Been severely let down and at my wits' end

[DJFL77I]

My b1 pills are coming Sept 1 😑

I get my vit mineral tests on Sept 2 

[Posterboy]

57 minutes ago, DJFL77I said:

My b1 pills are coming Sept 1 😑

I get my vit mineral tests on Sept 2 

Knitty Kitty and DJFL et al,

I don't know how to do  multi quote over two pages in the forum...

DJFL.....Knitty Kitty has given you good advise.

 So I am just copying and pasting her reply here... quoting Knitty Kitty

"I'll say it again.....

Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.  It's rare to have a deficiency in just one vitamin or mineral in Celiac Disease.

"Niacin for treatment of nonalcoholic fatty liver disease (NAFLD)"

https://www.lipidjournal.com/article/S1933-2874(19)30290-9/fulltext

And stay away from high fructose corn syrup (soda pop) because HFCS is processed through the liver just like alcohol.

😸 P.S.  low tryptophan (a form of niacin) is associated with low ferritin...."

It is me again....

See this article by Londsale but be sure to read the comments.....and where I will quote from....

https://www.hormonesmatter.com/allergies-autonomic-response-thiamine/

quoting comments by Lonsdale...

Derrick Lonsdale says:

October 18, 2018 at 3:32 pm

The Mayo Clinic only does the first part of the test and I would not support it either. Shows the resolute rejection of thiamine deficiency as a medical problem. If anyone does the TKA entity on its own it will be normal even if TD is the cause. The symptoms of TD are so ubiquitous that it imitates other “more acceptable” modern diseases. Remember that the medical profession rejects beriberi as an ongoing disease in America. They say “It JUST DOES NOT HAPPEN” so the symptoms are attributed to other diseases, the favorite being “psychosomatic”.

I hope this is helpful but it is not medical advise.

Posterboy,

[Posterboy]

To All,

I am go to cite this article that I came across recently....and yes it is two or three years old but it outlines well.....very well the medical industries idea about how it thinks about vitamins versus drugs....

NOTE: I am not saying this....an insider IE or Other doctor's who work in the medical field is saying this, mind you.

I am only reporting the news, so to speak.  I was going to start another thread with the article names as the name of the thread.....(and I might still do that) sooooo it will be easier to find in the future....

This is for DJFL et al......I know Knitty Kitty already gets this...

Quoting the NPR article...."Doctor Turns Up Possible Treatment For Deadly Sepsis"

"Taxpayers and drug companies have spent billions of dollars searching for an effective treatment for sepsis. Drug companies could reap billions in profits if they can develop a successful treatment for this common and often fatal disease.

But profit is not the motive here, Marik says. The ingredients cost about as much as a single dose of antibiotics.

"I obviously have no vested interest," he says. "Nobody's going to make money from this (Vitamins) — so this is a very anti-capitalistic thing!"

When you read the article it will mention Vitamin C a lot....but reread it a few times if you have too....

It is easy to read over...so I will quote a little bit of it your draw your eye to it....because it would be easy to miss as you read it...

quoting again....

"Marik had recently read a study by researchers at Virginia Commonwealth University in Richmond. Dr. Berry Fowler and his colleagues had shown some moderate success in treating people who had sepsis with intravenous vitamin C.

Marik decided to give it a try. He added in a low dose of corticosteroids, which are sometimes used to treat sepsis, along with a bit of another vitamin, thiamine. His desperately ill patient got an infusion of this mixture.

"I was expecting the next morning when I came to work she would be dead," Marik said."But when I walked in the next morning, I got the shock of my life."

The patient was well on the road to recovery.".....

quoting again...

"After he'd treated 50 patients, he decided to write up his results. As he described it in Chest, only four of those 47 patients died in the hospital — and all the deaths were from their underlying diseases, not from sepsis." which thiamine helps prevent...

Here is the latest study on it from 2020...entitled "Thiamine (vitamin B1) in septic shock: a targeted therapy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7024754/

where they concluded quoting

"Thiamine supplementation in septic shock appears to be safe and may benefit certain septic shock populations at increased risk for thiamine deficiency."

