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I Have So Many Questions
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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.

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Edited by ItchyAbby
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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!!  

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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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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?

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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?

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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.
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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)

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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.

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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.

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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)

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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.

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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.

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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.

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

http://charlotteceliacconnection.org/dnn/HealthMedicalinformation/DermatitisHerpetiformis.aspx

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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.harmondiscount.com/068305632357.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.

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Goodness, I am so overwhelmed again. Two years? Does that mean that I will keep having three weeks out of every month of rash hell? I want to cry. I know that this is not a quick process, but I don't know how the handle the idea that this will continue to disrupt my life so significantly for another couple of years. This has messed with my life and my sanity to such a degree that I would not have thought possible. It's such an emotional roller coaster. I don't know what I would do without my amazing family and S.O. (who is my hero - he has been absolutely essential for getting me through this.)

 

Are the flares at least fewer and farther between as time goes on? I imagine it's different for everyone...

 

I will check about getting another full blood and metabolic panel, now that my diet is more limited. I am also working with a naturopath and she is great.

 

I really need to figure out how to manage the stress - that only makes it worse. The sleep deprivation doesn't help either. Meditation has helped a lot. I hope to be able to exercise when this flare calms down.

 

A few more questions:

- Are any of you using Dapsone? I am terrified of it, but wondering if I need to consider it

- I try very hard not to scratch because it really seems to make it worse and create open sores. If I feel the itchies starting, I jump in the shower and blast the area(s) with really hot water. If I have scratched at all in the minutes before the shower, this hurts like hell. But If I have not scratched, it takes out the itch for 2-3 blissful hours. It's pretty intense when the water first hits it - a strong mix of pleasure/pain, but it really works. I saw that most people do not like hot showers, but I am wondering if anybody else does this?

- Has anyone tried the tests from Entero Labs? My dear mom just ordered Panel B for me (includes a Gene test).

- If you know of any great Celiac specialists in Portland, Oregon please send their info my way!

- Shoot, I had another one or two but I have forgotten now...hopefully it will come back to me.

 

I am overwhelmed, both in the good way by all your helpful responses, and in a difficult way, looking at the hard road of uncertainty in front of me. I am determined to get better but sometimes it is so exhausting.

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Oh! I just remembered another question: Have any of you lost hair or had weird hair growth patterns? About 2 year ago I tried to grow out my hair. Most of it got longer (though it seemed to take forever) but the area around my crown did not seem to grow or grew very slowly, or possibly the hair fell out when it got to a certain length. Basically, I have this "crown" of short hairs that have not gotten longer than say, 3 inches. I ended up going back to a short haircut.

 

Anyway, it kind of makes sense, if I have been "poisoned" by wheat/gluten, even in the small amounts I ate, that my hair may not be as healthy.

 

I guess this could also be a thyroid concern, huh?

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Okay, take a deep breath, & then another & again. Now, calm down. You may not have the dh flare or persist for 2 years or even 1 year. Some do, some don't. We're all hoping you are going to clear quickly. Prickly did once she figured out it was dh & went gluten-free & then went low iodine for a bit. 

And there's no way to say if your flares will be mild or not nor how often it will happen.

Just think positive Abby. That's the best way to let the stress go. You have gone gluten-free & that's THE treatment. You are on the road to recovery. Don't think about farther than tomorrow.

 

Dapsone.

Dapsone is scary & I swore I would never try it. but then I had a viscous, horrid outbreak & I would have taken it if I could have gotten some. And it's quite possible that I would have an anaphylactic reaction to it since I am allergic to sulfa drugs. Many have tried it & not been able to tolerate it. Others have used it & had no problems with it. Prickly tried it I believe -- she can tell you about her experience.

 

Try this forum for a good doc in your area:

http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/

 

I did a quick search of that forum via Google & came up with these possibilities that you can read:

http://www.google.com/cse?cx=partner-pub-2870123369516656%3Axxrwlo-f707&ie=ISO-8859-1&q=portland&sa=Search+Forum+Via+Google#gsc.tab=0&gsc.q=portland&gsc.page=1

 

And you might Google celiac support groups in Portland ---- I believe there is a major group there --- you could contact them for a list of docs.

