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Open Letter Part 1 to Fellow GI Sufferers etc. Like IBS, UC, and other GI diseases like Infant Heartburn (GERD) that grows into (in time) to IBS, UC, Chron's and NCGS as a teenager or Celiac disease in time as an adult - Look beyond to the Parent disease

Open Letter to the many GI sufferers etc Part 1’ Like IBS, UC and other GI diseases like Infant Heartburn (GERD) that

grows into (in time) to IBS, UC, Chron’s and NCGS as a teenager or Celiac disease in time as an adult— Look Beyond these symptom’s

to the parent disease –- Pellagra.

 

*** a couple of notes to begin with.  You can see I meant this to be one post -- but as usual it got too long to read at one seating. 

2) because I might be having a medical procedure soon (I am posting part 1) in case I don't get to part 2 until latter.

****This is only my experience (and my research) that has lead me to my conclusions. They are NOT endorsed by celiac.com nor should this blog post

be considered and endorsement of these ideas by celiac.com.  Thank you in advance for letting me share my opinions and conclusions.

(God being my help) may this posterboy blog post benefit those who take the time to read them/it.  What follows is something that has been on my heart to share

for a while.  It is my story only. . . yours may be different but I have found if it helps you  . . . it will  help others too!  And as they say "Without Further Ado"

Here are my thoughts about my original celiac diagnosis and what/why I think was also low in stomach acid but a proper diagnosis was not

made because not enough/proper test's were done to rule it out as an official "differential diagnosis".  If it is happening to me. . . it is happening to others!

 

Below begins the body of blog post of "An Open Letter Part 1 to Fellow GI Sufferers"

 

Because as I am fond of saying “To Educate is to (Truly) Free”

God being my help 2 Timothy 2: 7 as always“Consider what I say; and the Lord give thee understanding in all things” this included

and all the knowledge I have absorbed in 10 years of researching this topic for myself (God being my help) how I discovered this forgotten

medical fact after 4 years  of research (see below) and have been helping people for over 6 years (those who will listen) and who better

to learn from than someone who has done it himself and not only for himself but 100’s of his friend too!

See this celiac.com article where much of this information is summarized in something called a white paper about the

“When Myth becomes Medical Fact People suffer unnecessarily; The Case of Mistaken Identity: How Pellagra now thought

to be rare became known as Celiac Disease — A White Paper linked at the end of the article.

Referenced here if you have not had a chance to read the article since it was featured on celiac.com

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

“A white paper is an authoritative report or guide that informs readers concisely about a complex issue and presents the issuing body’s

philosophy on the matter. It is meant to help readers understand a (complex) issue, solve a problem, or make a decision.”


 By reading this blog post I hope to convenience you that your experience can be the same as mine.

A differential diagnosis is one of  the best standard of medicine rarely practiced today and how specialists decide between competing

diseases like UC or Chron’s or IBS or Celiac Disease and if I am right Co-Morbid Pellagra now forgotten for 75+ years since the “War on Pellagra”

is now over according to medical professionals’ but sadly the battle rages on for at least for the 60 Million American’s alone who get

(Infant) Heartburn  once a month not counting the heartburn that grows up to be IBS, UC, Chron’s or Celiac disease.

See link below from Creighton University that mention’s this medical fact.  Pellagra is not a disease of TODAY.  Celiac is the disease

of Choice today!  But in 58% of those diagnosed with Celiac TODAY 58% are Co-Morbid with Pellagra as I was and most ALL my friends

because they ALL get better when they take the Niacinamide.

I now it works. I have seen it work for too many people. And I believe it can/could work for you too!  See end of this blog posts

and my doctor does too.  He now uses this method in his practice with great success!  And it can work for you too! (I believe)  

Lord willing if you do as I suggest and take Niacinamide 2or 3/day for 6 months (see below).

