Now it's my turn

[Posterboy]

Feeneyja,

This is why some/many on this board have been diagnosed (technically) as NCGS because it is not a "biopsy" proven Celiac though we know in our heart of heart it (gluten) was the trigger.

And while it shows up with gluten and or lactose intolerance form for most first . . . I believe it from our defense's being weak to begin with that is the root cause of most food allergies.

I.e. low stomach acid being misdiagnosed.

I summarize these thoughts in my posterboy blog post about this topic found here

I can't say unless you tell me? do you take an acid reducer now?

but low stomach acid either by taking PPI's or STRESS can cause many of these same symptom's.

here is the celiac.com article about PPI's usage and celiac disease diagnosis relationship.

https://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html

for me it is about following the bread crumbs (symptom's) back to what is real cause that explains the most symptom's.

gluten is a protein and the 8 most common food allergen are proteins.

obviously are defense's are weak.

stomach acid let's us mount a strong defense against food ("invaders") if you will i.e. proteins of all kinds.

we don't think about this as such but technically any food within in our GI system is still outside our body.

stop and think about this.

I will say again for emphasis any protein (food) we eat is outside our body until it is digested.

we do this by stomach acid.

most bacteria is digested (sterilized) by strong acid in 15 minutes by the process of hydrolyzation the process of cleaving by water driven by a strong acid.

and why a strong acid is critical to good digestion especially against food allergy's.

because most viruses are proteins.

and our body can't discriminate against good/bad proteins.

ALL proteins are BAD proteins to/for the body unless we digest them first they can't be metabolized without setting off an autoimmune reaction.

once we reach a threshold (below which we become sick) being low in vitamins triggers that autoimmune reaction.

since we have identified the offending food/protein we smartly/wisely avoid the food that causes the allergy.

but still our defenses our weak.

STRESS kills right?  Well it maims us first!

And when eat proteins like lactose, peanut, gluten etc when our defenses our weak we attack back.

how do we know this well we follow the bread crumbs back (to the cabin where it is safe) what cause's our defense's to be weak in the first place.

And I know Ennis_tx will disagree with this but you will have to find/follow your own path back to safety/health but low stomach acid answers nearly all the questions.

And for the record people taking PPI"s stomach acid is already too low to defend us against proteins.

which is critical to controlling the auto-immune reaction.

new research bears this out.

Open Original Shared Link

entitled "Have GERD? Stomach Acid May Not Be the Only Cause, Study Says"

we (doctor's) have gotten it wrong all this time but that won't stop them from keep prescribing PPI's it is too good a business.

check out chris kresser's article on topic on the subject but the numbers are mind blowing.

Open Original Shared Link

the numbers are a little old but telling . . ..2004

I quote from chris kresser's online article

"Drugs for acid reflux and GERD are cash cows for the pharmaceutical companies. More than Open Original Shared Link prescriptions for GERD were filled in 2004. Americans spent Open Original Shared Link on acid stopping medications in 2006. Nexium, the most popular, brought in $5.1 billion alone – making it the second highest selling drug behind Lipitor.

As sobering as those statistics are, it’s likely that the prevalence of GERD is underestimated because of the availability of antacids over-the-counter. This permits patients to self-medicate without reporting their condition to a doctor."

fast forward back to the new research about the topic in 2017

quoting again.

"In the new study, Kerry Dunbar, M.D., Ph.D., and her colleagues looked at 12 patients who had Open Original Shared Link (when the esophagus becomes irritated and swollen), a complication that isn't seen in every GERD patient. Each of the patients stopped taking their proton pump inhibitors for 12 weeks. The doctors took biopsies and closely observed what happened both before as well as 1 and 2 weeks after the patients stopped taking their medication.

The patients did end up developing more damage, as the researchers thought they would. But the tissue didn't show a chemical-like burn that might be expected from stomach acid splashing into the esophagus. Instead, they found white blood cells, inflammatory proteins, and signaling molecules (known as cytokines), which are more consistent with what you would find when the body reacts to an injury."

quoting again

.... "These new findings suggest there may be other ways to fight the condition, the researchers say. "Although this radical change in the concept of how acid reflux damages the esophagus of GERD patients (it) will not change our approach to its treatment with acid-suppressing medications in the near future, it could have substantial long-term implications," said senior author Stuart Spechler, M.D., Open Original Shared Link. Dr. Spechler is a professor of Internal Medicine at UT Southwestern and chief of the Department of Gastroenterology at the Dallas VA Medical Center."

so new research but not new changes to incorporate these findings so what does that have to do with me you ask?

well the problem is they have missed another clue to what could be the root cause.. . . inflammation.

And proteins triggers this inflammation so how do we solve this inflammation problem or can we other than /short of removing the offending food/protein allergen.

the funny  thing about research often you find it repeated if you go back far enough and though today they are beginning to now understand the GERD is more of an autoimmune reaction think EoE than they understood 10+ years ago.

