Relief! And it isn't Dapsone!

[emma6]

wow! to anyone else reading this now or in the future please take it with a grain of salt.. or the whole salt shaker haha

just because someone has doctor in front of their name doesn't mean everything they say is factual, reliable or unbiased.

 

3 hours ago, Posterboy said:

Dr. David Williams summarizes it well his article entitled "The one memory boosting nutrient you should be taking.

Linked here

Open Original Shared Link

This guy has a doctorate in chiropractics not medicine and a website dedicated to selling vitamins.

3 hours ago, Posterboy said:

Dr. Myhill in the UK gets it.  Vitamins can make us healthy and Niacinamide especially can help us more than most doctor's today realize.

See this link Open Original Shared Link

 

was suspended from practicing medicine Open Original Shared Link

 

[squirmingitch]

Thank you emma6!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Posterboy]

emma6,

Yes thank you.  Ooooooooooooooooooooops! of course I did not know her license had been suspended.

I will be sure not to quote her again.

It seems the more I try the worse it gets.

Would you take a link from Pubmed that note a similar link of the possible connection betwen "Niacin metabolism and Parkinson's disease."

Open Original Shared Link

Or the Michael J Fox Foundation studying this same relationship.

Open Original Shared Link

They say the same thing and presumably by doctor's who don't sell vitamins or have had their license suspended.

Again thanks emma6 I will try and be more careful when siting individual doctor's and their practices.  I just find in somebody's own words easier to follow than some scientific jargon often found in medical journals.

Posterboy,

 

[cyclinglady]

@Posterboy, I am confused as to whether or not you have celiac disease because the blog you referenced in this thread stated:

"I could go on and on but will close for now only to summarize that after 35+ years of general digestive upset (NCGS, Celiac Disease/IBS, GERD, Constipation, Diarrhea, Heartburn, pain, dissention, excess gas etc) and after 4 years of being gluten free I have now been able to consume gluten for 5 years now without any of the above symptoms."

Celiacs should never consume gluten.  There is no cure at present and leading celiac researchers do not expect a cure for many years.  I do not want members to think that if they go gluten free, that someday they will be able to cosume gluten again.  

 

[emma6]

its not just those specific examples its the bigger picture
no one is saying that Vitamin B3 is not important or that B3 deficiency doesn't exist.

The point is you may think that you are helping people but in reality you are giving people dangerous
advice based on inaccurate information you have quoted from unreliable / questionable sources.
then trying to present this information to us as facts by writing in an somewhat academic style when you clearly havn't even fully researched what you are repeating or who these crazy doctors making these claims are.

im not trying to be mean but it reads like you want to believe Niacinamide can magically cure celiac disease so much that you have convinced yourself its true.

taking high does of vitamin B3 can be toxic and cause serious side effects like liver damage or stomach ulcers.

your blog is on tumblr which is primarily used by teenagers, what if someone sees your posts (who isn't as informed as the people on this forum) and starts taking high doses of Niacinamide for celiac, DH, or acid reflux and gets seriously ill. you probably wouldn't ever find out about it or be held accountable.

 

[deb-rn]

I have been doing a lot of reading and seminar watching lately.  When we are sensitive to gluten(my blood test was negative), remove it and feel better, we think we have it nailed.  I felt so much better immediately and lost 20#.  Yet, I still have these nagging health problems like intermittent abdominal pain, joint pain, brain fog, neuropathies that come and go... etc.  More digging has me looking at some of the other "healthy, whole foods" like nightshades, nuts, seeds, sugar, etc....it's a process.  Like Dr. Tom O'Bryan says... replacing junk food with gluten free junk food isn't going to make you well!

 

Debbie

[Posterboy]

17 hours ago, cyclinglady said:

Posterboy, I am confused as to whether or not you have celiac disease because the blog you referenced in this thread stated:

"I could go on and on but will close for now only to summarize that after 35+ years of general digestive upset (NCGS, Celiac Disease/IBS, GERD, Constipation, Diarrhea, Heartburn, pain, dissention, excess gas etc) and after 4 years of being gluten free I have now been able to consume gluten for 5 years now without any of the above symptoms."

Celiacs should never consume gluten.  There is no cure at present and leading celiac researchers do not expect a cure for many years.  I do not want members to think that if they go gluten free, that someday they will be able to cosume gluten again.  

cycylinglady,

I don't know where that leaves me.  There is no good medical answer.  My chart says I am a celiac but my GI symptom's seem to be in remission.