I now describe myself as the Celiac and Pellgara Posterboy as a “Former Celiac Sufferer” who blogs about digestive disorders

that Co-Morbid Pellagra causes often presenting as other GI diseases like IBS, UC, Chons, NCGS and GERD”

Note **** This IS NOT medical advice only my personal experience of how through deep research (and the Grace of God) after 4 years of study

I found what the doctors have always known but overlook in treating the many symptoms of Celiac Disease. The true cause as recorded

in medical textbooks the world over the cause of 90+ percent of Digestive disorders (I believe) is because of one Vitamin Deficiency/Dependency.

This blog post and (Posterboy blog) is about that ONE nutrient/vitamin/mineral that is lacking and the causative agent for most Digestive Disorder(s)

presenting as the Iceberg Disease(s) of Gluten Insensitivity aka Celiac Disease in its most advanced stage (with enough time).

And I hope at least ONE other Celiac besides me will believe also and be helped from this post.

As proven/researched by Prousky almost 17 years ago that low Niacin levels lead too low stomach acid.  It is time this information was

known by a wider audience – the Celiac audience.

http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

see also by posterboy blog about this topic. It is a devastating delay.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

When Celiac Disease points it head (rears it head) out of the water 20+ symptoms (known as associated diseases) have already presented

themselves in various malady’s. When only 3 (the 3 Ds) symptoms  where need 75 years ago to diagnose the condition once considered

cured but is rampant in today’s society because we are more STRESSED than ever.

Digestive disorders, dermatitis syndromes, and dementia disorders – known then as Pellagra 75+ years ago but now is known mostly

as various GI diseases depending on how long or low you are in Pellagra Preventive Factor as it was called in the day.

Here is the best research article I have ever read on the topic.

https://www.hindawi.com/journals/cggr/2012/302875/

They called it “Lessons from Pellagra” but the problem is we haven’t learned them.

What does this look like in human beings?

If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up.

(see hindawi link about for the exhaustive complete diagnostic picture of all the ways Pellagra might present itself. 

It is very exhaustive and informative) We will not count the 4th D of death if you are reading this blog.

Explained here well http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

To quote Dr. Heaney a Past Professor of Medicine at Creighton University “2014 marks the 100th anniversary of the war on Pellagra,

a war that lasted nearly 25 of those years before victory could finally be declared. You have not heard of the war on Pellagra?

The celebration is not on your calendar? You’re not alone.”

I have been in remission now for 5+ years after suffering 30+ years. Remission is possible! From Pellagra!

Epigenetics has been discovered as the cause for Pellagra being diagnosed as Non-Celiac Gluten Sensitivity (NCGS)

or Celiac disease when Heartburn/Gerd then IBS etc. and NCGS in time grows up to become your Celiac Diagnosis.

Learn how Lifestyle (STRESS) is a risk factor for Celiac Disease.

see this article entitled ‘Lifestyle is a Risk Factor for Celiac Disease”.

https://www.sciencedaily.com/releases/2015/11/151102100302.htm

Quoting an article that appears on Celiac.com

http://www.celiac.com/articles/24166/1/Could-Changing-Gut-Bacteria-Prevent-Celiac-Disease/Page1.html


“According to Dr. Decker Butzner, a Calgary-based pediatric gastroenterologist, there are another triggering factor which we’ve

never understood…[t]here is an environmental trigger.“ i,e.  STRESS

Have you been stressed of late?  Stress is said to kill you well it also maims you.  NCGS is that maiming of people who have eaten

wheat without resetting their stress clock.

Find out how you can reset your stress clock (my words).

Also see this very well article on pregnancy.

https://www.verywell.com/can-pregnancy-trigger-celiac-disease-562302

where they say quoting

First Comes Baby, Then Comes Symptoms

"Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study

published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis

following their first pregnancy."

WE also know stress is a trigger for Celiac disease.

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

Join his friends who no longer suffer from heartburn, gas, constipation, diarrhea, IBS , UC, Chron’s and Ulcer’s etc. of NCGS/GERD.

