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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.

DSC03144.JPG 

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.

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WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better. :)

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Wow!  I will never complain about my measly rashes and hives again (resolves with antihistamines).  DH is awful!  I can see why you are so diligent about avoiding gluten at all costs!  

Thanks for sharing.  You are bound to help many.  

Hugs!  

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I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky.

I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again!

You are a real trooper (little comfort, I know).  Wish I could do more.

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Thanks cyclinglady & manasota! I appreciate it.

I came to give an update......

I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy!

Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea! 

I'll update as things go along.

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Hello - I'm glad you're finding some relief!  And I hope it's continuing with your new treatment.

I am undiagnosed DH suffering like crazy.  It looks and behaves like everything described here. Three dermatologists, incorrect biopsies and strictly gluten-free (including body products and make up) for five months and low iodine  I even made my household gluten-free but I'm still itching like crazy.  Can't sleep, sores all over and now my face is itching. I'm having a hard time functioning and am not able to take care of my children and house like I used to.  I have been on 100mg doxy twice a day for 18 days, started dapsone cream 3 weeks ago and the sores seems to be healing a little but I still itch like crazy.  How long did it take for you to get relieve when you doubled the dose of doxy?  

I was on dapsone 100 mg but within two weeks I had methomoglobinemia.  My lips turned purple, I became pale and couldn't walk very far without sitting down.  All the tests prior to taking dapsone came back fine so I think I may have been on too high of a dose. One doctor prescribed amitriptyline which made me anxious, increased my insomnia,  I couldn't think straight and it didn't even help the itch.

Anyway, I'm leaving on a big trip to Ireland in 4 days and dreading it because I'm so miserable.  Any suggestions?  Should I try doubling my dozy?  Try a lower dose of dapsone like 25mg?  Doctors aren't much help.  One wanted to "bind" my legs with cloth after putting cream on the legs, one wants me to eat gluten and try the biopsy again.  No thanks to either.

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I wish I could tell you the magic potion but unfortunately I can not. As I stated, I am experimenting myself. IMHO if you had trouble with Dapsone before then I wouldn't recommend trying it again in any dose.

I was on the doxy 100mg twice a day for 18 days. Then I had to up it to the two 100mg caps in the am & than again in the pm. I think it took 4 or 5 days of that & the itch subsided & I began to heal up.

One thing I would say that you can try is don't touch anything processed for a while. No gluten-free breads, pastas, cookies, cakes, don't make your own; just go back to a strict whole foods diet. 

When I first went gluten-free in 2011, it took me well over 2 years for the rash to come close to being resolved. Very close to 3 years. It's that way with some of us. Sigh. 

Good luck & let us know what happens! I wish you an itch free life very soon!

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Thank you squirmingitch.  I think my rash is starting to get better with the extra doxy.  I'm about 50% less itchy!  So far my stomach is ok as long as I take them with a meal.  I'm leaving for vacation today (Ireland!) so I'm hoping I can find food that doesn't give me a reaction.  I'm traveling with a group so I won't have a lot of options.  I bought some individual servings of quinoa with artichoke or mango/jalapeno that I can throw in my bag to eat if needed.  They're gluten free and don't need to be heated.  Thank you and everyone else so much for your invaluable advice.  It gives me hope. 

Cheers!

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@squirmingitch thanks for sharing your experience. Could you add something about how you were exposed to the gluten that triggered your outbreak?

Do you get a sense that when an outbreak happens there are gluten free foods that perpetuate the outbreak\itching\sores?

I've struggled with DH for more than 10 years and am on constant alert for potential gluten sources. Dapsone even at high levels had no affect what soever on my sores.

I don't have the type of outbreak your picture shows. Mine instead are either small individual sores on my arms, neck, cheeks, scalp or patches of sores in these areas. While I do experience intense itching when these outbreaks happen the itching goes away while sores remain for weeks and sometimes months even though I limit my diet to make sure of no futher contamination.

I get a sense that items like eggs, tea, chocolate, and a few other foods keep these sores active but once these sores heal these same foods do not cause outbreaks.

Edited by mpoole
to add more context

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I have been meaning to write up my journey of discovery process but just haven't had the time. I still intend to and when i do I will post a link back to this thread.

To make a very lengthy, complicated story into a very short synopsis; I have discovered I am an ultra super sensitive as well as the same for oats, even purity protocol grown oats or oat cc in certified gluten-free foods. My journey of discovery began in Dec. of 2014 & consisted of a series of glutenings, healing up, getting glutened again, healing up, getting glutened again, healing up & so forth. All gluten-free foods. I thought  the first sign of a glutening with me would be a flare of the rash but it wasn't. Mine begins with the neurological aspects, then GI symptoms & then the rash flaring with the exception of this last time when the rash made it's presence known in spades really quickly.

I have not pinned down any "whole foods" that cause outbreaks. I have been aware of the possibility of "other food intolerances" and I have a very short list of possibles but until I get completely well, I can not test those for verification. I'm thinking at present there are none but am still avoiding those possible suspects in order not to muddy the waters. 

