Prologue I never know what to call a post. What Else Could it Be; Co-Morbidity in Celiac disease and what else could be causing your Celiac like symptoms or I had Celiac Disease and developed Pellagra. This is my story yours may be similar. I have tried to write as much as I could of this beforehand to summarize some of my experience and research since I was first serology confirmed a Celiac and why I think Pellagra explains if not all the complications a Celiac develops at least many of them seem common in undiagnosed Pellagra but I find formatting and links can be a challenge.
This is not meant to be an answer to all your questions but a beginning,
posterboy by God’s Grace. See post that follows “I had Celiac disease and developed Pellagra”.
Good luck on your journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”.
I had Celiac Disease and developed Pellagra
I try and educate about how Pellagra can be confused for Celiac disease and/or GI problems like IBS, GERD, Ulcer’s, UC etc. after having received a Celiac diagnosis and my symptom’s improved greatly after taking Niacinamide (the non-flushing form of Niacin).
And almost without fail people do not see the connection. They say but I have … . fill in the blank.
They don’t see the connection.
But if I say it this way maybe it will help you “I am a Celiac who developed Pellagra” or fill in the blank … . heartburn, IBS, UC, Chron’s etc.
I named this post this because another board/forum member said as much in a thread post on this forum and it struck with me. She had the digestive problems of a Celiac but also the dermatitis issues of DH and her itching got better after taking Niacin.
What we fail to understand often with any diagnosis there is continuum of disease/symptoms.
Since this happens gradually you develop heartburn first then you have IBS, and Constipation and diarrhea then maybe an ulcer etc we don’t often see the connection.
But all along it was the same disease in a more pronounced condition.
If we catch it early enough say at IBS then the ulcer or UC might not develop.
When we think spectrum of disease it helps us to understand these diseases’ can be and are more related that we often understand.
They are all bound by STRESS. Do not all these conditions worsen when you are stressed does not the heartburn turn into IBS i.e. your constipation and diarrhea flare up?
Yet we think of them as separate diseases Right?
No there is a continuum of disease bound by STRESS and TIME.
The longer the stress the more your symptom’s Right!
You just haven’t stopped to think about the relationship.
Relationship and time is important to a proper diagnosis.
So how are these related?
Our mucus membranes are always in a constant state of repair either of repairing or rebuilding what is broken or maintaining our bodies defenses.
This takes energy and lots of it and one is not able to make enough energy to repair the lining of our stomach without enough Niacin and Pellagra develops.
I am not even saying I have been cured of Celiac disease. I say my GI symptoms are in remission which leads me to Pellagra as a cause and effect relationship of stress and our environment — Epigenetics.
I am saying I was/am a Celiac who developed Pellagra.
The International Journal of Celiac disease notes that both Pellagra and Celiac disease does often occur in the same person.
How do we know this?
The Journal of Celiac in an issue entitled Celiac Disease Intestinal Heart and Skin Interconnections http://pubs.sciepub.com/ijcd/3/1/6/ when listing common aspects of both diseases’ says and I quote “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease.”
Which also explains why a Genetic disease can increase in two or three generations because our stress changes our genes.
There is a trigger. Stress — it is not your day to day stress. We can handle all that kind of stuff but TRAUMA lasting 3 or 4 more months at a time. Think when Celiac disease was first studied as a Disease? It was during and directly after WWII and I dare say a stressful time to say the least.
Not to mention all the energy needed day to day to just survive. Europe almost starved after the war.
So much so he U.S. government had to step in and help deliver/air drop humanitarian aid to Europe.
It was called the Marshall Plan named after the man who devised the relief plan and it is credited with keeping Europe alive after WWII and averting another possible world war because of the infighting that would have developed from a starving Europe.
3 to 4 months is approx. the exact time we can store B Vitamins. Anything that triggers the fight or flight high energy response (TRAUMA) that depletes our bodies reserve’s.
Stress is coincidently what Niacin helps us control. It (Niacin) helps control our stress response’s in the body without which cellular disfunction happens (are membranes brake down). Like the alternating constipation and diarrhea you have had for years if you have developed Celiac disease.