Great you are thinking it helps Sepsis.....but I don't have Sepsis.....but as a Celiac you could have developed Refeeding Syndrome (as I did) and it a metabolic precursor to Sepsis aka "Toxic Shock" and the doctors are missing the earliest signs of Sepsis.....before it happens....and is midiagnosed in 50% of patients....

See my experience with me going undiaignosed in/with my Celiac diagnosis...

 You want to catch these things before you end up in the hospital!

Horrible FATIGUE is a Classic Sign of a Thiamine Deficiency. And I had it in spades.....and you will have "Electrolyte Imbalances".....several of which I had but was not noticed because I was not an Alcoholic!

Read the whole blog post and you will see what I mean "Electrolyte Abnormalities".

I hope this is helpful but it is not medial advise.

Posterboy,

[Posterboy]

DJFL,

Here is the research Knitty Kitty mentioned about HFCS entitled "Fructose: It's “Alcohol Without the Buzz"

https://academic.oup.com/advances/article/4/2/226/4591631

Order Benfotiamine and take it with meals and it will help you....

ThiamineHCL (found in many B-complex Vitamins) usually is on absorbed from 5 to 10 pct max!

I hope this is helpful but it is not medical advise.

Posterboy,

[NeverLikedRollercoasters]

So, no to the hemochromatosis since my ferritin is in check. He ordered the iron test again in case the labs were faulty. He didn't order the genetic test because the labs don't show it, but he agreed getting the thiamine checked. Funny thing was the nurse didn't quite know how to handle the thiamine blood draw. I guess they don't do it too often and there's some specific handling of the sample like keeping it out of sunlight and freezing it or something to that effect. Anyhow, 1 more week to get those results. My next step is rheumatologist/immunologist, then I guess I've run out of things to check and just have to assume gluten is the cause of my weird tests/symptoms.

[cyclinglady]

1 hour ago, NeverLikedRollercoasters said:

So, no to the hemochromatosis since my ferritin is in check. He ordered the iron test again in case the labs were faulty. He didn't order the genetic test because the labs don't show it, but he agreed getting the thiamine checked. Funny thing was the nurse didn't quite know how to handle the thiamine blood draw. I guess they don't do it too often and there's some specific handling of the sample like keeping it out of sunlight and freezing it or something to that effect. Anyhow, 1 more week to get those results. My next step is rheumatologist/immunologist, then I guess I've run out of things to check and just have to assume gluten is the cause of my weird tests/symptoms.

Please share your thiamine results.  Other than Knitty Kitty, no forum member has had this test done or found to be deficient.  I also know that deficiencies co-exist in undiagnosed, non-compliant,  and refractory celiacs.  I am just curious.  

[NeverLikedRollercoasters]

27 minutes ago, cyclinglady said:

Please share your thiamine results.

I certainly will. Like Knitty Kitty, if I can help someone else who is having as much of a hard time as me getting any kind of diagnosis, I will be happy to help. This is complete utter hell not knowing what is wrong when I get so sick and doctors just shrug and/or not order the proper tests at the right time. I'm disgusted by it really.

[DJFL77I]

isn't B1 already checked in any normal Vitamin / Mineral panel?   For example: 

 The Vitamins Blood Test Panel includes a Vitamins A, B1, B6, B9(Folic Acid), B12, C, D,E, and K1. Preparation: Fasting for 12 hours is required.

https://www.walkinlab.com/products/view/vitamins-blood-test-panel

 

In conjunction with whole blood or erythrocyte transketolase activity preloading and postloading, a thiamine loading test is the best indicator of thiamine deficiency. An increase of more than 15% in enzyme activity is a definitive marker of deficiency.