Honestly, right now, I am not in any hurry whatsoever to test anything! I just want to get off the roller coaster & stay off it for a good long time & be well & feel good again.

It was all gluten-free foods that got me. I do not eat out. I haven't eaten out since about 2 weeks after going gluten free in 2011. We have a gluten-free household. Gluten doesn't even pass the threshold as my hubby has celiac also & it's just the 2 of us here. 

I also want to make a disclaimer. I do NOT want anyone to fear gluten-free foods because they are great for the vast majority of celiacs. I was shocked to the core to discover I was this sensitive! it was so unreal to me that I didn't believe it. I did consider very seriously that I might be having psychosomatic reactions. I did get my vitamin & mineral levels tested & the results proved that my gut was damaged resulting in malabsorption. So for myself & all the world I can truly say it hasn't been a case of my mind playing tricks on me.

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I wanted to update this thread.

I did find that for me, the doxycycline eventually made me so nauseous that it was awful. I cut back to 1 twice a day and still found myself unbearably nauseous 24 hrs. a day. I quit taking them even though the rash was still flaring. BUT it had ramped down greatly and I am so grateful I had the doxy during the worst. 

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Hi Squirming itch, 

Oh my, I am so sorry for you.  It must be torture, especially on your back where you can't even rub it.  I'm not quite sure what your dermatitis is called.  It looks like eczema.  My grandson has severe bouts with rashes from eczema.   We are an allergic family.  Both my grandchildren have anaphylaxis allergies.  They were also born with it.  But all of us with autoimmune conditions have reactions that mostly manifest on our skin. I sent him to a wonderful Naturopath who took all kinds of tests and actually asked his mother if she took antibiotics when she was pregnant with him.  He had staph when he was a few weeks old and had to have heavy doses of antibiotics.  As I said before, it's wonderful that these drugs can save lives, but it messes up the body tremendously.  The homeopath told him to basically follow the paleo diet.  No sugar, no starches , nothing artificial. and PINEAPPLE WILL BE HIS HEALER.   He started the diet and it is working.  He is in college and it's difficult to follow a dietary regime.  He went off the diet and said he started getting the itch and rash again.  I'm not a doctor, but I have been very pleased with the care that I get from my homeopathic internist, naturopath and follow a diet of all organic food.  It costs more money and takes a little research but there are some great healers out there.  I  am 73, still active, not a lot of grey hair and with my new knee ready to go.  I am moving back into Manhattan and can't wait to walk in Central Park.  

Sending you healing wishes,

Eastie

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Thanks Eastie! My rash is dermatitis herpetiformis aka the celiac rash. Celiac that manifests in the skin so to speak. The antibodies get deposited under the skin.

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squirmingitch,

It may have not been the doxycycline.

You didn't mention any more about your Niacinamide from your first post.

Niacin on this board has been used to treat the itching effect of dh the celiac rash.

You note despite usingy doxy you still continue to have flares but when you started the Niacinamide and doxy you noticed improvement from the itching.

I think you got the wrong thing that was helping.

Niacinamide is used in creams to help acne since it is the non-flushing form of the vitamin.

Receutics skin cream available at Rite aide uses this in skin cream for dermatitis issues like acne.

See this post where Knitty Kitty used Niacin orally to treat the itching of DH the celiac rash.

Where I explain the two types of Niacin.  Niacin that causes flushing and the Amide version of Niacin -- Niacinamide the active form in the body which does not.

It is actually this conversion to Niacinamide in the body that causing the dilation of your capillaries.

The treat/doctor yourself website explains this well.

http://doctoryourself.com/hoffer_niacin.html

If it was the Niaicnamide there should be a cause and effect action of your itching/flaring of the rash getting better by taking the Niacinamide/Niacin as well.

250mg seems to be the ideal size.

Because your body can absorb about that amount every 2 to 3 hours but it harder to find in that size.

You can find Niacinamide readily at 500mg at the Vitamin shoppe 300 count size for $25 tax included.

I know I have bought several bottles to give to people and their acne always gets better when they mix in their cream.

It should also be taken orally so the rash doesn't come back (hopefully) for 3 to 4 months at least in divided doses.

3/day works for most people because remember being water soluble when low in a B-Vitamin it must be taken multiple times a day (twice or more) to keep your serum levels up until the body can restore its balance.

Which happens to be about a 3 month supply in the liver.

If you don't take it that long you will not get your desired control from the DH rash you are seeking.

I took it 2/day for a year but have not taken it in 5 years because I have over came my deficiency.

See my blog in my profile where I talk about my experience with Niacinamide and the website in my profile if you want to research this more yourself.

Celiac.com Blog post linked here for easy reference.

The Celiac Posterboy summarizes this research in hisis blog post about how skin problems of people who have a Niacinamide deficiency can be diagnosed as having  the  DH rash of Celiac disease.

Also squirmingitch if you are sure it was not gluten that got maybe it was stress.

Stress is common before a diagnosis and might explain why you have flared again.

Has or had anything stressful happened to you in the 6 months prior to your flare up.

