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Dermatitis Herpetiformis ... My Journey
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176 posts in this topic

I found this forum after several days of researching on the internet and I have been reading through the threads of this forum. I’m so grateful that so many have shared their knowledge and their journey. It has helped me to feel less alone and more confident in what I must do. 

 

I'm sharing my journey in the hopes that it will help someone else who is searching for answers too.

 

Prior to the appearance of this rash 15 months ago, I have had an unbearably itchy back for at least 7 years and at times I could not even tolerate any pressure from clothing. Nothing would soothe or provide relief from the constant itch.

 

10 years ago I was diagnosed with Dupuytren’s contracture in my right hand. Within the last two years it has developed in both hands and seems to be developing in my feet.

 

5 years ago I was diagnosed with Osteoporosis ... I was shocked as I try to lead a healthy life ... exercise, eat well, etc.

 

15 months ago (March 2012), immediately following a nasty bout of flu, I developed 

  • An intensely itchy/burning rash that has been present constantly ever since. It began on upper chest, then went to my back and buttocks and now has slowly spread to limbs and neck. Raised liquid filled bumps appear that bleed profusely and repeatedly after being scratched and do not heal for months. Nothing soothes these lesions.
  • Frequent headaches on waking
  • Frequent lower abdominal stomach aches after eating 
  • An very occasional feeling of discomfort in my left side (?kidney)

Over the last 15 months I have eliminated using, or used only infrequently:

  • all known allergenic foods
  • scented soaps, shampoos, moisturizing lotions
  • showering only twice a week (chlorine?) and because it hurt!
  • contact with pets
  • dyeing hair
  • fragrances
  • laundry soap (rinse things x 3)
  • multi vitamins
  • alcohol

 

 

I have had multiple tests over many years and have been advised to avoid eating many foods, and I do. Anaphylaxis is a frightening experience and I've had two incidents some years ago.

 

Just a few days ago, on the morning of May 7th after a second sleepless, crazy irritable, itchy-all-over night within a week I realized what the culprit was. Both evenings I had eaten a double helping of fresh home made King Arthur bread! Poisoning myself with "goodness". How could I be so naive? 

 

With all the other things I am allergic to I had forgotten that in 1991, the allergist I saw he must have told me to eliminate wheat from my diet because it's one of the things he underlined on the sheet of things I should not eat, but he didn’t emphasize it or I would have remembered. I found the information in my file when I was gathering all my notes together for my appointment to see my allergist next week. 

 

So over the last couple of decades I have not been eliminating wheat from my diet and unfortunately for the last year or so we have been baking all our bread at home and consequently eating more than we normally would because of how good it is.

 

After finding this forum and reading many of the threads, I now know what I am dealing with.  My symptoms and visible lesions suggest Dermatitis Herpetiformis.

 

Upon realizing this a couple of days ago, I completely eliminated gluten from my diet.

 

All these years searching for an answer ... I now have hope that my quality of life will be restored and that maybe some of the damage already done to my body can be at least halted if not reversed. The photo in the top right of this page could be me!  http://www.lookfordiagnosis.com/mesh_info.php?term=Dermatitis+Herpetiformis&lang=1

 

I have an appointment with my allergist next week and I plan on going along with notes and photos. I don't want a biopsy or tests ... just a plan of action going forward. Nutritionist maybe? I have a feeling that I will get a lot of help here. Sorry this post is so long ... it's been a long journey! 

 

Best I could do for a photo is this link. It shows a small area of my body that is affected:

 

http://flic.kr/p/eiiS6R

 



 

Edited by tinpins
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Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination".

Also, if you are dealing with dh, you may try a period of low iodine to help push it into remission. I suggest the thyca.org diet, sans gluten. Google it.

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Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination".

Also, if you are dealing with dh, you may try a period of low iodine to help push it into remission. I suggest the thyca.org diet, sans gluten. Google it.

Thank you .. I will follow your advice and check out thyca.org also.

 

I have much to learn but I also have hope finally.

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Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 
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Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

 

Thank you so much for all the links and your advice. I am so sure that this is what I have that going totally gluten free immediately was a no brainer. I have already learned so much from my reading on this site. I know that there is no miracle cure but I feel like I have come to a place of understanding ... and support. 

 

I've been trying to post a photo I took two days ago, and uploaded one to flickr as recommended, but I've not been successful in getting it to appear here. I'll try again here and if it doesn't work I'll ask for help : )

 

 ... I don't seem to have succeeded. Any hints anyone?

