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MakkyZ

Please Help DH rash on genitals?

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Hi, I have the celiac gene, I was tested about 5 years ago when I was suffering so many ailments but any other blood came back negative,  so I decided I’d just go off gluten anyway as I knew gluten was causing a lot of other random issues like joint pain and fatigue etc.

I was gluten-free for gosh about 5 years and I mean totally gluten-free, no shampoos no make up nothing was allowed in our house that had a hint of gluten even hubby went gluten-free so we were all clear, never ate out and was and always have been an OCD label reader so nothing hidden.

Move forward to January this year, went away and was sick of being gluten-free if maybe I was just intolerant so ate a few things, then more and more, so basically been eating gluten for 4 months solid, slowly the aches and pains came back the fatigue and balance issues. 

THEN! I started getting an intense burning and itching in my genital area, I asked hubby to take some photos and saw some what looked like fissures along my perenium, and this thick white discharge over them and it hurt a lot! So I thought I had thrush and so I just tried some anti fungal cream and went off gluten and it started to get better, however after 3 days I began gluten again as I wanted to gluten up and get some bloods done again.

The rash came back and now it was Easter so I ate a few Easter eggs and bam anal fissure hell! bleeding after using the toilet and the whole area became so bad I actually split my vagina just wiping it.

I was a mess by now my genitals were red, and itchy and so painful I couldn’t sit  and now I had these blisters/sores, that itched so bad and as soon as some cleared more appeared. 

She did swabs for virus as it did look like genital herpes but I knew it wasn’t, and she did thrust/Candida and fungi swabs all came back negative.

I am overly sensitive to everything so I reacted badly to the creams she told me to try, bacteria cream and the steroid cream, it was getting worse.

I see my usual Dr on Monday who is an alergy specialist  and have had these tests done at my request.

Crp

Esr

Ferritin 

ANA

ENA

Lupus anti coagulant screen

My CRP is always elevated but back to my rash, this is one photo and I’ve tried to make it discreet but imagine this all the way around my whole gentials on both sides. 

I have been chemical free since 1990 so use no soaps or fragrances products in the area so it’s not a contact dermatitis. Does it look like DH?

Thanks for your help

20421D5A-6459-4A00-98E4-A0A54DD25D3C.jpeg

Edited by MakkyZ
Typo

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Welcome to the board.  You poor thing! I have had DH breakouts in that area but never that bad. You must be in agony. Have you had a derm do a biopsy for DH? That would be a good idea if you can get in while the rash is active. Your doctor might be able to help you get in quickly and do bring the records with results for all that you have already been tested. I don't know if the steroid creams will produce a false negative for a biopsy.

You should also get a full celiac panel redone. Just because one came back negative before doesn't mean it will always be negative. Folks with mostly DH and neuro symptoms are also more likely to have a false negative. After all celiac related testing is done do go back to the gluten free diet as it sounds like you need it.

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38 minutes ago, ravenwoodglass said:

Welcome to the board.  You poor thing! I have had DH breakouts in that area but never that bad. You must be in agony. Have you had a derm do a biopsy for DH? That would be a good idea if you can get in while the rash is active. Your doctor might be able to help you get in quickly and do bring the records with results for all that you have already been tested. I don't know if the steroid creams will produce a false negative for a biopsy.

You should also get a full celiac panel redone. Just because one came back negative before doesn't mean it will always be negative. Folks with mostly DH and neuro symptoms are also more likely to have a false negative. After all celiac related testing is done do go back to the gluten free diet as it sounds like you need it.

Thank you for the reply, are this tests I posted the complete panel? I’m not sure... I’m Aussie so not sure if they are the same here, does the photo look like DH to you? 

I am back on gluten-free now I’ve had the bloods done but now I have this copious white fluid all over it... sooo weird 

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I feel your pain, literally.  Yes this is DH!!!  It’s what my scalp, upper back and various other places on my body looks like before I got IGA tested and withdrew from eating my sensitive foods.  I get patches on the back of my thighs, around the genital area, on my butt cheeks, and always on my scalp.  I get them if I eat dairy also, which this sensitivity goes hand in hand with Celiac too.  I get an overall itchy rash on my stomach and chest if I eat eggs.  It’s the body’s way of eliminating toxins by your immune system.  I’ve been gluten-free,DF, and egg free for about 10 years now.  I’ve also read on the research university sites that if you have DH, you are a Celiac.  When I found what I had been suffering with (I thought I had Herpes), I was overjoyed with a diagnosis.  