Maybe I am now a silent celiac and damage is being done that I don't see or is now occurring in other organs that I am not aware of. 

I might be in a "honeymoon" period and it will soon end but what I think happened was I might of been a Celiac who developed Pellagra.  As Knitty Kitty said in another thread.

the best research  I can find on the topic is in the International Journal of Celiac disease.

Link provided Open Original Shared Link

In their opening of the first Celiac and Pellaga case study they note "The first description of celiac disease associated with dilated cardiomyopathy and pellagra in the same person, brings multiple interesting aspects to discuss."

And this one Open Original Shared Link

The best I can gather from the articles unless  a test for either a Niacin deficiency or tryptophan was done at the time of diagnosis for my celiac diagnosis it is hard to prove both diseases occurred in the same person.

they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained."

So I think I am in that boat.  No test for a Niacin deficiency were performed since Pellagra apparently is rarer than a Celiac diagnosis no thought was done to review my blood work for a possible Niacin deficiency.

If I had Pellagra there really is no good way to prove it.  Not now at least now that I have taken Niacinamide like I did.

Back to where that leaves me.  In a medical no man's land.  It is interesting is all I know that like the International Journal of Celiac disease notes "brings multiple interesting aspects to discuss" and where better to discuss them than at/in a Celiac.com forum.

Posterboy,

 

 

 

[GFinDC]

Hi posterboy,

You should be "in remission" as long as you are staying gluten-free.  The immune reaction does taper off and subside when we remove the antigen (gluten) from our diets.  If your antibody numbers did not decline, it would mean you are not really gluten-free  (something slipping into the diet) or you would have refractory celiac disease.  Refractory celiac disease is when the immune response does not decline even after being gluten-free for a long while.

I wonder if you have read about CVID?  CVID can cause celiac disease like enteropathy and can be mistaken for celiac disease. 

Open Original Shared Link

enteropathy, which manifests with a blunting of Open Original Shared Link and inflammation, and is usually accompanied by symptoms such as abdominal cramps, diarrhea, constipation and, in some cases, malabsorption and weight loss. Symptoms of CVID enteropathy are similar to those of Open Original Shared Link, but don't respond to a gluten-free diet. Infectious causes must be excluded before a diagnosis of enteropathy can be made, as people with CVID are more susceptible to intestinal infections, e.g. by Open Original Shared Link;

 

 

[kareng]

On 11/22/2016 at 5:56 PM, Posterboy said:

cycylinglady,

I don't know where that leaves me.  There is no good medical answer.  My chart says I am a celiac but my GI symptom's seem to be in remission.

Maybe I am now a silent celiac and damage is being done that I don't see or is now occurring in other organs that I am not aware of. 

I might be in a "honeymoon" period and it will soon end but what I think happened was I might of been a Celiac who developed Pellagra.  As Knitty Kitty said in another thread.

the best research  I can find on the topic is in the International Journal of Celiac disease.

Link provided Open Original Shared Link

In their opening of the first Celiac and Pellaga case study they note "The first description of celiac disease associated with dilated cardiomyopathy and pellagra in the same person, brings multiple interesting aspects to discuss."

And this one Open Original Shared Link

The best I can gather from the articles unless  a test for either a Niacin deficiency or tryptophan was done at the time of diagnosis for my celiac diagnosis it is hard to prove both diseases occurred in the same person.

they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained."

So I think I am in that boat.  No test for a Niacin deficiency were performed since Pellagra apparently is rarer than a Celiac diagnosis no thought was done to review my blood work for a possible Niacin deficiency.

If I had Pellagra there really is no good way to prove it.  Not now at least now that I have taken Niacinamide like I did.

Back to where that leaves me.  In a medical no man's land.  It is interesting is all I know that like the International Journal of Celiac disease notes "brings multiple interesting aspects to discuss" and where better to discuss them than at/in a Celiac.com forum.

Posterboy,

 

 

 

Even tho this is going off the topic the OP wrote about, I feel I must say something here.

Posterboy - you seem to like to "research" on the internet.  Certainly you have read about Celiac disease.  Even the most basic reading will tell you that you always have Celiac and must always eat gluten free.  It will tell you that there are more than just GI symptoms and damage that can be caused by untreated Celiac.  You will read that you could be damaging yourself when eating gluten, even if you do not feel it right away.