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Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

 

Think I might have figured out a way to share a photo with this link ... it shows part of my torso that is affected ... same on the other side and both arms. 

 

http://flic.kr/p/eiiS6R

 

Thank you again for all your helpful advice ... I'm finding it everywhere as I read through the posts  :)

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Sure sounds and looks like you have found your answer, IMHO.  This is a great place to find information about Celiac.  I too was helped and stumbled onto this site by searching the net.  

 

I take Dapsone which has helped spare my sanity!  There is also a topical form of Dapsone. . . you may consider this in addition to your diet.  Wish you the best!

 

 

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Sure sounds and looks like you have found your answer, IMHO.  This is a great place to find information about Celiac.  I too was helped and stumbled onto this site by searching the net.  

 

I take Dapsone which has helped spare my sanity!  There is also a topical form of Dapsone. . . you may consider this in addition to your diet.  Wish you the best!

 

 

Thank you Lyn ... you have had a rough journey and I appreciate you sharing your thoughts.

 

I have been reading about the topical Dapsone so it is of interest to me if I can tolerate it.

 

When one of the members (I think it was Squirmyitch) used the term "the suicidal itch" to describe this condition, I actually burst into tears of relief. Someone understands.  I feel optimistic that now I can eventually find some comfort and halt the damage that is being caused to my body. I know I have much to learn.

 

It's funny because last Saturday my PCP/GP called me at home (!)  I'd been in to see him earlier in the week and asked him to send me back to the allergist  ... in fact I simply said "help ... this is becoming unbearable". So when he called me he said if I didn't hear from the specialists offices with appointments soon to call him back because he had just read an article and it sounded like he knew what I had from the article (he wouldn't say) ... but he said it was most important that I see the dermatologist and not just the allergist.

 

And that night is when I had the second severe all night reaction (after eating lots of fresh home-made bread). The following morning is when I realized it was wheat and armed with that knowledge and with my GPs words from the day before I started doing my research on the internet .... and I found this forum and I found hope.

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Yes, we get it. Unfortunately :).

Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry.

Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative, IF a doctor was suspicious.

You're left with setting your jaw and plowing forward with gluten-free if you're lucky enough to figure it out on your own.

So, we get it. Feel free to vent and scream and ask questions. I sincerely hope this is your answer because chronic mystery skin diseases can be horrible to live with.

Please do NOT underestimate the power of a gluten-free and low iodine diet in the beginning, if this is dh. High iodine foods made my rash flare hideously, even while strictly gluten-free. Not everyone is as sensitive to iodine as I was - and quite frankly, that sensitivity was enough to "seal" my dx...

Good news, if you are iodine sensitive you may find it a drug-free way of controlling the rash. I was strictly low iodine two weeks, then started adding back slowly. I found I was more sensitive to certain high iodine foods - egg yolks, carrageenan, asparagus, potatoes. Everything else I could tolerate quite well. I think iodine is cumulative - so I ramped up intake over 3 months, and by then I was able to eat anything but gluten.

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I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.

I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It  has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out  the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable. :D Small victories.

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I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.

I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable. :D Small victories.

But they are still victories! Yay!

I can't describe how thrilled I was to eat a whole egg...can't imagine how you'll feel.

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Yes, victories are victories & each one gives us something to grasp so we keep moving forward. Oh how right you are Prickly! I dream of a plate full of fried eggs sunny side up. I will get there too. 

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Squirmingitch, Pricklypear and Sisterlynr, ... thank you

 

I read your posts and am most grateful for all your helpful advice. As I put together my medical records to see my specialists in the next week and organize them into date order, the realization that I have been struggling along on this journey for 40 years shocks me. Many, many allergists and dermatologists perplexed over the years ... all the morning headaches, constant wicked stomach aches, constipation, and the "suicidal itch" ... I can now have hope that they can eventually be left behind as a very bad memory. I feel like I can get my quality of life back because I don't need to say these words to anyone here  ... the last year in particular has been most unpleasant. 

 

I'm educating myself on the gluten free diet and will definitely eliminate iodine for a period of time as well. The reason I initially thought I might need to see a nutritionist was because as well as many many food and airborne allergies, I also developed osteoporosis five years ago. I see from all the reading I'm doing that it often accompanies DH as well  :(

 

As well as staying off gluten, and iodine (soon as I figure out where it all is) I've started to use aloe vera juice, quercetin and L-glutamine. Does anyone have any comments about these supplements and their experience with them?