25+ years ago research had already been done that confirmed these findings but since they couldn't diagnose it then as EoE they described these findings to it's true cause of GERD then know as merely eophagitis . . you guessed it an inflammed esophagus. . . .. if you read the PPI's link (i.e, low stomach aid)  to celiac disease in time and with enough damage finally a celiac diagnosis or NCGS in your case because of a failed biopsy and my case because I was diagnosed with serology alone but we now know that is as accurate (or almost so) as biopsy alone.

so where does  that leave you/us?

let's follow the bread cumbs back home if we can back to safety from inflammation.

knitty kitty first researched this link I think.

Open Original Shared Link

I will quote in it's entirety because it is short

"Nutr Cancer. 1990;14(3-4):233-8.

Pathological effects of pellagra on the esophagus.

Segal I1, Hale M, Demetriou A, Mohamed AE.

Author information

Abstract

This study determined the pathological effects of niacin/tryptophan deficiency on the esophagus. Nine patients with severe clinical pellagra and 31 age- and sex-matched controls were assessed. All pellagrins had an esophagitis varying from severe to mild. The esophagitis improved in five patients following six to seven days of vitamin therapy. The relationship between vitamin deficiencies and esophageal cancer is discussed."

Notice how short of time it took to respond to inflammation in the body when we raise our defense to a natural healthy level by taking a Vitamin by definition a "vital (life sustaining) substance in a minimum amount without which we become sick" (my words) or in this cause inflammation breaks out.

let's go back further in the research to see if there is any other clues we can find.

to me in my mind this was the smoking gun that proved this theory.

see glutenfreeworks online study/article about this topic of where research proved (in my mind) that low Vitamin B levels Niacinamide specifically could be tied to the inflammation triggered in a celiac diagnosis.

Open Original Shared Link

we know that they (Niacin deficiency) and celiac disease occur together . .. but not being doctor's we can not conclude this as a medical fact.

I will quote from the article and they note this . . . so I am only repeating what medical/clinical professionals note. . . but I think don't yet understand  that Niaicn (or lack thereof) itself is the trigger for the inflammation.

quoting again

"Niacin is essential for keeping our skin and digestive tract healthy, our brain and nervous system  functioning normally, certain key cell processes repaired, our adrenal glands producing steroid hormones at demand levels, sex glands producing the hormones estrogen, progesterone and testosterone and, most especially, for producing energy to keep our body alive.¹

When absorbed from the small intestinal tract, niacin becomes part of a process including more than 200 enzymes involved in metabolism of carbohydrates, proteins and fatty acids, that is, chemical reactions that maintain life.¹ Niacin is stored by the liver.²

Niacin must be digested to release its absorbable forms, nicotinamide and nicotinic acid. These molecules are absorbed across the intestinal lining at low concentrations by sodium-dependent facilitated diffusion, meaning they need help to get into the bloodstream.¹ Niacin is absorbed at higher concentrations by passive diffusion, meaning the niacin molecules simply cross through the lining.² That said, absorption is hampered by the swelling and thickening of the intestinal lining that occurs in celiac disease.  Removing gluten reduces the inflammation and allows the lining to heal, facilitating passage of niacin through the lining into the bloodstream."

and especially note research 30+ years old that is easy to read over but they note (you can't see) in this post but could if you follow the link they note by a pull out in the article specifically noting this medical fact!

 

Intriguing animal research by Sandhur et. al. has shown that niacin deficiency itself sensitizes the intestinal mucosa of rats to gluten in wheat, barley, rye, oats and corn and induces susceptibility to gluten toxicity by means of cellular dysfunction.3 Human research needs to investigate this effect of niacin deficiency in human celiac disease.

I don't know how you could be more clear than that!

but it is lost to medical science today because the further time away you get from a a disease the less you know about it (Pellagra) is in 58% of Celia's co-morbid today.

dr. heaney has an excellent blog post about this topic on the 100th anniversary of Pellagra if you have heard of the disease before I mentioned it here on celiac.com though I am guessing few have heard of it unless it Knitty Kitty also mentioned it.

Open Original Shared Link

because today we don't believe (really) that vitamins can can cause something soo complex as our GI problems but we knew 75+ years ago that the D's of Pellagra (digestive issues, dermatitis issues, dementia (neurlogic today) issues) could be triggered by being low in Niacin.

It is time medical research took this up again I believe.

and prousky did 15+ years ago proving that niacinamide treats digestive problems.

Prousky, Jonathan E. Is vitamin B3 dependency a causal factor in the development of hypochlorhydria and achlorhydria? Journal of Orthomolecular Medicine, Vol. 16, No. 4, 4th quarter 2001, pp. 225-37 [74 references]

yet we still we don't realize today that pellagra is even a disease let alone that it explains the digestive issues celiac's develop.

I just try and make people aware of this amazing medical fact too long ignored.

back to what started this thread/discussion/diatribe/lesson on pellagra and how it is often confused for celiac disease today.

the further back (closer) you get to when Pellagra was still being diagnosed as a real disease  and not relagated to the history books.

they were all over it.

I will quote again from research that is ancient by today's standards 70+ years ago they knew this stuff.

The esophageal manifestations of pellagra.