 I think you may be spending too much time chasing rare diseases and not enough time trying to take care of the one you are actually diagnosed with. 

[stephm]

Hi squirmingitch,

So sorry to hear that you're having to struggle though another outbreak of dh. I dont have anything constructive to say, just that I wish you well and hope you're feeling better soon.

I just wanted to comment on how similar my rash has been to yours - so many have said it's eczema but this one is different in that it's symmetrical, amd comes in bumps and blisters that itch and bleed, and patches of dry, creased skin. Thanks so much for making light of an unfortunate situation and using it to help others! I'm really glad this community exists.

 

[squirmingitch]

stephm, I read your reply on another thread where you mentioned going off gluten & then back on gluten & off again? The fastest way to a dx if one has dh is a skin biopsy. A dx of dh is a dx of celiac, no further testing needed BUT the derm has to know what they're doing! The biopsy MUST be taken on a clear area adjacent to an active lesion NOT on it. Also you must be eating gluten even for the dh biopsy. See:

Open Original Shared Link

That applies to dh biopsies as well.

Thank you for your concern, it is appreciated.

I will update what's going on with me. I have been put on the Fasano Gluten Contamination Elimination Diet. This is it:

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

	Allowed	Not allowed
Grains	Plain, unflavored, brown and white rice	Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours
Fruits/Vegetables	All fresh fruits/vegetables	Frozen, canned or dried
Proteins	Fresh meats	Lunch meats
	Fresh fish	Ham, bacon
	Eggs	Other processed, self-basted or cured meat products
	Dried beans
	Unseasoned nuts in the shell
Dairy	Butter, yogurt (unflavored), milk (unflavored), aged cheeses	Seasoned or flavored dairy products
		Processed cheeses
Condiments	Oils, vinegar, honey, salt	Flavored and malt vinegars
Beverages	100% fruit/vegetable
	Gluten-free supplemental formulas
	Gatorade, milk, water

 

I began it on 10/26 and it is working wonders already. 

[stephm]

Hi squirmingitch,

Yes it's true - I'd gone to two or three doctors suspecting celiac disease and with my rash, however they all looked at me like I was just buying into the gluten-free hype and not someone with an actual problem. So I decided to take it into my own hands and get as much evidence as I could that gluten (and lack of it) caused/ alleviated my problem. After the trials and proof that gluten caused me problems, I went to a new PC doctor who took me a little more seriously - and he mentioned it could be DH before I even told him about it! He referred me to a GI, appt tomorrow.

However, though I've been on gluten since June, I'm hesitant to go to the derm about my DH. The last time (I saw a MD who specialized in dermatology but NOT a certified derm) she said it was solely eczema and gave me one antibody test, which I tested negative for. Since I haven't been eating gluten regularly as much as I should have, my symptoms are much less noticeable than before. I know many derms are apprehensive of patients coming in and diagnosing themselves, so I'm a little nervous they won't believe me since my rashes aren't as bad as they were before.

[squirmingitch]

60% of those with dh test negative on the celiac blood panel. I know that in Canada, it seems the PC docs are only allowed to do the basic screening which is just 2 of the 6 in the complete panel. This is why I worry for you. I think the GI's are able to do the full panel BUT with your not having been consistently eating gluten for the past 12 weeks, coupled with the 60% of those with dh throwing false negatives on the serum panel.... you see where I'm headed right? Also, those with dh tend to have patchier damage to the villi so if the GI does do an endoscopy, I hope he takes a bare minimum of 6 biopsies. The small intestine, when laid out, is the size of a tennis court so that's a whole lot of ground to cover.

I am not a bit surprised the doc/derm said eczema. 99% of them do, or they say scabies, chiggers, bed bugs, psoriasis, and any number of things. Be warned that oral or injected steroids will screw with the tests & cause false negatives.

[Posterboy]

6 hours ago, kareng said:

Even tho this is going off the topic the OP wrote about, I feel I must say something here.

Posterboy - you seem to like to "research" on the internet.  Certainly you have read about Celiac disease.  Even the most basic reading will tell you that you always have Celiac and must always eat gluten free.  It will tell you that there are more than just GI symptoms and damage that can be caused by untreated Celiac.  You will read that you could be damaging yourself when eating gluten, even if you do not feel it right away.

 I think you may be spending too much time chasing rare diseases and not enough time trying to take care of the one you are actually diagnosed with. 

kareng,

Your are probably right.