Things like a Car Accident, difficult divorce, injury to our kids, extended care giving, surgery etc. can and often does trigger GI problem’s. And yes the stress of pregnancy.
And it (STRESS) is common with with/before a pregnant lady gives birth triggering heartburn.
A good example is pregnant women in their 3rd trimester often develop heartburn that’s goes away when the child is born.
Those who are predisposed continue to have heartburn and GI problems because their body couldn’t meet their need. Half of pregnant women develop heartburn during pregnancy that goes away in all but about 1/3 of those who get heartburn when the child is born.
Think of Heartburn as infant Celiac disease if it helps you to think in these terms. The older/longer the heartburn persists or the more GI symptom’s (heartburn/GERD/IBS, Constipation, diarrhea, ulcer etc) reoccur the more serious the conditions and diagnosis becomes.
The genetic component is that 1/3 are predispose to high Niacin consumption when stressed.
It is those1/3 of us who had Pellagra and Celiac disease developed is who I am trying to help.
But it should be noted up and until your Celiac diagnosis things like the Ulcer, UC, IBS etc can/could be helped also if Pellagra is the Parent diseases and all these other diseases are its children.
Co-Morbidity is the term.
A B-Vitamin deficiency can be inherited but does not have to be permanent. It is a reversible condition.
See this new research that ties eczema in babies to low Niacinamide in the mother during pregnancy. Nicotinamide is usually the way Europeans spell Niacinamide. Both names refer to the same amide form of Niacin.
The very definition of a Vitamin (especially in the case of B vitamins) a vital (life giving) nutrient/substance needed in a minimum amount without which we become sick.
Your continuum of diseases are completely reversible if your symptom’s look like Pellagra (digestive, dermatitis and dementia’s) in nature and your respond (BURP in 3 to 4 months) to Niacinamide you might have Pellagra and the doctors have not figured it out in a clinical setting (they are sub-clinical) yet or at least you (may) have Pellagra and Celiac Diseases Co-Morbid.
If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Really there are 4 D’s more on that latter but we are trying to catch Pellagra before it gets that far.
The International Journal of Celiac Disease notes this co-morbidity when they note in 58% of Celiac -- Pellagra ALSO occurs.
See this link http://pubs.sciepub.com/ijcd/3/1/6/
Quoting their paragraph 3 on the Co-Morbidity of Celiac and Pellagra together
3. Pellagra and Celiac Disease
“The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease . The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]. “
58% of the time (that is a majority folks) Celiac’s go on to develop Pellagra too!
Or is it really the other way around? Have you had Pellagra all along and now you have developed Celiac from it (Pellagra) undiagnosed.
The later may be more true than you know.
Ask your friends if they have ever heard of Pellagra. I dare say it a low percentage that knows Pellagra a once rampant disease especially in the rural south can cause many of the GI problems you are now experiencing as a Celiac disease patient or even the Non-Celiac Gluten Sensitivity (NCGS) patients that have not yet received a Celiac diagnosis.
And it maybe a lower percentage today that know what Pellagra (or even that they could have it) is than have heard of Celiac disease or think they have Celiac disease instead.
Think beri beri, rickets, scurvy etc all complex diseases completely forgotten about today that were/are completely reversible conditions.
As Dr. Heaney points out about Pellagra today!
That as Creighton’s University Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine post here at this link
The knowledge of Pellagra (if you have ever heard of it) is in that same state of forgotten diseases now thought relegated to the history books.
If you have Pellagra co-morbid then you just have to take a Vitamin to get rid of this morbidity.
This is a summary of my 10 year journey.
I researched these things for 3 to 4 year (2 Tim 2:7) before I had the courage in my conviction to test this Pellagra theory.
But I think most people would rather hear from some who has suffered like them and has been able to help themselves. This is not theory anymore for me. It is my story.
In case this is the only post you read I will repeat here for knowledge sakes ****** the number one mistake people make when taking Niacinamide is they don’t take it often or long enough. It should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 3 to 4 months or less taking it 3/daily — ie with each meal.
