Look like DH? Bilateral Itchy Bumpy Elbows

[Jane87]

Hello wise people!

I'm looking for some advice from those in the know. I have a reoccurring elbow rash (bilateral) that comes and goes. First episode about 10 yrs ago at age 20.

It presents as skin coloured bumps that are really itchy on both outer elbows. Over the course of 1 to 2 weeks the bumps may turn pinker and then dry out.

I saw a Dr in the early days and was told it wasn't psoriasis and was possibly caused by leaning on my elbows. ?

After another flare up last week (first in months) I saw a Nurse, who has referred me for a Dr review in a few weeks (earliest available appointment).

In the last 3 years I have also had flare ups of; itchy bumpy fingers, itchy lower back with tiny blister/bumps that turn red and extremely itchy calves with no rash. 

My mum is gluten intolerant with skin & stomach symptoms and has hypothyroidism.

I have attached pics of my elbows from this week, and older pictures of my fingers and back rash.

Any thoughts and comments will be greatly appreciated. Does this look like DH?

Edited November 30, 2017 by Jane87

[greenbeanie]

Welcome, Jane! Those photos look different from the rash I get from gluten - but mine hasn’t been confirmed as DH by a skin biopsy, and I don’t want to hazard a guess about someone else’s rash based on photos, and risk misleading you. Hopefully your doctor’s appointment will be helpful!

However, on a totally different note, have you ever been tested for a latex allergy? The locations you mentioned immediately brought that to mind. Completely aside from the rash I get from gluten, I have an IgE latex allergy. My elbows always get fluid-filled itchy bumps when I’m in a car with rubberized coatings on the armrests (only in summer when I have short sleeves; it’s fine as long as my skin doesn’t touch the armrests directly). Similarly, if the elastic in the waistband of my underwear is fraying at all, I get the rash around my waist, and the same for some elasticized socks on my calves. (Some are ok, and I haven’t figured out yet if certain brands use synthetic materials rather than latex, or whether it’s just a matter of how threadbare they are.)

If you can use latex gloves, condoms, or blow up balloons with no problem, than a latex allergy is unlikely. But if you’ve ever had swelling or rashes from those things too, get an IgE latex allergy test! It’s probably not that, but it’s an easy thing to test. Good luck!

[Victoria1234]

Sure looks a lot like my dh when I had it on both elbows. Make sure you get it biopsied correctly with the skin next to a lesion. If you are dx with dh it does mean you have celiac. It took my duh about 6 months to go away after I went gluten-free.

[Jane87]

Thank you for your comments Greenbeanie and Victoria1234 ?

Greenbeanie, no I've not been tested for other allergies. I've used latex products fine over the years. I do remember the finger bumps were particularly bad when I'd been using paint a lot one time. 

When the lower back rash appears it is greatly exacerbated by exercise as that's where I sweat most when I run. 

Victoria1234, that is interesting to know your elbows looked similar! I've been finding it very difficult to find any images that look similar online, even for other skin conditions. Does celiac run in your family and did you have any other symptoms?

The elbows are the longest living rash. Whether any of these others are related I'm not sure at all. I wonder if it is DH, would I not get it every few weeks rather than every 1 to 2 months? It's now on the less itchy and drier phase, picture below.  

Edited December 2, 2017 by Jane87

[squirmingitch]

It has a mind of it's own. It might appear & last weeks & then disappear for a week or for months on end. It might appear & last months on end & then disappear for weeks. One day it will not go away at all if it is dh.

DH can come & go whether you are eating gluten or not eating gluten. The antibodies sit under the skin like tiny grenades just waiting to go off. There is no rhyme or reason & trying to predict it will drive you mad. 

If it is dh, there's only one answer & that's a very strict gluten free diet. Some of us have it resolve in months, some take years. I am on year 6 but I now actually have 3, 4, 5 days in a row when I have no rash. 

[Jmg]

On 11/29/2017 at 2:45 PM, Jane87 said:

Any thoughts and comments will be greatly appreciated. Does this look like DH?

Hey Jane where ya going today!

I don't have a celiac diagnosis but gluten isn't good for me. About a year after going gluten free I developed a very similar looking rash on both elbows. It was extremely itchy. I realised I was eating a cereal with barley malt which was no longer on the safe celiac list here in the UK. I stopped eating the cereal and the rash went away. I still don't know if it was DH but it fit the symptoms and was seemingly caused by gluten. So I think you may be on the right track. 

Best of luck!