I wrote a response to thread started by Csark and commented on by Ennix_Tx that talked about "Major Stressors as factor"

Link provided here for easy reference where I note in the thread  research as it appeared on Celiac.com that I am linking to that stress contributes to a celiac diagnosis and it makes sense it might contribute to your DH flare up.

Stress makes us sicker than we often realize at the time.  People often get high blood pressure then they are stressed but most people don't know Folic Acid can help with their blood pressure because we have become low in a B-Vitamin.

Stressed has/does drain us of B-Vitamins which help us fight stress and another reason the Niacinamide could help your manage your DH flare.

When taking Niacinamide it should be taken UNTIL burping is your "new normal".

This will take a whole 300 count bottle and maybe a 2nd for good measure for the reasons I mentioned above.

What do I mean by burping? This confuses some people sometimes.

I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated.

But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat.   Soon water will cause you to burp.

When your stool begin sinking your body is digesting the carbs and proteins that were/can cause backwash (heartburn/GERD) before when you only burped a little and were bloated after eating only a few bites.  And later IBS, Constipation and Diarrhea when they go through the system undigested tearing are insides upside down.

Now BURPING will occur two hours after you ate something.  Long after you have finished your meal you will burp if you have taken the Niacinamide 500mg 3/day for 3 to 4 months at a minimum.

Then burping will be a sign the "natural order of things" that your stress/inflammation is under control.

Kind of like gfindc says about farting I like to say a healthy child burps at 6 months of age a sign they can digest whole foods and a healthy adult should too!

Think about it. Burping is a good thing when we stop and think about it.

And that is a good thing when you know what it means.

I hope this helps and if  it does cause symptom relief of the DH then tell others just like others who read/comment on this board and try to help each other with their knowledge and experience.

Or as the bible says concerning help when it comes.

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.”

**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found (and my doctor and friends have found) if you take it (Niacinamide 500mg) like an antibiotic (UNTIL BURPING) then 95% of your GI problems will flare up less and less.  And probably your DH too if indeed it was the Niacinamide helping in the first place when you thought it was the doxycycline instead.

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,

 

 

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No Posterboy. I did not use Niacinamide. Read my post again.

And you keep posting this same thing over & over & over again. I know you're only trying to help people but Niacinamide is not the answer for everyone & it's not a cure all for everyone & everything. FYI, early on I did take it in hopes of helping or resolving my rash or the itching --- IT DID NOTHING FOR ME. That is not to state it will not help someone at some point but it did not help me one iota.

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6 hours ago, Posterboy said:

squirmingitch,

It may have not been the doxycycline.

You didn't mention any more about your Niacinamide from your first post.

Niacin on this board has been used to treat the itching effect of dh the celiac rash.

You note despite usingy doxy you still continue to have flares but when you started the Niacinamide and doxy you noticed improvement from the itching.

I think you got the wrong thing that was helping.

Niacinamide is used in creams to help acne since it is the non-flushing form of the vitamin.

Receutics skin cream available at Rite aide uses this in skin cream for dermatitis issues like acne.

See this post where Knitty Kitty used Niacin orally to treat the itching of DH the celiac rash.

Where I explain the two types of Niacin.  Niacin that causes flushing and the Amide version of Niacin -- Niacinamide the active form in the body which does not.

It is actually this conversion to Niacinamide in the body that causing the dilation of your capillaries.

The treat/doctor yourself website explains this well.

http://doctoryourself.com/hoffer_niacin.html

If it was the Niaicnamide there should be a cause and effect action of your itching/flaring of the rash getting better by taking the Niacinamide/Niacin as well.

250mg seems to be the ideal size.

Because your body can absorb about that amount every 2 to 3 hours but it harder to find in that size.

You can find Niacinamide readily at 500mg at the Vitamin shoppe 300 count size for $25 tax included.

I know I have bought several bottles to give to people and their acne always gets better when they mix in their cream.

It should also be taken orally so the rash doesn't come back (hopefully) for 3 to 4 months at least in divided doses.

3/day works for most people because remember being water soluble when low in a B-Vitamin it must be taken multiple times a day (twice or more) to keep your serum levels up until the body can restore its balance.

Which happens to be about a 3 month supply in the liver.

If you don't take it that long you will not get your desired control from the DH rash you are seeking.

I took it 2/day for a year but have not taken it in 5 years because I have over came my deficiency.

See my blog in my profile where I talk about my experience with Niacinamide and the website in my profile if you want to research this more yourself.

Celiac.com Blog post linked here for easy reference.

The Celiac Posterboy summarizes this research in hisis blog post about how skin problems of people who have a Niacinamide deficiency can be diagnosed as having  the  DH rash of Celiac disease.

See this link where this is discussed in more detail.

http://celiacposterboy.tumblr.com/post/152086281539/how-acne-rosacea-psoriasis-eczema-hives-and

Also squirmingitch if you are sure it was not gluten that got maybe it was stress.

Stress is common before a diagnosis and might explain why you have flared again.

Has or had anything stressful happened to you in the 6 months prior to your flare up.