What do I mean by burping? This confuses some people sometimes.
I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated.
But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp -- Burping without the bloat and distension (pain from gas) that comes later.
When your stool begin sinking your body is digesting the carbs and proteins that were causing you the backwash (heartburn/GERD/IBS) before when you only burped a little or occasionally or when you drank something carbonated.
Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 3/day for 3 to 4 months at a minimum.
Dr. Prousky proved this 15 years ago this past November that Niacinamide treats digestive problems.
Yet 15 years later people still are bemused when you mention Pellagra let alone that Pellagra could be contributing to your Co-Morbid Celiac disease.
I for one will tell those will listen. I am a Celiac who developed Pellagra.
Learn from my mistakes so you don’t have to repeat them and get your doctor to test you for a Niacin deficiency.
Pellagra once rampant early in the 20th Century is now known TODAY as Celiac disease in the 21st Century (I believe) or at least in a good majority of cases could be.
To paraphrase William Shakespeare “Disease by another name hurts just as much” and maybe more because if you get the right disease you can get better!
You know have the power to help yourself forum reader (because knowledge is power) the question is what will you do about it?
This blog post is a store house of 10 years of research learned from life experiences. The blog’s author has been stung so you don’t have to be.
Learn from my mistakes.
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.
Is it any wonder God’s promised land was described as a land flowing with milk and honey?
Where knowledge flows there is health of mind and body.
Feel free to ladle and dollop your life with the sweet stickiness of the truth (knowledge) found/ gained today. For honey like truth stick to you once in contact and you can’t just wash it away.
Don’t let them the doctor’ almost kill you before you are willing to take a Vitamin to see if it is really the Co-Morbid Pellagra as the International Journal of Celiac Disease notes that could be causing your Celiac symptom’s in the MAJORITY of Celiac patients if the International Journal of Celiac disease is correct.
Quoting again from the IJCD “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease .”
See this link provided again for easy reference http://pubs.sciepub.com/ijcd/3/1/6/
Stop the madness! Admit the MAJORITY of Celiac Patients today are Co-Morbid with Pellagra and if you treat the co-morbid disease you can get better from that morbidity.
The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!”
If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.”
See Dr. Heaney’s Professor of Medicine discussion about why Pellagra is not diagnosed today here at this link
This blog post is about the ignorance (of) Pellagra cost’s you when the doctor’s diagnose you with Celiac Disease/NCGS when 58% of their patients is/are Co-Morbid with Pellagra and they get the wrong “key” diagnosis.
**** 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 I have found and my friends have found if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) and your stool SINK then 95% of your GI stress will be in remission.
You could still have other things that are bothering you but it won’t be Pellagra. If you take fiber and still have GI trouble then eliminating supplemental dietary fiber for 30 days (like you did to see if gluten was your’ problem) might help you figure out whether the fiber is helping or hurting your GI problems. People do have bad reactions to fiber sometimes that can be confused for IBS problems and unless you try eliminating it for 30 days you won’t know for sure if it is causing or contributing to the remaining GI problems you might still be having after taking Niacin until burping if any.
As I am fond of saying “To Educate is to truly Free”.
But do not do as I did! Learn from my mistakes.
DO NOT take Niacin or Niacinamide or any form of Niacin UNTIL you have your doctor’s test you for it (Pellagra).
If you notice the IJCD link these were clinical observations only.
Quoting the IJCD again “It is the first description of celiac disease . . . .and Pellagra in the same person, however, only associative linkscan be established, but not cause and effect relationships. Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated.”
You probably know this by now if you are a Celiac or even a NCGS patient the diagnosis rate for Celiac disease can be a horrible and if you have Pellagra it is even worse because the doctor’s like Celiac disease 15 or 20 years ago are not even looking for it today.
One more test needs to be done to differentiate Pellagra from Celiac and it is not being done today as Dr. Heaney correctly noted. Doctor’s don’t know to look for it (Pellagra) much less in a Celiac patient.
See this link to the Merck Manual a commonly used traditional desk reference for Physician’s when they need to look up a diagnosis.
