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Newbie Feeling Desperate. How Long Before I See Improvement?


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#1 BeckyB.

 
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Posted 09 January 2014 - 08:18 AM

I have been reading through this forum voraciously... I am absolutely desperate as anyone who has DH would understand!

 

My back story in as brief as possible:

I have wondered for a few years if I could have a gluten sensitivity just due to the irregularity of my bowels and the occasional not-sure-if-I-am-going-to-make-it-home-from-the-restaurant-feeling. I have talked about this with a few of my gluten-free friends just in passing, suggesting that if I do have GI issues they really are relatively mild and have never been particularly worrisome. Just a little tummy trouble here and there, not any of the other more significant GI related symptoms.

 

Then the first week of August I began to develop a rash. I have seen multiple physicians (no dermatologist yet, the wait around here is 6-9 mos for a first visit), and all were completely stumped. The rash keeps me awake most nights unless I take something (benadryl, atarax) to aide me in sleeping. While they help me sleep- I still awaken itching through the night, just not as often. 

 

It was during a late night desperate research session that I came across DH and after looking into have become nearly convinced this is what I have. At this point I am almost praying it's what it is because at least then I would have an answer and a treatment. I have said many times that this itching/burning INCESSANTLY makes me feel literally tormented, and I don't think that is too strong of a word at all.  I have not seen blisters, but have many of the lesions that appear to arrive post blister. I just don't think my scratching hands allow anything the time to actually develop a blister. I also have a larger, red, slightly raised rash over much of my legs and arms in addition to the lesions. My legs look like a nightmare from all of the places the lesions are, and used to be. Not seeing a bathing suit in 2014's list of predictions. Also- my skin tends to be extremely itchy even in places I am not broke out directly (behind the knees, inside of my forearms, etc)

 

Anyway, this is my question- I have combed the forums and I KNOW it can take six months, a year, five years for the rash to COMPLETELY go away (if it ever does with risk of accidental glutening or cc'ing). But HOW LONG WILL IT TAKE TO SEE IMPROVEMENT. I have only been gluten-free for about two weeks and just want to see that there is a light at the end of the tunnel. But if I have seen any improvement, it's like 2% and that may just be in my head. The improvement I have seen is I feel like some of the lesions I have that were very deep and had hung around for a while are finally starting to show signs of healing, and perhaps the new lesions are not quite as large around or as deep. In fact one of them has healed and gone away. But the healing of lesions (and then development of new ones) seems to be a part of this cycle so can't attribute it to being gluten-free.

 

I have seen my dr with this info. She agrees this is likely what we are dealing with, is referring me to a derm, and refuses to prescribe dapsone without a positive dx. I had only hoped to get the meds for a week or two to see if there was an improvement just so in my heart I would KNOW.

 

If I KNOW this is caused by gluten, you bet your sweet bippy that I will avoid it at ALL COSTS. But a six month "experiment" to sort it out in this misery is a little unthinkable at this point. I KNOW it's early, but I just need to know from some of you when I MIGHT start to see improvement? I am contemplating cutting out iodine also just because it really seems to be a trigger in many, but hate to eliminate everything and find out this isn't even what I am dealing with and have lost all of this time tracking the real culprit. Also read on here maybe I needed to give gluten-free a month to work before also cutting out iodine? That feels like lost time if I am being aggravated by iodine. Would it not be better to cut it out then do a test run in a few months to see if that was exacerbating or if I may be okay to add it back in at that time?

 

As you can tell, I am feeling quite desperate. I can upload a few pics of the rash if you like- its certainly not as extreme as I have seen but definitely appears to fit the bill from my own research. Doesn't respond to steriods antihistamines, or any other meds we have tried. Also I have gotten all gluten-free lotions and skin products to use now (took me a day or two to realize they were hiding there as well). 

 

Any encouragement you may have is greatly, greatly appreciated. I'm not a baby and have been moved to tears by this stupid rash many times. MANY times. 

 

Thanks for this forum- it's been a lifeline to me these last weeks.

Becky


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#2 pricklypear1971

 
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Posted 09 January 2014 - 09:19 AM

I know this is not what you want to hear - because I've been where you are at and it's misery - but everyone is different.