For practical reasons, replacing thiamine as an initial test may be most feasible. If the patient responds to treatment, it is safe to assume that a measure of thiamine deficiency was responsible for the condition. Thiamine is not toxic in high levels, which means that this route carries little risk. In addition, time is saved in treating the patient and money is saved in testing.

https://www.medscape.com/answers/116930-91237/how-is-beriberi-thiamine-deficiency-diagnosed#:~:text=In conjunction with whole blood,a definitive marker of deficiency.

[DJFL77I]

On 8/27/2020 at 7:08 AM, NeverLikedRollercoasters said:

Were you still eating gluten? By the time I got the biopsies taken I was 7-8 months gluten-free.

yes

[NeverLikedRollercoasters]

12 minutes ago, DJFL77I said:

isn't B1 already checked in any normal Vitamin / Mineral panel?

I have not had a full panel test for vit/min. Over the course of the past year, I've had tons of tests. None of them include B1/Thiamine. I have only been tested for iron, B12, and vitamin d (I was deficient in this one). Like I said, seemed as though they never tested B1 before in the hematologist office.

[DJFL77I]

ive only been tested for b12 and iron..  I'll get them all check though this week finally

[Posterboy]

16 hours ago, Posterboy said:

Derrick Lonsdale says:

October 18, 2018 at 3:32 pm

The Mayo Clinic only does the first part of the test and I would not support it either. Shows the resolute rejection of thiamine deficiency as a medical problem. If anyone does the TKA entity on its own it will be normal even if TD is the cause. The symptoms of TD are so ubiquitous that it imitates other “more acceptable” modern diseases. Remember that the medical profession rejects beriberi as an ongoing disease in America. They say “It JUST DOES NOT HAPPEN” so the symptoms are attributed to other diseases, the favorite being “psychosomatic”.

1 hour ago, cyclinglady said:

Please share your thiamine results.  Other than Knitty Kitty, no forum member has had this test done or found to be deficient.  I also know that deficiencies co-exist in undiagnosed, non-compliant,  and refractory celiacs.  I am just curious.

51 minutes ago, NeverLikedRollercoasters said:

I have not had a full panel test for vit/min. Over the course of the past year, I've had tons of tests. None of them include B1/Thiamine. I have only been tested for iron, B12, and vitamin d (I was deficient in this one). Like I said, seemed as though they never tested B1 before in the hematologist office.

1 hour ago, DJFL77I said:

isn't B1 already checked in any normal Vitamin / Mineral panel?   For example: 

 The Vitamins Blood Test Panel includes a Vitamins A, B1, B6, B9(Folic Acid), B12, C, D,E, and K1. Preparation: Fasting for 12 hours is required.

https://www.walkinlab.com/products/view/vitamins-blood-test-panel

Never Liked Roller Coasters and DJFL Et Al,

Because B1 tests are rarely performed unless your an Alcoholic and probably been admitted to the ER it can be hard to get an accurate test result.

For example DJFL link said to fast for 12 hours.....I have never been told to ever fast that long for a test...

8 hours is all I have ever fasted for a blood test.....and often they don't even ask me to fast any more before my blood tests....

See this hormones matters link that explains why it is hard to get an accurate Thiamine blood test....

http://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

Of note: there are only two labs listed in the US that performs this type of test.....whole blood Thiamine is usually the test run.....see note above about Mayoclinic tests....giving a false outcome..

from understand the testing labs link

"In order to test thiamine deficiency, one must request transketolase testing. Not all labs can perform this test and so many will substitute the simple blood vitamin B1 testing. This test is insufficient for detecting thiamine deficiency for the reasons stated above. In this case, you may have to advocate on your own behalf and find the appropriate lab testing service."

So you go way being lead to believe it is not Thiamine and it still could be!

I personally was never offered to be tested for a Thiamine deficiency because the doctor's didn't know to look for it.

So I applaud you for getting this far.....I just hope you got the right test and one is not being substituted for the other leading people to believe thiamine is not your problem and still could be.

FATIGUE will definitely be a problem for you if Low Thiamine is your problem!

I hope this is helpful but it is not medical advise.

