIaIQobChMIxZ66wPX__gIVZnJMCh0MvA6HEAQYAyABEgK-x_D_BwE

 

With Magnesium, if you get really loose stools, you can cut back on the amount.  If you're low in magnesium, you should take a little more than the recommended daily amount to replenish depleted stores in your body.  I take Magnesium at the end of meals which helps if you have acid reflux or Gerd.

 

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

With Benfotiamine, try to take a minimum of 300-500mg/day.  I take more because I'm diabetic (diabetes causes one to lose more thiamine through urine than others).  I take 250 mg with two meals and 100 mg in the afternoon.  If I take it late in the day, it can keep me awake.  Experiment with dosages until you find what's right for you.  "The Thiamine Paradox" may occur.  As the body gets accustomed to having sufficient thiamine, sometimes you might feel yucky like the flu, but it's just the body adjusting and getting rid of the cobwebs, like a car that hasn't been cranked for a while might backfire.  Decrease the amount a bit for a day or so, then increase again.  Your body will let you know what amount helps you feel best.

Flaxseed oil to ensure you get those Omega Three fats that our brains like...

https://www.naturewise.com/products/organic-flaxseed-oil-omega-3-supplement

 

Be careful with brewers yeast and nutritional yeast.  Some people (like me) react to it as though it were gluten because it resembles gluten (molecular mimicry).

Best wishes! 

Keep us posted on your progress!

[Rogol72]

  On 6/12/2023 at 8:43 PM, Wheatwacked said:

The effective blood level of vitamin D is around 80 ng/ml which is equivalent to 200 nmol/L depending on the lab.  Because of a manufacturing error, the infant formula had 1000 times the maximum vitamin D for infants, in the UK in 1950s there was an epidemic of infant deaths attributed to calcification which The Royal College of Physicians and the British Pediatric Association concluded that the most likely causes were the unregulated overfortification of milk with vitamin D and/or excessive intakes of vitamin D from various foods. Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion. As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D. This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk. Only the United States, Canada, and a few European countries continued to permit milk to be fortified with vitamin D. Vitamin D Is Not as Toxic as Was Once Thought

So the RDA was set at only enough to prevent rickets.  But what about all the rest of the bones and teeth?  Ever wonder why osteoporosis is found in just about every disease, including just growing old.  Or why the UK is infamous for rotting teeth?  They get virtually no vitamin D from sunlight in winter, and when there is enough sunlight in summer SPF 100 and cover up because of fear of skin cancer. There is a depression called Seasonal Effective Disorder caused by lack of sunlight and resultant low vitamin D. 42% US adults, up to 70% Canadians and 51% Irish have vitamin D insuffieciency.

 "Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL." https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

I've been taking 10,000 IU a day since 2014, getting tested for the last 3 years 4 times a year and have never had higher than 86 ng/ml.  It ended a very long depression after only 3 days at that dose. It also modulates the overactive autoimmune response.

 

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I have found that my DH will flare more easily when my Vitamin D level drops. I need to keep it in the 150nmol/dl range. I found some great explanations by Dr. Eduardo Beltran on youtube regarding Vitamin D therapy and anti inflammatory diet in treating autoimmune disease. Some very interesting lectures with case studies. Not medical advice but worth educating yourself.

[PME]

  On 6/12/2023 at 8:43 PM, knitty kitty said:

Here's links to the kind of Benfotiamine I take... 250mg

https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine

Or...100 mg

https://www.lifeextension.com/vitamins-supplements/item00920/benfotiamine-with-thiamine

 

Vitamin D 3 in cold pressed olive oil... you want your Vitamin D in the 80 nMols/L or better range.  

https://www.naturewise.com/products/vitamin-d3-5000-iu-supplements

 

And ... magnesium...

https://drbvitamins.com/products/doctor-s-best-high-absorption-magnesium-lysinate-glycinate-100-chelated-52-5-mg-120-veggie-caps-102678

 

And B Complex...

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gclid=EAIaIQobChMIxZ66wPX__gIVZnJMCh0MvA6HEAQYAyABEgK-x_D_BwE

 

With Magnesium, if you get really loose stools, you can cut back on the amount.  If you're low in magnesium, you should take a little more than the recommended daily amount to replenish depleted stores in your body.  I take Magnesium at the end of meals which helps if you have acid reflux or Gerd.