You too can be in remission in as little as six months if you follow this ground breaking discovery hidden in medical text books

now brought to light about how to manage digestive stress from Pellagra.

When he (God being his help) rediscovered Pellagra as a disease of TODAY now often Diagnosed as Celiac disease instead of one conquered 75+ years

ago as the doctors teach.

A brief history: over 4+ years ago after being able to eat gluten again after being Gluten Free for 4 years and suffering 30+ years

before I received a diagnosis as Celiac disease I begun to realize I had low stomach acid instead.

So now I speak about it freely and blog about it regularly with only modest success and why I participate on celiac.com to Educate

those still suffering unnecessarily to help explain how Pellagra is often confused for many GI issues up to and including Celiac Disease in time

– usually 10 years or more.

*** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any

changes to your diet or your prescribed medical regimen.

After 4 years of research and 5+ years of GI symptom remission I am convinced more than ever that 90+ percent of the most common

GERD/Gluten issues are related to sub-clinical presentation of Pellagra unrecognized in a clinical setting.

So much so that I tell those who will listen.

As I am fond of saying  Learn from my mistakes.

Honey is like knowledge sticky and sweet when good news comes.

“This posterboy blog is just that storehouse of knowledge learned from life experiences.  The blog’s author has been stung so you don’t have to be.

No man is so dumb as the man who won’t learn from other people’s mistakes.

Take as much honey (knowledge) as you can from my mistakes so bad health will not sting your quality of life.

Feel free to ladle and dollop your life with the sweet stickiness of the truth found here.  For honey like truth stick to you once

in contact and you can’t just wash it away.”

This posterboy blog is about my struggle to reach people yet only about 10 percent believe and are helped when they read these things

though 95+ percent are helped when they treat their Pellagra symptoms with Niacinamide taking it 3 times/daily for 4 to 6 months.

Education (this blog) is about raising the conversion rate so people don’t have to suffer any longer.

I will go on telling those who will listen. How can they hear if no one tells’ them?

Romans 10:14 (I speak as a man)

Tell others about this blog post if you decide to try Niacinamide for yourself and see If it helps you.

It will help others/them too most likely!  At least it helps most of my friends that will/have believe/believed and tried it for themselves.

Take the Niacinamide and get/be better in 6 months (begin BURPING) (w/o bloating I might add) for the first time in years IF EVER from Pellagra undiagnosed.

No one seems to believe (or at least not many) becoming deficient in (a) vitamin or vitamin(s)/minerals will/can make us sick.

What a novel concept. You would not think I would need to write a blog post to tell people that!

Maybe it is not true in your case. But you won’t know if you don’t try it.

All I know it has been true in my life! and Hundreds’ and hundreds’ of my friends.

Thanks bee to God who helped me to see these things.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we

ourselves are comforted of God.”

Tell someone (share) is all I ask  tell others is all I ask –when you are BURPING for the first time in years or (EVER) – tell a friend

about this blog post “is all I ask” but don’t let the chain break with you. There a lot of fellow sufferers’ who still need help.

I always say the number one mistake people make with Niacinamide is not taking it long enough (3 to 6 months 3/day in divided doses)

but now I am going to amend that.  The number one mistake people make with GI problems is the mistake of not taking the Vitamin

in the first place.  The 2nd biggest mistake is they don’t take it long enough!

If you want to try and educate your doctor/friends and think he/she/they will listen tell them how Niacinamide helped you

or some fellow who says it helped him but I was too scared to try it.   Maybe they will listen to your better than they will/do me.


*** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making

any changes to your medical regimen.

But mine has taken Niacinamide and his digestive/GI problems are in remission.  And his difficult to help/treat patients who

don’t respond to “popular” medicine’s like Linzess etc. are better for IBS-C.  And have stopped the medicine because their

symptoms are in remission.

He has even given Niacinamide to his sister to help her Chrons symptoms’ though research bears this out people don’t

(Heck doctors don’t even) well understand the connection.

