Dermatitis Herpetiformis ... My Journey

[tinpins]

Starting to feel better  I was even able to go out on a really fun day trip yesterday and enjoy it. It was an annual field day trip for garlic growers (we grow it for personal consumption only : ) and I simply took along my own lunch ... a thermos with my chicken and vegie soup and when I got tired I just went and stretched out in the car and snoozed.

 

Here's what helped:

stopped the yogourt (so all dairy is OUT),

drink plenty of WEAK black tea with a couple of slices of ginger root (for the nausea),

and began to take Digest Gold digestive enzymes.

 

Before I began the descent into the black hole of DH misery about 1 1/2 years ago, I used to say I wanted to dance on my 100th birthday ... I gave up saying that over the last year or so ...  I did ... I thought my life was fast coming to a close.

 

But I'm starting to have hope that I'll feel that way again ... and soon  

[squirmingitch]

       

[mamat78]

I hope you are feeling better today tinpins.

My rash continues to improve. My skin still looks a mess but it does feel better. I slept the whole night without waking up itching for the first time in almost a year!

I have continued with my morning smoothies and I have to tell  you I am eating better than I ever have. I also discovered coconut oil and will now be adding a tablespoon of it in my smoothie as well as cooking with it. It is a bit pricey but it is suppose to help with skin issues as well as lower cholesterol so I'll give it a go.

One other thing, a big thanks to everyone on here, before I found this site I felt so alone. I'm not trying to be blubbery but I know I have been so depressed and I quit talking to my loved ones about how I was feeling because not only did they not understand they would joke about how I was always sick. I know they didn't mean harm but it cut pretty deep. I'm only 40 years old and I felt like I was near the end of my life and sometimes I wished I was. So not only is my body feeling better but my mind is too.

 

Jyn

Jyn it is just nice to know there are other people who "get it" as simple as that sounds! 

[mamat78]

Starting to feel better  I was even able to go out on a really fun day trip yesterday and enjoy it. It was an annual field day trip for garlic growers (we grow it for personal consumption only : ) and I simply took along my own lunch ... a thermos with my chicken and vegie soup and when I got tired I just went and stretched out in the car and snoozed.

 

Here's what helped:

stopped the yogourt (so all dairy is OUT),

drink plenty of WEAK black tea with a couple of slices of ginger root (for the nausea),

and began to take Digest Gold digestive enzymes.

 

Before I began the descent into the black hole of DH misery about 1 1/2 years ago, I used to say I wanted to dance on my 100th birthday ... I gave up saying that over the last year or so ...  I did ... I thought my life was fast coming to a close.

 

But I'm starting to have hope that I'll feel that way again ... and soon  

so sorry you are feeling so yucky with eating the wrong foods. I havent had any digestive problems since going off but I didnt really suffer consistently before either. My stomach issues would come and go. I would get shooting pains up the middle of my stomach for about 3 months and then it would stop, then I would get horrible indigestion for a while. For me, its been primarily the skin...and wow, am I feeling good now! Gluten free for 15 days and my nickel rash that I have had consistently for 6 years is fully gone and not even threatening to come back...feels so good to wear pants with a belt agian. I said last week that my legs are cleared up but they now have fully healed and I am just working on learning how to be fully gluten free. So far, so good  

 

I also had a CT scan for pulsatile tinnitis today. Hoping to find answers to that one! 

[tinpins]

so sorry you are feeling so yucky with eating the wrong foods. I havent had any digestive problems since going off but I didnt really suffer consistently before either. My stomach issues would come and go. I would get shooting pains up the middle of my stomach for about 3 months and then it would stop, then I would get horrible indigestion for a while. For me, its been primarily the skin...and wow, am I feeling good now! Gluten free for 15 days and my nickel rash that I have had consistently for 6 years is fully gone and not even threatening to come back...feels so good to wear pants with a belt agian. I said last week that my legs are cleared up but they now have fully healed and I am just working on learning how to be fully gluten free. So far, so good

 

I also had a CT scan for pulsatile tinnitis today. Hoping to find answers to that one! 

 

Please let us know what you find out from your CT scan ... that's a very nasty symptom to have to deal with. In retrospect mine was totally related to the DH and the consumption of gluten. Towards the end there, before I got a diagnosis and knew what was going on, I depressingly believed I was from a family line that was short lived and that it had something to do with my genetic makeup. Didn't think I had a lot of years left and that was an unbearable thought. The traumatic psychological journey this disease takes us on is significant and that's why this community is so valuable. We get support and understanding. We share our stories and connect the dots. We get help moving forward and healing. And for me personally, finding out it was genetic BUT that I could do something about it ... there are no words to describe that feeling. Only a fellow sufferer truly gets that. There are no glazed eyes here or rolled eyes when the word gluten is used ... just understanding. We are the lucky ones!