[Awol cast iron stomach]

Deja Vu 

your description and photo look similar to my past experience

thank goodness that nurse was on the ball and got you on the right path. Keep that appointment

good luck

[Victoria1234]

No celiac in my family but lots of other autoimmune diseases! And the photos you just posted also look extremely similar to my elbows 10 years ago. I feel the itch just looking at them.

other symptoms for me were abdominal pain and constipation. 

[Jane87]

Thanks squirmingitch, JMG, awol and Victoria1234. I really appreciate everybody taking the time to give me their thoughts. 

It's interesting to know that the rash can appear erratically. I certainly don't know when to expect mine. Although I'd never thought to suspect gluten before, as I associated gluten intolerance and/or celiac disease with much more severe stomach complaints than those I experience. 

 I am worried that the elbows will have mostly cleared up by the time I see the Dr in 10 days as they are again drier and less itchy each day.  Obviously I've taken pictures and I'll show them but even if they listen to me and refer me for tests I may have no samples to obtain by the time I actually would be sent for a biopsy. I couldn't begin to predict when it will next return as I've yet to see a pattern. Although the week the latest appeared, with hind sight, I had a lot of high gluten foods!

Victoria1234 how did your getting referred/ diagnosed play out? Did your Dr recognise the elbow rash or had you researched it first?

Awol, was it the elbows that you suffered with or did you have rashes anywhere else? How was getting diagnosed for you?

As mentioned in my OP, my mum has immume conditions including Hashimotos Thyroiditis. I'm not diagnosed with anything but I had an episode of unexplained optic neuritis at age 21 that left me with almost no vision in my left eye. This doesn't affect me day to day and luckily my right eye compensates. However they were never able to work out what caused it as MRI's were clear for MS. I've since this week read about possible relation between Celiac, Sjogrens and optic neuritis. I know this a little off DH but I'm just sharing it in case anyone has any experience to share. 

A question, is there another symptom(s) that you would be expected to most likely have other than the bumpy rash, to have DH?

Thanks everyone 

Edited December 3, 2017 by Jane87

[knitty kitty]

4 hours ago, Jane87 said:

 

As mentioned in my OP, my mum has immume conditions including Hashimotos Thyroiditis. I'm not diagnosed with anything but I had an episode of unexplained optic neuritis at age 21 that left me with almost no vision in my left eye. This doesn't affect me day to day and luckily my right eye compensates. However they were never able to work out what caused it as MRI's were clear for MS. I've since this week read about possible relation between Celiac, Sjogrens and optic neuritis. I know this a little off DH but I'm just sharing it in case anyone has any experience to share. 

 

Optic neuritis may be caused by nutritional deficiencies, especially deficiencies in vitamins B 12, D and A and some of the other B vitamins.  This happened to me leaving me blind.  

B12 deficiency can also make DH worse.  

Vitamin A deficiency is often found in Sjogrens.

Malabsorption goes with Celiac Disease.

Please get checked for nutritional deficiencies.  

Hope this helps!

[Jmg]

11 hours ago, Jane87 said:

 

As mentioned in my OP, my mum has immume conditions including Hashimotos Thyroiditis. I'm not diagnosed with anything but I had an episode of unexplained optic neuritis at age 21 that left me with almost no vision in my left eye. This doesn't affect me day to day and luckily my right eye compensates. However they were never able to work out what caused it as MRI's were clear for MS. I've since this week read about possible relation between Celiac, Sjogrens and optic neuritis. 

Ok I'm filling in my celiac / gluten sensitive card here and I now have 2 numbers, this doesn't entitle me to call bingo (that's you and your doctors prerogative) but I'm beginning to check the prizes and thinking about that yacht I've had my eyes on.

I suffered from unexplained optic neuritis for over 20 years. I was checked for diabetes and, such is our crappy health service, that was it. I was left convinced one day I wouldn't get the vision back, but by that point I thought I was going to die early in any case...  The good news is that it cleared up on going strictly gluten free. I didn't expect it to, had no idea it was related to diet but it was one of maybe a dozen unrelated symptoms which resolved. 

So again, not a diagnosis, but you may be on the right path. If I were you now I would start keeping a journal noting down what you eat and when and any symptoms you may notice. Also, prepare for that doctors meeting. Make some very brief, concise, bullet point notes detailing the skin outbreaks, optic neuritis, family history. Basically approach it like your a lawyer building a strong case for an investigation. 

Do all the testing, but if you test negative, DO GIVE THE GLUTEN FREE DIET A CHANCE ANYWAY! That bit was important, I tested negative but the optic neuritis, elbow itching and a whole lot more comes back if I slip up on the diet. Medical Testing and knowledge in this area is less than optimal. Be your own health advocate and do what's best for you.