Learning gluten-free is a process. So, at two weeks you're probably still getting some gluten, if from nowhere else cc... So, keep working at it.

I advise trying low iodine up front, because in my experience it was the trigger that defied gluten. I was gluten-free two months and still randomly breaking out because I needed to lower my iodine levels.

And finally, did your doctor order a full celiac panel before you went gluten-free? Because if she did, and it was positive, that would open up the possibility of dh.
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 ItchyAbby

 
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Posted 09 January 2014 - 10:52 AM

Hi Becky,

Welcome to the forum! :D

 

While it's hard to say whether you have DH or not, your post sounds a lot like my first foray here, 7 months ago. I understand your desperation. Truly, I do. The word "rash" is just too small for the torture of this kind of itch. (You can read my first post here if you'd like. There is lots of good feedback in there. http://www.celiac.co...any-questions/)

 

Did your doctor do a full Celiac panel before you went gluten-free? (I hope so!) Make sure you have cleaned your kitchen thoroughly. Did you read the newbie thread? I had to do a second clean sweep through my kitchen about 3 months after my initial gluten-free clean-out. The learning curve is steep in the beginning and there will likely be things that you have missed.

 

Also, you did not say whether your rash is on both sides of your body. (Or maybe you did and I have reading comprehension problems) Does it present symmetrically? That is one of the hallmarks of DH. Have you looked at the DH photo bank? It might be helpful. My pictures are there, around page 7.

 

Ok, to answer your question: like Prickly says, it really varies form person to person. I can tell you about my experience: The first month was the hardest, because I really couldn't say whether things were getting better or not. And I was exhausted from lack of sleep. And I was having week-long anxiety attacks. And I was trying to figure out how to feed myself. And I was afraid of food. Yep. It's REALLY, REALLY hard to stay hopeful in the beginning. You may find yourself questioning and doubting everything. Hang in there.

 

I started to see some tiny, but noticeable improvement in the second month. The flare-ups would not stick around as long and the itch was marginally more bearable. There were still many bad days but I started to have a few good days here and there.

 

By the third month, I was having good days more regularly. The rash was still flaring and receding, but I had gotten better at tolerating it and was seeing even more small improvements. Then in the fourth month, I kind of plateaued, which was frustrating. I tweaked a few things (better sleep hygiene, tending to my poor frazzled adrenals, another kitchen purge) and in the 5 and 6 months things moved along nicely.

 

Here I am at 7 months. Things are much improved. I still flare up from time to time, but they last only about a day, aren't nearly as itchy, are much less raised, and do not develop the big water blisters anymore. And I have had a week at a time, here and there, where my skin is smooth. Yay! There is lots of freckling, which I suspect will take a long time to go away.

 

IT DOES GET BETTER! I promise. It's hard, one of the hardest things I have ever been through (if not the hardest). But here I am, 7 months after going gluten-free and 5.5 months low iodine and I can tell you that I am much better, even though I am not completely healed. My shirts don't stick to me anymore. I don't spend most of my days crying and scratching. I no longer need to spend many hours in the bath. Some days, I don't even think about the rash. I can wear clothing and be comfortable. I no longer feel like I am going to die from itch (and I no longer feel like death may be the only option for relief - it is often known as suicide itch!) But it took a lot of time and hard work to get here. Your timeline will vary - it sounds like you have not had the rash for too long, and that might be a good thing. It's possible you will heal faster, but it's impossible to say for sure.

 

A veteran here told me that every day is a healing day and to keep reminding myself of the two things needed to heal: Time and patience. So, I will pass that along to you: Time and patience and more time and patience. You will get there.


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#4 BeckyB.

 
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Posted 09 January 2014 - 11:33 AM

Thank you for the quick responses... And especially the detailed timeline. Ironically I find hope in the fact that you didn't notice much change until your second month. I am so desperate for relief that not seeing any signs of improvement does have me questioning everything.

I have read the newbie thread and any pertinent posts 30 pages back into the DH forum. I will hop over and check out the linked post as well for sure in case it was not one I have read previously! I have also looked at every pic on the pic bank as well as many others online. As I said mine doesn't look like the severe cases online, but it very much looks like many many posted on here.