 

Author(s) : Open Original Shared Link

Journal article : Open Original Shared Link 1944 Vol.37 pp.446-448

Abstract : In absence of any description of the mucosal lesions in the oesophagus of persons suffering from pellagra, it was decided to examine with the oesophagoscope 17 pellagrins, 24 to 72 years old, complaining of dysphagia, of whom 12 could not take any solid food. The mucous membrane was intensely hyperaemic and in some cases oedematous, with multiple tiny ulcers present in 9. Barium studies in 8 showed small constricted areas corresponding with those in which ulceration was present. All the patients had glossitis. Several are mentioned as presenting haemangioma-like lesions of the conjunctiva.
After treatment with nicotinic acid, riboflavin and vitamin B₁ had been instituted the dysphagia was relieved in from 3 to 8 weeks. The mucous membrane was normal in the one case stated to have been re-examined subsequently. Trop. Dis. Bull."

It is me again.

and just like research quoted over 25+ years old first linked by Knitty Kitty or Ironictruth I can 't remember which they rediscovered I will quote again

"The esophagitis improved in five patients following six to seven days of vitamin (niacianmide) therapy".

the question will it be another 15+ (prousky) or 25+ years until medical science reawakens to what they new 50+ neigh 75+ years ago that Niacin(amide) treats digestive problems proven in human trials by Prousky a little more than 15 years ago.

sorry this response was so long but I had a lot of ground to cover . . .as usual but the farther you get away from a disease the less sadly you now about it today.

one more final point.

you forgot to be an alcoholic or (become homeless) since today there is where/when most Pellagrin's are diagnosed today.

see this research where they study the phenomen know as Pellagra today believed to only/most present in alcoholics today.

Open Original Shared Link

quoting again

Pellagra associated with esophageal carcinoma and alcoholism.

Open Original Shared Link (ISSN: 1087-2108)

Nogueira A; Duarte AF; Magina S; Azevedo F

"Pellagra is a nutritional disease caused by the deficiency of niacin. It presents with a photodistributed rash, gastrointestinal symptoms, and neuropsychiatric disturbances. In the Western world, this disease is mostly confined to alcoholics or the impoverished. However, this condition must be recognized in other clinical settings because it is easily treated and can be fatal if not identified. We describe a case of pellagra caused by esophageal carcinoma and alcoholism; we also review the literature."

but you might be soon be there impoverished and homeless if the doctor's don't soon recognize Pellagra for what is is an easily treated once identified nutritional deficiency.

I will issue the same caution they (doctor's did who have studied Pellagra in more detail) quoting again . . ."However, this condition (Pellagra) must be recognized in other clinical settings because it is easily treated and can be fatal if not identified.

as always ****this is not medical advice (((((((hugs)))))) but I would seriously consider taking a B-complex with Niacinamide to see if many of your GI problems don't improve in 6 months time.

If they do you WILL burp where you are bloated now and your stool will SINK if it does not now and you will be able to count down to one movement a day even if you have accidently (cross contaminated) with Lactose since it is a protein too we react too your body will be able to digest this protein now!

Stress has maimed you.  Take the Niacinamdie for it kills you!

Re-erect an acid barrier in your stomach to protect your lower GI from the proteins now causing you problems.  And few enemies EVEN proteins (food allergens) will be able to get through your soon to be strong defenses to bother your Small Intestine.

A healthy child BURPS at 6 month of age a sign they can digest whole food (proteins) and a healthy adult will too after taking Niacinamide for 6 months.

I would also read the this thread about my response "could this really be Pellagra" response to lumiast that seemed to help her understand how these issues could/be and I believe are related when you get some time to read it.

https://www.celiac.com/forums/topic/117315-what-does-borderline-mean-in-blood-test-results/#comment-971097

I think it is a shorter response than this one .. .  (though I am not sure since I don't usually write short responses when I am trying to cram everything I can remember in one response but when you are trying to educate sometime you have take the long road like when in math they taught you long division in Math only to find out there was a (shorter) better way.  . .

For me a Vitamin was the shorter better more elegant way!

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

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.”

I hope this is helpful!

I am sure I have forgotten something but this is a good place to start and now I need some zzzzZZZZZzz

posterboy by the Grace of God,

 

[Feeneyja]

My head is feeling mostly better (today is day 5 gluten-free post endoscopy), not the brain fog, some slight dizziness -NOTHING like before)...but I'll be honest with you posterboy, I'm having a tough time concentrating through your entire post. 

I will repeat that I was very healthy, gluten free, no processed foods, nutrient dense diet prior to the gluten challenge.  Locally procured meats, lots of fruits and veggies and greens and nuts and seeds and aged cheese and homemade 24 hour yogurt...My symptoms arose from the ingestion of gluten.  Now maybe I have developed a niacin deficiency from the challenge, but I was most certainly not deficient prior. No symptoms. Any symptoms I had were years prior and I never really connected it to gluten.

The removal of gluten post endoscopy  is making me feel better. The brain fog and headache were the first to go. By 3 days gluten-free the bloat was gone. My gums and teeth hurt so bad by the endoscopy. It felt like I would end up losing teeth if I kept going on the challenge.  By day 4 gluten-free the tooth nerve pain was gone and today I feel like I can chew again.  The constipation...still working on that. 

So I appreciate the information about niacin deficiency, but I don't think that is the cause of my GI woes.  My years gluten-free for my daughter likely healed my gut and I didn't really realize it. 