Stay on gluten, get every test you can and best of luck!

matt

[Jane87]

Hi Knittykitty and JMG (Matt). Thank you both for your input about optic neuritis. That is so interesting to learn that it was related for both of you to gluten. Did your sight come back to you Kitty? I'm glad to hear Matt that you have no longer had any episodes since going gluten-free. Mine was sudden onset acute. Treated with IV & oral steroids but the damage was too great and the lens atrophied so I doubt I will ever regain further vision in that eye.

I will indeed be building a 'case' prior to my appointment. My mum faced 15/20 years of being ignored before her various conditions were diagnosed by which point mistreatment had meant her kidneys were damaged by incorrect medication. I don't want to have Celiac by any means but I want to be taken seriously. 

Is it relevant that my mother is Icelandic and my father's grandparents are Swedish & Norwegian? I've read that there is a propensity for people with Scandinavian heritage to have Celiac. Is that correct or needn't I mention it to the Dr? 

Is it relevant that with this last episode on my elbows I have felt sluggish, depressed, dehydrated and have had a mix of constipation and a little of the opposite. I ordinarily put periods of feeling like that just down to "feeling a bit off" or eating too much junk (on top of what is generally a good diet) as other times I have clear skin, feel great and energised with regular bathroom habits. Oh and is it worth mentioning I have carpal tunnel symptoms in my wrist/arm that flare when I use a computer at work  (I find relief with a forearm massage that a sports therapist showed me) as I've read peripheral neuropathy is a symptom? Could this all be signs of DH/Celiac or am I overreaching? I do not have unexplained weight loss nor extreme stomach problems so I am concerned about being dismissed at first sight. 

 

 

Edited December 4, 2017 by Jane87

[Jmg]

1 hour ago, Jane87 said:

I'm glad to hear Matt that you have no longer had any episodes since going gluten-free.

Not entirely. I get occasional periods of occluded vision, last about a couple of minutes in one eye, these I think are related to occasional cross contamination. Note I've not been diagnosed with optic neuritis and they may be retinal migraines - I'm not willing to put myself through any further testing...

 

1 hour ago, Jane87 said:

Is it relevant that my mother is Icelandic and my father's grandparents are Swedish & Norwegian? I've read that there is a propensity for people with Scandinavian heritage to have Celiac. Is that correct or needn't I mention it to the Dr? 

There is a higher incidence from there and also from the West coast of Ireland where I have ancestors. I doubt a physician will pay it much mind, but I'd have it way down the list of bullet points and amalgamate it with my immediate familial history which will be given greater weighting.

1 hour ago, Jane87 said:

Is it relevant that with this last episode on my elbows I have felt sluggish, depressed, dehydrated and have had a mix of constipation and a little of the opposite.

Highly relevant.

1 hour ago, Jane87 said:

Oh and is it worth mentioning I have carpal tunnel symptoms in my wrist/arm that flare when I use a computer at work

Again relevant and another building block in the case.

1 hour ago, Jane87 said:

Could this all be signs of DH/Celiac or am I overreaching?

Possibly but I don't think so based on your posts. I think your doing the same thing I did a few years ago and finally putting together a big jigsaw puzzle and finding out there's a connection between things you thought separate, a cause behind things you thought were just part of aging/lifestyle etc. 

1 hour ago, Jane87 said:

I do not have unexplained weight loss nor extreme stomach problems so I am concerned about being dismissed at first sight. 

The popular view of celiac is that the above is the typical way of presenting but the stats suggest otherwise. Most people don't present with mainly gastrointestinal symptoms, some don't have any. For me, neuro symptoms are more prevalent, though once I did go gluten-free I found that my GI situation improved immeasurably and I now realise I had issues there that I'd not fully identified. 

 

 

[Victoria1234]

23 hours ago, Jane87 said:

Victoria1234 how did your getting referred/ diagnosed play out? Did your Dr recognise the elbow rash or had you researched it first?

I had no clue. Derm tested it and said it was dh.... and didn't tell me a thing about celiac. jMG was the first person to tell me that it was a celiac diagnosis!

[Awol cast iron stomach]

39 minutes ago, Victoria1234 said:

I had no clue. Derm tested it and said it was dh.... and didn't tell me a thing about celiac. jMG was the first person to tell me that it was a celiac diagnosis!

Oh my! Glad JMG told you 

I also get funky eye pain it has been a year. I get a migraine throbbing  like eye pain and then sometimes a more achy pressure like pain I believe is inflammation. 

It comes and goes this past 14 mos post challenge. So I concur it can come and go even if you are strictly gluten-free.

