Shingles or DH?

[Kurasz]

When i got extremely ill last winter, (6 months of constant vomiting, fevers, and severe abdominal pain and cramping) i had a rash from my ribs to my hips on my right side. I saw a surgeon because i thought my problems were coming from a hernia repair i had 13 years ago. He told me the rash was shingles but, i've never had chicken pox. In fact no males in my family or my dads family have ever had chicken pox. My dad and his 5 brothers all got tested for shingles a year ago and the all came back negative. I haven't been tested for shingles, but what I'm wondering is if this was DH. The rash took 2 months to go away and it never itched. At times it would give a deep burning sensation, but most of the time there was no irritation at all. I haven't been diagnosed with anything yet (after $10,000 woth of tests) but i have every symptom of celiacs and my GI thinks its celiacs that is affecting me. Drs have tested me for almost everything but celiacs. I went on a gluten free diet on my wifes advice 3 months ago and stopped vomiting after 1 day of the gluten free diet. I just found out today that my family is plagued with chrons disease disease, leaky gut syndrome, hashimotos disease, and pancreatic cancer, and of course, Celiacs disease. I have been sick a few days now and not sure why. A similar rash popped up on my leg yesterday, but its starting to go away now and im feeling better. Does anyone know if these rashes could be DH?

[ravenwoodglass]

DH is usually bi-lateral and it also itches horribly and leaves purplish scars that take a very long time to fade.  While your rashes don't sound like DH that doesn't mean they may not be gluten related.  I hope you get some answers soon and that you heal quickly.

[squirmingitch]

I agree with ravenwoodglass.

[Awol cast iron stomach]

Hello I am sorry you are unwell. Has anyone done a skin biopsy for you? I know it is said DH is typically as ravenswood said bilateral, but my personal experience (although I have not been formerly diagnosed keep in mind -my IBS diagnosis from 20 years ago sticks despite my personal findings and beliefs)  is my right elbow flares before my left. My right elbow always flares worse than my left.  However I heed the right elbow to avoid further escalation of symptoms and pain. 

As I began uncovering my own gluten self diagnosis path 3 years back I began to use my flaring elbows as an indicator of food issues among other symptoms to track down gluten as my culprit.

While tracking my elbow flares I found once the right flared, burned, and itch I decided to eliminate that food item to avoid the left from physically manifesting the flaring as well.  

While I had sensations of symptoms in both elbows I wondered if my right physical manifestation was worse due to external rubbing at work (due to my desk and movements etc.) I found going off gluten resolved the issues and sensations for both elbows. So while to the naked eye one could see more visual manifestation on my right elbow , I felt the burning and itching on both. So my opinion it could physically m, visually, manifest more on one side. Do you get sensations on the other side same area even if no visual rash appears? I do.

My skin for a lifetime has had issues in (western medicine) I have had scarletina, hives, chicken pox, shingles (twice), (although it's not suppose to repeat, pupps, keratosis pilaris, noted and a very dry skin callus looking (undiagnosed) rash that flares on my heels and knees when on gluten or glutened.

My shingles flares in only one location and only on one side as well but I get the nerve burning sensations both sides. The shingles and elbow issues burn really badly and the pupps was the worst non stop maddening itching that lasted months. Chicken pox was mild compared to pupps and shingles. Regardless of the skin issues -All improve if I avoid gluten. 

My body through skin issues and many , many other symptoms  has told me to avoid gluten and I do. 

Good luck and feel better soon.

[Kurasz]

19 minutes ago, Awol cast iron stomach said:

Hello I am sorry you are unwell. Has anyone done a skin biopsy for you? I know it is said DH is typically as ravenswood said bilateral, but my personal experience (although I have not been formerly diagnosed keep in mind -my IBS diagnosis from 20 years ago sticks despite my personal findings and beliefs)  is my right elbow flares before my left. My right elbow always flares worse than my left.  However I heed the right elbow to avoid further escalation of symptoms and pain. 

As I began uncovering my own gluten self diagnosis path 3 years back I began to use my flaring elbows as an indicator of food issues among other symptoms to track down gluten as my culprit.