I guess part of my frustration stems from the lack of follow up with NCGS. The doctor told me that going gluten-free at this point is just symptom management and there is no damage or future health problems to stay on top of since I don't have celiac disease.  But I really find that hard to believe. Large amounts of mucus in my BM, loss of hair, the potential loss of teeth...really??  Just symptoms?  No further heath concerns or risks?  I have a history of anemia and stress fractures.  Family history of cancers. But it's all good because the biopsy was normal. 

Anyway, I decided a multi vitamin would be useful for now. It does contain b complex. 

[Jmg]

27 minutes ago, Feeneyja said:

I guess part of my frustration stems from the lack of follow up with NCGS.

I know exactly what you mean! Once I had the negative result from the biopsy that was pretty much it as far as the medical profession were concerned. The consultant recommended I stay gluten free for life, which was never in doubt once I'd experienced the challenge, but there is no after care, advice or monitoring as might be expected with a positive celiac finding. In this respect NCGS is something of a dustbin diagnosis at the moment, at least Open Original Shared Link underway bears fruit.

One thing which may be of comfort. I found the challenge very rough and I didn't recover as quickly as I had the previous time I'd removed gluten. So at 5 days I think your doing fine. Like you I found brain fog lifting after 3 days but my stomach was unsettled for weeks and my whole 'system' was off for quite some time. 

57 minutes ago, Feeneyja said:

But I really find that hard to believe. Large amounts of mucus in my BM, loss of hair, the potential loss of teeth...really??  Just symptoms?  No further heath concerns or risks?  I have a history of anemia and stress fractures.  Family history of cancers. But it's all good because the biopsy was normal. 

Honestly, outside of some researchers in Italy, Australia, the US and UK I'm not sure many in the medical profession are sufficiently knowledgeable about NCGS to make such sweeping generalizations, and even they would probably hedge their statements for lack of supporting evidence. As you read this forum you can see the understanding on gluten has moved forward even in the lifetime of this site. There's still a lot of work to be done on celiac let alone NCGS. 

The positive aspect in your case is that you were healthy on your previous gluten-free diet. Eat as simply and as well as you can in these next few weeks and your body will recover from the challenge all the quicker. 

Best of luck!

 

[Feeneyja]

Thank you Jmg. Yes, I read with interest that paper in 2016.  There certainly is much they still do not know. And hopefully in the somewhat near future there will be celiac tests that don't require an extensive challenge and additional tests to solidify just what is going on. 

And yes, there really is great comfort in knowing I was feeling great before the challenge and at least we already had gluten free figured out. I am definitely feeling better every day. The constipation will take longer I know. And since there is still mucus i must still be irritated and I'm sure that will take time. 

That's for your encouraging words!

[Posterboy]

On 5/16/2017 at 8:39 PM, Feeneyja said:

I have been here for my daughter who has severe gluten intolerance, but no celiac diagnosis. We are all gluten free in our house so as not to harm her. But I have noticed that, when dining out or at someone else's house, I don't feel well after eating gluten.

Now I'm wondering about a lifetime of health issues that suddenly make sense: anemic off and on most of my life; episodes of headaches and vomiting; lots of mouth sores; sick a lot as a kid; in 8th grade lost LOTS of weight (accused of being anorexic); went through a "healthy" period where we ate lots of homemade whole wheat bread, wheat berries, rye berries, barley and I proceeded to lose 30  lbs, lose my hair, and had perpetually loose stools.  Broke 2 bones for no apparent reason (did have a bone scan after the second break but it was normal). 

We went gluten free and I have felt great.  But I didn't think anything of it.   

Now, I notice I feel nauseated and my stomach is just uncomfortable and churning, my legs cramp, and I get mouth sores when I eat gluten. It never occurred to me to think about my health when we went gluten free for my daughter. 

Now I'm starting my own gluten challenge.   Please tell me that 6 weeks is long enough!  I have been seeing that they are now recommending 12 weeks.  

Feeneyja,

I don't think I said it well.

Kind of Like SIBO girl and captain NCGS I see  everything (or most everything) through the paradigm of  (low) stomach acid mostly.

And why I mentioned my experience with taking Niacinamide to raise my stomach acid to to healthy levels.

Anemia is a classic sign of low stomach acid.

If you haven't eaten gluten for years (avoiding the protein) doesn't mean your defense's are any higher now that you doing a gluten challenge.

The fact that you describe your symptom's (Much as you had as  a child) though you didn't think about them at the time tells me you have been low .  . . all this time.  Enough time to thin your bones.

taking a B-complex can reset this stress clock in your body.

For anemia taking Beta carotene especially can help with your low iron which by the way takes a strong acid to absorb.

So either your stomach acid is strong enough to cause burping a sign of completed digestion are you will have low/poor nutritional status of the remaining mineral/vitamins you need to keep your bones healthy and produce energy.

here is the beta carotene link

Open Original Shared Link

quoting

"For ferrous sulfate, 92% of iron remained in solution at pH 6 when 5.1 μmol (3000 IU) of β-carotene was added, whereas only 36% was soluble at pH 6 without any provitamin addition."

allowing even people who  have higher than normal stomach acid to absorb their iron even when their stomach acid is not strong enough to cause burping which for most people happen around a pH of 4 or less.

this also can effect your energy levels but if you want to reallly help your energy levels take magnesium citrate 200mg 3/day.

see this thread that talks about why this is so.