I wrote a response to thread started by Csark and commented on by Ennix_Tx that talked about "Major Stressors as factor"

Link provided here for easy reference where I note in the thread  research as it appeared on Celiac.com that I am linking to that stress contributes to a celiac diagnosis and it makes sense it might contribute to your DH flare up.

Stress makes us sicker than we often realize at the time.  People often get high blood pressure then they are stressed but most people don't know Folic Acid can help with their blood pressure because we have become low in a B-Vitamin.

Stressed has/does drain us of B-Vitamins which help us fight stress and another reason the Niacinamide could help your manage your DH flare.

When taking Niacinamide it should be taken UNTIL burping is your "new normal".

This will take a whole 300 count bottle and maybe a 2nd for good measure for the reasons I mentioned above.

What do I mean by burping? This confuses some people sometimes.

I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated.

But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat.   Soon water will cause you to burp.

When your stool begin sinking your body is digesting the carbs and proteins that were/can cause backwash (heartburn/GERD) before when you only burped a little and were bloated after eating only a few bites.  And later IBS, Constipation and Diarrhea when they go through the system undigested tearing are insides upside down.

Now BURPING will occur two hours after you ate something.  Long after you have finished your meal you will burp if you have taken the Niacinamide 500mg 3/day for 3 to 4 months at a minimum.

Then burping will be a sign the "natural order of things" that your stress/inflammation is under control.

Kind of like gfindc says about farting I like to say a healthy child burps at 6 months of age a sign they can digest whole foods and a healthy adult should too!

Think about it. Burping is a good thing when we stop and think about it.

And that is a good thing when you know what it means.

I hope this helps and if  it does cause symptom relief of the DH then tell others just like others who read/comment on this board and try to help each other with their knowledge and experience.

Or as the bible says concerning help when it comes.

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.”

**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found (and my doctor and friends have found) if you take it (Niacinamide 500mg) like an antibiotic (UNTIL BURPING) then 95% of your GI problems will flare up less and less.  And probably your DH too if indeed it was the Niacinamide helping in the first place when you thought it was the doxycycline instead.

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,

 

 

Stress may be a factor in developing celiac disease.  It might the "original" cause of it, but researchers/experts do not know.  It could be a virus, bacteria, divorce, birth, toxin, whatever....they have not figured it out.  But what they do know is that for celiac disease alone (no other AI disorder) gluten triggers the autoimmune response.  Gluten is not causing the damage.  The body sees it as an invader and instead of attacking gluten,  it attacks the small intestine.  It can keep attacking long after the gluten is gone.  In a way we are a bit fortunate, at least we know the trigger unlike those with lupus, MS, or RA, etc.

We are not doctors here.  We offer common sense advice to each other that might help or might not (we are all different), but unless you have celiac disease or DH, I would think twice about offering advice (I know you always give a disclaimer, but still...)

You have stated that you may have NCGI.  That means no intestinal damage.  No antibodies against yourself in the small intestine or skin.  You believe you are cured after being gluten-free for four years.  You think you are cured.  You even eat gluten now.  But since you never had celiac disease, you can not be cured from it.  Celiacs are celiacs for life.  There is no cure and there is not one coming for a while.  Help...but no cure.

Nutrition and diet is essential for anyone's good health.  Feel free to talk freely about that.  It can help but it will not cure an autoimmune disorder.  That is the reality.  

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squirmingitch,

I usually mention the Niacinamide form of the Vitamin because it avoids the flushing people find annoying about the commonly available Niacin form used for cholesterol  management.

Knitty Kitty used the Niacin form to help her itching.  You ran review how she took in the above thread or research the Niacin protocol to relieve itching by releasing our histamine stores in our body.

You did not say how long or how often you Niacinamide before abandoning it.

Most people don't take B-Vitamins long enough, frequent enough or in high enough doses to get the relief they seek.

People make the same mistake with Magnesium.  Often they say it is in my Multivitamin.

Most multivitamins have 6 to 10 percent of the Magnesium one needs daily.  To get the needed magnesium from a multivitamin would take 10 multivitamins a day.  And then it is an oxide form not available to the body like Citrates which when people take it in that form notice a dramatic increase in energy.

When I first took Magnesium it was in the wrong form.

When I first took B-2 it was not in high enough dosages, frequent enough, long enough to make  a noticeable difference.

I had angular cheilitis as part of my celiac diagnosis and took both Zinc (which research said might help) and B-2 for a month which should of helped.

Yet neither zinc or B-2 aka Riboflavin helped any.

So a couple years past and after more research I realized it did  not take multi-time's which is needed to keep serum levels up when taking B-Vitamins or long enough 3 to 4 months the time my liver could store the vitamin.

And right on  target of taking Riboflavin for 4 months 3/day my urine turned bright yellow/neon a sign my body was now bypassing in the kidneys (remember B-Vitamins are water soluble) Riboflavin a sign my body had over come it deficiency/dependency of B-2 and my angular cheilitis which I had struggled on and off for 10 years with went away and I have not had that problem now in over 5+ years.