See this article entitled “Pellagra as the presenting manifestation of Crohn's disease.”

https://www.ncbi.nlm.nih.gov/pubmed/7060914

(***Note: this is an update.  I saw my doctor recently and he admitted as such. But I could see it in his eyes (and hear it in his voice)

because it did not fit his paradigm (world view of Vitamins/medicine) he spoke only of her Chron’s being in remission.  It never occurs too

him that her co-morbid Pellagra is better and it (Pellagra) could be being misdiagnosed as Chron’s instead (and won’t/wouldn’t) even

if I brought him the research.) 

But Vitamin(s)/Minerals especially Niacinamide and Magnesium don’t get the attention they deserve because Vitamins’ don’t have a

USP today in this genetic age we now live in.

They (drugs) are popular because they have drug companies who have the money to advertise them.

I do not.  I do not have a Unique Selling Position (USP).

Nor do Vitamins these days!

And I say too you too.  Put your Pellagra symptoms into remission too!  (Your Celiac diagnosis can remain your primary disease diagnosis) as the
doctor's wonder why your (Pellagra misdiagnosed) symptom's are in remission.

No body profits if you get better in 6 months or a year and you no longer need the Vitamin!

We don’t’ get sick from being low in “a Medicine” to quote the frustrated pharmacist but a Vitamin.

I usually end up giving Niacinamide away and often they (friends) give it back instead much like a Johnny Appleseed character.  

Such is the fear of Vitamins these days.

See also the posterboy blog post on celiac.com why this is so. . . entitled it is time for a Vitamin Reformation; Why all the hate for Vitamin’s these days.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

I am just trying to help those who still haven’t heard yet Pellagra is being diagnosed as Celiac disease today and your Pellagra

undiagnosed/mistakeningly diagnosed as Celiac can be in remission from a Vitamin deficiency.

If we follow most normal paths’ for adoption it will take another 20 years (a generation) for the medical community to accept

Pellagra as the proper diagnosis.

****Note: I am only reporting what medical journals have concluded. It is just not well understood today one disease is being diagnosed

as the other because it can take a generation for this knowledge to filter down to the clinical level.

How do we know this??? Or can we? The International Journal of Celiac disease notes this association/connection.

http://pubs.sciepub.com/ijcd/3/1/6/

Not only did/does the Journal of Celiac cite common symptom’s 58 percent of the time in Celiac and Pellagra but they also cite

that Pellagra has been described in a Celiac Disease diagnosis.

Now if the symptoms’ are similar it is easy to confuse one disease for the other and if not well understood they might be considered

“exceptional” or, i.e., not well understood and discounted as the cause.

I would argue that it should be the other way around if the majority (58 Percent) of the time Pellagra symptoms are described in a Celiac

diagnosis it stands to reason that medical science is identifying the wrong disease.

The math doesn’t add up. 58% is the Majority  (primary/parent) disease and as such should be treated first.

Pellagra has 3 faces that often confuse doctors today but 75 years ago they were able to diagnose this disease with only 3 symptoms

the D’s of Pellagra. Dementia’s, Digestive Disorder and Dermatitis issues. Are You starting to see a pattern here?

If it starts with a D then Pellagra a Niacinamide deficiency is involved. Quoting the Celiac Posterboy

“These D’s a Celiac patient encounters are not the sign of several different diseases but one parent disease Pellagra with many children.”

I could go on and on and on . .. but there is no need for that. I need to stop for now.

Either you will believe and be helped or go on suffering needlessly if indeed Pellagra is the parent disease and GERD, IBS, UC, Chrons, NCGS

and Celiac disease it‘s unruly children.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith

we ourselves are comforted of God.”

****Again this is not medical advice but it is too easy, simple and cheap not to try and see if it works for you . . . I have found it works for others.

Remember Occams’ Razor. . . The Simple answer is a Vitamin. But convincing people of that fact has not been simple or easy.

I can’t convince you either way. You will have to decide for yourself . . . I only know it help’s those (of my friends) who have tried it for themselves.