You can't make energy without magnesium.  Your multivitamin probably only has  6 to 10 percent of your RDA of magnesium so you should also take Magnesium Citrate or Magnesium Glycinate separately.

and if your stomach is low enough to cause anemia then you are low enough in niacin that you can't make your own stomach acid strong enough to absorb your missing nutrients.

I think dr. dana myatt's online article about this topic covers it well.

Open Original Shared Link

quoting form the article

Jonathan Wright, M.D., well-known and respected holistic physician, states that:

"Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal."

It is me again not to mention B-Vitamins.

and why I recommend a B-complex like B-50 or B-100 separately in addition to a multivitamin.

But B-vitamins should be like Magnesium taking frequently (3/day) for maximum benefit.

see my posterboy blog post about to take B-Vitamins and Niacinamide specifically.

B-vitamins helping with stress is common but we don't think of disease in those terms often that inflammation can be caused by a vitamin or lack of a vitamin in this case.

Folic Acid helps blood pressure.  A B-Vitamin common in prenatals because the mother is being stressed obviously.

B-12 helps pernicious anemia which when low in B-12 an produce high homocysteine levels and indicator of stress/inflammation in your blood associated with heart health and none of these B-vitamins can be absorbed like iron (anemia) when your stomach acid is too low!

that is what I was trying to say . . . if there is inflammation/stress then Niacinamide has been identified countless times as B-Vitamin that can  and does treat digestive problems but this fact is not well understood today.

But 50+ years ago they got!  And if it (Niacin) worked 50+ neigh 75+ years ago to treat digestive problems then it will work today if people will take it.

But because doctor's don't recognize a Niacin deficiency as GI problems, IBS, Anemia etc in  it's earliest stages more serious GI problems develop like SIBO, NCGS and yest even Celiac disease.

How do we know this . .  let's follow or bread crumbs again because new research confirms that low stomach acid triggered by PPI's stress out the small intestine triggering Celiac diesase today.

see this link that talks about this topic on celiac.com

https://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html

summarizing in case you don't have time to read it yourself.

Note how the article starts quoting

“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 Celiac/NCGS diagnosis is what he is postulating.

He goes 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.

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”.

If even after a year OFF these medicines your chances of developing Celiac Disease (celiac disease) not to mention even NCGS which is much more prominent

surely the researcher is correct in postulating that there is a cause and effect relationship between low stomach acid and NCGS and/or Celiac disease.

it is my point that low stomach acid and gluten allergy has been establish and a connection between your anemia and your GI problems that gluten is triggering. seem reasonable to me.

if your stomach acid is not strong enough to cause burping it can't cut up gluten either.

I told someone else on this board.

I have study this topic exhaustively and it always comes down to timing.

Timing is everything right?

IF it Happens (your GI problems) when you eat any (food allergen like lactose or gluten) then your stomach acid is already too low to begin with.

IF it happens between meals (heartburn etc) then eating something would lower too high stomach acid.... thus eating would make it better ... not worse.

but since it happens when you eat your stomach acid is already too low to digest the food you are eating.

Yes even gluten IF it is strong enough can be cut up into harmless peptides like other viruses and bacteria are and what gluten is a to a celiac.

An invader. . .  but it (your body) need not be confused if the protein is digested in the stomach it can be metabolized as amino acid and peptides harmless in the small intestine because parts of the gluten protein doesn't set off the autoimmune on the intact protein does.

I have ramble too long again.

good luck on your continued journey.

*****this is not medical advice only my personal experience with Niainamide and Magnesium and my year of study on the topic.

Your experience might be different but I think it will be similar to those on this board who have taken it.

because I have learned if it helps you . . . it will help other's too!  the same way people's energy pickups and their charlie horses' get better when they take magnesium Citrate 3/day.  And other people on this board who have taken Magnesium who's energy get's better when they take it.

Again I hope this is helpful.

posterboy by the grace of God,

[Posterboy]

Freeneyja and jmg,

Previous thread getting a little too long so I needed to start another.

as to the columbia research I think it is the smoking gun of sorts for NCGS.

It seems clear to me that celiac is a "sprectum" of disease(s) and we get frustrated  we don't find them both in the same person.

and that is because they are the same disease in different stages.

here is a thread where I discussed the columbia research.

from my response quoting the care2 article (which I think summarizes the columbia research well.

Quoting

"People with suspected celiac are screened using a blood test that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity.

This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients."

Quoting again "However, celiac patients do not have an associated spike in their blood markers indicating high immune activity." that you might expect in blood panel so one could be negative (blood work and  one positive (biopsy) and they both are positive for Celiac diagnosis it just those with high immune activity have not YET blunted their villi the way one expects to find in "gold standard" biopsy.

Only if doctor's knew more about this latest research untold suffering could be avoided.

The good news as the care2 article summarizes

Quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming Open Original Shared Link, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized."

