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I Have So Many Questions


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#1 ItchyAbby

 
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Posted 10 July 2013 - 01:50 PM

Hi all,

I have been dealing with a horrendous rash that may be DH, but getting a diagnosis has been frustratingly elusive. I know you cannot diagnose me, but I figured it could not hurt to tell my story and see what thoughts you all have. It started 3.5 years ago as a few itchy spots under my right breast. They came and went for about a year and then a few similarly itchy spots showed up on my left sideboob (for lack of a better term). This went on for the next 3 years, coming and going, annoying and itchy but not a huge concern. My doctors told me it was probably fungal and that I should wash my running bras in hot water. I tried antifungal creams and they did not seem to work. Still it would go away, sometimes for months at a time, and come back, always in the exact same spot, then with a few more added spots nearby.

 

Fast forward to this last winter, when it started spreading rapidly and to new areas: a few spots showed up on each flank at waist level, and the original sideboob/underboob spots spread into each armpit and some spots showed up on my lower back/sacrum. These were clusters of red dots, looking kind of like pimples. The itch was out of control - it seemed disproportionate to the size of the spots.

 

And it just kept spreading over the next 7 months until now. I am in the middle of a flare up, and am covered from armpits to waist, in hive-like, flat topped clusters with some clear fluid filled blisters thrown in here and there. It always starts as a little pimple-like red spot that within 24 hours will reveal itself as the hive-like cluster, spreading rapidly and frighteningly. The craziest thing is how symmetrical it is! If it shows up on one side, I can be assured that the other side will flare up within a couple of days. My torso looks like an angry red Rorschach test. It's on my tummy, down both sides from my armpits to waistline and across my lower back.

 

So, I have had 5 punch biopsies, several blood tests (including TTG), a patch test and all have been inconclusive. The biopsies have come back with the same thing: Spongiotic dermatitis (which the docs interpret as allergic contact dermatitis). The first three biopsies were all done within the rash, the last two were done with at least one next to the rash site and looked at with direct immunoflorescence.

 

By the time this last biopsy was done, I had been gluten free for 12 days. I had read about DH and was desperate for an answer and went completely gluten free. This was not that hard since my Significant Other is gluten intolerant, so I don't bring gluten into the house since it's just easier to eat what he can eat. There were a few things I needed to weed out - mainly older condiments, like hoisin sauce. Before deciding to go gluten free, I would only eat gluten-containing items if I went out with a friend, or drove by a bakery - this wold happen, at most once or twice a week. Then I would goo weeks or even months without eating gluten. The last day that I ate gluten was May 30 of this year. The last biopsy - the one done correctly for DH - was done on June 11 of this year, but I now realize it may have been all for naught, as I had been gluten free for 11 days at that point. June 8th and 9th were the worst flare-ups yet, when it it spread to my tummy for the first time. By the time June 11th rolled around, it was looking marginally better (drier, darker red, less itchy). And it continued to improve dramatically until June 28th. Such relief! My skin sloughed and was smooth, with lots of browning spots whereever the rash had been.

 

Then on June 28th a few dots showed up on my tummy and it started all over again. Desperate, I went back to the internet for answers (not always a great idea, but this forum has been more informative than any of my doctors and derms). I read about Iodine and was dismayed. I had been taking cod liver oil daily from April onward. What's more, from June 20th - 25th I had been at the coast for my 37th birthday and feasted on fish and oysters several nights. Maybe that was the cause of the reflare? The last time I ate something that was iodine rich was last Saturday, July 10th -  few bites of salmon, before I realized what I was eating. Gah!

 

Sheesh. I am going on and on. But I have so much to ask you all. My doctors are stumped. They have ruled out DH, because they feel that it should be gone if I am truly gluten free. I mention the iodine connection and get blank stares. They are talking about prednisone and immunosuppressants, and I do not want those. I want answers!

 

Everything I've read about DH says that it can take quite a while to clear. I don't know what that means. Does that mean that one can keep having flare ups, even if they are gluten and iodine free?