While tracking my elbow flares I found once the right flared, burned, and itch I decided to eliminate that food item to avoid the left from physically manifesting the flaring as well.  

While I had sensations of symptoms in both elbows I wondered if my right physical manifestation was worse due to external rubbing at work (due to my desk and movements etc.) I found going off gluten resolved the issues and sensations for both elbows. So while to the naked eye one could see more visual manifestation on my right elbow , I felt the burning and itching on both. So my opinion it could physically m, visually, manifest more on one side. Do you get sensations on the other side same area even if no visual rash appears? I do.

My skin for a lifetime has had issues in (western medicine) I have had scarletina, hives, chicken pox, shingles (twice), (although it's not suppose to repeat, pupps, keratosis pilaris, noted and a very dry skin callus looking (undiagnosed) rash that flares on my heels and knees when on gluten or glutened.

My shingles flares in only one location and only on one side as well but I get the nerve burning sensations both sides. The shingles and elbow issues burn really badly and the pupps was the worst non stop maddening itching that lasted months. Chicken pox was mild compared to pupps and shingles. Regardless of the skin issues -All improve if I avoid gluten. 

My body through skin issues and many , many other symptoms  has told me to avoid gluten and I do. 

Good luck and feel better soon.

The rash was only on my right side and i never felt anything on the left. I did stop when i started the gluten free diet 3 months ago. I now have scars that almot look like freckles. They didn't itch while they were active, they just gave a burning sensation that would come and go. Now that i think harder, they did itch as they were healing. Im wondering about this because ii found out DH is commonly mis-diagnosed as herpes or shingles. Im going to try to attach a pic of the rash that appeared on my leg with this most recent episode.

[Kurasz]

Sorry i cant figure out how to attach a pic.

[Awol cast iron stomach]

I agree the burning is not constant but it is as if when it subsides in between breaks the central nervous system still has sensations lingering. When I removed the gluten and I was healing it did itch more. I think mine burned and itched as my body was trying to heal even before I figured out gluten was the source that ills me. So it was a cycle of burning and itching mostly burning until gluten removed from daily menu.

I cant say for sure its not shingles but I am suspect given you were not tested as your family members. My IBS and many other symptoms to my knowledge were visual and symptom based diagnosis not serological or lab based. To pursue that avenue required insurance test justification and bills Etc.

Its in the Dr chart as shingles but you can create your own personal log of possible DH to be an advocate for your own body and to keep in mind if and when glutening or cc may occur once you rid your body of evil gluten. 

I realize the Dr.'s stated what was logical and got me in the ball park sometimes, but have accepted I am a mast cell marvel immunological specimen, that finally decided to listen to her body to tell herself what ails her. It said gluten for 3 decades, it was screaming gluten as I entered my fourth decade. I finally ignored others classifying my symptoms and listened to the expert -my own body. My own body doesn't care if it's defined in a western medical terms it just wants it to stop.

The one thing I do believe your body will continue to send you messages system by system as it ages and fights gluten in its best efforts as the war rages on. Until it stops then it will be exhausted, tired, and will need your Tlc to heal.

My hope is western docs and scientific researchers get more funding and interest in this growing epidemic. Ironically that is not immune (pun intended) to agricultural, food industry, political biasis as well.

It has taken the celiac. Com community and other grass roots celiac health advocates to bring it to the fore front. Our bodies are thankful to them on social media for they are sometimes the lightbulb flickering a beaconing light above the dark misty chaos of gluten and the mess swirling around it. 

Thanks for posting your question. I hope I am helping you because clearly your helping me. ?

 

[Kurasz]

27 minutes ago, Awol cast iron stomach said:

I agree the burning is not constant but it is as if when it subsides in between breaks the central nervous system still has sensations lingering. When I removed the gluten and I was healing it did itch more. I think mine burned and itched as my body was trying to heal even before I figured out gluten was the source that ills me. So it was a cycle of burning and itching mostly burning until gluten removed from daily menu.