 

This forum feels like a wonderful gift to me ..... thank you!

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Hi tinpins - I just want to say that your rash looks very much like mine did along with the scratch marks (I have some of my pics posted in the photo bank thread).  It was the worst itching rash I have ever had in my life, like a combination of poison ivy, sunburn, chickenpox, hives - burning, painful (showers were terribly uncomfortable) and itchy, waking me in the night over and over.  The spots matched the classical description, elbows, hips, back of neck, knees, slowly spreading elsewhere, and in an almost perfect bilateral symmetrical pattern.  My DH test came out negative but I later saw a GI doctor who said he is 80-90% confident I have celiac.  He told me to never eat gluten again, not even a tad bit of it and definitely not the amount one needs before testing. 

 

There is hope for you, a smily face at the end of the tunnel.  There is lots of food I miss but knowing what it could do to me if I eat it makes it much easier. 

 

Jane

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Hi tinpins - I just want to say that your rash looks very much like mine did along with the scratch marks (I have some of my pics posted in the photo bank thread).  It was the worst itching rash I have ever had in my life, like a combination of poison ivy, sunburn, chickenpox, hives - burning, painful (showers were terribly uncomfortable) and itchy, waking me in the night over and over.  The spots matched the classical description, elbows, hips, back of neck, knees, slowly spreading elsewhere, and in an almost perfect bilateral symmetrical pattern.  My DH test came out negative but I later saw a GI doctor who said he is 80-90% confident I have celiac.  He told me to never eat gluten again, not even a tad bit of it and definitely not the amount one needs before testing. 

 

There is hope for you, a smily face at the end of the tunnel.  There is lots of food I miss but knowing what it could do to me if I eat it makes it much easier. 

 

Jane

 

 

Jane thank you ... I believe there will be a smiley face but I think it's a bit in the distance yet. This feels so wretched that there is no way I would want to poison myself with gluten just to possibly get a positive diagnosis. I've done enough damage to my body ... it's time for healing.

 

I'm off gluten and I'll get off the iodine too as soon as I've figured out where it all is : )  There's lots to learn. I'm only a few days on this new path and there is some improvement ... not a single headache or stomach ache! Now that's amazing!     

 

But the itch ... oh wow ... don't we know ... it's wretched and it seems like it is worse today with lots of new nasties appearing. Never mind ... I'm optimistic that change is on the way  :)

 

(I did look at your photos and saw the same wretched nasties!)

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A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  :lol: ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:

raisins & grapes

Watermelon

asparagus

all dairy

egg yolks --- whites are fine it's the yolk that carries the iodine

seafood

lima beans

turnip greens, mustard greens, spinach ---- "greens" as we call them in the south

peanuts b/c the skin carries the iodine

the skin of potatoes so peel them deeply

carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!

There are a few more names for derivatives of kelp or sea algae --- thyca lists them

white beans, kidney beans & a few more

iodized salt of course so use plain salt or sea salt

coconut, coconut milk, coconut flour

red dye #3

 

here's a link to the thyca low iodine diet:

http://www.thyca.org/rai.htm#diet

 

OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.

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A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  :lol: ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:

raisins & grapes

Watermelon

asparagus

all dairy

egg yolks --- whites are fine it's the yolk that carries the iodine

seafood

lima beans

turnip greens, mustard greens, spinach ---- "greens" as we call them in the south

peanuts b/c the skin carries the iodine

the skin of potatoes so peel them deeply

carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!

There are a few more names for derivatives of kelp or sea algae --- thyca lists them

white beans, kidney beans & a few more

iodized salt of course so use plain salt or sea salt

coconut, coconut milk, coconut flour

red dye #3

 

here's a link to the thyca low iodine diet:

http://www.thyca.org/rai.htm#diet

 

OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.

 

 

Again ... thank you, thank you!  I was all set to make a list for myself this evening. And for the last few days I've been carefully checking everything before it goes into my mouth (like vitamins). Once I get myself familiar with the process I'll be fine. I've had to avoid lots of foods (curry = anaphylaxis) and drugs (aspirin, NSAIDs, sulfa, etc.) for 30+ years so this is just another layer of learning and avoiding.

 

Can't believe what I am seeing on this list though. Watermelon and peanuts give me the worst belly ache so I can't eat them ... appears that my body has been trying to get my attention for years.   :mellow:

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A few more items I would like to cover.