As to the symmetry- YES. When the rash first presented it was on my elbows. As a photographer I assumed I had gotten into some poison as I lay on the ground for pictures. It was bumpy and itchy and responded to nothing. Next thing I knew I had a similar rash on both hips. Hand print sized on both sides, like where my hands would lay flat over pockets. These areas also wildly itchy and the lesions that came up and seemed to hang out for a long time were just like little sores. My dr told me they were not from scratching, they were a manifestation of the rash even tho he couldn't tell me exactly what caused it. I had recently had a few spider bites (one on each leg oddly enough) so we thought it may be related to that. Also in regards to typical presentation, I was very interested to read about the purplish marks left behind by lesions. I look like a leopard on both legs, esp the hip/thigh area from these purplish "scars".

Now the rash is on both elbows, the inside of both upper arms (this is the finer red rash with just a few of the sores/lesions), inside of both calves, inside of both thighs just above the knees, and on my butt. Oh an I have a patch under both of my arms, like where my bra goes under my armpit. Incidentally, I have had the issue of these bumps on my rear for years... Not severe but when I would get one it would drive me nuts then eventually go away. May not even be related but in hindsight I am trying to put pieces together.

When it started I was 8 mos into a Daniel Fast for spiritual reasons. This fast includes fruits, vegetables, nuts, whole grains. Basically if it grows from the ground you can have it. I had no bread but did whole wheat pastas at times, some tortillas, etc. Once I broke the fast (6wks after rash started), it did seem to get worse and I definitely know it's worse now than ever. Also this was a time of EXTREME stress. I was going through a ton emotionally. I am not someone who feels particularly anxious or worried about things, but I had enough going on I could see where stress could play a part.

After over 9 mos on the Daniel Fast, I feel like I could pull off a gluten free lifestyle. I also breastfed a baby with dairy intolerance so had to sleuth out the hidden dairy for a year in everything. The restriction and sleuthing don't scare me... But the thought of this NOT being the answer and I have to continue with this nightmare itch literally makes me cry.

I just wish I could see a bit of improvement!

As for the celiac panel- no. I discovered this over the holidays and in desperation went gluten-free almost immediately. I contemplated waiting but knowing it could take months to clear felt like every day was a precious bit of head start. I was gluten-free one week when i saw her. She has never dealt with anyone with DH before but is researching and referring. Spent about an hour with me discussing this, so I feel like she will do whatever we need to do. Do you think I should consider glutening a weekend to be tested? Maybe an up or down yes or no from that would help me to persevere in this?

I think that answered your questions then some. Thank you for quick replies and am very very thankful for these forums!
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#5 w8in4dave

 
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Posted 09 January 2014 - 02:05 PM

I would want the panel for Celiac for sure! I think I read a slice of bread a day will do it. Myself I think it is very important after I went Gluten Free my Liver enzymes went up. There are other factors if you have Celiac. I am glad I had my panel done and it was positive! It put a name to my problem and the Dr. Is like my best friend now. I didn't get DH tho, altho I did have a rash that is going away but I am positive it is not DH. As soon as you get the blood test done, you can go gluten-free. And like I said it doesn't take much. Good luck and we will all support any decision you make. 


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#6 GFX3

 
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Posted 09 January 2014 - 04:33 PM

Just wanted to add a few helpful products that in time you will appreciate with having DH.  My daughter and I both have DH and understand your frustration.  It took my daughter a baby at the time 4 months to clear her bottom, extremely itchy and uncomfortable.  It takes just a crumb of gluten to flare her up and it is back for another 4 months so with that said you have to be diligent in your diet.  I have DH on my head and with time it did get better but entirely gone a little over a year.

 

We use all skin care products scent free.  Dessert Essence is a gluten-free brand for lotions, sun-blocks, shampoos and there are no hidden glutens.  EOS is a chapstick brand that is gluten-free.  Dr. Bronners Castile soap is another great one for DH.  Method products are all gluten-free, laundry detergent, hand soap, dish detergent.  These are a little pricey but worth every penny.  They are organic and plant based or made with essential oils.  If the products you are putting on your skin are not gluten-free you are going to flare up.  You have open spots that are absorbing everything that is making you sick.