I was just suggesting if you didn't take it at 500mg 3/day for 4 to 6 months either Niacin or Niacinamide your choose) you may have not taking it long enough to notice a difference i.e, cause burping a sign the Niacin(amide) is helping your digestion and presumably your skin issues too since the Niacin form on this board had been used for the DH rash.

I hope you find help soon with your itching.  And when you do - share so other readers/contributors can benefit as well.

Maybe if you try the Niacin form like Knitty Kitty did it will help the itching but the Niaicnamide form does not and will not help the initial itching caused by DH as you yourself know but other have successful used the Niacin form orally to relieve at least the initial itching of DH.

I was trying to think more long term like my experience with Vitamin B-2 Riboflavin haven taken it once unsuccessfully but realizing my mistake thankfully took it again and got better so when I began taking Niacinamide I knew I would have to commit to taking it at least 3 to 4 months before I could judge if it was helping me.  And why I tried to explain my experience with Vitamin B-3 and the form I used to help my GI problems.

I think we are pretty good researchers on this board and try to research things out for our-self's.

I didn't  try Niacin(amide) until I read Dr. Prousky's work that said it should work but I knew if I didn't commit to it and try it myself I would never know.

see this link for the abstract

http://www.yourhealthbase.com/database/a124b.htm

Like Knitty Kitty said  quoting (me in parentheses) " I read a book "Niacin, the real story" by Drs. Hoffer, Saul, and Foster, (prousky's research)  which advocates high doses.  I started small and am increasing my dosage.  I'm often sceptical of "cure-all," fad diet, latest health craze books, but this one confirms the research I did prior to stumbling across this book.  I have experienced health improvement since beginning to take niacin.  I can't express how big a difference niacin has made to me.  Pellagra is scary. It progresses very subtlely.  I strongly believe that the brain fog we suffer when glutened is due to a drop in niacin. Niacin is instrumental in breaking down and clearing gluten and histamine from our bodies."

It was when I realized that I was not taking my B-Vitamins (or Magnesium  as a Citrate) multiple times a day for multiple (3 to 4 months) months correctly that I vowed to see if Dr. Saul and Dr. Prousky was right.

So maybe it won't help you the way it did us but it won't if you are not taking it correctly either.  As is often the case when people take Magnesium as an oxide or B-2 like myself when I didn't take it multiple times a day for multiple months.

If you don't take it (Vitamin B-3 Niacin) again I can understand why but if you do try it (Niacin 250mg or 500mg) the way Knitty Kitty did then I hope it helps you the same way it did her itching and me my GI cross contamination issues after taking  it 4 to 6 months of taking it 2 to 3/daily.

Good luck on your journey.

Posterboy,

 

 

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Posterboy,

Let me make myself perfectly clear.

I don't give one fig what you think about taking Niacinimide for itch relief of dh. I will not explain to you exactly what strength's, brands, flushing or non flushing kind, or how many times per day that I took Niacinimide when I tried it early on. You did not read my posts; you skimmed my posts. Then you presume to make all kinds of determinations for me when you have gotten the information I provided all wrong. If you're going to dispense advice, then please take the time to carefully read what a person has posted rather than taking shortcuts by speed reading & not paying full attention to what was said. 

GO AWAY!

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9 hours ago, cyclinglady said:

Stress may be a factor in developing celiac disease.  It might the "original" cause of it, but researchers/experts do not know.  It could be a virus, bacteria, divorce, birth, toxin, whatever....they have not figured it out.  But what they do know is that for celiac disease alone (no other AI disorder) gluten triggers the autoimmune response.  Gluten is not causing the damage.  The body sees it as an invader and instead of attacking gluten,  it attacks the small intestine.  It can keep attacking long after the gluten is gone.  In a way we are a bit fortunate, at least we know the trigger unlike those with lupus, MS, or RA, etc.

We are not doctors here.  We offer common sense advice to each other that might help or might not (we are all different), but unless you have celiac disease or DH, I would think twice about offering advice (I know you always give a disclaimer, but still...)

You have stated that you may have NCGI.  That means no intestinal damage.  No antibodies against yourself in the small intestine or skin.  You believe you are cured after being gluten-free for four years.  You think you are cured.  You even eat gluten now.  But since you never had celiac disease, you can not be cured from it.  Celiacs are celiacs for life.  There is no cure and there is not one coming for a while.  Help...but no cure.

Nutrition and diet is essential for anyone's good health.  Feel free to talk freely about that.  It can help but it will not cure an autoimmune disorder.  That is the reality.  

Cyclinglady,

I was serology confirmed as a Celiac. It is true I was not "biospy proven" but there are others on this site like Gemini and I think Ironictruth who were only blood test confirmed but we are no less Celiac's. Than those who have had a biopsy proven diagnosis I believe.

we had a gluten antibody response while consuming gluten and our antibodies when down when I/we stopped consuming gluten.

I think Gemini said hers are still slowly coming down.

And why this considered controversial by some . . . the ideal that biopsy is required for a "positive" not false positive indication of celiac disease is beginning to take hold among research and experts in the field.

