Thanks Posterboy, that was interesting information. I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH.
Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-standard treatment for the DH.
Thankfully, due to the (conventional) gluten-free diet I've been on for the last almost 14 months, I have had significant improvement with the DH that to that point had only been getting worse with each passing year . And now being on the Fasano Elimination Diet for the next few months, I remain quite hopeful that I will see a complete or near-complete remission of my symptoms by the end of this year, if not sooner.
I am just enormously thankful that I was finally able to figure out, on my own (and after a great deal of research), just what my slowly-worsening condition actually is. I have very little expectation that had I gone the traditional, medical-industry route, and tried to get a diagnosis and treatment from doctors, I would now just be thousands of dollars lighter, vastly frustrated and depressed, and much itchier and rashier than ever, after having been told that I have scabies, or bedbug bites, or "atopic dermatitis", or any number of other incorrect and snap diagnoses from medical practitioners who really don't give a damn or can't be bothered to consider every angle or every possibility. I've already been down that road, twice, in my much-younger days, and to say that I little respect for most doctors is a significant understatement.
My one big fear now is that, in the future, should I ever have to be admitted to a hospital, or become unable to cook and care for myself, I will be utterly unable to convince the functionaries and staff who will be responsible for providing my food that I DO suffer from the condition which I do (Celiac disease with dermatitis herpetiformis), and will be refused the necessary strictly gluten-free diet that my health and sanity demands. I'm not sure what I'd do in such a case.
Please have your doctor check your Vitamin D level!
Vitamin D deficiency is related to vertigo
Vitamin D can help with high IgE
Low vitamin D and low ferritin are tied
Dry eye problems including blepharitis can be helped with vitamin d and vitamin a
And chronic pain can be helped by vitamin D
Vitamin D is needed for repair of plantar fasciitis
I used to suffer from all these things, too. I was found to have terribly deficient vitamin D level. I've supplemented and keep my vitamin D level above 70 nmol/l. Vitamin D is a fat based vitamin which may not be absorbed properly by people with Celiac Disease.
Hope this helps!
He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.
Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten free diet. Period. No one is going to give him any special meds to heal his gut --- they don't exist or we'd all be on them.
Unless your hubby is willing to do all the gluten challenges then my advice would be to go absolutely, pristinely gluten free and I mean be rabid about it. No eating out, no eating at other people's houses unless he's brought his own food. No exceptions! I don't care if your daughter made it. Friends & relatives mean well but they do not know all the rules & it's super easy to screw up w/o knowing it. Take ZERO chances. DH is ultra sensitive to the tiniest amount of gluten. If you haven't already, then I would highly suggest you take the household gluten free. That will keep him safest.
Here is the link to the Old research.
I think you will find it interesting. ..I know you used Niacin to treat your itching with your DH.
see Case IV but read them all when you get the chance. they review 12 case studies.
I hope this is helpful but it is not medical advise.
Like Knitty Kitty I am one of the researchers on this forum. she has provide you good links.
So I wanted to chime in and share some research I found recently that might help you....entitled "Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide."
This is recent research too which can be hard to come by to find something directly that might help you.
Also see this thread about how this fact has been long forgotten and while I study/research a lot for my own health problems I was intrigued and surprised to find the issue of Niacin to treat DH had been studied before but now mostly forgotten.
New(er) research(ers) are now rediscovering this fact including as recently as 2018 as shown above.
I like to say it takes a generation to pass this knowledge on to the next. It is amazing how many times something has been studied and no one knows anything about it. ...I was actually very surprised this research is being applied today....the last research I found before this current 2018 research was circa 2000 yet here 18+ years later (which is a typical time to reach clinical practice) .. new researchers are now discovering this old fact that Niacinamide can be used to treat DH. And the old research on this topic is 50+ years old and still doctors/researchers are not aware of it. ...I actually came across it by accident studying for some one else and my own curiosity when DH became associated with celiac disease. ..to my surprise DH as a distinct disease predates it association with Celiac disease by 20+ years. ..a fact long forgotten.
Again, I hope this is helpful but it is not medical advice.
Glad to hear you are already showing improvement on the Fasano diet.
I was going to post something else but this response thread is getting too long and I don't have more time right now so I wanted to post something kinda quick tonight.
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,