[mamat78]

CT scan...done yesterday. They said it would take a couple of days to get back to my doc. GOt a call today wanting me to go in to go over the results. Now I am scared. They dont ever seem to call unless there is something to report but maybe because its a CT they would? ANyone have any thoughts on this one? Should I be worried?? 

[tinpins]

CT scan...done yesterday. They said it would take a couple of days to get back to my doc. GOt a call today wanting me to go in to go over the results. Now I am scared. They dont ever seem to call unless there is something to report but maybe because its a CT they would? ANyone have any thoughts on this one? Should I be worried?? 

 

This may be their typical routine with CTs, and if it is that is wonderful. You get your report and you can get on with your life.  I have worried waiting for tests ... it's not a nice place to be. When's your appointment?

[mamat78]

This may be their typical routine with CTs, and if it is that is wonderful. You get your report and you can get on with your life.  I have worried waiting for tests ... it's not a nice place to be. When's your appointment?

I actually only got the message last night. I will make the appointment today and who knows how long it will take to get in. 

 

I have to ask, does anyone get rough,  bumpy skin in spots? I have had this on my arms off and on for a very long time. It seemed to have cleared up but lately (the last week or so) it is back. ALso, my head has been so, so itchy in the last week. I don't know if there is something I am eating that is contributing or what but it certainly is not better than before, like the rest of my rashy body! 

[tinpins]

I actually only got the message last night. I will make the appointment today and who knows how long it will take to get in. 

 

I have to ask, does anyone get rough,  bumpy skin in spots? I have had this on my arms off and on for a very long time. It seemed to have cleared up but lately (the last week or so) it is back. ALso, my head has been so, so itchy in the last week. I don't know if there is something I am eating that is contributing or what but it certainly is not better than before, like the rest of my rashy body! 

 

Yes and Yes ... My head was so itchy for a period of 10 days and that started before the DH became the all over body issue 15 months ago. It was so bothersome that I would regularly get my husband to look and see it there was anything living there 

 

And I have intermittently had a rash that is "sandpaper like" best way I can describe it ... not itchy like the DH lesions but still weird and bothersome because it doesn't respond to treatment (safe moisturizers did nothing to help it). Nor is it irritated or red. Interestingly, as my DH lesions have lessened in appearance and itchiness, those areas of "sandpaper" have started to reappear again on my arms in particular.    

 

 

Here's an excerpt from my notes for my PCP/GPs appointment in 2009! 

Along with these symptoms I had the major gut issues, the fatigue, etc.

 

About 3 weeks after initial diarrhea, intense itching of scalp

which lasted for about 10 days. Not sure if related but no other cause established.

Sandpaper like rash (not red) appeared on forehead.

 

When I look back on my notes of all the stuff that has been part of this journey, a journey that I now thankfully discover I am not travelling alone, I find myself wondering how we kept our sanity. It's like hacking your way through a jungle with a pocket knife trying to find answers.

 

I'm five weeks gluten free so far and have had some major gut issues ... but today is a better day and now I have a hatchet to make my way through the jungle of confusion ... and best of all there are those on here who have gone before us along this path and are willing to help 

 

Hopefully you'll get an appointment really soon too!

[mamat78]

Yes and Yes ... My head was so itchy for a period of 10 days and that started before the DH became the all over body issue 15 months ago. It was so bothersome that I would regularly get my husband to look and see it there was anything living there 

 

And I have intermittently had a rash that is "sandpaper like" best way I can describe it ... not itchy like the DH lesions but still weird and bothersome because it doesn't respond to treatment (safe moisturizers did nothing to help it). Nor is it irritated or red. Interestingly, as my DH lesions have lessened in appearance and itchiness, those areas of "sandpaper" have started to reappear again on my arms in particular.    

 

 

Here's an excerpt from my notes for my PCP/GPs appointment in 2009! 

Along with these symptoms I had the major gut issues, the fatigue, etc.

 

About 3 weeks after initial diarrhea, intense itching of scalp

which lasted for about 10 days. Not sure if related but no other cause established.

Sandpaper like rash (not red) appeared on forehead.

 

When I look back on my notes of all the stuff that has been part of this journey, a journey that I now thankfully discover I am not travelling alone, I find myself wondering how we kept our sanity. It's like hacking your way through a jungle with a pocket knife trying to find answers.