 

I am ordering Panel B from EnteroLabs. My doctors are hesitant to do a gene test, since they feel we have ruled out DH. I still feel that DH is the most likey candidate. I am asking for a referral to an Immunologist. Are there any other avenues that you all would suggest I explore?

 

What I have done thus far:

- Changed out all my underwear and undershirts for unbleached, undyed, organic cotton replacements. This is the only thing that I wear next to my skin.

- Got rid of my running bras (Not that I have been running since I have been so uncomfortable)

- Changed out my laundry detergent for Charlie's Laundry soap and rinse everything twice

- Got rid of shampoo and conditioner. I now wash with baking soda and rinse with apple cider vinegar. I do this over the sink, not in the shower.

- I rarely use soap now, mostly just water. If I do use soap it's Dr Bronner's Baby Mild

- Got rid of all lotions. If I need to moisturize, I use either olive oil, coconut oil or sunflower oil.

- I wash my face with water most days. I will use a little baking soda in water if I need to exfoliate, and dab a littel sunflower oil on to moisturize.

- I eat only at home, or at my mom's house. I feel fairly confident that my home is gluten free. My mom only cooks gluten free stuff when I am over there, but my parents do still eat bread. I never use their toaster.

- I am eating only fresh organic fruits and vegetables many of which I grow myself, pasture raised/grass fed meats, home grown duck and chicken eggs (whites only) nuts, some rice and potatoes.

- I take a B-complex, Calcium/Magnesium/Vit D, and a magnesium/L-theanine mix. All say they are gluten free

- I am also taking a Probiotic called HLC Synbiotic Intensive. They say that they are gluten and casein free

- Xanax, occasionally. .25mg. I started having panic attacks in April. :(

 

What am I missing?

 

I am sure there are things I am leaving out. I am so baffled and scared. 7 months ago I was one of the healthiest people I know. I still feel healthy underneath the rash, though I am often tired or sad. Here are some pictures: the first shows the symmetry on my tummy, and how angry red it is at it's worst; the second is a close-up of some of the blisters; the third shows my side and how it darkens and scabs over as it starts to heal, plus the brownish areas where the rash has cleared.

ecaa3bcd-d03b-47f9-8ec8-7c9bfdfea43c_zpsP1130412_zps49ebb77c.jpge6c2411f-8de4-4bf4-884a-d2f81313e8b4_zps


Edited by ItchyAbby, 10 July 2013 - 06:09 PM.

  • 0

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.


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#2 notme!

 
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Posted 10 July 2013 - 03:50 PM

have they tested you for celiac?  you poor thing, that looks so itchy  :(  have you gone to an allergist?  my neice has a peanut/tree nut contact allergy, but when she gets stressed she starts itching.  (i want to try her gluten-free, but she will only eat junk food)  her rash looks like yours - she gets it on the back of her legs and under her arms - and she scratches it raw.  

 

there are others on here who have had more severe experiences than i with dh - when they were trying to diagnose it, i would make an appointment with the dermatologist and in the time in between, it would go away so they never got a 'good' biopsy.  frustrating!!  


  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#3 mendylou

 
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Posted 10 July 2013 - 05:09 PM

I can identify with you.  I have had rashes my entire life & did not know the cause.  Due to research I went gluten free almost 3 years ago.I should also include that I am 60 and I have had many years to accumulate this under my skin without anyone being wise enough to realize what the problem was.  I still have DH rash but I have seen improvement thru time.  However I realized thru time I have become even more sensitive. Here's an example.  My neice got married mid May.  I was assured the food I got at the reception was gluten-free.  That may be true but it was not prepared away from gluten containing food.  I had one of the worst DH outbreaks I have had in the past 3 years.  It is 2 months later & I am just getting over that massive outbreak. I don't know if this helps any but I did not realize when I went gluten free that it would be such a journey.


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#4 ItchyAbby

 
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Posted 10 July 2013 - 05:55 PM

have they tested you for celiac?  you poor thing, that looks so itchy   :(  have you gone to an allergist?  my neice has a peanut/tree nut contact allergy, but when she gets stressed she starts itching.  (i want to try her gluten-free, but she will only eat junk food)  her rash looks like yours - she gets it on the back of her legs and under her arms - and she scratches it raw.  