Praise bee to God and I want other’s still suffering from Pellagra disease if the research is to be believed being diagnosed as Celiac

disease to be the next to be helped Praise bee to God!

But I know now you will have to discover it for yourself. I stand as your witness. I tried!

Posterboy by the Grace of God,

 

2 Timothy 2:7  As always, “Consider what I say; and the Lord give thee understanding in all things” this included.

 

**** I will update this blog post in a month to 6 weeks with Part 2 about how you can test these things for yourself (if I am not recovering (God forbid) from

a medical procedure) depending on how and if my CT scan shows any blockage that might require a stent to be implanted like my brother had to have done. . . 

Otherwise I wish you all who read this posterboy blog post God speed!  And good GI health soon! Praise bee to God if you are encouraged enough from

this post to try the Niacinamide 3/day for 6 months for yourself.

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    It’s worth noting that for all his accomplishments, Rogers is neither a doctor, nor a PhD. Rogers' LinkdIn page lists his education as: Bsc (Hons), Microbiology, University of Wales, Aberystwyth. A Bachelor of Science degree may not necessarily make an expert in this subject, yet he is presented as one.
    Rogers also seems to have a potential conflict of interest that was omitted in Thompson’s press release. Directly from Rogers’ LinkdIn site:
    “Romer Labs®, Inc. developed an immunochromatographic lateral flow assay for the qualitative detection of gluten in raw ingredients, processed foods, finished food products, and environmental surfaces, using the G12 antibody developed by Belén Morón. The G12 antibody targets a 33-mer peptide which is resistant to enzymatic digestion and heat denaturation, as well as being the fragment of the gliadin protein to which celiac disease sufferers react, making it a reliable analytical marker.” The company Rogers works for, Romer Labs, makes its own gluten testing kits. It seems a bit disingenuous for Gluten Free Watchdog to use a spokesperson from a potentially competing company to try to counteract a peer-reviewed scientific publication for a device which is made by a potential competitor.
    Nima’s Scientific Advisory Board includes some of the most highly respected celiac disease researchers and scientists in the world. They include: Peter HR Green, MD Phyllis and Ivan Seidenberg Professor of Medicine. Director, Celiac Disease Center at Columbia University; Jody Puglisi, PhD Stanford University Professor of Structural Biology; Lucille Beseler, MS, RDN, LDN, CDE, FAND Family Nutrition Center of South Florida; Benjamin Lebwohl, MD, MS Director of Clinical Research Celiac Disease Center at Columbia University; John Garber, MD Gastroenterology, Mass General; and Thanai Pongdee, MD Consultant, Division of Allergic Diseases, Mayo Clinic.
    Nima says that Gluten Free Watchdog’s view of their recently published validation is incomplete and misleading. Nima wrote:
    “All the studies show Nima is highly sensitive across a range of both low and high levels of gluten." "The Nima third party data accurately reported gluten found at 20 ppm and above between 93.3% for food as prepared (a food item that is spiked with an intended quantity of gluten) and 97.2% for food as quantified by an ELISA lab kit (used to determine the exact ppm of gluten in the food)." "The Nima peer reviewed study published in the Food Chemistry Journal reported gluten found at 20 ppm and above at 96.9% accuracy." The statement that:
    “'Nima will fail to detect gluten at 20 ppm 20% of the time' is almost entirely driven by 1 specific food out of 13 tested. That sample, when quantified, was actually below 20 ppm." "In real life, people get glutened at many different ppm levels, not just 20 ppm. Nima has been shown to detect gluten at levels below, at and above 20 ppm across a variety of foods in a number of studies.” Reading the peer reviewed data provided by Nima, and reading Gluten Free Watchdog’s complaints, it becomes clear that Gluten Free Watchdog’s complaints sound serious and authoritative, but ring a bit hollow. 
    Consider the Following Analogy
    Imagine a gluten-sniffing dog that performed as well as Nima in scientific trials; same performance, same exact data. 
    You can give this dog a sniff, or a small bite of food, and he can signal you if the food’s got gluten in it with 97% accuracy at 20ppm or below. Nearly 100% accuracy at 40ppm or above (as stated by Gluten Free Watchdog).
    People would think that the dog was not only cute and fluffy, but wonderfully helpful and everyone would love it, and everyone with celiac disease would want one. And it would be a great big gushing warm and fuzzy feel-good story. Pretty much no one would be arguing that the dog was potentially dangerous, or somehow unfit for people with celiac disease. Such dogs would also be far more expensive to own and maintain than the Nima device. Apparently such dogs can cost upwards of $16,000, not including the cost of food, vet bills, etc.
    So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results.
    Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon?
    Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser?
    But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm.
    Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago.
    Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial?
    The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease.  
    Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. 
    Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com