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I want to tell you what I do for the burning, itching discomfort with each breakout I have.  Several things work for me.  If you are in a state that allows Cannabis sales, I found a topical gel called Flow, which contains CBD oil, works to stop the pain and itching.  It heals faster also.  If you are not in a state where Cannabis is legal, I have found other compounds that work.  I buy DoTerra essential oils and make my own topical by adding Copaiba Oil to their lotion or cream (all organic and gluten-free).  Copaiba Oil has been proven to help pain as much as Cannabis.  Another avenue is using Arnica Oil products, which you can get in any organic health food store or online.  I haven’t tried other over the counter topical treatments for pain like baby teething gel, but I imagine they will work also.  It’s made all the difference for me when I accidentally eat Gluten or dairy.  The area that breaks out stops itching, burning and heals faster.  

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Oh you poor thing!!!! My heart goes out to you. It's obvious you have a problem with gluten. See if you can get tested right away -- you might just turn up positive but really, I think you've proven beyond any doubt that you should not be eating gluten at all. 

 

Those are not the celiac serum tests I'm sorry to say. This is the current full serum panel & they would not be called much different if any at all in Oz.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

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7 hours ago, HelpmeRhonda said:

I feel your pain, literally.  Yes this is DH!!!  It’s what my scalp, upper back and various other places on my body looks like before I got IGA tested and withdrew from eating my sensitive foods.  I get patches on the back of my thighs, around the genital area, on my butt cheeks, and always on my scalp.  I get them if I eat dairy also, which this sensitivity goes hand in hand with Celiac too.  I get an overall itchy rash on my stomach and chest if I eat eggs.  It’s the body’s way of eliminating toxins by your immune system.  I’ve been gluten-free,DF, and egg free for about 10 years now.  I’ve also read on the research university sites that if you have DH, you are a Celiac.  When I found what I had been suffering with (I thought I had Herpes), I was overjoyed with a diagnosis.  

Thank you for your reply, what a marvellous idea with the teething gel! I am pretty allergic to everything but I was certainly give that a try and the other ideas too which I will check for at my local organic shop, they tend to carry those sorts of things.

 

thank you :)

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41 minutes ago, squirmingitch said:

Oh you poor thing!!!! My heart goes out to you. It's obvious you have a problem with gluten. See if you can get tested right away -- you might just turn up positive but really, I think you've proven beyond any doubt that you should not be eating gluten at all. 

 

Those are not the celiac serum tests I'm sorry to say. This is the current full serum panel & they would not be called much different if any at all in Oz.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Thank your for your reply I must have missed some of the tests in my copy paste here is the rest of the list 

S- autoantibodies 

S- celiac autoabs 

TTG Iga 

Gliadin 

Iga

they might not be all but I hope at least one will show something.

Youre right I pretty well know I am Celiac but was hoping so much it was only an intolerance that I could finally go out once and a while and not have to worry aabout what to eat, sadly I have a corn allergy as well as dairy and egg so a lot of gluten-free foods have corn as a substitute and that actually makes me a lot worse.

i will hopefully get the results back tomorrow and if not then she will have the blood there to ask for the right ones.

thanks again :)

(sorry about the large writing it was from the copy paste and wouldn’t go away)

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Yeh, it looks like you just got the basic screening. Be aware, like raven said -- 60% of us with dh test negative on the blood work then there's the fact that you haven't been eating gluten every single day for 12 weeks soooooooo odds for you are slim. Could you ask for an endoscopy? The gluten challenge time on that is 2 weeks. OR can you get a dh biopsy real quickly? You have to have someone who knows what they're doing though. It must be taken from a clear area adjacent to an active lesion. If they take the punch biopsy ON the lesion you're screwed -- that's the wrong way to take a dh biopsy. 

As I said before -- you obviously have a problem with gluten. I wanted to give a heads up on the arnica. I have & use arnica gel for aches & pains & bruises but have never tried it on the rash HOWEVER everything I've ever read about it says you are NOT to use it on broken skin. 