 

I'm five weeks gluten free so far and have had some major gut issues ... but today is a better day and now I have a hatchet to make my way through the jungle of confusion ... and best of all there are those on here who have gone before us along this path and are willing to help 

 

Hopefully you'll get an appointment really soon too!

ok so I also have the forehead bumps! I have never had an acne problem or a blemished face but for the past couple of months, I have had a really bumpy forehead. Not itchy or painful but noticeable to touch. My daughter even asked me why my forehead was so bumpy....oh the joys of sorting all of this out! 

 

Glad to hear you are feeling ok today. I just made a gluten free yummy pizza and at times like this, I think I can handle gluten free easiy. Its when I am stuck having to eat out that I curse the gluten free life! 

[tinpins]

Here's something I read last night that was posted on April 25, 2013

 

 

Intestional biopsy no longer required for diagnosis! Dr Jean Layton

Open Original Shared Link

 

Published today in the BMC Gastroenterology, finally a conclusion that might help people get to an understanding of their reaction.

This review study gathered information from 40 different studies, all looking to see whether the invasive biopsy is truly necessary for celiac diagnosis.

Their conclusion?

“There is no single test — not even jejunal biopsy — that can conclusively diagnose or exclude celiac disease in every individual. Therefore, we propose the following two-step diagnostic procedure: The first step is the combined, simultaneous determination of IgA anti-dpgli and IgG anti-dpgli + IgA anti-tTG and/or EMA. The vast majority of patients will have either three positive or three negative results, obviating the need for a biopsy. The second step, jejunal biopsy, should be performed only in patients with discordant antibody results (i.e., in patients whose celiac disease status cannot be classified by antibody tests alone). In any case, effects of a gluten-free diet must be controlled.”

 

Take Home Message:Celiac Diagnosis

 

If you have symptoms, or first degree relatives who have celiac disease, convince your doctor to run a complete celiac blood panel to see. The needed tests are IgG anti-dpgli + IgA anti-dpgli + IgA anti-tTG. No longer is the anti endomysial antibody considered essential for diagnosis.

For all the Geeky folks like me, here is the original research and citation

Open Original Shared Link

 

[tinpins]

And another link to a blog by an MD with celiac disease:

 

 

 

Open Original Shared Link

 

 

 

 

My DH symptoms have lessened considerably over five weeks  but my gut is another story

.... it's a day-by-day, no meal-by-meal journey for now.

 

There's much to learn!

[tinpins]

And I just found this paper which is current (April 2013) and very informative:

 

 

American College of Gastroenterology Publishes Clinical Guidelines on the Diagnosis and Managment of Celiac Disease.

 

The list of contributing authors reads like a celiac disease hall-of-fame: Alberto Rubio-Tapia, MD, Ivor D. Hill, MD, Ciarán P. Kelly, MD, Audrey H. Calderwood, MD and Joseph A. Murray, MD.

 

 

The guidelines provide 21 pages of much needed information for physicians who still tend to consider celiac disease a rare disease and often fail to consider it even with typical presentations.

 

 

Open Original Shared Link

 

[squirmingitch]

 

And I just found this paper which is current (April 2013) and very informative:

 

 

Super! Long but super! Will read all the way through when I have time. Thanks tinpins!

[tinpins]

Super! Long but super! Will read all the way through when I have time. Thanks tinpins!

 

Hope you're feeling a bit better squirmy.

[squirmingitch]

Yes, better! Still waiting for the ax to fall but feeling better. I can move my shoulder now, not 100% range of motion but a darn sight better than none.

Thanks tinpins

[tinpins]

Along with the gut pain that reared it's ugly head a couple of days ago, (in retrospect I realize right after I washed my hair) I was again getting an eruption of lesions on my upper back again!

 

Oh the despair you feel when symptoms start to reappear .... I keep a food diary and note my symptoms in it too.   I was baffled, I'm eating a very clean diet.

 

I read Open Original Shared Link this morning (by an MD with celiac disease) ... went to look at my shampoo bottle ... third ingredient hydrolyzed wheat protein. I don't need any other convincing ... I'll be purging anything from my bathroom now that has my poison in it. 

 

So just last week I was thinking it was the milk products I had added back into my diet on the advice of my dietitian ... I was wrong. I will introduce milk products again eventually. It was my hair products and I can clearly see the pattern now. These relapses happened when I washed my hair! It's always easy to connect the dots in retrospect isn't it?

[squirmingitch]

Oh tinpins, I am SO, SO SORRY! I feel responsible for your outbreak. I was sure we covered the shampoo, lotions, topical products issue. I see I did not. Again, I apologize from the bottom of my heart!

Obviously you know now but to lay it out for future readers....