Posterboy,

[DJFL77I]

I'm always told to fast for 12 hours 

[Posterboy]

Never Liked Roller Coasters and DJFL Et Al,

So as to keep the other reply length manageable....I have started another reply.

I don't think I would of tested low in Thiamine anyway for the above reasons plus one  more.

I found Magnesium FIRST....and it act's like a Primer for Thiamine and anyone taking Magnesium Citrate or Glycinate can use the Thiamine people are eating.....thus forestalling fatigue...

Magneisum deficiency will also bring on fatigue.....but it also brings on Charlie  Horses (Muscle cramps/spasm)

The Thiamine deficiency will cause fatigue plus Tingling in your extremities (like burning hands and feet) IE Paresthesia ....a sign of nerve damage brought on by Low Thiamine.

I had both (or all) these symptom's....my fatigue and muscle cramps got better with Magnesium Citrate with meals.

I was giving B12 for the burning hands and feet.....IT did not get better until I took some Benfotiamine with meals a couple years latter and the "Pins and Needles" from a Thiamine deficiency has been gone since!

A Thiamine and Magnesium deficiency occur together....because Magnesium is a cofactor for Thiamine taking Magnesium Citrate before a Thiamine deficiency test might cause you to test normal even if Thiamine is still the trigger for your problems.  And why it is best to not start supplementing until all tests are completed.

If YOU think you have gotten the right/proper Erythrocyte Transketolase test for a Thiamine deficiency test then there is no harm in now beginning the Befotiamine or Allithiamine and see if your symptom's improve.

Again Thiamine supplementation works best with Magnesium Glycinate or Mangesium Citrate!

Here is a couple links on Magnesium.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

Here is the link to a Thiamine deficiency when one in low in Magnesium entitled

"Aggravation of thiamine deficiency by magnesium depletion. A case report"

https://pubmed.ncbi.nlm.nih.gov/4050546/

Remember both a Magnesium deficiency and a Thiamine deficiency will produce fatigue so they are best taken together.

I hope this is helpful but it is not medical advise.

Posterboy,

[NeverLikedRollercoasters]

Wow Posterboy, thanks for all of that. It's quite over my head. I did try to pronounce that test properly to my doctor and I'm sure he knew what I was saying, however, I don't know exactly what he ordered. All I know is i read on Quests site prior to going to the doc that there's specific handling for the sample, and watching/hearing the nurse try to decipher it in the office, I'm pretty sure it's the right one but I'll have to wait until I see the results to check. 

I'm not entirely convinced that's my issue though. I still strongly believe I'm celiac and that's my main problem. I have all the classic symptoms plus some. Symmetrical rash on both ring fingers, vitamin d deficiency, horrible GI problems, some neuro problems and now liver oddness. My main issue is I can't prove it right now other than the 2 times I intentionally ate gluten and got extremely sick. But there's numerous other times I got sick too and all I can do is trace it back to within 24 hours prior that something may have contained gluten and/or non certified oats.

Dairy has always given me minor stomach upset, but the last time I had liquid dairy, I had explosive d within 30 minutes. The last time I got sick was from frozen processed chicken that said it was gluten-free but not certified. Then 3 weeks later got sorta sick again after cooking with too much gluten-free soy sauce.  The more doctors tell me they can't find anything seriously wrong with me, the more I lean towards celiac disease. I was just unfortunate enough to have a series of dismissive doctors and I'm at a point now that I can no longer get properly tested for it.

[Posterboy]

4 hours ago, cyclinglady said:

Please share your thiamine results.  Other than Knitty Kitty, no forum member has had this test done or found to be deficient.  I also know that deficiencies co-exist in undiagnosed, non-compliant,  and refractory celiacs.  I am just curious.  

1 hour ago, NeverLikedRollercoasters said:

Symmetrical rash on both ring fingers,

1 hour ago, NeverLikedRollercoasters said:

Wow Posterboy, thanks for all of that. It's quite over my head. I did try to pronounce that test properly to my doctor and I'm sure he knew what I was saying, however, I don't know exactly what he ordered. All I know is i read on Quests site prior to going to the doc that there's specific handling for the sample, and watching/hearing the nurse try to decipher it in the office, I'm pretty sure it's the right one but I'll have to wait until I see the results to check. 