  • Risks. Always talk to a doctor before using arnica. When swallowed, pure arnica can cause rapid heartbeat, gastrointestinal problems, kidney and liver damage, coma, and death. Don’t use undiluted arnica topically on broken or sensitive skin.

https://www.webmd.com/vitamins-and-supplements/arnica#2

*********************************************

What are the side effects of arnica (Arnica montana)-topical?

 

Arnica should not be applied to open wounds or mucous membranes.

https://www.medicinenet.com/arnica_arnica_montana-topical/article.htm#what_are_the_side_effects_of_arnica_(arnica_montana)-topical?

 

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1 hour ago, squirmingitch said:

Yeh, it looks like you just got the basic screening. Be aware, like raven said -- 60% of us with dh test negative on the blood work then there's the fact that you haven't been eating gluten every single day for 12 weeks soooooooo odds for you are slim. Could you ask for an endoscopy? The gluten challenge time on that is 2 weeks. OR can you get a dh biopsy real quickly? You have to have someone who knows what they're doing though. It must be taken from a clear area adjacent to an active lesion. If they take the punch biopsy ON the lesion you're screwed -- that's the wrong way to take a dh biopsy. 

As I said before -- you obviously have a problem with gluten. I wanted to give a heads up on the arnica. I have & use arnica gel for aches & pains & bruises but have never tried it on the rash HOWEVER everything I've ever read about it says you are NOT to use it on broken skin. 

  • Risks. Always talk to a doctor before using arnica. When swallowed, pure arnica can cause rapid heartbeat, gastrointestinal problems, kidney and liver damage, coma, and death. Don’t use undiluted arnica topically on broken or sensitive skin.

https://www.webmd.com/vitamins-and-supplements/arnica#2

*********************************************

What are the side effects of arnica (Arnica montana)-topical?

 

Arnica should not be applied to open wounds or mucous membranes.

https://www.medicinenet.com/arnica_arnica_montana-topical/article.htm#what_are_the_side_effects_of_arnica_(arnica_montana)-topical?

 

Thank you for that, my dr is pretty good so hopefully she will request more tests if needed, I am so worried about the endoscopy from hearing so many horror stories and as you said false negatives

Today the rash is worse, it’s like as soon as some pustules or blisters start to improve I get some new ones, totally making the rounds down there so to speak. 

thanks for the Arnica reminder I did know that but forgot, I am currently using my own concoction of coconut oil with 2 drops of clove and tea tree oil and a half a cap of apple cider vinegar, it’s surprisingly soothing, but I’ll have to be careful it doesn’t irritate and dry out.

thanks again 

Oh can you explain how they do a biopsy down there? My Dr said it was really painful so I’d like to know what I’m in for ?

Thanks 

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I had a punch biopsy on my back once & I did not find it really painful. I did feel it & it felt like a pressure & a pinch but I don't recall even flinching. I know I didn't grit my teeth or grimace & I held perfectly still. 

Here's a link of how it's properly done:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

Actually, you should print that out & take it with you, or at least the part with the pictures of the biopsy being done, to the dermatologist. Highlight that part that says:

A skin sample is taken from the area immediately next to a lesion and a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. Skin biopsies of people with DH are almost always positive for this granular IgA pattern.
Read more at https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/#z85itkp5qSAvsqCV.99

They use a local anesthetic so if it starts to hurt tell them to stop & use more anesthetic or wait longer until it numbs more.

BTW, since 2012, a positive dh biopsy is a dx of celiac & no further testing is needed. So the last little paragraph in that section is incorrect. I know that was written prior to 2012 because I was reading it in 2011. LOL!

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Thank you for that information it really helped, I see the Dr tomorrow so she might do it herself as she’s an allergy Dr if not then hopefully  a good dermatologist while it’s still active.

i guess I am a little hesitant because of the intense pain and it being “down there” ouch!!

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I understand! IMHO, if she can do the biopsy that would be about the most perfect situation you could have. You're comfortable with her I think & that will make things much better for you all the way around. 

Another thing.....

Scratching can easily destroy that pattern the lab will be looking for so pick a place you haven't scratched at. 

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Now that might be a feat! It’s been itchier than ever the past few days, luckily some I can’t reach so I’ll point those out, I’ll have at least some answers this afternoon. 