Gluten withdrawal. Use the Google search box near the top on the left hand side & put in gluten withdrawal --- you'll come up with hundreds of threads dealing with the subject. Familiarize yourself with it as you may experience it. Most of us do; some don't. My hubs was 1 of the lucky ones who didn't but probably b/c he was gluten light b/c of me for 5 months before we found out he had dh too.

 

We have not eaten out once yet. B/C of the risk of cross contamination (cc) is too great & dh is sensitive to the tiniest amount of gluten. Eat out at your own risk.

 

If your family would agree to go gluten-free with you at least IN the home; it would make things so much easier. They can eat gluten when away from home. But that's something you have to discuss with them & decide as a family. Hubs has to brush his teeth WELL before kissing or you can get glutened.

 

Here are some things you can eat to help get over the rough spots. Being as my hubs & I are both low iodine I will share some of the things we have found that fit both the gluten-free & the iodine criteria.

Namaste' Spice Cake Mix ---- YUM!!!!! It actually rises! And tastes wonderful! Namaste' products are made in a gluten-free facility & no dairy or soy is used. Yay! Frost with Duncan Hines Creamy Homestyle Classic Vanilla Icing --- no dairy in it.

Enjoy Life cookies are terrific & no dairy, soy, nuts etc.... They also make chocolate chips which have no dairy or casein & are great.

Frito Lay (google their gluten-free list) has gluten-free products but they also have a list of the ones they batch test --- we only eat from that list.

Mediterranean Snack Foods is a gluten-free facility totally. They make some baked chips & other stuff & they test & have the gluten-free certification org. approval. Check the individual products though as some contain milk or casein products. They use plain salt or sea salt but no iodized salt.

Vlasic pickles has 2 plants --- 1 they use plain salt & the other they use iodized salt --- you'd have to call with the code on each & every jar to find out which it was made in so we decided not to eat Vlasic anymore. Mt. Olive pickles use plain salt. Ball Park hot dogs, Jimmy Dean sausages & Hillshire Farms clearly label any gluten containing ingredients & none of them use iodized salt in their products.

Glutino's Genius bread has no milk or casein & uses plain salt.

Kosher products do not use iodized salt.

I tired Chebe mixes but we found them unsatisfactory. Hard on the outside & like sticky rubber inside.

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Jane thank you ... I believe there will be a smiley face but I think it's a bit in the distance yet. This feels so wretched that there is no way I would want to poison myself with gluten just to possibly get a positive diagnosis. I've done enough damage to my body ... it's time for healing.

I'm off gluten and I'll get off the iodine too as soon as I've figured out where it all is : ) There's lots to learn. I'm only a few days on this new path and there is some improvement ... not a single headache or stomach ache! Now that's amazing!

But the itch ... oh wow ... don't we know ... it's wretched and it seems like it is worse today with lots of new nasties appearing. Never mind ... I'm optimistic that change is on the way :)

(I did look at your photos and saw the same wretched nasties!)

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfreedrugs.com/list.htm

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Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfreedrugs.com/list.htm

 

 

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfreedrugs.com/list.htm

 

This is wonderful!

Again ... I feel like I have been given a most wonderful gift. All this information is invaluable.

I just had my husband apply liberal amounts of witch hazel on my back, and while it was still moist to fan it.

A few minutes of relief ... but now I'm off to get an icepack : )

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Compression helped me. I'd pack a super soft washcloth under my arms and squeeze. Especially in the evenings when it would swell and pop.

And ice packs. Lots of ice packs. I slept with ice packs.

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Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfreedrugs.com/list.htm

 

 

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfreedrugs.com/list.htm

 

 

Ice packs ... who knew. They work. Thanks also for the website for the gluten free meds. 

 

Today I was reading forum threads about blood in clothing and sheets ... boy can I identify. When this first started 15 months ago  :( I was away from home for two months in a rental apartment overseas. I was almost paranoid about bleeding into the sheets and would use a towel or piece of clothing on my pillow case and sheet to avoid this happening. 

 

It is such a relief to finally know that this can change. In a desperate attempt to figure out what was causing this misery I have had my doctor check me for parasites, h. pylori bacteria and I've even thought "could it be bedbugs" ... who hasn't been here?

 

Right now I'm still listing all the things that I can eat and what I need to avoid besides gluten (e.g. iodine restriction and my food allergies for which I will be retested later this week).