But the same could be said about Celiac disease 15 or 20 years ago.  Rare enough to not be diagnosed nearly as common as it is is today.

Thanks to education doctor's now know to look for it today. Sadly though often patients often still have to educate our physician's Celiac is a lot more common than it is diagnosed.

In any good diagnosis there is a qualified differential diagnosis process.

You have heartburn ok? Is it IBS that is the cause.  One poster on this site said had IBS for 10 or 12 years now he has Celiac disease.

10 or 12 years ago they didn't know to look for Celiac maybe with a IBS diagnosis.

And it may be Pellagra is 10 to 12  years behind Celiac disease in the awareness it (celiac/gluten) thankfully now deserves and receives.

Dr. Heaney summarizes why this is so very well why doctor's don't even look for Pellagra today.

Open Original Shared Link

Quoting

"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."

If the International Journal of Celiac disease notes it then it is probably worth at least considering it as part of a reputable diagnosis though  it is not today as Dr. Heaney notes.

see this link again Open Original Shared Link

quoting from the article

"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 ^{[Open Original Shared Link, Open Original Shared Link]}. Alternatively, Pellagra was described in celiac disease ^{[Open Original Shared Link]}. 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 ^{[Open Original Shared Link, Open Original Shared Link]}."

It is me again.

If we all want to help the people and each other on this board then I would be remiss not to mention that Pellagra and Celiac Disease or celiac disease as it is commonly known can/do occur together.

I say that kareng to say this.  as I said in previous post.  I am in a medical no man's land.

You do not have to be.  I have taken Niacinamide as I noted and shown clinical improvement but admit I might be in a silent phase of the disease.

I will never know and can not know if I was one of the possible 58% of pellagrins who might be being diagnosed as Celiac's instead.

but you kareng can go to your doctor's and like me and maybe others like when I/was first diagnosed doctor "please test for celiac disease" and how I received my board name.  The nurse saying well you are "Posterboy" for Celiac in our office.

"How did you know you could of had celiac disease?"  Research.

I could of had IBS or UC or Chron's if the test was not done and so I am medically because their is no other valid diagnosis today.

I didn't know I had celiac disease but I suspected through research I could have.  And medical science agreed.

Now 10 years later medical science is now finding Pellagra in Celiac's.  I am naive enough to believe if one celiac could have pellagra undiagnosed other might could too.

That is all am trying to do is to educate.

So that set me off again.  I know I will never know for a certainty whether my co-morbid pellagra is/was causing my celiac symptom's but you can/could test to see if you or others on this site could have pellagra too.

We all fumble the ball forward.  And I admit I have kareng.

I know I had poor gastric function.  Many on this site do and take or  have taken betaineHCL to help with that poor function.

But it always felt like a symptom to me and not the cause.

Many have flare up on this site when stress is higher and that made sense to me.

Since celiac disease is a genetic disease I had to look elsewhere if indeed my environment/stress was causing my GI symptom's to get worse.

and now I find where in medical journals the same conclusions have been made not only is it possible for celiac and pellagra to occur together in the same person they do so at a surprising staggering rate in 58% of celiac.

What does this look like in human beings?

If one is critically low in Niacin(amide) the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up.  Which to me make the best sense if I also had pellagra some of my celiac symptom's got better or at least stopped complicated my celiac symptom's.

I know I am rambling but I am trying to get to the point that the Merck Manual has a simple test for Pellagra.

Open Original Shared Link

The Merck manual is commonly used as desk reference for physicians and it could be accomplished as given a urine sample the next time your at your doctor's or  your specialist.

I am always trying to learn as much as I can and especially if it can help people/others or myself and this is what I learned since my last post.

I did not even know you test for a Niacin deficiency/pellagra and with the doctor's not even looking for it today you will have to  bring it up the way some (I would dare say) most have brought up or potential Celiac diagnosis to our doctor's when we first received or diagnosis.

Quoting from the Merck Manual when doctor's are considering whether a Pellagra diagnosis is warranted.

"A favorable response to treatment with niacin can usually confirm it.

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."

but the doctor has be looking for it to find it the same way with celiac disease 15 or 20 years ago.

They would  not find it in me now I don't believe because quoting the Merck Manual again my "A favorable response to treatment with niacin(amide) can usually confirm it."

But unless you or anyone reading this forum/thread still suffering 5 or 10 years later still struggling with good control or are super sensitive to gluten doesn't think about or bring it up with their doctor's (like I didn't know to do) then the chance for it to be documented in the medical record is lost. 