 

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

With Benfotiamine, try to take a minimum of 300-500mg/day.  I take more because I'm diabetic (diabetes causes one to lose more thiamine through urine than others).  I take 250 mg with two meals and 100 mg in the afternoon.  If I take it late in the day, it can keep me awake.  Experiment with dosages until you find what's right for you.  "The Thiamine Paradox" may occur.  As the body gets accustomed to having sufficient thiamine, sometimes you might feel yucky like the flu, but it's just the body adjusting and getting rid of the cobwebs, like a car that hasn't been cranked for a while might backfire.  Decrease the amount a bit for a day or so, then increase again.  Your body will let you know what amount helps you feel best.

Flaxseed oil to ensure you get those Omega Three fats that our brains like...

https://www.naturewise.com/products/organic-flaxseed-oil-omega-3-supplement

 

Be careful with brewers yeast and nutritional yeast.  Some people (like me) react to it as though it were gluten because it resembles gluten (molecular mimicry).

Best wishes! 

Keep us posted on your progress!

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Thank you for all this info, Knitty Kitty! One last question…HOW did you find a doctor who actually was willing to go the nutrient Route and guide you to these recommendations? Did you have to seek a functional medicine practitioner? Or did you find an open-minded gastroenterologist? I find Conventional medicine always seems to dismiss these kinds of treatments out of hand…

[knitty kitty]

@PME,

Yes, definitely, most conventional medical doctors don't have a clue about nutritional factors in diseases.  

Like most of our readers, I had become very ill with undiagnosed Celiac Disease and was searching for answers.  I was blessed with the opportunity to attend university.  Being a very curious kitty, I explored studies in a wide variety of subjects as diverse as Nutrition and Weaving (rugs, not baskets 🐱), and eventually earned a degree in Microbiology. 

As I became increasingly ill, and the doctors became increasingly mystified, they wrote me off as "depressed" and sent me away home with my "made-up" symptoms.  By the grace of the powers that be, I had moments of clarity and the epiphany that I had symptoms of nutritional deficiencies.  Comprehending how microscopic cells utilized these nutrients, I began researching.  Information by Dr. Abraham Hoffer, and more information by Dr. Derrick Lonsdale and Dr. Chandler Marrs changed my life.  My health steadily improved.   

I stumbled upon the forum here.  I saw people struggling with the same symptoms and the same dismissive doctors as I had done.  I started sharing what I had learned, how I was regaining my health, how simple and neglected the answers were.    

I'm extremely grateful that @Scott Adams has allowed me to share here.  If this knowledge can relieve the suffering of others, I count my tumultuous journey, with its stigma and losses, as being well worthwhile.  

You can read my blog here, which contains posts of my experiences and relevant research articles.

Thanks for asking.  

[Courtney09]

Best advice is to stay on a gluten free diet and the rash will disappear.  My DH flares when I accidentally eat something that is cross contaminated and when my skin is exposed to the sunlight.  Iodine does not seem to bother me.

[Wheatwacked]

  On 6/13/2023 at 9:46 AM, Rogol72 said:

I need to keep it in the 150nmol/dl range.

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If I stop taking 10,000 IIU (250 mcg) for any length of time my blood level drops quickly. 7 ng/ml (17.5 nmol?/)in only three weeks. It took two years for me to get from 47 (118 nmol/L) to 80 (200 nmol/L).  The first symptom to reappear is I get annoyed when the phone rings.

My previous doctor "fired me" because my blood pressure went up on amlodipine and lisinopril so he couldn't trust me to be compliant, though I was.  By the way he is short and fat, a fine example.  New one puts up with me because on Clonidine for BP (and ADD) and diet I am improving.

Just these last weeks I cut down a 20 foot palm and 2 brazillian pepper trees, fixed and painted my roof gables and revived a 1putting off 996 rear enginge rider mower.  Projects that I've been feeling too poorly to even attempt before.  There is life after Celiac.  It's all about the 20 or so essential vitamins and minerals that are not being absorbed or not eaten in enough quantity. These are the tools out body needs.  100% RDA is the minimum needed And lowering your intake of foods packed with omega 6 fatty acids.

Vitamin C ranges from 100% DV 90 mg to Safe Upper limit of 2000 mg.  Dr Pauling took 9000 mg a day until he died in his '90s.

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  • Recommended Dietary Allowance (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals.
  • Adequate Intake (AI): Intake at this level is assumed to ensure nutritional adequacy; established when evidence is insufficient to develop an RDA.
  • Estimated Average Requirement (EAR): Average daily level of intake estimated to meet the requirements of 50% of healthy individuals; usually used to assess the nutrient intakes of groups of people and to plan nutritionally adequate diets for them; can also be used to assess the nutrient intakes of individuals.
  • Tolerable Upper Intake Level (UL): Maximum daily intake unlikely to cause adverse health effects.
  • https://ods.od.nih.gov/factsheets/VitaminC-HealthProfessional/
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