Thanks again 

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Ok so I saw the dr today and well she was pretty useless, she said it was dyshidrosis, which is clearly isn’t as that is on hands and feet.

she got the bloods back the main three she checked were the all negative so she said I had non celiac gluten intolerance, 

TTG Iga 

Gliadin 

Iga

however I am getting worse the pain is excruciating and I almost went to hospital I couldn’t cope and now it’s spreading to the inside of my legs.

tomorrow I will try to see someone else and see how long the wait is for the dermatologist, however after sitting for over and hour waiting for the dr and then walking around a little I almost passed out from the pain so I’m hesitant to move ?

here is my latest photo as discrete as I can be  

B2AAAA35-CD06-46C3-AF3C-21D33E5954F9.jpeg

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Similar situation...only for me, my diagnosis of "lichen sclerosis" came before Celiacs Disease...but both were a long time coming in diagnosing. I'm 53. At 44,  I was diagnosed with LS...which explained so much about my "flares" of intense itching and rashes, similar to yours, throughout my life.  Hit menopause and BOOM.  I have always gone to the gynocologist religiously. I've had 4 kids! 

Until it got so bad pre and post menopause, no Dr had caught the tell tale white spots and patches on my genital area as LS. A female Nurse Practitioner visually diagnosed me...and I had a biopsy done.  I have been reading up on the correlation of Celiacs and Lichen Sclerosis. I just registered here to see if anyone had the similar issue, because, according to what I'm reading, the research just isn't there, but some correlations are being observed. 

The only way I knew for sure I had Celiacs, was through a colonoscopy/biopsy... then a backup blood test to confirm the results. That was one year ago after years of bloating, pain and finally, my body just said stop - Ended up in the ER with intense abdominal pain and inflammatory bowel. 

 As for your rash, it looks similar to mine in the past when the itching gets intense.... But, mine blisters. Folliculitis  is just a given after grooming for me. It's awful... because of changes in the cellular structure of the genital skin.

 I have no idea if perhaps you too, are dealing with LS or perhaps, an allergic reaction of some kind to gluten or other things...like contact dermatitis...but, it's truly worth asking the right questions to your physician, to get those answers. LS requires a biopsy as well... via a dermatologist or gyno.  My Gastro Dr explained...both are auto immune related. Just not an extreme level of research on the subject. We can control Celiacs...unfortunately, LS is unknown as to to "official" cause, it's not contagious...but, it is something that can be symptom managed. Good luck. 

Edited by Angie123

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9 hours ago, Angie123 said:

Similar situation...only for me, my diagnosis of "lichen sclerosis" came before Celiacs Disease...but both were a long time coming in diagnosing. I'm 53. At 44,  I was diagnosed with LS...which explained so much about my "flares" of intense itching and rashes, similar to yours, throughout my life.  Hit menopause and BOOM.  I have always gone to the gynocologist religiously. I've had 4 kids! 

Until it got so bad pre and post menopause, no Dr had caught the tell tale white spots and patches on my genital area as LS. A female Nurse Practitioner visually diagnosed me...and I had a biopsy done.  I have been reading up on the correlation of Celiacs and Lichen Sclerosis. I just registered here to see if anyone had the similar issue, because, according to what I'm reading, the research just isn't there, but some correlations are being observed. 

The only way I knew for sure I had Celiacs, was through a colonoscopy/biopsy... then a backup blood test to confirm the results. That was one year ago after years of bloating, pain and finally, my body just said stop - Ended up in the ER with intense abdominal pain and inflammatory bowel. 

 As for your rash, it looks similar to mine in the past when the itching gets intense.... But, mine blisters. Folliculitis  is just a given after grooming for me. It's awful... because of changes in the cellular structure of the genital skin.

 I have no idea if perhaps you too, are dealing with LS or perhaps, an allergic reaction of some kind to gluten or other things...like contact dermatitis...but, it's truly worth asking the right questions to your physician, to get those answers. LS requires a biopsy as well... via a dermatologist or gyno.  My Gastro Dr explained...both are auto immune related. Just not an extreme level of research on the subject. We can control Celiacs...unfortunately, LS is unknown as to to "official" cause, it's not contagious...but, it is something that can be symptom managed. Good luck. 