A noted author and I would say expert Dr. Rodney Ford of New Zealand the author of the "Gluten Syndrome" notes like squirmingitch that he believes celiac is actually a "Neurological disease" just as squirmingitch noted she had "neurologic aspects" and "psychosomatic reactions" and is what Dr. Ford says.

I have had these same reaction of clinical depression I believe tied to my gluten consumption in addition the GI symptom's and most doctor's today don't connect the two diseases in these aspects.

but my "gluten brain fog" got better when I went gluten free but most doctor's won't agree they are connected even to this day.

Dr. Ford summarizes well what he calls the "Unmasking of Celiac" as reported in the Journal of Gluten Sensitivity.

Link provided here https://www.celiac.com/articles/23853/1/The-Masking-of-Celiac-Do-Not-Ignore-the-Smoking-Gun/Page1.html

Please read the whole article for yourself but my point is the same as  his.

quoting dr. ford  "What an odd thing to say: “Do not mask the appearance of celiac disease.” Inferring that you keep on eating gluten, despite early signs of celiac disease, until you get enough damage to your intestines that it can be seen under a microscope. I  (He) totally disagree with this concept—but this is still a common belief of medical practitioners.

I am actually glad my doctor was educated enough about the topic to diagnose me as a Celiac without a biopsy.

Dr. Ford goes on to say

"Have you ever heard of a doctor “masking” the diagnosis of heart disease by failing to treat high blood pressure or high cholesterol until the patient has a heart attack? Ridiculous! Have you ever heard of a doctor “masking” the diagnosis of depression so that the person is suicidal before given help? Ridiculous!" He says!

He admits it is contentious but I think it is high time we admit serology is enough to diagnose someone as a celiac before a biopsy can prove "well the blood test was right about you having celiac and not NCGI  phase of the disease where a biopsy proves what the blood test told us" my words.

Then dr. ford goes on to mention 12 different points about why only blood exams are rejected as proven celiac disease in the absence of a biopsy.

I will note two or three points that I think as he terms it is a "smoking gun" for a serology proven diagnosis.

Quoting Dr. ford

  • 7) "The “masking” concept originated a few decades ago when biopsy was the only way to diagnose celiac disease;"

According to Dr. Ford but

8) "now, the blood tests for celiac disease (EMA, tTG, DGP) are more accurate than the biopsy, and can turn positive BEFORE there is any histologic evidence of gut damage;"

He capitalizes this fact but we still want people to use an archaic standard when no other method was available to "Prove" a celiac diagnosis.

Dr. Ford goes on to note

  • 1) "Celiac disease is a progressive condition—it slowly gets worse the longer you eat gluten;"
  •  2)"In the early stages of celiac disease, it cannot be diagnosed by endoscopy biopsy;"
  • 3) "The biopsy test is inaccurate and relies on experts to recognize early disease;"

So I think it is high time like my doctor does and more enlightened researchers/practitioner's like Dr. ford and demand serology confirm a celiac diagnosis and stop demanding older more unreliable methods.

He (Dr. Ford)  notes summarizing

quoting "

  • "a) a Gluten challenge is detrimental to your health;"
  • "b) A gluten challenge (to create serious bowel damage) can take years, during which time ongoing body damage (brain, skin and bowel) is ongoing;"

Now it should be noted I am not saying this I am just quoting what an expert in the field says about a "biopsy proven" celiac diagnosis.

Though I do agree with it because other dr's like dr. Mark Hyman said as much 5+ years ago in the Huffington Post

http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

quoting Dr. Hyman

"Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease "

Quoting Dr. Hyman again for emphasis "If your antibodies are elevated" . . .  Positive is Positive

according to Dr. Hyman and now the the noted author who was the first I know of to link neurological aspect  i.e, gluten ataxia as a real component of the "gluten syndrome" Dr. Ford says blood serology is better quoting Dr. Ford again and "more accurate than the biopsy, and can turn positive BEFORE there is any histologic evidence of gut damage;"

He Dr. Ford thinks and I agree this day can not come soon enough for the Celiac's still suffering waiting on a "biopsy proven" celiac diagnosis that "Biopsy is not the Gold Standard" and he even dedicates' a page of his practice to educate people of this fact.  It is very informative and should be read by anyone who has a positive blood test for celiac disease.

Here is the link

http://drrodneyford.com/extra/documents/236-no-gold-standard.html

IN summary he believes there will be quoting an "Ending of Endoscopy . ..  to diagnose Celiac disease"

"Ending of endoscopy

In the next few years, blood tests (particularly the DGP tests) (Dr. Ford says) will take over the endoscopy and  we will see the end of the endoscopy to diagnose celiac disease."

I just hope it comes soon before more people have to "ridiculously" endure eating gluten sometimes for years according to what 5+ years ago dr. Hyman concluded a "positive (blood) test is positive" for a Celiac diagnosis.

So please don't say I didn't have celiac disease. I had 30+ years of horrible GI problems from the time I was a very small kid.  I developed Celiac disease no to mention the many IBS, constipation, diarrhea issues that go with such a diagnosis including early onset Arthritis in my late 20’s with a formal diagnosis in my early 30s by blood serology.  I could not of survived as other on this site have said a "biopsy proven" celiac diagnosis.