I hope it is less prevalent once more healing occurs.

despite not active flare DH I can get insanely itchy and pain in my DH areas even if it doesn't erupt visibly on skin.

[Awol cast iron stomach]

Awol, was it the elbows that you suffered with or did you have rashes anywhere else? How was getting diagnosed for you?

sorry not sure why my email is not updating properly. I got this late?

i did not get notification until I signed in my apologizes in my delayed follow up.

my DH has not been diagnosed. Ironically it was not present during my oct 2016 time period. I had it on and off over the years different spots mostly elbows, bum, face. My last flare was after visiting a friend  it appeared slightly above my knuckle on way home in car and I thought err her soap must have had gluten in  or I must have touched something with gluten on it. I found I had a tiny cut on that hand. I actually wash my hands prior to leaving people's homes and then when I get home. So either her soap or door knob or something got me. 

I get a burning like sensation then intense itching a slight color change pink of the area before the actual bump erupts. 

My diagnosis has been a long time coming. We are hard to diagnose as my cousin is gold standard celiac diagnosed and it took her 2 years, and over a dozen Dr.'s and what sounds like horrible stress.

I was diagnosed IBS for 20 years before I got sent to a celiac clinic. my worst DH flare was horrendous after the delivery of my daughter it was diagnosed by observation as PUPPP , but after joining here and seeing pictures I am thinking that was a missed opportunity. I say to my husband either all those celiacs have PUPPP or my PUPPP is DH?

I have taken a long road and numerous times sought help for my celiac issues, but was never tested for celiac until 2016. I had time periods of traipsing to Dr usually every decade two major years were in the my 1996 & 2008 were two time periods I really sought help. By 2008 I got so frustrated they began to look at me as nuts and it's in your head bit. I stopped going to Dr and my husband was the first person to "diagnose me". I truly see it as my husband diagnosed me and my cousins diagnose and my 2016 celiac gluten challenge /clinic confirmed it.

My cousin was much more persistent and stubbornly said you figure this out. She made the rounds of every and all Dr to get her answer.

I usually went to gp, allergist/immunologist, then dermatologist, then I was essentially  led to believe it was in my head. I was already gluten-free by the time I got to a celiac clinc but crawled there after a waitress fed me gluten despite calling ahead ya da ya da

now I am a hermit at home but know for sure what I finally am

edit: I did a challenge I could not complete with dual scopes endow and colon

my prior diagnosis were not found no IBS , IgE mediated wheat allergy etc ruled out.

it was more a rule out to then clarity ruled in with me 

they told me avoid gluten , you have Barrett's esophagus and gastritis later records indicated NCGS is in my records now not IBS

my husband and I believe I am celiac but I was unable and unwilling to complete the full challenge which would be needed to be celiac

my symptoms are extreme and I still have not recovered 

??

[Jane87]

Hi AWOL, that's okay, I don't seem to get notifications unless someone quotes me in their reply. Thanks for your reply. That sounds like a nightmare for you to try and get a help! I'm pleased that you decided to take it in your own hands in the end and going gluten-free has helped you a least a little. I hope you can become more well as time goes on, sounds like you have a supportive family!

❤

[Jane87]

Thanks to everybody that has taken the time to read and reply to me on this thread!

One "symtpom" I forgot to mention is one that I've only noticed in the last year. I was reminded as it happened tonight when I got home from work. I was hungry but considering I'd had a filling breakfast, a late lunch and a snack only about 60/90 minutes earlier, I was disproportionately starving to the point of feeling very shakey and feint. Not enough to go all Victorian period drama over it but I had a sweaty back and felt ravenous. I didn't stop feeling hungry until well after I'd eaten. Lucky for me the other half was already home from work and dinner was on the go. I've had a few of these episodes this year. They make me think of low blood sugar but I don't believe myself to be diabetic. Any thoughts on this guys? I'm not undereating and certainly not underweight!

[Victoria1234]

1 hour ago, Jane87 said:

Hi AWOL, that's okay, I don't seem to get notifications unless someone quotes me in their reply. Thanks for your reply. That sounds like a nightmare for you to try and get a help! I'm pleased that you decided to take it in your own hands in the end and going gluten-free has helped you a least a little. I hope you can become more well as time goes on, sounds like you have a supportive family!

❤

Subscribe to your post for notifications. Looks like 6 people have done so!

[Jmg]

14 hours ago, Jane87 said:

Thanks to everybody that has taken the time to read and reply to me on this thread!