Hi thank you for your reply I literally was reading and self diagnosing it as LS I do have blisters they are just in a place I can’t really discreetly photograph it. 

I am seeing another dr I trust tomorrow and fingers crossed she will know more as I can’t get in to see a dermatologist until OCTOBER!! It will be gone by then so what’s the point ? Ughh

thank you for your reply it really help as they all have, do you have any photos of your rash active? 

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On 4/14/2018 at 9:19 AM, HelpmeRhonda said:

 I get them if I eat dairy also, which this sensitivity goes hand in hand with Celiac too.  I get an overall itchy rash on my stomach and chest if I eat eggs.  

Dairy and eggs are high in iodine (as is seafood/fish), which aggravates existing DH lesions. You might find that after all the deposits leave your skin that you can re-introduce these foods, assuming you don't have issues with these foods for an additional reason.

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On 4/16/2018 at 3:18 PM, MakkyZ said:

Ok so I saw the dr today and well she was pretty useless, she said it was dyshidrosis, which is clearly isn’t as that is on hands and feet.

she got the bloods back the main three she checked were the all negative so she said I had non celiac gluten intolerance, 

TTG Iga 

Gliadin 

Iga

however I am getting worse the pain is excruciating and I almost went to hospital I couldn’t cope and now it’s spreading to the inside of my legs.

tomorrow I will try to see someone else and see how long the wait is for the dermatologist, however after sitting for over and hour waiting for the dr and then walking around a little I almost passed out from the pain so I’m hesitant to move ?

here is my latest photo as discrete as I can be  

B2AAAA35-CD06-46C3-AF3C-21D33E5954F9.jpeg

Hi! I have EXACTLY THE SAME. I have been having it on and off for 10 years. It itches so much, and sometimes it ends up with my skin falling off and leaving "blood patches". The mere touch of the underwear its unbereable. When it happens, I have to wear post-pregnancy pads, because they are made of gentle cotton. I have been tested for a thousand things, and any of them came back positive. Finally, a dermathologist diagnosed me with Liquen Schlerosus. Gave me corticoids, and I got a very painful Bartholinitis from that medication, I had to go though a small intervention to clear it up. I didn't have any clue until today that this might be related to celiac disease. 

Last month I got the genetic test, and I am DQ2.2 positive. I am going to have a biopsy next month. The only thing that works for me is a cream called "Blastoestimulina". I live in Barcelona, so I am not sure you can buy it everywhere in the world, but if you can get it it works miracles. 

I hope we all get better! 

 

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Thanks for this post. It has helped me work out what is wrong with me. I have been a diagnosed Coeliac for over 19 years (biopsy diagnosed). I am on a strict gluten free diet. 13 months ago I started getting this same rash that would come and go (usually cropping up just before my period) as most of you describe in the same area. I also had it in my armpits the first time it erupted, but it left that area after my first antibiotic course. Three specialists wrongly diagnosed folliculitis and eczema. They kept being puzzled that the rash was extremely itchy when it erupted and would then be painful (like random stabbing needles). Steroid creams made it worse. Sweat, heat and movement made it worse. Antibiotics made it better, but it would come back when I wasn't on antibiotics. Topically applying iodine every morning and night kept it at bay, as did washing with sorbolene (with no wheatgerm oil ingredient). For 19 years I have also had what I thought was eczema on my hands and feet in summer, but which I now see is probably DH! I am so thrilled to finally have what I hope is the answer = DH. THANKFULLY my GP has just agreed that I might be on to something with the DH. He has acknowledged that I fit the 'rare' category, but I am so used to getting weird and wonderful medical problems because Coeliac Disease is an immune disorder that it isn't strange to me (heads up to you all who have been diagnosed - it is an immune disorder). He contacted the dermatologist office for me and was wonderfully forceful about them making an emergency appointment for me (booked up for 5 months). They got me in the next day. Now to convince the dermatologist. The doc doesn't want to prescribe Dapsone without the dermatologists approval, so I'm back on antibiotics in the meantime. This website was the most helpful in convincing my doc;    https://www.coeliac.org.au/uploads/65701/ufiles/Fact_sheets/DermatitisHerpetiformis.pdf

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On 7/18/2019 at 4:55 PM, Frangipani said:

Thanks for this post. It has helped me work out what is wrong with me. I have been a diagnosed Coeliac for over 19 years (biopsy diagnosed). I am on a strict gluten free diet. 13 months ago I started getting this same rash that would come and go (usually cropping up just before my period) as most of you describe in the same area. I also had it in my armpits the first time it erupted, but it left that area after my first antibiotic course. Three specialists wrongly diagnosed folliculitis and eczema. They kept being puzzled that the rash was extremely itchy when it erupted and would then be painful (like random stabbing needles). Steroid creams made it worse. Sweat, heat and movement made it worse. Antibiotics made it better, but it would come back when I wasn't on antibiotics. Topically applying iodine every morning and night kept it at bay, as did washing with sorbolene (with no wheatgerm oil ingredient). For 19 years I have also had what I thought was eczema on my hands and feet in summer, but which I now see is probably DH! I am so thrilled to finally have what I hope is the answer = DH. THANKFULLY my GP has just agreed that I might be on to something with the DH. He has acknowledged that I fit the 'rare' category, but I am so used to getting weird and wonderful medical problems because Coeliac Disease is an immune disorder that it isn't strange to me (heads up to you all who have been diagnosed - it is an immune disorder). He contacted the dermatologist office for me and was wonderfully forceful about them making an emergency appointment for me (booked up for 5 months). They got me in the next day. Now to convince the dermatologist. The doc doesn't want to prescribe Dapsone without the dermatologists approval, so I'm back on antibiotics in the meantime. This website was the most helpful in convincing my doc;    https://www.coeliac.org.au/uploads/65701/ufiles/Fact_sheets/DermatitisHerpetiformis.pdf

Frangipani et al,

I saw this topic a couple of months ago ...and really hadn't had any time ....to think about it.  then you refreshed the thread....

I had come across something a while back that struck as something it might be.

B-6 deficiency can cause rashes or scaly rashes in the folds of  a persons body?  then I started digging some more and your conditions are very specific. ....so B-6 is probably out unless you have high homocystine levels?

But B-2 aka Riboflavin fits your symptom's perfectly.

Here is a summary about what a Riboflavin deficiency looks like clinically. I think your symptom's match up to a "T". quoting

Methods for assessment of Vitamin B2

Roy A. Sherwood, in Laboratory Assessment of Vitamin Status, 2019

Riboflavin Deficiency in Humans

Riboflavin deficiency is relatively uncommon in the developed world but in developing countries mild deficiency can be seen in up to 50% of the population. Riboflavin deficiency can be associated with inadequate dietary intake, malabsorptive conditions, for example, celiac disease, but is often seen in combination with a generalized B vitamin deficiency. Riboflavin deficiency (sometimes called ariboflavinosis) causes stomatitis of the mouth and tongue, cheilosis (chapped and fissured lips) and a scaly rash on the genitalia. It has also been associated with visual disturbances including night blindness, migraine headaches, mild anemia, and psychological effects including depression.1 Treatment is by dietary modification or supplements; usually combined vitamin B supplements in view of the association of riboflavin deficiency with deficiencies of the other B vitamins.

Here is the link a B2 deficiency if you want to study more about it.

https://www.sciencedirect.com/topics/medicine-and-dentistry/riboflavin-deficiency

I had the angular cheilossis so common in B-2 deficiency....chapped and fissured lips and taking Riboflavin got rid of it....but I had to do a lot of research which vitamin to take and how frequently and how long. 

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

Posterboy,

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Frangipani,

If after 19 years of eating gluten-free, you are still getting dh then you are still getting glutened. Perhaps too often getting cross contamination or perhaps you are so sensitive that even the certified gluten-free foods have too much gluten for you. 

As to the dermatologist, You do realize don't you that you can not be tested for dh at this point in time unless you eat 1 to 2 slices of gluten bread every day for 12 weeks. So a dh skin biopsy is not going to work unless you go back to gluten OR unless you've been getting such large, regular gluten exposure that you will have villi damage also.

If you do have dh, then taking Dapsone is only going to conceal your gluten exposure leading you to believe you are not getting gluten exposure so in other words, it blinds you to what's happening. It only masks the problem. Just so you know.

Do you eat out? Do you have a shared household? These would be your biggest risks for gluten cross contact.

 

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