SADLY if Columbia University is right your Villi by the time the "biopsy" low immunity level has occurred then most of your villi have already been destroyed.

but since you failed the biopsy it should give you hope that your blood serology should at least show a weak positive and remember "Positive is Positive" even if they only recognize it as NCGS today.

I hope this helpful.

posterboy by the grace of God,

 

[Jmg]

I forgot before to say this:

Quote

Of course the doctor doesn't hear when I say it's not a Fodmap issue. I eat a high Fodmap diet and never have any problems...unless it's gluten. And I did much of my challenge with vital wheat gluten, so it's not a starch issue.  And I have a daughter who has stomach and neurological symptoms but couldn't get a diagnosis after a 6 week challenge and a son I'm watching very closely because he has dental enamel problems and has had headaches and thrown up when consuming gluten. So what is all of this?  Hereditary Fodmap Syndrome?? 

made me laugh.

Ever since that Monash study came out I've seen some commenters online or doctors eagerly dismissing NCGS as fodmaps. They don't seem to realise that the study didn't establish that fodmaps was the cause they simply suggested it was a more plausible than gluten. I don't blame the laymen, it was presented that way in so many poorly written articles, but the medical professionals should know better and go direct to the peer reviewed study rather than the sometimes deceptive synopses. 

From my reading the Monash study included IBS sufferers who associated their symptoms with gluten, there didn't seem to be any acknowledgment that NCGS patients present primarily none GI symptoms as you describe above.

So whilst all research is useful and there are undoubtedly some on the gluten-free diet who needn't be, the sensationalist way that dietary science is reported now has done some harm and every time I see on these pages people who are suffering symptoms way beyond the IBS range who have been told to go fodmap free I wonder just how much science is behind their doctor's reasoning. 

It's important as well because although gluten-free diet is difficult at times, it doesn't have to be unhealthy whereas a low fodmaps diet looks both tricky and very reductive in foods that are otherwise good for us.  So I don't like to think of people being put on it unneccesarily.

 

[Feeneyja]

I'm now in my second week gluten free after my negative endoscopy. Only 4 week challenge.  One of the symptoms that is persisted, although somewhat better, is dizziness.  I'm still having C, but less mucus. I'm assuming that will get better over time. But the dizziness confuses me. 

During my challenge I definitely experienced symptoms of anemia. In fact  my eye lids were definitely getting paler (observed by me and my family), my gums were getting sore and inflamed to the point that my teeth started to feel loose/unstable and it hurt to chew, as well as dizziness, fatigue, cold.  Within a week of removing gluten again I noticed these symptoms improving. In fact my eye lids look remarkably better, my gums are better and I now no longer feel like I will lose teeth if I chew meat or nuts. But I'm still somewhat dizzy and fatigued. 

I contacted my GP via MyChart and he ordered a CBC and TSH. Both were normal. He also ordered the adult celiac panel. I seriously doubt anything positive on that one since I only had a 4 week challenge and was gluten free 1 week by the time he ordered it. But oh well. Still waiting on those tests plus ANA.

Anyway, can you have anemia and a normal CBC?  Are there red flags in the CBC that might be normal but still hint at anemia?  I know many of you have had anemia, so I thought I would ask.  

I do have a history of anemia when I was young. I don't know what the lab values were. It's just something I was told as growing up and would be turned away from blood or plasma donations because of it. 

Im going to make a follow up appointment with my GP once the labs are in and I want to have the right questions. 

Thanks. 

[cyclinglady]

1 hour ago, Feeneyja said:

I'm now in my second week gluten free after my negative endoscopy. Only 4 week challenge.  One of the symptoms that is persisted, although somewhat better, is dizziness.  I'm still having C, but less mucus. I'm assuming that will get better over time. But the dizziness confuses me. 

During my challenge I definitely experienced symptoms of anemia. In fact  my eye lids were definitely getting paler (observed by me and my family), my gums were getting sore and inflamed to the point that my teeth started to feel loose/unstable and it hurt to chew, as well as dizziness, fatigue, cold.  Within a week of removing gluten again I noticed these symptoms improving. In fact my eye lids look remarkably better, my gums are better and I now no longer feel like I will lose teeth if I chew meat or nuts. But I'm still somewhat dizzy and fatigued. 

I contacted my GP via MyChart and he ordered a CBC and TSH. Both were normal. He also ordered the adult celiac panel. I seriously doubt anything positive on that one since I only had a 4 week challenge and was gluten free 1 week by the time he ordered it. But oh well. Still waiting on those tests plus ANA.

Anyway, can you have anemia and a normal CBC?  Are there red flags in the CBC that might be normal but still hint at anemia?  I know many of you have had anemia, so I thought I would ask.  

I do have a history of anemia when I was young. I don't know what the lab values were. It's just something I was told as growing up and would be turned away from blood or plasma donations because of it. 

Im going to make a follow up appointment with my GP once the labs are in and I want to have the right questions. 

Thanks. 

A CBC would check for size of blood cells, number of blood cells and hemoglobin levels, etc.  If you are within range, you probably would not be considered anemic.  A ferritin test (iron stores) can be checked too.  If very low, it starts to create symptoms.  