One "symtpom" I forgot to mention is one that I've only noticed in the last year. I was reminded as it happened tonight when I got home from work. I was hungry but considering I'd had a filling breakfast, a late lunch and a snack only about 60/90 minutes earlier, I was disproportionately starving to the point of feeling very shakey and feint. Not enough to go all Victorian period drama over it but I had a sweaty back and felt ravenous. I didn't stop feeling hungry until well after I'd eaten. Lucky for me the other half was already home from work and dinner was on the go. I've had a few of these episodes this year. They make me think of low blood sugar but I don't believe myself to be diabetic. Any thoughts on this guys? I'm not undereating and certainly not underweight!

Yes this is another check on my bingo card... I had multiple diabetes checks over the years as this often happened to me. I would 'crash' get very weak, absolutely ravenous and be shaking. I came the conclusion that gluten interfered with my bodies capacity to regulate blood sugar, but when tested later at doctors I would not show up as diabetic. 

The good news is this is one more thing which resolved once gluten free. I think you and I have very similar symptoms. So guessing again you are very much on he right path and hopefully once you finish testing you can look forward to some great results health wise.

start finding and eating your favourite gluten foods, you may be saying goodbye to them so time to set in motion operation cheesecake/French bread/pizza etc - it's one time in life where you kind of have a medical sanctioned reason to indulge

[Awol cast iron stomach]

On ‎12‎/‎5‎/‎2017 at 6:15 PM, Victoria1234 said:

Subscribe to your post for notifications. Looks like 6 people have done so!

That's logical- lol . I should learn to do that

[Awol cast iron stomach]

On ‎12‎/‎5‎/‎2017 at 4:57 PM, Jane87 said:

Thanks to everybody that has taken the time to read and reply to me on this thread!

One "symtpom" I forgot to mention is one that I've only noticed in the last year. I was reminded as it happened tonight when I got home from work. I was hungry but considering I'd had a filling breakfast, a late lunch and a snack only about 60/90 minutes earlier, I was disproportionately starving to the point of feeling very shakey and feint. Not enough to go all Victorian period drama over it but I had a sweaty back and felt ravenous. I didn't stop feeling hungry until well after I'd eaten. Lucky for me the other half was already home from work and dinner was on the go. I've had a few of these episodes this year. They make me think of low blood sugar but I don't believe myself to be diabetic. Any thoughts on this guys? I'm not undereating and certainly not underweight!

I got this symptom a lot when young and particularly in my 20's I would forget to eat. Perhaps it was all the celiac bloating

My mom would notice my arm/hand shaking and say go eat something. When I first went gluten-free (the first time) I had to eat small snacks every 2 hours. As JMG said my blood sugar would dip and although not extreme enough for my body to react.

Lastly, I have to be careful about CC as well one time coffee gave me tremors.  My husband grabbing and holding my hand did not stop the tremor. The Celiac Immuno Dr told my husband get a new coffee pot, and grind only fresh whole beans, give it to her black. No tremors. I can not do processed coffee apparently there can be some CC - even if low a count my body detects.

Good luck small meals-carrots are a great go to /purse snack.

Edited December 7, 2017 by Awol cast iron stomach
autocorrect incorrect

[Jane87]

Hi All! I've had a chat on the phone to my mum in advance of my Drs appointment on Weds. Confirmed my family history:

Mum = Hashimotos Thyroiditis 

Lactose intolerant 

Gluten intolerant 

IBS

IgA Nephropathy (Kidneys)

Diabetes

Uncle: Crohns Disease & Coeliac

Aunty: IBS & Osteoporosis 

Uncle: Hughes syndrome (sticky blood immune condition)

Aunty: Lupus

So basically out of the 6 siblings including my mum, they all have autoimmune diseases.

She also told me that as a young child I had a diagnosed episode of anaemia and flipped between constipation and in her words "floaty, pale, whipped stools" Blood tests were done but no firm diagnosis and from age 6 or 7 my bowel habits seemed to balance out.

Do you guys think any of this is relevant in your experience?

 

[Awol cast iron stomach]

Definitely a family history of autoimmunity spectrum Jane to give the DR' s many IBS are missed celiacs. 20 years ago I was told based on symptoms only you have IBS and have to figure what you can and  can't eat. Only later to read many celiacs were formerly diagnosed IBS. My scopes ruled out IBS.

Based on family history you should be suspect imho

 

[KellT]

On 12/3/2017 at 1:52 PM, Victoria1234 said:

No celiac in my family but lots of other autoimmune diseases! And the photos you just posted also look extremely similar to my elbows 10 years ago. I feel the itch just looking at them.

other symptoms for me were abdominal pain and constipation. 

May I ask what types of autoimmune diseases? I have the same issues as you described. Doctors always tell me something different.