 

there are others on here who have had more severe experiences than i with dh - when they were trying to diagnose it, i would make an appointment with the dermatologist and in the time in between, it would go away so they never got a 'good' biopsy.  frustrating!!  

Thank you for your reply! It is fiercely itchy, like nothing I have ever felt before. I want to scratch all the way to my bones.

 

No, I have not been tested for Celiac. My doctors are not very cooperative. They feel that we have ruled out any gluten sensitivity with the 5 inconclusive biopsies and the negative tTg blood test. I keep bringing it up and today, my PCP told me "Let us do the worrying and research for you" after telling me that they wanted to put me on a more potent cortisone cream to see if it helped. They still believe it is allergic contact dermatitis - the biopsies all came back with: Spongiotic dermatitis and the words "vesicular" and "eosinophils" thrown in there as well.

 

I did have a patch test that only came back with nickel as an irritant. I asked my PCP today if he would give me a referral for an Immunologist, and I got the same stonewall as when I asked about seeing a Celiac specialist. I am so confused about why he is so resistant to trying more avenues. He is new to me - my old PCP just left at the end of June, which sucks.

 

It definitely itches more when I get stressed...which happens to be a lot more often when the rash is flaring up, of course.

 

So, your niece's nut allergy is a contact allergy? Does this mean that she does not eat them but if she touches something with peanuts/treenuts, the rash flares up? And it's always in the same location?


  • 0

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.


#5 ItchyAbby

 
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Posted 10 July 2013 - 06:01 PM

I can identify with you.  I have had rashes my entire life & did not know the cause.  Due to research I went gluten free almost 3 years ago.I should also include that I am 60 and I have had many years to accumulate this under my skin without anyone being wise enough to realize what the problem was.  I still have DH rash but I have seen improvement thru time.  However I realized thru time I have become even more sensitive. Here's an example.  My neice got married mid May.  I was assured the food I got at the reception was gluten-free.  That may be true but it was not prepared away from gluten containing food.  I had one of the worst DH outbreaks I have had in the past 3 years.  It is 2 months later & I am just getting over that massive outbreak. I don't know if this helps any but I did not realize when I went gluten free that it would be such a journey.

Thank you for replying! I am so sorry to hear about you getting contaminated! How horrible. I do wonder if I became more sensitive after going mostly gluten free for my S.O. - like, taking hte gluten away and then reintroducing it in little doses here and there was the reason this all came to the surface in such an extreme way.

 

So, if I am understanding you correctly, it sounds like you are strictly gluten free but still have flare ups from time to time, is that correct? By "improvement" do you mean that that flares are smaller or less itchy?


  • 0

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.


#6 squirmingitch

 
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Posted 10 July 2013 - 07:15 PM

Abby,

First, welcome to the board!

Second, Great big hugs! ((((((( ABBY)))))))))))

Third, I'm so sorry you have been put through all this by your doctors as well as having the rash itself which is hell.

Fourth, I am not a betting woman. I hate to risk losing money so I very, very rarely put it on the line. IOW, it takes a sure thing before I will lay my money out.

Now I will say that I would lay down money that you have dh. Without a second thought.

 

Okay, I've had a long day & am tired so I'm sure I will say things not in the best order like I would if my mind were fresh. 

 

Thank you for giving us so much info. on your symptoms & what's been done & not done & for the excellent photos.

 

One question..... When they took the last biopsy which was taken correctly had you been using either topical or oral steroids within the last 2 months prior to that biopsy? If the answer is yes then the biopsy is a wash. The steroids will turn up a negative. Don't bother to tell your docs that b/c it's clear that at this point they aren't listening so you will just be banging your head against a brick wall.

 

When that biopsy was done you had been gluten-free for 11 or 12 days. And that alone, is enough to turn up a negative biopsy. The fact also that you have been what we tern gluten light could be a factor also but there are no med. publications that I have found that research the effect of being gluten light on biopsies. 