 

The more I read on the forum threads the more pieces are falling into place. The help I am getting from everyone's sharing is unbelievable. Thank you almost seems inadequate ... with your information and with a some effort on my part  .... I'm getting my quality of life back!  :wub: 

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It's hell alright ... it's as if my body is saying "where's my gluten fix?" ... more eruptions, more itching, no headaches but a "numb" feeling in my head and a sense I will burst into tears if anyone looks at me the wrong way. And I had a stomach ache last night after supper which was so disappointing after almost a week free of them. I'm keeping a food diary to keep track.

 

I retook photos of both sides of my body today for my records and was absolutely amazed at how symmetrical this rash is.

 

Now I find myself really worrying about the ongoing (I've noticed it for the 15 months I've had my rash) slight discomfort I have had in my left kidney area. Anyone else had kidney involvement? I've got lots of questions for my doctors ... but in the meantime I just have to  keep going on this new journey and try and find some comfort in the knowledge that this will get better.

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I've read some threads where people have had some kidney issues --- 1 I read recently had to do with the person having blood in their urine for a long time & then gluten free it's gone. Poof! I had microscopic traces in my urine (before I knew about celiac) & went lickety split to the urologist b/c my hubs had bladder cancer & I know the first sign is blood in your urine so the uro checked me out 14 ways from Sunday. Did CT scans, cystoscopy & a real expensive fluorescent something or other test which I can't remember the name of now but it's the gold standard for seeing if anything is amiss with the entire urinary tract. Zip, zilch, nada. He tested my urine 3 times over several months & still the microscopic blood continued. He finally said, "It's just what you do. Some people do." Guess what? Since going gluten free  there has been no blood in my urine. Hmmmm.....

But go ahead & tell your doc about it anyway & get it checked out.

That numb feeling in your head is what we call brain fog. It might get worse to the point that you feel like a complete & utter idiot. Sorry, just letting you know. And this too shall pass. It really will, I promise. Oh yeah, you'll get all whacked out with the emotions like you're going through menopause & most of us get really, really angry --- we snap & snarl with zero provocation. 

The stomach ache could be gluten withdrawal or a food reaction. good that you're keeping a food log. GOOD GIRL!!!!! But stomach issues from gluten can take a while to resolve. You can yo-yo for 6 months or possibly longer. We didn't get like this overnight & we won't heal overnight. It takes time. The important thing is that you began NOW instead of years from now.

 

Hugs hon

 

(((((((tinpin))))))))

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I've read some threads where people have had some kidney issues --- 1 I read recently had to do with the person having blood in their urine for a long time & then gluten free it's gone. Poof! I had microscopic traces in my urine (before I knew about celiac) & went lickety split to the urologist b/c my hubs had bladder cancer & I know the first sign is blood in your urine so the uro checked me out 14 ways from Sunday. Did CT scans, cystoscopy & a real expensive fluorescent something or other test which I can't remember the name of now but it's the gold standard for seeing if anything is amiss with the entire urinary tract. Zip, zilch, nada. He tested my urine 3 times over several months & still the microscopic blood continued. He finally said, "It's just what you do. Some people do." Guess what? Since going gluten free  there has been no blood in my urine. Hmmmm.....

But go ahead & tell your doc about it anyway & get it checked out.

That numb feeling in your head is what we call brain fog. It might get worse to the point that you feel like a complete & utter idiot. Sorry, just letting you know. And this too shall pass. It really will, I promise. Oh yeah, you'll get all whacked out with the emotions like you're going through menopause & most of us get really, really angry --- we snap & snarl with zero provocation. 

The stomach ache could be gluten withdrawal or a food reaction. good that you're keeping a food log. GOOD GIRL!!!!! But stomach issues from gluten can take a while to resolve. You can yo-yo for 6 months or possibly longer. We didn't get like this overnight & we won't heal overnight. It takes time. The important thing is that you began NOW instead of years from now.

 

Hugs hon

 

(((((((tinpin))))))))

 

The support and encouragement you so kindly share is a very precious gift. Thank you so much. Putting all the paperwork together from my medical history is probably not helping me at the moment. But I need to do it so my doctors don't have to waste any more time. It is like fitting all the pieces of the puzzle together and seeing the whole picture finally. I'll be in better spirits once some of these symptoms ease up and I have been reassured that 40 years of poisoning myself with gluten have not done any more damage to my body than what I already know about. Osteoporosis diagnosis five years ago was a huge shock and I can't help but wonder if the Dupuytrens (10 yrs +) that has been worsening over the last year is related? Meanwhile your hugs are greatly appreciated as is your advice.  You understand and care enough to take the time to help others struggling along on the same path ... Hugs to you too  :wub:

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