The other case report of celiac and pellagra notes the same thing.

Linked here again Open Original Shared Link where they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained." and the other article says the same thing.  But without the test for pellagra my experience is anecdotal the same way me and knitty kitty reported better control from itching.

IF we don't test we don't know.

It doesn't mean treating pellagra would help your celiac disease but it does mean you have a better chance for improvement because having both complicates your celiac disease.

kareng,  I agree a new post needs to be started.  It has drifted off topic. But I wanted to respond because you did.

Perhaps as an alternative diagnosis thread or differential diagnosis thread could be started about this topic.

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

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

I wish us all good luck  on finding a solution that works for us all.

posterboy,

[kareng]

44 minutes ago, Posterboy said:

kareng,

Your are probably right.

But the same could be said about Celiac disease 15 or 20 years ago.  Rare enough to not be diagnosed nearly as common as it is is today.

Thanks to education doctor's now know to look for it today. Sadly though often patients often still have to educate our physician's Celiac is a lot more common than it is diagnosed.

In any good diagnosis there is a qualified differential diagnosis process.

You have heartburn ok? Is it IBS that is the cause.  One poster on this site said had IBS for 10 or 12 years now he has Celiac disease.

10 or 12 years ago they didn't know to look for Celiac maybe with a IBS diagnosis.

And it may be Pellagra is 10 to 12  years behind Celiac disease in the awareness it (celiac/gluten) thankfully now deserves and receives.

Dr. Heaney summarizes why this is so very well why doctor's don't even look for Pellagra today.

Open Original Shared Link

Quoting

"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."

If the International Journal of Celiac disease notes it then it is probably worth at least considering it as part of a reputable diagnosis though  it is not today as Dr. Heaney notes.

see this link again Open Original Shared Link

quoting from the article

"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 ^{[Open Original Shared Link, Open Original Shared Link]}. Alternatively, Pellagra was described in celiac disease ^{[Open Original Shared Link]}. 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 ^{[Open Original Shared Link, Open Original Shared Link]}."

It is me again.

If we all want to help the people and each other on this board then I would be remiss not to mention that Pellagra and Celiac Disease or celiac disease as it is commonly known can/do occur together.

I say that kareng to say this.  as I said in previous post.  I am in a medical no man's land.

You do not have to be.  I have taken Niacinamide as I noted and shown clinical improvement but admit I might be in a silent phase of the disease.

I will never know and can not know if I was one of the possible 58% of pellagrins who might be being diagnosed as Celiac's instead.

but you kareng can go to your doctor's and like me and maybe others like when I/was first diagnosed doctor "please test for celiac disease" and how I received my board name.  The nurse saying well you are "Posterboy" for Celiac in our office.

"How did you know you could of had celiac disease?"  Research.

I could of had IBS or UC or Chron's if the test was not done and so I am medically because their is no other valid diagnosis today.

I didn't know I had celiac disease but I suspected through research I could have.  And medical science agreed.

Now 10 years later medical science is now finding Pellagra in Celiac's.  I am naive enough to believe if one celiac could have pellagra undiagnosed other might could too.

That is all am trying to do is to educate.

So that set me off again.  I know I will never know for a certainty whether my co-morbid pellagra is/was causing my celiac symptom's but you can/could test to see if you or others on this site could have pellagra too.

We all fumble the ball forward.  And I admit I have kareng.

I know I had poor gastric function.  Many on this site do and take or  have taken betaineHCL to help with that poor function.

But it always felt like a symptom to me and not the cause.

Many have flare up on this site when stress is higher and that made sense to me.

Since celiac disease is a genetic disease I had to look elsewhere if indeed my environment/stress was causing my GI symptom's to get worse.

and now I find where in medical journals the same conclusions have been made not only is it possible for celiac and pellagra to occur together in the same person they do so at a surprising staggering rate in 58% of celiac.

What does this look like in human beings?

If one is critically low in Niacin(amide) the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up.  Which to me make the best sense if I also had pellagra some of my celiac symptom's got better or at least stopped complicated my celiac symptom's.

I know I am rambling but I am trying to get to the point that the Merck Manual has a simple test for Pellagra.

Open Original Shared Link

The Merck manual is commonly used as desk reference for physicians and it could be accomplished as given a urine sample the next time your at your doctor's or  your specialist.