 

You say they did a TTG blood on you. Do you have copies of the bloods they did on you? If not, get them. If they did not do ALL of the bloods listed below then they did not do the current FULL celiac panel.

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
Even if those tests were done & they came up negative, only 40% of those of us with dh test positive on the celiac blood work. That means 60% of us test false negative.
 
The brown spots (sometimes grey, or purple & sometimes white) will fade over time & your skin will go back to it's normal color. it takes a while ~~~ mine have taken 6 months & I had the worst outbreak of all 9 months after being strict gluten-free. I suspect those spots will take longer than the 6 months I have previously experienced. 
 
YES! You can continue to have the rash after going strict gluten-free. You can have it for 2+ years & I really hate to say this but there are texts out there that say for 10 years. You see, the antibodies get deposited under our skin & we will not be clear of this until those antibodies have gone. There are lucky ones who clear pretty quickly ~~~ in months ~~~ & then there are those of us who battle it for years. 
 
Going low iodine can make a difference & does for most of us. You already mentioned you know about that. Good! You've been doing your homework! :) But just in case you miss things; here is a link to the low iodine diet (don't eat the gluten things of course):
 
 
Here are some other links you can read. The first one is lengthy & ponderous but will explain much.
 
Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
I include this even though your SO is gluten-free b/c it never hurts to review the rules & check to see if you've missed something.
 
Newbie 101 for celiacs
 
 
Can you get a new PCP? Does your insurance require a referral before you can see specialists?
 
How important is it to you to have an official dx? If you really want one then you will have to go back to eating a normal gluten diet & with dh that is...... well, I wouldn't do it for 10 million $! You will be putting more antibodies in your skin as well as doing damage to your body (gut, neuro, etc..). 
 
And stress is known to make everything worse so it follows that it will make the rash worse. I know it affects my rash tremendously!
 
AND prednisone or any other oral steroids will/can help a  great deal with the rash BUT when you stop taking them I warn you the rash will come back with a vengeance! So many of us have been there, done that!
 
NSAID's will aggravate the rash. If you have to take anything at all then take Tylenol. Personally, even that makes my rash worse if I take more than 1 or 2 in an entire 2 week period.
 
I think these things will get you started for tonight. I will be back tomorrow unless I get derailed by things & if I do I will be back the next day & give you some other thoughts & info.

  • 1

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.

 


#7 notme!

 
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Posted 10 July 2013 - 08:44 PM

 

So, your niece's nut allergy is a contact allergy? Does this mean that she does not eat them but if she touches something with peanuts/treenuts, the rash flares up? And it's always in the same location?

yes, they did the skin test on her (also tested wheat on her skin and it came up neg.  so her mom thinks that is the same as a celiac test.........  um.  no)  so we have to be careful if we feed the grandkid pb&j for lunch, he have to wash up afterwards and don't touch anything, he's 4, so he is basically a noise with dirt on him lolz ;)  we don't dare try to feed her peanuts/tree nuts but don't know if she would have a deadly reaction to them.  doctor says maybe, maybe not - who wants to find out!  

 

but, my point with her is the stress reactions she has - gets a rash that looks like yours   :(  she is 11, so it's predictable:  she has a speaking part in the church program, she has a big test at school, The Unknown <that's a big one..  maybe could be alleviated with a gluten free diet.  my knee-jerk freak out responses have settled down so much since giving up the gluten - i'm pretty sure it was causing nerve damage - celiac is systemic - it affects your whole body.  i have had a myriad of maladies clear up in the past 3 years.  things i didn't even notice until they went away.  it's amazing what you suffer through/get used to as 'normal'  :o

 

edited to add:  most of the time it is in the same places on her body, back of her legs, inside of her arms, and the back of her neck/scalp.  but she also breaks out on her sides of her torso (and other places, poor thing, i know it must itch like crazyy)


  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 pricklypear1971

 
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Posted 10 July 2013 - 09:12 PM

Oh wow. Yeah. What Squirmy said. Your rash could be my rash. Squirmy has seen the pics.