    Edward R. Arnold
    To HAIT and Back: The Musings of a Thyroid Patient on the Vagaries of Medical Diagnosis and Treatment in America
    Celiac.com 09/14/2018 - If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take 14 years to solve.
    It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in a completely avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability.
    From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving.
    By the time 1991 rolled around, something was to be added to these periodic bouts of intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of “hollowness”, as though I really weren’t part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final “dive”: I simply stopped sleeping more than about two hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn’t think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for 14 years.
    The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about six months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing “one pill makes you larger, and one pill makes you small”. I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state.
    In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a two-foot leash.
    Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at doses as low as 10mg, once daily in the evening.
    In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the 12 years since. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e., TSH greater than 5.5). The new AACE guidelines would mean that further testing and evaluation should be done.
    Until the fall of 1997, I continued treatment with doxepin and intermittent valium, adding the practice of meditation to help calm myself. At that time, I came back to my primary-care physician with the symptom of profound exhaustion on top of the symptoms of insomnia, anxiety, and depression I had suffered for years. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with (as would be expected of most GPs) T4-only replacement.
    I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep.
    However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery—I still suffered from anxiety, which the medication seemed to be increasing.
    In the meantime, hair loss became an issue. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody, including my GP, reminded me that hair loss is a prime symptom of hypothyroidism; and, like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to be reversed in response to the treatment of the thyroid problem.
    In about 1998, I began experimentation with amino acids which was to last for almost seven years. I found that use of tryptopan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient.
    By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom—my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing.
    It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing mental issues, prompted me to seek other treatment.
    In September 2000, I began seeing a prominent “metabolic” doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work—I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results—my TSH was 4.7, and my FT3 was below the bottom of the normal range.
    By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e., my body was attacking its own thyroid gland. This condition is officially known as Hashimoto’s Autoimmune Thyroiditis (HAIT—as I now know, HAIT is the leading cause of hypothyroidism). I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body’s ability to make T3 may have been compromised by HAIT.
    Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book “Thyroid Solution”, by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and learned that a small percentage of people with Hashimoto’s are exquisitely sensitive to even low doses of Thyrolar. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as “HAIT anxiety syndrome”, although there are a few doctors who prefer to refer to any neurological symptoms accompanying HAIT as “Hashimoto’s Encephalopathy”.
    I began to feel a little better between March 2002 and June 2003. I’m not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for antibodies to gliadin (one of the two major proteins in gluten grains) in 2002, and that I really should consider removing gluten grains from my diet. This recommendation was based on three factors:
    I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley; I had anti-thyroid antibodies which were over the threshold that defines HAIT; Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try. In a numbers sense, the response of my anti-thyroid antibodies to the removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. I eventually concluded that the removal of gluten grains from my diet was not all that difficult, partly because I wasn’t a celiac who had to worry about that last 1%. I also concluded that removal of gluten would have a positive health effect in terms of the reduced glycemic index of the foods I consumed.
    My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body’s need, not the pig’s need (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig’s biochemistry). For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 test. I have since gone through a couple more of these “yo-yo” episodes while being treated, which is a not uncommon event—thyroid treatment is as much art as science.
    Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician’s Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements; but they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be altered.
    I gradually transitioned off adrenal supplements during 2005, and very gradually increased my T3/T4 supplementation over the course of the year. Finally, by September 2005, I began to realize that I truly had recovered my health—I had episodes of feeling really good again! Still, my sleep was not perfect—I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I finally could feel, every day, like I had in my 30s. Unfortunately, it had taken an agonizing 14 years to get there.
    Today, I religiously take my 10 micrograms T3, and 75 micrograms T4, split into two doses each day. I also religiously avoid all traces of gluten grains in my diet because I now understand that the gluey, hard-to-digest proteins in them are a substance which can cause major metabolic disruption. Like the co-author of the book “Dangerous Grains”, Ron Hoggan, with whom I have corresponded, I have come to realize that our society’s over-use of a potentially toxic substance isn’t just dangerous to the 1 in 133 people who have full-blown celiac disease—it can cause a very poor quality of life for the approximately 1 in 5 who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may require combination T3/T4 therapy to feel better; and, you may never feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid.
    Most of all, 14 years after it started, I feel as though a significant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 59th years of life.
    I never imagine that I would be looking forward to the relatively advanced age of 60. However, given that I now feel better than I did at anytime between the ages of 43 and 59, 60 looks like a good place to be.
    Summary:
    In retrospect, the most important things I ended up learning from 14 years of very unpleasant experience are:
    If you have psychiatric symptoms, e.g., depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. The emotional/psychiatric effects of hypothyroidism are just as important, and just as damaging, as the physical ones. Unfortunately, many MD’s focus on the physical. If you want to get well, you have to apply all your skills and intelligence to investigating your problem, which most MD’s may not understand. You may also have to turn to “alternative” practitioners. If your TSH is above 3.0, or maybe even 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4), and/or try a test run of thyroid supplementation, find another doctor. If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for allergy to foods, and testing for allergy to common environmental toxins if food testing reveals nothing. You may find, as did I, that you won’t feel as well as possible until you free your body from antibodies.