Quoting from the Merck Manual “If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency.”
No, doctors don’t know everything they have to look things up from time to time too. And when they do look up Pellagra when you ask them to test you for it the way some people on this board went to their doctor’s to have them test for Celiac disease instead of accepting as Gemini on this board said and say you had IBS instead “I Be Stumped” they learned/were taught by their patient’s that Celiac is not as rare as once thought.
And neither is Pellagra.
Quoting the Celiac Posterboy “Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!”
Why is this?
The pellagra disease blog explains why this is https://pellagradisease.wordpress.com/
Quoting Niki Frost “Since pellagra is (thought to be my words) such a rare disease today, few people recognize it based on their symptoms alone (any of the three D’s: dementia, dermatitis, and diarrhea). Pellagra patients are consequently (constantly being my words) referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.”
So the cycle repeats. Since these specialists don’t consider you in a subgroup that is prone to be diagnosed with Pellagra then Celiac/NCGS disease is diagnosed if you are lucky and not some other GI problem like chrons, IBS, UC etc because in these cases the GI specialists is not even looking for Gluten as a possible trigger.
This is not to even mention the other D’s of Pellagra today being diagnosed as various degrees’ of Dermatitis like ezcema, psorsias, Dermatitis Herpetiformis (DH) etc which are related to skin presentations of Pellagra. Pellagra when it was first named means rough/sour skin in Italian and people forget that today.
Or the dementia’s of Pellagra like depression (40 percent of Celiac’s are depressed) or the “brain fog” a Celiac develops after being “glutened” I could go on and on but you get the idea.
But unless you are tested for it your doctor’ won’t know to look for it in their next Celiac patient because they do not know to look for it in GI patients today remember the war on Pellagra ended 75+years ago so they don’t look for (see) Pellagra anymore in a clinical setting unless you are in a subgroup like being an alcoholic etc . The same way they didn’t or might not of known to test their IBS patients for a Celiac diagnosis 10 or 15 years ago.
I am not saying this will help you the way it seemed to help me. But I am saying have your doctor verify these things for you before doing these things because if you are a Celiac that has developed Pellagra also then it needs to be documented.
If you want to read more about my story search for the posterboy on this board to read my other forum threads or visit the website in my profile.
I have specifically left out dosage amounts because the frequency you take a B-Vitamin is more important than the amount you take of it.
Because B-Vitamins are water soluble 2 or 3 hours later if one is deficient in that Vitamin then the body can absorb more of it. So taking higher doses don’t necessary help you any more than lower doses. They (higher doses 500mg) can be easier to find especially if you are taking it (Niacin) for cholesterol management but it doesn’t help you any quicker than smaller amounts more frequently and higher Niacin causing flushing (which can be mitigated to some degree by taking Niacin with food) where the Niacinamide form doesn’t.
In fact taking smaller amounts frequently 3/day with meals will help approximately 40 percent faster than one larger 500mg capsule/tablet only once daily.
And why if given a specific amount and you retain it (is low in the urine) is a sign you are low in Niacin. I do prefer the Niacinamide form because it is a naturally flush free form.
The Merck Manual notes this quoting “Nicotinamide is usually used to treat niacin deficiency, because nicotinamide, unlike nicotinic acid (the most common form of niacin ), does not cause flushing, itching, burning, or tingling sensations. Nicotinamide is given in doses in doses of 250 to 500 mg po daily.”
But a Slo-Niacin can work just as well.
The Townsend Letter makes note of this in their Feb/Mar 2003 edition.
This will be a cycle. You will take it until burping 2 hours after you finish your meal and your stool sinks where before it floated and even water now causes burping without bloating or gas or distension.
It might be 3 or 4 months for some people or it might be even 6 months or longer for some people. But it is a cycle. Usually people feel better when they begin burping for the first time in years and their stool now sinks when before it always floated.
I do not now take Niacinamide and haven’t for several years since my symptoms’ are in remission.