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#7 BeckyB.

 
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Posted 09 January 2014 - 05:32 PM

Thank you for the skin care tips. I am very fortunate that one of my best friends owns a handmade, natural soap company called Pure Hearts & Clean Hands. I have been using their soaps, laundry detergent, chap sticks, and lotions for a long time (all gluten free). I just added their shampoo bar which is also gluten free in place of my wheat containing salon brand. When the rash started I did take my doctor's advice and tried many lotions... Some I threw away thinking they were making things worse (in retrospect they probably were). But I did keep one around that I used daily that did have some gluten in it so got rid of it.

I was however taking semi regular sea salt and essential oil baths ... Given the iodine in sea salt I am suspect that this wasn't helping my cause at all! Obviously have cut that out also.

Just mentioning Pure Hearts because I can attest to the quality of their products and have visited the shop to verify what is and is not gluten free. All reasonably priced and available online :)
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#8 Blaze422

 
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Posted 09 January 2014 - 08:31 PM

Becky, hang in there...I totally sympathize and empathize.
Dave...can you elaborate on what you mean by your liver enzymes went up after you went gluten-free..
Itchy...can you elaborate on what a kitchen purge is? I share a house with a gluten eating dog and wife.
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#9 sillyken

 
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Posted 11 January 2014 - 10:52 AM

I recently broke out with DH from something i accidentally at over the holidays. Whenever I have a breakout I ask the Dr. for the prescription does of Hydrocordisone. I don't remember how long I had to take it before the DH was gone but it has been the most effective item for me to take away the itch. 


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#10 crazyitch

 
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Posted 27 January 2014 - 09:09 PM

Hi I am a newbie looking for hope.  I developed a rash almost six months ago and have been battling the most intense itch.  I have been to the doctor no less than 7 times in the last 4 months and have been given a different diagnosis each time.  Excema, staph infection, SCABIES (an unbelievable diagnosis that had me running around like an idiot!), contact dermatitis, and on and on it goes.  I have been prescribed antibiotics, steroid creams a mild one and later a strong one, 2 different anti histamines, was told to do several treatments of kwellada (for the scabies diagnosis), needless to say none of these has helped me.  I was given prednisone at the last doctors appointment because nothing else was touching the itch and that seems to help calm my skin a bit.  I have an appointment booked at the dermatologist toward the end of Feb and in the meantime I am suffering badly.....the prednisone seemed to help with the itch and calming down the flaring and spreading of the rash but as soon as I was finished the drug the rash flared again within a couple of days.  I have googled everything I can on rashes and that is how I ended up at this forum.  I had never heard of dh before but after researching pictures of rashes that looked comparable to mine I am starting to think I may have this disease.  I have never had an issue with gluten at least if I did I was unaware of it.  I have had small bouts with rashes over the years but they always seemed to just clear up on their own or with a cream from the doctors.  This one is different though, it is not responding to anything except the pred.  I have considered the gluten free diet but I have read that I should stay on gluten until my appointment so that I don't get any false results from tests he may request.  I have a couple of questions,

If a skin biopsy is taken does the dermatologist do it in office or is it sent away?

Are there any particular tests I should request in case he doesn't believe it is dh?

Is there anything, and I mean ANYTHING I can do between now and Feb 19 (derm appt) that can help me tolerate this itch.  It seems to be spreading everywhere, my legs, arms, tummy, chest, neck, back hips.  It is not on my scalp so far nor is it on my fingers or my feet.  It may not even be dh but it looks so similar to many pics on this site and I burns and prickles and itches all at the same time.  I scratch till I bleed then I scratch some more.  So Horrible!!!

 

Crazyitch


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#11 crazyitch

 
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Posted 27 January 2014 - 09:22 PM

Hi Becky, you are completely describing me!  I developed my rash last September and have been to the doctors 7 times and have run the gamut of creams and antihistamines etc, I even did a scabies treatment, all to no avail.  I am going to see the dermatologist next month and I am literally counting down the days.  My sores like yours do not seem to be blisters.  They are raised red bumps that are intensely itchy, they also sting and burn.  My shins are the worst, they look awful!  I want to upload a couple of pictures to get some feedback but I can't figure out how to do that.  Anyway if it is any consolation you are not alone in dealing with this disease, I am right there with you!  I will be continuing to post as this progress and will be following the others posting here. 