My advice is to continue to gluten-free - you'll get better as you go. Definitely add the low iodine to it for a few weeks - see what happens. Ensure your supplements don't have iodine added (seaweed, carrageenan, etc)..

It's late and I've got a whiny kid. Ask more questions, I'll answer.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

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

#9 ItchyAbby

 
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Posted 11 July 2013 - 10:22 AM

 

Abby,

First, welcome to the board!

Second, Great big hugs! ((((((( ABBY)))))))))))

Third, I'm so sorry you have been put through all this by your doctors as well as having the rash itself which is hell.

Fourth, I am not a betting woman. I hate to risk losing money so I very, very rarely put it on the line. IOW, it takes a sure thing before I will lay my money out.

Now I will say that I would lay down money that you have dh. Without a second thought.

 

Okay, I've had a long day & am tired so I'm sure I will say things not in the best order like I would if my mind were fresh. 

 

Thank you for giving us so much info. on your symptoms & what's been done & not done & for the excellent photos.

 

One question..... When they took the last biopsy which was taken correctly had you been using either topical or oral steroids within the last 2 months prior to that biopsy? If the answer is yes then the biopsy is a wash. The steroids will turn up a negative. Don't bother to tell your docs that b/c it's clear that at this point they aren't listening so you will just be banging your head against a brick wall.

 

When that biopsy was done you had been gluten-free for 11 or 12 days. And that alone, is enough to turn up a negative biopsy. The fact also that you have been what we tern gluten light could be a factor also but there are no med. publications that I have found that research the effect of being gluten light on biopsies. 

 

You say they did a TTG blood on you. Do you have copies of the bloods they did on you? If not, get them. If they did not do ALL of the bloods listed below then they did not do the current FULL celiac panel.

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
Even if those tests were done & they came up negative, only 40% of those of us with dh test positive on the celiac blood work. That means 60% of us test false negative.
 
The brown spots (sometimes grey, or purple & sometimes white) will fade over time & your skin will go back to it's normal color. it takes a while ~~~ mine have taken 6 months & I had the worst outbreak of all 9 months after being strict gluten-free. I suspect those spots will take longer than the 6 months I have previously experienced. 
 
YES! You can continue to have the rash after going strict gluten-free. You can have it for 2+ years & I really hate to say this but there are texts out there that say for 10 years. You see, the antibodies get deposited under our skin & we will not be clear of this until those antibodies have gone. There are lucky ones who clear pretty quickly ~~~ in months ~~~ & then there are those of us who battle it for years. 
 
Going low iodine can make a difference & does for most of us. You already mentioned you know about that. Good! You've been doing your homework! :) But just in case you miss things; here is a link to the low iodine diet (don't eat the gluten things of course):
 
 
Here are some other links you can read. The first one is lengthy & ponderous but will explain much.
 
Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
I include this even though your SO is gluten-free b/c it never hurts to review the rules & check to see if you've missed something.
 
Newbie 101 for celiacs
 
 
Can you get a new PCP? Does your insurance require a referral before you can see specialists?
 
How important is it to you to have an official dx? If you really want one then you will have to go back to eating a normal gluten diet & with dh that is...... well, I wouldn't do it for 10 million $! You will be putting more antibodies in your skin as well as doing damage to your body (gut, neuro, etc..). 
 
And stress is known to make everything worse so it follows that it will make the rash worse. I know it affects my rash tremendously!
 
AND prednisone or any other oral steroids will/can help a  great deal with the rash BUT when you stop taking them I warn you the rash will come back with a vengeance! So many of us have been there, done that!
 
NSAID's will aggravate the rash. If you have to take anything at all then take Tylenol. Personally, even that makes my rash worse if I take more than 1 or 2 in an entire 2 week period.
 
I think these things will get you started for tonight. I will be back tomorrow unless I get derailed by things & if I do I will be back the next day & give you some other thoughts & info.

 

Thank you so much for the warm welcome, Squrimy! And for all this useful info! I am kind of ecstatic to have found this board and other people that know what I am going through. I will probably talk your ears off for a bit - I have so much to say and ask! I have pored over the links you posted and they have been so helpful.