I am always trying to learn as much as I can and especially if it can help people/others or myself and this is what I learned since my last post.

I did not even know you test for a Niacin deficiency/pellagra and with the doctor's not even looking for it today you will have to  bring it up the way some (I would dare say) most have brought up or potential Celiac diagnosis to our doctor's when we first received or diagnosis.

Quoting from the Merck Manual when doctor's are considering whether a Pellagra diagnosis is warranted.

"A favorable response to treatment with niacin can usually confirm it.

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."

but the doctor has be looking for it to find it the same way with celiac disease 15 or 20 years ago.

They would  not find it in me now I don't believe because quoting the Merck Manual again my "A favorable response to treatment with niacin(amide) can usually confirm it."

But unless you or anyone reading this forum/thread still suffering 5 or 10 years later still struggling with good control or are super sensitive to gluten doesn't think about or bring it up with their doctor's (like I didn't know to do) then the chance for it to be documented in the medical record is lost. 

The other case report of celiac and pellagra notes the same thing.

Linked here again Open Original Shared Link where they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained." and the other article says the same thing.  But without the test for pellagra my experience is anecdotal the same way me and knitty kitty reported better control from itching.

IF we don't test we don't know.

It doesn't mean treating pellagra would help your celiac disease but it does mean you have a better chance for improvement because having both complicates your celiac disease.

kareng,  I agree a new post needs to be started.  It has drifted off topic. But I wanted to respond because you did.

Perhaps as an alternative diagnosis thread or differential diagnosis thread could be started about this topic.

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

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

I wish us all good luck  on finding a solution that works for us all.

posterboy,

Maybe I am not making myself  clear - you say than you actually have a diagnosis of Celiac disease, yet you choose not to treat it?  You look for other things to be wrong with you.  Great....maybe other things are wrong with you.  But shouldn't you take care of the one you know you have and can treat- Celiac?  Maybe if you actually healed from the  Celiac Disease , some of the other issues would clear up.

I think we have hijacked this thread for long enough.  If you really want to discuss " pellegra"  ,  make a new topic of your own and ramble, rant, quote to your heart's content.     Wr also have a blog section that might work well for you and this topic.  Your info may help someone, but they will have a hard time  finding it mixed in someone elses' DH topic

[GFinDC]

Hi Posterboy,

Nutrient deficiencies are a fairly common problem for untreated celiacs.  This U of Chicago web site link lists some of the deficiencies that people may have.  I think people who are diagnosed with celiac disease should always be tested for nutrient deficiencies.  It just makes sense to do that IMHO.

Open Original Shared Link

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

[Ouch]

On 7/23/2016 at 10:53 PM, squirmingitch said:

I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.

 

Tonight I am not itching at all! I haven't itched all day long!!!!

I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time!

This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.

I'm glad you're feeling better. Take care 

[squirmingitch]

Thank you.

[razzle5150]

I have just the rash DH  not celiac and dr wants me to start dapsone ..... I am allergic to sulfa but he doesnt think I will have a problem . He is starting me out on 30 mg . I am really scared  but itching so bad I cant sleep at night . what do yall think..

[ravenwoodglass]

7 minutes ago, razzle5150 said:

I have just the rash DH  not celiac and dr wants me to start dapsone ..... I am allergic to sulfa but he doesnt think I will have a problem . He is starting me out on 30 mg . I am really scared  but itching so bad I cant sleep at night . what do yall think..

If you have DH you have celiac.  Did your doctor run liver panels before he prescribed? He need to and he also needs to check liver function periodically while you are on the drug if you choose to take it.

Are you gluten free? If you are not you need to be.  If your doctor has told you to take Dapsone and not go gluten free you need a different doctor.

[kareng]

4 hours ago, razzle5150 said:

I have just the rash DH  not celiac and dr wants me to start dapsone ..... I am allergic to sulfa but he doesnt think I will have a problem . He is starting me out on 30 mg . I am really scared  but itching so bad I cant sleep at night . what do yall think..

Did they biopsy the rash to get a DH diagnosis?  If not, you may not have DH and Celiac.   It, if you have DH - you have  Celiac. Please read the links below from The Celiac Center -

Open Original Shared Link

Open Original Shared Link

[squirmingitch]

razzle5150,

I concur wholeheartedly with what both ravenwoodglass and kareng said. They are absolutely correct! DH does not occur if you are not celiac.

[Allo-london]

<snip> this was off topic, i started a new thread