Take care and stay strong!

 

crazyitch


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#12 cyclinglady

 
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Posted 27 January 2014 - 10:48 PM

Hi I am a newbie looking for hope.  I developed a rash almost six months ago and have been battling the most intense itch.  I have been to the doctor no less than 7 times in the last 4 months and have been given a different diagnosis each time.  Excema, staph infection, SCABIES (an unbelievable diagnosis that had me running around like an idiot!), contact dermatitis, and on and on it goes.  I have been prescribed antibiotics, steroid creams a mild one and later a strong one, 2 different anti histamines, was told to do several treatments of kwellada (for the scabies diagnosis), needless to say none of these has helped me.  I was given prednisone at the last doctors appointment because nothing else was touching the itch and that seems to help calm my skin a bit.  I have an appointment booked at the dermatologist toward the end of Feb and in the meantime I am suffering badly.....the prednisone seemed to help with the itch and calming down the flaring and spreading of the rash but as soon as I was finished the drug the rash flared again within a couple of days.  I have googled everything I can on rashes and that is how I ended up at this forum.  I had never heard of dh before but after researching pictures of rashes that looked comparable to mine I am starting to think I may have this disease.  I have never had an issue with gluten at least if I did I was unaware of it.  I have had small bouts with rashes over the years but they always seemed to just clear up on their own or with a cream from the doctors.  This one is different though, it is not responding to anything except the pred.  I have considered the gluten free diet but I have read that I should stay on gluten until my appointment so that I don't get any false results from tests he may request.  I have a couple of questions,
If a skin biopsy is taken does the dermatologist do it in office or is it sent away?
Are there any particular tests I should request in case he doesn't believe it is dh?
Is there anything, and I mean ANYTHING I can do between now and Feb 19 (derm appt) that can help me tolerate this itch.  It seems to be spreading everywhere, my legs, arms, tummy, chest, neck, back hips.  It is not on my scalp so far nor is it on my fingers or my feet.  It may not even be dh but it looks so similar to many pics on this site and I burns and prickles and itches all at the same time.  I scratch till I bleed then I scratch some more.  So Horrible!!!
 
Crazyitch


Welcome to the forum, Crazyitch!

I do not have DH, so I can't offer any insight. I do have celiac disease and have been gluten-free for almost a year. Please take some time to read all about DH from some of our old pros. If you do not get a quick response to your posting, try creating a new thread.

I hope you find your answers!
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#13 dilettantesteph

 
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Posted 28 January 2014 - 05:12 AM

I didn't read this carefully enough but here goes anyway.  Why would you need to eat gluten to get a positive diagnosis for celiac disease if you have active DH?  A  positive DH biopsy is a positive celiac disease diagnosis.  Why not get that?

 

OK, I reread and see the 6-9 month wait to see a dermatologist.  I see that you want to know now.  In that case, I would avoid all possibilities of gluten cross contamination for a couple of weeks.  Go on a diet of produce and unprocessed meats only and see what happens.  Don't prepare your food where gluten containing food has been prepared.  Set up a gluten free zone for that.  It seems like it wouldn't be that different from the Daniel fast except for the elimination of grains.

 

I hope that you feel better soon.


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#14 GF Lover

 
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Posted 28 January 2014 - 06:40 AM

Also, I am pretty sure you must not be taking steroids before diagnosis, by blood or skin biopsy.  The biopsy must be taken next to a lesion.  A positive biopsy is equal to a positive diagnosis for Celiac Disease as DH is the skin form of Celiac.  Some with DH will test negative by blood but positive for DH.  

 

Look for Posts by "Squirmingitch",  She has posted all the pertinent information about DH on the DH threads.  

 

Good Luck.

 

Colleen


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#15 squirmingitch

 
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Posted 28 January 2014 - 01:25 PM

crazyitch, I'm running right now to go make dinner but hang in there hon & I'll be back after dinner to give you info. You have to be eating gluten for the dh biopsy so don't stop eating it yet. There is more info. but just let me get back to you this evening. Until then, ((((HUGS))))!


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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