Never Liked Roller Coasters and Cyclinglady,

I have written a Posterboy blog post that might help you.

https://www.celiac.com/blogs/entry/2731-a-case-for-thiamine-supplemenation-in-celiacs-if-only-for-a-season-in-time/  

I have tried to share my experience so that others might be helped by my suffering going undiagnosed.

The symmetrical rash could be the first sign that pellagra is developing....

It (Pellagra) like Cyclinglady notes about Beri Beri too is hard to diagnose by tests.....instead just taking the B-Complex with Benfotaimine is usually enough to treat the symptom's.

Cyclinglady (correct me if I am wrong) JM34 (Or someone close to that name) once tested for a Niacin deficiency and they found him to be borderline low....then we lost contact with him....

B-Vitamin deficiencies don't happen in uncomplicated way (usually) they occur together....

See this article about a case of Pellagra in America...

https://casereports.bmj.com/content/12/9/e230972

I will quote the test results...

"Vitamin testing revealed normal B12 and folate levels but undetectable levels of thiamine, riboflavin and niacin. Her symptoms and signs resolved entirely with appropriate vitamin supplementation.

Pellagra in Italian means "rough skin" and hence the name that comes to us...

The clinical delay in recognizing vitamin deficiencies in Celiac's is causing many treatable co-morbidities like fatigue to go untreated when a simple supplementation program can help in addition to going gluten free....

These are complimentary things....

https://www.celiac.com/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/

Micronutrients are low in Celiac's.....it is not well known but recent research is now bearing this out...

https://www.celiac.com/blogs/entry/2714-mayo-clinic-study-shows-micronutrient-deficiencies-are-still-common-in-contemporary-celiac-disease-despite-lack-of-overt-malabsorption-symptoms/

And it should be noted that Low Thiamine levels has been shown to Thin Villi in Mammals....

Here is an article about it...

https://www.celiac.com/celiac-disease/how-low-thiamine-can-thin-villi-old-research-rediscovered-and-its-clinical-significance-in-celiac-disease-r5100/

I would also recommend this youtube link to you...entitled "Is Thiamine Deficiency Destroying Your Digestive Health Why B1 Is ESSENTIAL For Gut Function"

https://www.youtube.com/watch?v=Pi0O_fzczYA

It is little over an hour....so I will give you some notes (bookmark) of things to look for that I made for myself....so you won't have to watch it all.....and give you some points to look at briefly...

30 minutes GI  or Intestine contractions
35 minute reduces brush border enzymes like Lactose Interolance

I am not sure why links are not  underlining....just select and highlight link right click and open in a new tab.

Note: they were diagnosed with Pellagra a CAPSTONE diagnosis but they had already developed Beri Beri and Pellagra Sine Pellgra (which is what happened to me) evidenced by undetectable levels of Riboflavin and Niacin.

Meaning they (the doctors) had already missed two Cornerstone diseases triggered by B-Vitamin deficiencies before the capstone symptom's developed of per fuse skin lesions....

As I once said in a Posterboy blog post Vitamins these days have a KIA problem....Knowledge, Image and Awareness problem.

https://www.celiac.com/blogs/entry/2672-do-you-have-a-jaguar-or-a-kia-in-your-driveway-or-why-vitamins-have-a-kknowledge-image-and-a-awareness-issues-today…and-why-people-prefer-jaguars-over-kia’s-to-this-day…/

I hope this is helpful but it is not medical advise.

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

Posterboy by the grace of God,

ETA: I had been severely let down by my doctor's too! And frustrated by the test's to diagnose these Vitamin deficiencies so I feel your pain! The Jaguar model of medicine can really slaughter patients health sometimes.