I will be glad when other get it.  "Positive is Positive".

I actually think I was as Knitty Kitty said on this site "I was/am a Celiac who developed Pellagra" and why I think Niacin helped her the way it did me.

The International Journal of Celiac disease notes this possibility concerning being a Celiac and a Pellagra sufferer Co-Morbid.

See this link http://pubs.sciepub.com/ijcd/3/1/6/

Note what they say about Celiac and Pellagra being Co-Morbid in 58% of Celiac's in paragraph 3. Celiac and Pellagra.

This is because it is not YET well understood that 58 percent of Celiac patients are Co-Morbid with Pellagra and it it might take years for people/doctor's to understand this.

See this link where Dr. Haney's discusses why this is so.

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

Where quoting Dr. Heaney he correctly states “it is doubtful today that most health professionals would not recognize it (Pellagra) if a case happened to come to their attention” Today!

If you can believe the research in the International Journal of Celiac disease then "Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!” in the majority of Celiac's quoting the Celiac Posterboy.

And why I keep trying to educate people of this fact before more people sufferer unnecessarily.

*** Remember as always this is not medical advice and should not be considered such. Always consult your doctor before making any changes to your medical regimen. But mine has taken/uses The Niacinamide Challenge /protocol in his practice and his  patients digestive/GI problems are in remission i.e, they burp, their stool sinks and and they go once a day without distress after taking Niacin/Niacinamide 500mg 3/day  for 6 months proving at least in the majority of his patients they are also Co-Morbid Pellagrins among his IBS patients at least and according to the International Journal of Celiac disease their is at least  50/50 chance a Celiac or/and I believe a Non-Celiac Gluten Sensitivity  (NCGS) patient might be too or as cyclyinglady terms it talking about me Non-Celiac Gluten Intolerant - NCGI.

Your results might vary.

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,

 

 

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1 hour ago, Posterboy said:


A noted author and I would say expert Dr. Rodney Ford of New Zealand the author of the "Gluten Syndrome" notes like squirmingitch that he believes celiac is actually a "Neurological disease" just as squirmingitch noted she had "neurologic aspects" and "psychosomatic reactions" and is what Dr. Ford says.

 

 

I have NEVER said that I believe celiac is actually a "Neurological disease" and I NEVER said I had "psychosomatic reactions". I did say that I considered the possibility that I was having psychosomatic reactions and many of us have reported neurologic aspects.

If this is an example of what you read into things & twist things around then why in the world should we believe you have understood anything you've ever read including what you keep saying these different doctors have said? If you quote me wrong then who else are you quoting wrong?

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squirmingitch,

I owe you an apology.  I never meant to misrepresent what you said.

When I read "I thought  the first sign of a glutening with me would be a flare of the rash but it wasn't. Mine begins with the neurological aspects, then GI symptoms" . . . I miss understood what you were saying.

I should of noted only my depression and excessive anxiety associated with my celiac diagnosis.  Many times I would wake up on the wrong side of the bed and it often was when I had a heavy gluten meal the night before never associating the two until I was diagnosed as a Celiac and not until I began my gluten free life did my depression symptom's improve.

Dr. Ford's focus is on the gluten ataxia (psychological aspects) of eating gluten and the only doctor who thinks a gluten allergy begins in the brain and not the GI tract (that I am aware of) which is unique. 

I know I certainly had pyschosomatic reactions to eating gluten and I am sorry if I projected these onto you.

I am truly sorry if I misrepresented what you said in anyway. I quoted you out of context instead of quoting the whole thread and I apologize.

Posterboy,

 

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4 hours ago, Posterboy said:

Dr. Ford's focus is on the gluten ataxia (psychological aspects) of eating gluten and the only doctor who thinks a gluten allergy begins in the brain and not the GI tract (that I am aware of) which is unique. 

I

 

 

Gluten Ataxia is NOT a psychological aspect of celiac!  Psychological aspects do not form brain lesions (UBOs) that can affect balance and cause other issues like aphasia. While some of your advice is sound some of it borders on being dangerous. I have to wonder with your constant referrals to your blog if your main purpose here is to sell the book you have on amazon.

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ravenwoodglass,

I am not sure exactly what you mean by the "psychological aspects"  of a Celiac.

I mean it to mean any of many related "dementia's" including depression, anxiety, MS, ALS, Cerebral Palsy  or ataxia's linked or suspected to be linked to gluten consumption or a Celiac diagnosis.

40% of Celiac's go on to develop Depression.  I understand 50% of both Cerebral Palsy and MS patients have gluten antibodies at the time of diagnosis but none them listen or consider what they are eating can be causing their "psychological aspect" or even believe gluten can cause ataxia.

The brain blogger is a great site to read about all things Neurologic in Nature.

They have an article that summarize any link if any to gluten consumption entitled Celiac and ALS is their link.