I cant say for sure its not shingles but I am suspect given you were not tested as your family members. My IBS and many other symptoms to my knowledge were visual and symptom based diagnosis not serological or lab based. To pursue that avenue required insurance test justification and bills Etc.

Its in the Dr chart as shingles but you can create your own personal log of possible DH to be an advocate for your own body and to keep in mind if and when glutening or cc may occur once you rid your body of evil gluten. 

I realize the Dr.'s stated what was logical and got me in the ball park sometimes, but have accepted I am a mast cell marvel immunological specimen, that finally decided to listen to her body to tell herself what ails her. It said gluten for 3 decades, it was screaming gluten as I entered my fourth decade. I finally ignored others classifying my symptoms and listened to the expert -my own body. My own body doesn't care if it's defined in a western medical terms it just wants it to stop.

The one thing I do believe your body will continue to send you messages system by system as it ages and fights gluten in its best efforts as the war rages on. Until it stops then it will be exhausted, tired, and will need your Tlc to heal.

My hope is western docs and scientific researchers get more funding and interest in this growing epidemic. Ironically that is not immune (pun intended) to agricultural, food industry, political biasis as well.

It has taken the celiac. Com community and other grass roots celiac health advocates to bring it to the fore front. Our bodies are thankful to them on social media for they are sometimes the lightbulb flickering a beaconing light above the dark misty chaos of gluten and the mess swirling around it. 

Thanks for posting your question. I hope I am helping you because clearly your helping me. ?

 

Thanks for sharing your story. Your condition sounds almost identical to mine. I will be visiting my GI monday and im taking my wife with so i don't forget anything. I had the rash last time i saw him and forgot to mention it. I was just in so much pain that i completely forgot about the rash. I think he he would have liked to know about it. But at that time i knew nothing about celiacs. If this was indeed DH rash, i have every single symptom of celiacs.

[Kurasz]

My GI diagnosed men with irritable bowel syndrome. He said i have all of the signs of celiacs and should therefore stay gluten free. (no brainer). I am going in for bloodwork tomorrow to find out the extent of the diabetes that they discovered i have. The Dr. Did ask me how important a diagnosis is to me because it will be almost impossible to diagnosis after 3 months gluten free. I told him it really doesn't matter as long as i can get healthy enough to return to work. The irritable bowel diagnosis will help me get some financial aid to help cover the tens of thousands in medical bills.

[Awol cast iron stomach]

Kurasz,

I am glad you are finally getting the necessary guidance and healthcare you have been needing. Many on this forum I have read for one reason or another don't have the gold standard results /official diagnosis. Some may find pursuing that exacerbates health issues further. 

The Dr gave you the most important part stop eating gluten and avoid exposure. A diagnosis is helpful and helps Dr's treat as well informed as possible, but it's not a "contest" worth winning if you further damage yourself.

I think most of the forum members agree it is good to pursue it, but if circumstances alter or deviate from that gold standard route,it's not a "contest" worth winning. The forum members all want to be supportive and educate us so we avoid all they endured if possible.

you've endured enough, he told you avoid gluten, and I hope in your chart it says somewhere to avoid all gluten etc. so going forward all Dr's and medical personnel are well informed for prescribing and hospital diet etc. be on guard as other members inform us.

May your path to healing be paved with love and peace of those around you. You have been through enough. Now heal and allow others to help and support you as you heal.

best wishes

AWOL

[Kurasz]

After a little blood work i found out that 4 months gluten free has returned my blood sugar hemoglobin and thyroid to normal. I have even gained 10 lbs even though i lost a few more inches on my waistline. The dr diagnosed me with irritable bowel syndrome listing gluten as the trigger. He agrees that i have evry symptom of celiacs and should treat it as such, but he doesn't think that poisoning myself for a diagnosis is worth it. The way he labeled my irritable bowel syndrome covers my gluten allergy. 

I'm now on an even more strict diet, eating only organic fruits and vegetables along with grass fed beef, vegetable fed chicken, and fresh fish that i catch. I'm finally healthy and loving it!

[Fundog]

EXCELLENT.  I'm so happy for you!