See this recent thread started about your issues about Vitamins deficiencies in Celiac's and how they (Vitamin deficiencies) are often missed in Celiac's.

 

Edited August 29, 2020 by Posterboy
Add ETA message plus thread about Vitamin Deficiencies may be the only sign of Celiac Disease

[NeverLikedRollercoasters]

Posterboy, too kind. Thank you for all the info. I'll hit the links later on. Just for reference, this picture was taken last year the first time it occurred about 3-4 weeks after when all the blisters popped. I posted this in a thread under the DH section a few days back too.  It only comes about a week after I get my first symptoms (migraine/troubled GI). Lasts about 4 weeks or a little more then goes right back to normal. At that time, it was only on my right hand, but now it's the same thing on both hands. It's so super itchy. I have some cream from the dermatologist (forget what it is). I don't use it because it just irritates it more and causes skin cracking, so I just endure the irritation and try not to touch it.

[DJFL77I]

have you tried lotrimin ultra

not sure if thats what i had.. but a few years back before all this celiac BS was diagnosed..  i always had this recurring spot on right my hand in between my middle finger and index finger..  it was very itchy and would get this very thick leathery skin.. lotrimin ultra always got rid of it.. but it always came back again a month or two later... i always thought it was from my computer mouse having bacteria

now its been gone and has never returned...  not sure if its because im off gluten or what

[DJFL77I]

https://www.walmart.com/ip/Lotrimin-Ultra-1-Week-Athlete-s-Foot-Treatment-Cream-0-42-Ounce-Tube/45594072?wmlspartner=wlpa&selectedSellerId=0&&adid=22222222227000000000&wl0=&wl1=g&wl2=c&wl3=42423897272&wl4=pla-51320962143&wl5=9012430&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=online&wl12=45594072&veh=sem&gclid=CjwKCAjwnK36BRBVEiwAsMT8WDgY87l_NjxP5ZjbX9k1vSV124rDzZMgEuBjCSmIShVmwH_ov5X4lRoC2R8QAvD_BwE

[NeverLikedRollercoasters]

1 hour ago, DJFL77I said:

have you tried lotrimin ultra

I haven't tried that one. Last year, this was one of the first things I noticed popping up in me. Quite a while before I started having horrible GI issues and I was still eating gluten. Right around the time my GI issues really ramped up, it really blew up and was pretty much a constant rash for about 4 months straight. This year, it's been kinda dormant I guess but since January, I've had 4 times I've had some reaction to food. About a week into each illness, this has reappeared and spread to my other hand in the same location almost exactly. It's the longest running symptom I have. 

I have tried just regular lotions that seem to make it sting more. I've also tried burt's beez salve and although that helps overnight, it still causes stinging and is not worth it. 1 product my wife has is an organic/natural product by oway that really does help with the pain, but does little to help with the rash.  My best bet is to just leave it alone and let it run it's course. As of right now, it's gone after my last illness 2 months ago.  

The really weird part about this is on my left hand, this is the same finger that I get an odd electrical shooting sensation that starts from my left pec all the way down to the last joint on that finger. Haven't actually felt that sensation since the time before last maybe 6 months ago.

[DJFL77I]

might be celiac rash..  Dermatitis Herpetiformis

[NeverLikedRollercoasters]

10 minutes ago, DJFL77I said:

might be celiac rash..  Dermatitis Herpetiformis

I really think it is.  I did have it biopsied when it was inflamed back in Jan but I'm not convinced they did it right. I watched her use the 'core tool' right on top of one of the blisters. I've since read that it needs to be next to it. Pathologist came back with dyshidrotic eczema. Strange it only appears after getting sick though. I'm half expecting to start getting it elsewhere on my body in the future. If it does I'll have another biopsy since I think I'll never get the intestinal biopsy at this point. The closest pic I've found is the 3rd one down of the finger here:  https://theceliacscene.com/sister-celiac-disease-dermatitis-herpetiformis/

[Posterboy]

On 8/29/2020 at 12:47 PM, NeverLikedRollercoasters said:

All I know is i read on Quests site prior to going to the doc that there's specific handling for the sample, and watching/hearing the nurse try to decipher it in the office, I'm pretty sure it's the right one but I'll have to wait until I see the results to check.