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[Feeneyja]

My numbers are right at the lower border of in range. I don't know if that's significant. Hemoglobin 12.7.  When I had surgery a year ago it was 10.3 afterwards. 

I have heard of testing ferritin. Does low ferritin but normal CBC indicate anemia? I'm also wondering how quickly a CBC rebounds versus low ferritin if you have compromised iron absorption. 

[cyclinglady]

My anemia resolved with a few months of a gluten-free diet and I had moderate to severe intestinal damage.  My hemoglobin has never been in the normal range (I have a genetic anemia on top of the iron-deficient anemia).  Your result seems fine.   A low hemoglobin is below a 7 or so.  That is when doctors start pushing for transfusions.  You also have a hard time catching your breath at that point.  My ferritin was a 2 and is now around a 55.  Your body is miraculous and can spring back fine.  

Sure your hemoglobin dropped after surgery.  It probably drops when you have a period too.  

I would look for another cause of your fatigue, etc.  

[Feeneyja]

It's mostly the dizziness.  I expected it to be gone by now.  I really thought it would be related to anemia.  But I guess not.   It's better than before, but still disconcerting and makes me uncomfortable driving sometimes.  I guess I should just give it more time. It's probably just gluten on the brain and it takes time. 

[squirmingitch]

My dizziness took a while to go away & when it began to go away, it became fewer times per day until it would only be once or twice on some days. Just slowly lessening in intensity and occurrence. It took months, maybe 6 months or more but I can't remember exactly & didn't write down exactly how long each symptom took to resolve.

[Jmg]

2 hours ago, Feeneyja said:

It's mostly the dizziness.  I expected it to be gone by now.  I really thought it would be related to anemia.  But I guess not.   It's better than before, but still disconcerting and makes me uncomfortable driving sometimes.  I guess I should just give it more time. It's probably just gluten on the brain and it takes time. 

I think that's the answer. You can see plenty of others experiencing the same:

My own experience is that my neuro symptoms took longer to go. The exception to this would be brain fog which happily lifted pretty quickly.

I get occasional POTS on standing or a kind of sensation from in my head sometimes which is really difficult to describe which I think may relate to cross contamination but I don't neccesarily get any GI. I think its those symptoms which are maybe last to go, first to show...

[Ennis-TX]

I have recently this week done something rather daft and can relate to the dizzy issues. I have a Mantoba Hemp Protein...not labeled gluten free, I got it while on sale. Tested it came back positive on nima, and since I got a case of the stuff I went ahead and had it lab tested. Lab results came back with 6ppm.....SO I decided it eat it anyway. I am not vomiting like I do normally ,but I am dropping stuff, burning myself (grabbed the muffin tin out of the oven this morning and walked it across the room not noticing half my hand was off the pot holder), being dizzy, and having nerve issues more along with looser stools.....4 times a day. Also noticing I am making some other mistakes and off decisions as of late. Funnly little quirks, I am almost done with the first container from the lot then I am stopping it for at least 2 months perhaps try to sell it off to someone. Bit concerned about damages I might be doing.

[Victoria1234]

16 hours ago, Ennis_TX said:

I have recently this week done something rather daft and can relate to the dizzy issues. I have a Mantoba Hemp Protein...not labeled gluten free, I got it while on sale. Tested it came back positive on nima, and since I got a case of the stuff I went ahead and had it lab tested. Lab results came back with 6ppm.....SO I decided it eat it anyway. I am not vomiting like I do normally ,but I am dropping stuff, burning myself (grabbed the muffin tin out of the oven this morning and walked it across the room not noticing half my hand was off the pot holder), being dizzy, and having nerve issues more along with looser stools.....4 times a day. Also noticing I am making some other mistakes and off decisions as of late. Funnly little quirks, I am almost done with the first container from the lot then I am stopping it for at least 2 months perhaps try to sell it off to someone. Bit concerned about damages I might be doing.

That sounds so scary Ennis! 6ppm is not what anyone would expect to cause issues. Please keep us updated on how you are doing.

[Ennis-TX]

1 hour ago, Victoria1234 said:

That sounds so scary Ennis! 6ppm is not what anyone would expect to cause issues. Please keep us updated on how you are doing.

6 bowl movements this morning, down 3lbs in 2 days, and starting to get the cramping...I think it is accumulating/building up my antibody count over time. Stopping it and giving it away, this is not worth it as it is obviously causing damage. Even super low dosing like this, I am good in the morning but I am foggy and dazed in the afternoons and evenings just sitting around. I am just amazed I am not vomiting or having constipation like normal. I imagine the C will hit this next week.

[Victoria1234]

4 minutes ago, Ennis_TX said:

6 bowl movements this morning, down 3lbs in 2 days, and starting to get the cramping...I think it is accumulating/building up my antibody count over time. Stopping it and giving it away, this is not worth it as it is obviously causing damage. Even super low dosing like this, I am good in the morning but I am foggy and dazed in the afternoons and evenings just sitting around. I am just amazed I am not vomiting or having constipation like normal. I imagine the C will hit this next week.

I'm so sorry! That's just terrible.

Can you try to sell it on eBay perhaps? Get a bit of your money back?