I stopped taking it when I had rebound acid reflux. By that I mean I begin to have acid reflux symptoms when I had no food in my stomach that when away when I ate something.
Timeline is important in any diagnosis.
All heartburn is not equal.
IF your stomach acid was HIGH as you often hear then eating food (carbs, greasy things or your other triggers) wouldn’t bother you because it would only weaken it.
BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight you are in and things (carbs/fats) become to ferment, rancidify and cause heart burn.
The excess pressure from fermented carbs push open the trap door allowing the low acid you have burn the lining of your esophagus.
TRUE heartburn from too HIGH acid happens between meals when there is no food in your stomach to tamp it down and will occur if you take Niacinamide too long and how I knew I needed to stop taking Niacinamide.
When low in stomach acid for too long in time this can lead to Non-Celiac disease first and with enough injury to Marsh lesions qualifying you for diagnosis as a Celiac candidate/patient.
How do we know this?
Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis.
Celiac.com reports these findings
Note how the researcher’s starts the article
“Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.”
If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what they are postulating.
They go on to say without being very technical (read the whole article for yourself) that
“The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.” . . .. Summarizing their findings
“The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship”.
Now the term causal is not used lightly. To prove causal is much harder than casual (occurring with) like the 58% of Celiac who are also casually observed as having Pellagra.
Gluten Free works summarizes a casual association of a Niacin deficiency very well at this link
They only note a casual association only noting similar symptoms occur in Pellagrin’s too.
Quoting “ Inadequate levels of niacin slows metabolism and impairs functioning of the brain and nervous system, digestion, skin, DNA repair and other key cell processes, and steroid and sex hormone production. Severe deficiency of niacin causes the disease pellagra.2 “
I can not prove that Niacin helped me because I did not know to test for it or have the doctor test me for it but you can teach your doctor to look for i it in you if you are an IBS, NCGS, or Celiac patient by sharing the information in the Merck Manual with him/her.
To prove causal you will have to have your doctor test you for a Niacin deficiency verifying the International Journal of Celiac disease casual observation that the majority of Celiac are co-morbid with Pellagra establishing if not a causal link that it at least contributes to your concomitant GI conditions in at least the 50 percent of Celiacs’ who are low in Niacin and don’t know it.
Taking the Niacinamide as the Merck Manual notes in their key points for doctors can confirm the diagnosis.
Quoting “Use nicotinamide/Niacinamide to treat the deficiency; a favorable response can confirm the diagnosis.”
If you want to research more about Pellagra and how it can present as so many different diseases and its clinical presentation(s).
I say presentation(s) because if it begins with a “D” i.e., dementia, dermatitis or Digestive Disorders(s) (I added the S to Digestive Disorder because I think it speaks to the spectrum of diseases) that Pellagra can and is often confused for in modern medicine. And could be added to dementia(s) and dermatitis (s) see above about depression and Celiac and Pellagra meaning rough/sour skin in Italian and the Hindai link below to do more research on Pellagra if this blog post is not enough to answer all of your questions.
Read this great Hindawi article linked below for a great synopsis of Pellagra
where they pose the question what role does Pellagra play in contemporary disease (today)
In one of their breakout paragraphs talking about Pellagra today! They discuss how Pellagra is still prevalent today in contemporary disease pathways entitled “Is Subclinical Pellagra Relevant to Contemporary Disease?”
And they list a dozen plus ways it is and I whole-heartily agree and I hope you do too after reading this post. And doing some of the research listed therein.
It bears repeating though I said it earlier **** Note: 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.
Good luck on your journey and I hope it helps you the way it seemed to help me.
Posterboy by God’s Grace!
2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.
Blessed are those who will hear and take a Vitamin for their health or at least have their doctor check their Vitamin levels so they can get better from that morbidity if indeed as the International Journal of Celiac disease notes – Celiac’s are co-morbid with Pellagra in the Majority of celiac patients and the doctor’s don’t know yet to test for it but by having your doctor test your urine for low levels of Niacin it indicates you are retaining Niacin to maintain and repair your membranes the doctor can treat you for this morbidity a sign of undiagnosed Pellagra today.