 

Ok, to answer your questions:

- The last biopsy was taken on June 11th. The last day that I had used Triamcynolone was April 5th. So, just a few days longer than 2 months.

- I will get the copies of the blood tests results asap. I am also going to get copies of the biopsy reports. I really want to see what all they did.

- I am going to shop around for a new PCP. I really do not like this new guy - he was condescending with me on the phone yesterday, and I can tell that he is very skeptical whenever anyone says the word "gluten". ARGH! Why do they make us feel like crazy hypochondriacs? (Especially when they are so not up to speed with the various afflictions related to gluten sensitivity?)

- It is not so important to me to get a dx to make me go back on gluten. Here's the thing: my gut - seems appropriate - tells me that this is the most likely problem and has ever since I first read about it. I have been writing down EVERYTHING I eat or ingest since February of this year, and there is a pretty strong correlation: if I eat something with gluten, 2-5 days later the bumps appear and then over the following days explode into the madness that is this rash. I started to doubt this gut feeling after stopping gluten on May 30th and then having a reflare on June 28th-ish. And the doctors' skepticism made me doubt it too. That's why I came here: to see if it's normal to have reflares, even while being very strictly gluten free. My doctors say that it is not possible - they say that if I am totally gluten free then I should be totally rash free. Obviously they know nothing. And then I found the iodine connection, and remembered the seafood fest I had at the coast from June 20th-25th. Oy. So, yeah, I don't think anyone could pay me enough to eat gluten right now, even if it was one of my formerly favorite croissants.

 

Thank you Thank you, a million times to this whole board and for everyone being so generous in sharing their experiences. I can see a tiny light at the end of the tunnel. I know that I may have a ways to go, but I feel like I am getting the info I need.


  • 0

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.


#10 ItchyAbby

 
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Posted 11 July 2013 - 11:00 AM

Oh wow. Yeah. What Squirmy said. Your rash could be my rash. Squirmy has seen the pics.

My advice is to continue to gluten-free - you'll get better as you go. Definitely add the low iodine to it for a few weeks - see what happens. Ensure your supplements don't have iodine added (seaweed, carrageenan, etc)..

It's late and I've got a whiny kid. Ask more questions, I'll answer.

Really? Does your rash show up on your torso, too? The derms keep saying that it is typically on the elbows and knees (and typically on men). I keep telling them "I've never been typical". Hehe.

 

Thank you for your advice. I plan to stay gluten free. I plan to not go out to eat for quite a while, so I can control my diet. I started low iodine just this past Sunday - cut out seafood, seaweed, seasalt, egg yolks, dairy milk and cheese, potato skins. I am still using a bit of grass fed, unsalted butter - maybe I should axe that too? Stopped using my toothpaste that has carageenan in it - just using baking soda now (and would love to hear if anyone has better toothcleaning options)


  • 0

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.


#11 squirmingitch

 
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Posted 11 July 2013 - 11:06 AM

You are most welcome Abby! And talk our ears off all you want. Ask away! Surmise away ~~~ whatever ~~ brainstorm ~~~ it's all allowed & even welcomed here. In truth, I would probably be dead by now if I had not found this board. They don't call this the suicidal itch fer nuttin'!

 

Even w/o the iodine, you can still have flares. This stuff "effs" with your mind as much as it does with your body. It's great that you are/have kept a food log. I can tell you that for myself, I have been so positively, absolutely, no doubt about it gluten-free, not cc'd for 19 months. No eating out AT ALL, a gluten-free household,  eating only things which are certified gluten-free or tested or made in gluten-free facilities ~~~ 90% of what I eat is whole foods anyway. So I KNOW beyond a shadow of a doubt that I'm as clean as a whistle. YET I can't tell you the # of times that I have doubted & questioned if I got glutened somewhere along the line b/c of these flares. Every time I do that I slap myself on the face & tell myself, "What? Are you crazy? You know darn well there is no way you have gotten a hint of gluten!" This stuff will make you crazy.

 

I ask about a new PCP b/c it would be good for you to get some tests as to iron & vitamins & make sure your thyroid is well.