Link provided here. 

http://brainblogger.com/2015/09/26/celiac-disease-and-amyotrophic-lateral-sclerosis-is-there-a-link/

Quoting their summary

Celiac disease and ALS

"In two case reports described a few years ago, patients with neurological symptoms and MRI scans showing white matter lesions in the brain were initially diagnosed with the progressive motor neuron disease amyotrophic lateral sclerosis (ALS). Upon further analysis, the patients were found to actually have celiac disease mimicking ALS. In both cases, the neurological symptoms of ALS improved with a strict gluten-free diet.

A study recently published in JAMA Neurology aimed to further explore this link between celiac disease and ALS by searching for gluten-sensitivity markers in an ALS clinical population.

Gadoth and colleagues scanned a number of antibodies in the blood of these patients and found that 15.3% of the patients with ALS were seropositive for transglutaminase 6 antibodies, compared with only 4.3% of the controls. The patients that were seropositive for transglutaminase 6 showed a classic picture of ALS, similar to that of seronegative patients.

Tissue transglutaminase 6 is primarily expressed in the brain. Gluten-associated ataxia had already been linked to the presence of serum transglutaminase 6 antibodies; these had been reported to be present in 62% of patients with gluten ataxia. Other studies had also found transglutaminase 6 antibodies associated with gluten neuropathy, as well as with schizophrenia and cerebral palsy.

Aiming at further establishing a link between ALS symptoms and celiac disease, the authors assessed the genetic profile of the ALS patients to determine if their carried the HLA genetic variants associated with celiac disease. They found that 86.4% of patients who were seropositive for transglutaminase 6 autoantibodies also carried celiac disease susceptibility HLA variants. They thereby established a direct link between celiac disease and ALS symptoms in this group of patients.

The data from this study strengthens the hypothesis that ALS may be associated with autoimmunity and gluten sensitivity, at least in a subset of patients with celiac disease.

Although there is still need to further study and confirm this link, these results are important in the sense that gluten sensitivity is easily treatable; ALS symptoms in this subset of patients could therefore also potentially be reverted – a gluten-free diet could do the trick."

It is me again.

My point was with Dr. Ford he thinks it originates there (in the brain).  I don't think think that is the case.

As the Brainblogger points out the Tg6 Antibodies is the "dementia" antibody.

And eating gluten free helped my depression symptom's.

As well as taking other nutrients I had been low in because of my Celiac diagnosis.

Zinc helped my anxiety.

Magnesium Citrate is very good for issues related to the mind.

But Niacinamide is "magic" when it comes to the "dementia's" that can develop when eating gluten.

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

Linked here

http://www.drdavidwilliams.com/the-one-memory-boosting-nutrient-you-should-be-taking/

What is unique about this article is we might hope that Niacinamide could help the "dementia's" of a Celiac diagnosis like Alzheimer's mentioned in this article (on mice) it not only helped those showing Alzheimer's traits but improved the mind/memory function of "normal" healthy mice.

Quoting

"At the end of the study, the diseased mice that were treated with niacinamide performed just as well in memory tests as healthy mice. The niacinamide not only protected their brains from further memory loss, it also restored lost memory function. If this wasn’t exciting enough, niacinamide also improved memory and behavior in the mice without Alzheimer’s. "

I know we are not mice. Be they are often used as in early stages of drug trials to see if if drugs are safe for human consumption.

but this was not a drug but a Vitamin that helped boost memory.  The same vitamin Knitty Kitty said helped her with the brain fog she was having.

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 http://www.prohealth.com/library/showarticle.cfm?libid=16953

that lists some of the things Niacinamide helps with and I link it because she notes 3 or4 different "neurological" or i.e, dementia related conditions as I would say taking Niacinamide can help.

As I said to start this post "ataxia" or whatever you want to call it i.e, Psychological aspects, neurological, depression or things like Schizophrenia etc 50+ years was treated with Vitamins.

Because they still believed in Vitamins then.

Even Parkinson disease today has shown a link to low vitamin levels. 

Though you probably couldn't get anyone to take it (Niacinamide) at a high enough  dose often enough  to make a difference.

These are doctor's  I quoted who still have trouble getting people to take Vitamins because you hear all the time.  "A normal healthy person doesn't need a Vitamin" and yet a Vitamin D deficiency is common in the adult population.

but don't take a vitamin for your health.

All I know taking Vitamins (Folic Acid, Vitamin D) and and Minerals (Magnesium, Zinc) and yes Niacinamide helped me.

I only list this as an example of things that might benefit you if our are a Celiac who is known to be low in Vitamins/Minerals.

The way I see I am just a boy walking down the beach throwing back starfish.  see the poem by Loren Eisely linked here http://www.starrbrite.com/starfish.html

or my blog where I talk about how I have tried to make a difference with education.

https://celiacposterboy.wordpress.com/2015/12/28/are-you-a-starfish-part-2-of-a-former-sufferers-journey/

I am just trying to make a difference for those that will listen.

The Starfish Story Original Story by: Loren Eisley

“One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean (world wide web) . . .

Son, the man said, don’t you realize there are miles and miles of beach and hundreds of starfish?

You can’t make a difference!

After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man, he said I made a difference for that one.” .  .  .

I wish us all good health soon.

Posterboy,

 

 

 

 

 

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