    Jefferson Adams
    Lawsuit Claims Bob’s Red Mill Ignores RoundUp Pesticide in its Oat Products
    Celiac.com 09/13/2018 - Bob’s Red Mill finds itself under fire by two women who claim the company knowingly hides the presence of an allegedly cancer-causing weed killer in its steel cut oat and rolled oat products, and falsely advertises those products as healthy. 
    Tamara Frankel and Natasha Paracha filed a federal class action in San Francisco, alleging that parent company Bob’s Red Mill Natural Foods knows that its oat products contain or likely contain glyphosate, but fails to disclose it on the label. The women cite a recent report by the Environmental Working Group, an environmental research and advocacy group, which claimed to find traces of controversial herbicide glyphosate in Cheerios, Quaker Oats and other oat-based breakfast foods. The women contend that Bob’s uses labels such as “gluten free,” “wheat free” and “purity tested,” which lead consumers to falsely believe them to be healthy.
    Both U.S. and European regulators have concluded that glyphosate is safe, while that World Health Organization’s International Agency for Research on Cancer classifies it as a probable human carcinogen.
    Bayer subsidiary Monsanto, maker of the glyphosate-based herbicide Roundup has faced numerous lawsuits over its product.  A San Francisco jury recently found that exposure to Roundup caused the cancer of a school groundskeeper, and awarded him $289 million in damages. Shortly after that verdict, the Environmental Working Group released a report claiming that 31 of 45 oat-based food samples tested positive for glyphosate, and that levels exceeded safety limits of 160 parts per billion.
    EWG applies a more stringent standard than the 2 mg/kg/day of glyphosate standard used by the U.S. Environmental Protection Agency, and the 1.1 mg per day standard used by the State of California.
    Frankel and Paracha are represented by Patricia Syverson of the San Diego law firm Bonnett, Fairbourn, Friedman & Balint.
    Stay tuned for more developments on this and related stories.