Never Like Roller Coasters,

I am pretty sure you got a Whole Blood Thiamine test and not the ETKA test recommended by Dr. Lonsdale to measure the EKTA activity for a true Thiamine deficiency.

See the Hormone Matters links above about understanding the Lab Tests results...

It is no one's fault....your doctor can only order the Thiamine tests that are available.

At least in North America Circa 2017 according to Chris Masterjohn NO commercial labs offers the ETKA test for a true thiamine deficiency.

https://www.youtube.com/watch?v=pNAKJgmirak&feature=youtu.be

Note: around the 25 minute mark...through the end of of video he mentions again around 31-32 minute mark.

So don't be surprised if you test "Low Normal" for Whole Blood Thiamine like JM34 did for Niacin.

The good news supplementation (and your positive response to) Benfotiamine or Allithiamine is sufficient enough to confirm a Thiamine deficiency in the absence of a ETKA test.

See this Merck Manuals article about it...

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency?media=print

quoting

"The diagnosis of thiamine deficiency is based on symptoms.

Tests to confirm the diagnosis are not readily available.(Like the ETKA test) Blood tests to measure electrolyte levels are usually done to exclude other possible causes.

The diagnosis is confirmed if thiamine supplements relieve symptoms."

Since it is assumed that Beri Beri or a Thiamine Deficiency only occur in Alcoholics doctor's and test are not designed to confirm this deficiency since IF you don't drink you can't have it mentality cause's it to go un-diagnosed in 80% of the cases!

It is why Dr. Lonsdale, Dr. Marrs, Eliott Overtona of EON Nutrition and Chris MasterJohn plead (Like in the youtube link above) PLEAD  with commercial labs to make the ETKA test available in the USA.

I hope this is helpful but it is not medical advise.

Posterboy,

[Posterboy]

On 8/29/2020 at 2:28 PM, NeverLikedRollercoasters said:

Posterboy, too kind. Thank you for all the info. I'll hit the links later on. Just for reference, this picture was taken last year the first time it occurred about 3-4 weeks after when all the blisters popped. I posted this in a thread under the DH section a few days back too.  It only comes about a week after I get my first symptoms (migraine/troubled GI). Lasts about 4 weeks or a little more then goes right back to normal. At that time, it was only on my right hand, but now it's the same thing on both hands. It's so super itchy. I have some cream from the dermatologist (forget what it is). I don't use it because it just irritates it more and causes skin cracking, so I just endure the irritation and try not to touch it.

Never Liked Roller Coasters.

Try you some Niacin (will cause flushing) but after a week on it.....the flushing will diminish and so will the itching....

If the flushing is a problem you can take aspirin with it....or better yet take some Quercetin and Luteolin with it.

Here is an article about it entitled "The flavonoid luteolin inhibits niacin-induced flush"

The Non-flushing form of Niacin sold as Niacinamide also has been shown to treat DH.

Here is a study of the successfully treatment of DH with Niacinamide with an antibiotic...entitled

"Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide"

https://pubmed.ncbi.nlm.nih.gov/30390734/

I would just leave off the Antibiotic and try the Niacin or Niacinamide.....you won't need to take both forms....they are the same Vitamin....

Here is a Posterboy blog post that will help explain how Niacinamide can help you.

https://www.celiac.com/blogs/entry/2161-time-for-a-vitamin%C2%A0reformation-why-all-the-hate-for-vitamins-these-days/

I hope this is helpful but it is not medical advise.

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,

[Posterboy]

Never Liked Roller Coasters,

Funny enough....there is a DH thread with the same name that will/can help you with getting up to speed on DH.

It explains how some other Celiac's have used Niacin to help with the itching DH causes.

Again I hope this is helpful but it is not medical advise.

Posterboy,