 

And hon, you can go back to using shampoo & lotions & soaps etc....  I sympathize with where you were coming from eliminating all those items & certainly understand if you are still hesitant to go back to them. Whenever you feel ready to......     I will tell you what I use so you will know some brands that are safe. I use Suave Naturals shampoo & conditioners ~~~ cheap, gluten-free & does a good job. For lotions Vanicream is gluten-free, as is Vaseline (this 1 only!) Intensive Rescue Repairing Moisture. I use a body soap that is made by a gal I know so i don't use regular soap --- it's too drying to my skin but others can tell you the brands they use of all these things. Afterglow cosmetics work great & are gluten-free. I used to (before I knew I had celiac) itch & my face would get swollen/puffy so I quit wearing make up at all. Now I can wear it again & no itchy, puffy, swelling.


  • 0

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.

 


#12 pricklypear1971

 
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Posted 11 July 2013 - 11:54 AM

My primary site was under my arms, around my arm pits - at it's worst it almost covered my pits but generally it was like a reverse bullseye.

I got it on my neck, face, abdomen, a bit on my arms and legs, and it started down my butt crack - that was a truly surreal experience, let me tell ya.

As far as iodine goes milk and butter were never big triggers for me. Carrageenan and egg yolks and potatoes and asparagus were, though. Everyone is different, do what works for you.

Definitely get your biopsy reports. Dh is notoriously hard to dx - it is a subjective test - only as good as the sample and person reading it. I would be suspicious that the sample was bad given your type of dh - the creeping swelling crud. My derm (who never got to biopsy but was thoroughly supportive of the dh dx after the fact) had an ominous tone to his voice re: the biopsy because of the need for unaffected skin. Our type has very unclear edges, and the test is looking for an iga pattern which is easily destroyed by swelling.

At the end of the day your response to the gfd and iodine will tell you what you need to know. Find a doc who will work with you - kiss a few frogs, you'll get there.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

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

#13 squirmingitch

 
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Posted 11 July 2013 - 12:15 PM

I agree with Prickly & will add that my first thought upon seeing Abby's photos was that any biopsy was probably no good given that what Prickly said as well as the fact that Abby undoubtedly scratched (as we all end up doing!) & scratching will destroy the Iga pattern easily.


  • 0

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.

 


#14 squirmingitch

 
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Posted 11 July 2013 - 01:11 PM

Here is info. stating that the rash can persist for 2 or more years even gluten-free.

http://charlotteceli...petiformis.aspx


  • 0

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.

 


#15 squirmingitch

 
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Posted 11 July 2013 - 02:35 PM

Really? Does your rash show up on your torso, too? The derms keep saying that it is typically on the elbows and knees (and typically on men). I keep telling them "I've never been typical". Hehe.

 

Thank you for your advice. I plan to stay gluten free. I plan to not go out to eat for quite a while, so I can control my diet. I started low iodine just this past Sunday - cut out seafood, seaweed, seasalt, egg yolks, dairy milk and cheese, potato skins. I am still using a bit of grass fed, unsalted butter - maybe I should axe that too? Stopped using my toothpaste that has carageenan in it - just using baking soda now (and would love to hear if anyone has better toothcleaning options)

Here is a toothpaste that has no gluten or carageenan in it. I know this b/c my hubs hates the "minty taste" of toothpastes so he uses kids toothpaste. LOL! Guess what? I do too now. The dentist says it's every bit as effective as adult toothpaste so if that's what flutters your putter then go for it. And here is the ingredients list:

http://www.harmondis...8305632357.html

 

As to where dh presents & what your docs think & say --- PFFFFFFTTTTTT!!!!!!!!!!!!!!!!!!!!!!!

My dh has been everywhere on my body except mucous membranes. I've had it in my ears, on my scalp, torso, arms, elbows, legs, knees, ankles, feet, bottom of feet (only a few), armpits, hands, palms, fingers, inside my belly button (those are fun), ON my nipples (even more fun!), back, neck, butt crack (thank goodness only rarely), toes.


  • 0

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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