 

Check ALL topical products you use ~~~ ALL of them for gluten containing ingredients. Anything we use topically has a chance of getting into our mouth. And with dh; even though "the experts" ie: docs say topical gluten can't affect you b/c it can't go through your skin; I say they didn't think it out far enough. Put lotion on your legs & sometime during the day you touch your legs & then your lips, maybe over & over again. We with dh often have lesions which would allow gluten to get into our skin unlike skin that is unbroken.

And the topical products goes for people you are exposed to all the time such as spouse & children. if your child uses a facial moisturizer that contains gluten & you kiss her cheek...... You get gluten lips.

[pricklypear1971]

I'm on a treadmill do pardon the mistakes...

But tell hubs to brush his teeth and wash his hands with soap after eating gluten ,before touching/kissing you).

[tinpins]

Thank you Squirmy and Prickly ... I would never have believed it until it happened over and over in the last five weeks (and obviously over the heavens knows how many years before!). You don't have to apologize ... and I believe it was one of you that told me to keep a food diary and that is what helped to to connect the dots....I wasn't ingesting anything that I could link this to ... except the milk maybe. But when I wasn't touching milk products then I started to feel really discouraged until "the light went on" ... I think my eyes must have been as big as saucers when I picked up the shampoo bottle ... and the conditioner ... and read "poison lurks here" ... hydrolyzed wheat protein.

 

I'm feeling much more optimistic about things now despite the discomfort ... I feel like I'm back in control again     

[squirmingitch]

Remember though that the milk is iodine so if you go back to it & get itchy again.......

 

And I will mention that when you see products (topical) that claim "with Vit E!" well, vit E comes from wheat but not all of it does but that's beside the point..... Vit E even though it comes from wheat is in THIS form okay for us in shampoos, lotions, etc....

Tocopheryl Acetate

[pricklypear1971]

And you will have those "you gotta be s_{#%<€* me" moments - when there's absolutely no reasonable explanation for anything. So roll with it (and your food/activity journal).

Took me months to figure out viruses triggered an outbreak. Tooke months to figure out I was breaking out, but the lesions were too tiny to see in a reflection 3 ft away...

[tinpins]

 

Remember though that the milk is iodine so if you go back to it & get itchy again.......

 

And I will mention that when you see products (topical) that claim "with Vit E!" well, vit E comes from wheat but not all of it does but that's beside the point..... Vit E even though it comes from wheat is in THIS form okay for us in shampoos, lotions, etc....

Tocopheryl Acetate

 

Don't worry ... milk is far from my mind still. I want to be feeling much better before I even think about the kefir or yogourt. Now it's time to empty out all the cabinets and see what else is hiding there! And then figure out what to replace it with : ) Thanks for the info about the shampoo. I'm just so relieved I figured out what it is!   What a trip!

 

I think I'm starting to get the hang of it prickly ... 

[pricklypear1971]

Don't worry ... milk is far from my mind still. I want to be feeling much better before I even think about the kefir or yogourt. Now it's time to empty out all the cabinets and see what else is hiding there! And then figure out what to replace it with : ) Thanks for the info about the shampoo. I'm just so relieved I figured out what it is! What a trip!

I think I'm starting to get the hang of it prickly ...

If you have some pans that are irreplaceable loves (or don't know what to replace them with yet), you can line them with foil or parchment paper.

I use parchment on all cookie sheets because gluten-free cookies stick -parchment allows you to pull them off the sheet to cool. I've lined favorite pans with foil, too, for baking. I found I like smaller pans for gluten-free baked goods - seems to cook better and I like to freeze muffins, loaf cakes, cupcakes for later, so more loaves are better...

Anyway, just something to think about as you go through the kitchen. I certainly changed preferences re:cooking equipment after going gluten-free. I'm glad I waited to replace some stuff (that I could work around).

[tinpins]

If you have some pans that are irreplaceable loves (or don't know what to replace them with yet), you can line them with foil or parchment paper.

I use parchment on all cookie sheets because gluten-free cookies stick -parchment allows you to pull them off the sheet to cool. I've lined favorite pans with foil, too, for baking. I found I like smaller pans for gluten-free baked goods - seems to cook better and I like to freeze muffins, loaf cakes, cupcakes for later, so more loaves are better...

Anyway, just something to think about as you go through the kitchen. I certainly changed preferences re:cooking equipment after going gluten-free. I'm glad I waited to replace some stuff (that I could work around).

 

Really helpful ... I usually do a lot of baking/cooking but have been away from it for a while (wonder why?  : ) and I've  just been cooking simple stews and soups and eating lots of apple sauce and bananas. I'll be ready to tackle baking again soon and the smaller pans idea is great! Tks