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    • Victoria, It can be.  Up to 40% of Celiac's have some Neurologic/Psychriatric issues. Here is the research on the anxiety and depression issues common in celiac's entitled "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/ I used to have terrible anxiety (un-natural anxiety) almost to the point of a panic attack. Taking Zinc lozenges (they self regulate) with a metalic taste in your mouth helped many of my anxiety issues. Later (or around the same time I cant remember now) I learned magnesium and B-Vitamins could also help. Taking a B-complex as I think Ennis_tx mentioned (in another thread) and taking Magnesium Citrate helped many of my depression issues. Here is a good article that explains some of the vitamins/minerals that some one can take that can help anxiety and depression issues entitled "The Role of Vitamins and Minerals in Psychiatry" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/ I hope this is helpful but it is not medical advice. Low Iron is also common (IDA) in celiac's and has been shown to be associated with panic attacks. Here is the research on low Iron and B-6 entitled "Low serum concentrations of vitamin B6 and iron are related to panic attack and hyperventilation attack" https://www.ncbi.nlm.nih.gov/pubmed/23603926 I didn't know any of this then.  But it is not all in your head as doctor's some times are prone to say. The anxiety is real! Again I hope this is helpful and good luck on your continued journey. There is hope I used to be you!  Waking up on the "wrong side" of the bed. . . days in a row never knowing why? At least you know how gluten is effecting you or are at least right to suspect it and you can avoid it. . . . And sometimes just avoiding the issue once you have identified it is easier than dealing with the after math. And why would you want too anyway? It is not all in your head!  Be your own advocate! Note/Remeber the research was on the "Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity"  which you seem to have.  You don't need to be full blown (officially) diagnosed celiac for gluten to affect you poorly as you are noticing. Again I hope this is helpful but this is not medical advice just some of the things I found helped me.  And if they help you.  Pay it forward and tell others. I wish I knew some of these things years and years ago as many of us do on this forum and why we still participate/share our experiences to help those still looking for answers sadly we had to find out on our own too often! 2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included Posterboy by the grace of God,
    • Hi Victoria! Consider getting retested for celiac disease provided you are still eating gluten daily.  Children of celiacs should be retested every few years even if they have no obvious symptoms.   https://www.gluten.org/branchnews/relatives-tested-celiac-disease/ https://www.ncbi.nlm.nih.gov/pubmed/24552206
    • Hi, I wanted to submit some new info on the altoids smalls. They have been banned previously by celiacs due to wheat maltodextrin listed as an ingredient. However, I just noticed that on their tin, there the wheat maltodextrin is no longer listed in the ingredients. So, I wrote to wrigley's asking about that. Here's the replyi received: "Thanks for taking the time to contact the Wrigley Company.  We really care about your questions and feedback. We had changed the formula with in the last couple years were we took the wheat maltodextrin out of the Altoids Smalls Mints. If the old tin you have says wheat maltodextrin it would be the old formula. If you have any additional questions or comments feel free to contact us at 1-800-WRIGLEY (974-4539)  Monday through Friday from 8:30 a.m. to 5 p.m. CST or visit us at www.wrigley.com." I thought that was great. But I wrote them again because I was still wondering about any other gluten possibly hiding in there. Here's their response: "Thanks for taking the time to contact the Wrigley Company.  We really care about your questions and feedback. We are not using any oats, rye, barley, gluten or wheat in the Altoids Smalls Mints. The tin will not say gluten free on them. Because the ingredients are not tested or certified as gluten free. The only two products that have ever been certified gluten free are our Skittles Candy and Starburst Candy. Which you will see the gluten free statement on the outer packaging. If you have any additional questions or comments feel free to contact us at 1-800-WRIGLEY (974-4539)  Monday through Friday from 8:30 a.m. to 5 p.m. CST or visit us at www.wrigley.com." So it sounds like they are most likely ok now, except for the most sensitive of us. Just thought I'd share the info. 
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