[Feeneyja]

Oh no!  I'm so sorry about what you are going through Ennis!  I have wondered what low doses of gluten over time would do. Especially if one is more sensitive.   

Stay hydrated and rest.  And get rid of that stuff!

I'm wondering if my dizziness was from glutening myself. It was getting better but then it surged again twice. The first time was when I was cleaning the kitchen of a rental property we are getting ready to sell. I ate a handful of fruit and nuts but didn't wash my hands. The second time was yesterday. I also started getting a mouth sore. I had a book group meeting at Panera Bread the day before. I brought my own coffee, but I'm wondering about the surfaces of the table and chairs. Today the mouth sore is starting to go away (instead of getting worse, as it did during my challenge) and the dizziness is better. 

Or maybe it's all just on the continuum of getting better. Some ups, some downs. 

[Feeneyja]

Two and a half weeks gluten free now post challenge. I was still dizzy and fatigued so I started taking an OTC iron supplement (65mg) and after about 3 days felt better than I have in over a month. The dizziness was mostly gone and I had way more energy.  I wanted my GP to test my ferritin but he only did a CBC. My hemoglobin was 12.7, so not anemia (but potentially iron deficient?).  

I also had asked my GP to run a comprehensive celiac panel. It was a week post going gluten-free again. But recent research shows that antibodies can continue to rise up to 6 weeks after going gluten-free.  The current algorithm for testing those on a gluten-free diet includes retesting antibodies up to 6 weeks later if celiac is suspected but negative blood work (see attachment).  But it wasn't the full panel. Just TTG, EMA, and total IGA.  Negative. 

Im seeing my GP next week for a follow up. And I'm bracing for the it's in your head conversation.  I realize that at this point, with only a 4 week challenge, 3 years mostly gluten-free prior to that, and now 2 and a half weeks return to gluten-free, that there is nothing more to do other than remain gluten-free. 

But there is this part of me that really wishes I knew one way or another for sure.  (I know, I'm whining now). My sisters don't believe me.  One has Type 1 diabetes and when I told her that celiac screening is recommended, she told me it is overkill. She has her Ph.d. In molecular biology and immunology, so in her mind, she knows better. But she also told me that "classic immunology " says that it won't take 12 weeks to mount a detectable immune response.  My other sister told me that it's just stress and she sometimes gets those same symptoms (diarrhea, bloating, mucus, fatigue, joint pain), and it's just stress for her too.  

But while visiting her in Wednesday, I drank a cup of coffee. I'm not saying the coffee contained gluten. But the kitchen is used for bread making. That night I was nauseated with gurgling gut, Thursday very bloated, today I woke up with a headache and feeling nauseated, still gurgling gut.  This was the exact same pattern I noticed before the gluten challenge.  It would take about 2-3 days to really feel bad, getting worse every day. Which is why I wonder if it's more than NCGS, but will never know.

OK.  Done with self pitying rant.  

 

[Jmg]

1 hour ago, Feeneyja said:

But there is this part of me that really wishes I knew one way or another for sure.  (I know, I'm whining now).

No it's a natural response and I share it too. It's nearly 3 years since I had my negative result and I still wonder about whether its NCGS or Celiac that slipped through the net or something else or its all in my head and I need to see a shrink   It gets easier in time but I will always wish I'd had the certainty of a definitive diagnosis. 

 

[cyclinglady]

I am glad that the iron seems to be helping, but I would not advise going over the daily recommendations unless you know your ferritin level.  You can over dose on iron.  

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[Feeneyja]

I hear you cyclinglady. I'll hold off until I see the doctor next week. 

[Ennis-TX]

Few things addressing the last few post,

1. try taking a vitamin C supplement, I drink a liquid form in a drink, with the iron the vitamin C works to help your body absorb the iron. I found no matter how much I took it would do nothing to my levels til I used vitamin C then I significantly lowered my dose and my levels normalized.

2. I feel you about wanting to have the family tested and others you see with symptoms that claim they do not and refuse to get tested, my adoptive mother, has RA, bloating, gas,  headaches, shakes, dizziness, thyroid issues galore for years, and the reason she adopted me was due to issues with her immune system going crazy and attacking the fetus and being unable to have kids. I did suggest she might try getting tested for celiac or another AI issues but she refuses to this day. Even if we are not related by blood, I still feel she might have it...so many common symptoms, Part of the reason I thought all this stuff was normal lol.

3. The coffee things, the cup could have been contaminated, it could have been from must being the kitchen, if you stirred you coffee with a spoon....metal spoons in others houses I found are notorious for having gluten in the scratches etc on them I found. Flour hangs in the air for hours when used....half the dang kitchen surfaces are CCed if she cooks fresh bread. .....I like my bubble life lol. Might do what I do when I visit my family, I use medical dust mask and gloves.....I found I have to wear a respirator at her house if I decide to do chores over there and help out. I do this often for her by going over there and cleaning, vacuuming (vacuum stirs and blows all kinds of gluten crumbs, flour, etc everywhere), and dusting. >.> I might be strapped for money to buy gifts but mothers really seem to like it when you got out of your way to clean for them, make food, etc.

[knitty kitty]

There's this explanation:

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