 

Hair

Celiac disease is associated with alopecia. Most ppl who have had hair falling out have recovered it after time being gluten-free. I had mine falling out when the lesions were so bad in my scalp. It grew back. I have always had extremely long hair --- to the bottom of my butt. It was weird b/c for several years it was getting shorter. It was barely reaching the top of my crack. Guess what? Since going gluten-free it has begun growing again. It is now back down to the bottom of my butt. AND it's shining again! YAY!

 

You may find a lot of things you didn't even notice or thought were mol normal improving over time. It's amazing how this stuff affects every single cell in our bodies it seems.

 

I was dxc'd with DJD & was getting epidurals for the pain. My pain has gone so drastically since being gluten-free! And I haven't had an epidural. How about them apples? I was eating gas X like candy & still belching like a sailor --- no more! I had continual indigestion --- no more. Lots of things Abby, lots of things.

 

Smile hon. You're strong & you will come out the other side. You will have moments of self doubt & you will have times of great satisfaction. We're here to hold your hand if you want to have a pity party. We all have had 1 or more ourselves.

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Okay, like squirmy said, breathe.

First, lack of nutrients could be causing the poor hair growth. That said, I reco a thorough thyroid work up including antibodies. You are autoimmune and thyroid is an obvious thing to watch.

Second, as squirmy said, you may not flare like this for two years. I have flared but they are a FRACTION of what they were - quite livable. As the antibodies fall the rash lessens. My last outbreak was no more than a minor irritation, and the intensity fell drastically in the first few months after going gluten-free and li.

Third, I'm allergic to sulfa and never tried dapsone.

Fourth, ice packs and pressure at night to help you sleep. Coat your body in ice packs.

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Abby, I do not want you to get discouraged. I did not put the info. out there about it taking 2 yrs. or more to be free of the rash in order to scare you. I put it out there to let you know that you can have flares even gluten-free. If I did not make you aware of that & you go along & then get a flare then you could think you don't have dh b/c you are gluten-free & here it is, the rash flaring. It's important to know that can & does happen. 

 

Now, you were gluten-free & the rash resolved until you got into the seafood which = iodine overload. I take that as a very good sign in your case. So do not despair. You may not have a long haul with this stuff.

 

Looking back, in hindsight, now that I know what I have, I can clearly see that I was a celiac even as a kid. As a teen I could not tolerate beer. it gave me terrible gut issues & I refused to drink it b/c of that. So I have had this building in my system for 40+ years or more. I am 56 now. The rash began to present for me around 8 years ago. Mild, very mild at first. So I can see now that I was a celiac with GI issues & then it morphed into the rash.

 

Yours may be a totally different case.

 

I am getting better! Where the individual lesions or blisters used to last 4 to 6 weeks; they now are down to 1 - 4 days before they begin healing & the healing is much faster. I mainly only have it on my legs from the knees down & my ankles, feet these days. I get a few spots various places on my body but they are short lived & they don't itch as much. I AM healing. I WILL get there. 

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Thank you both so much, Squirmy and Prickly. This whole thing has been such an emotional hurricane. Some days I feel good and strong and others, I just fall apart and cry and cry on my sweetheart's shoulder. For the first few months of this year, I kept saying how "gross" and "like a leper" I felt - I have banished that language and focused on being more loving toward myself.

 

This is the hardest thing I have ever gone through. It feels like I am being tortured.

 

I know you did not mean to scare me, Squirmy, and I want the truth of your experience. It's sometimes hard to hear, but it's so helpful. Every step of the way, there have been realizations like this that scare me and leave me overwhelmed. That must just be the way it is when someone is adjusting to a new reality, I assume. I have so much to learn.

 

I am so curious to see what other things might improve as I stay truly gluten free, besides my hair growth. Maybe my horrible periods will ease up. Maybe I won't have random bouts of IBS. Maybe my anxiety will lessen. Who knows?

 

And thank you Prickly: My freezer is well stocked with ice packs! :) It's the only way I can get any sleep at night.

 

Two more questions:

- Do you ever notice that your rash correlates with your menstrual cycle? Mine seems to some months but that may be a red herring.

- Thyroid tests: I am looking at some from Personalabs, that I can order without needing a doctor. When you say full thyroid panel, do you mean all of these?:

Antithyroglobulin Antibodies

Calcium, Ionized, Serum

Calcium, Serum

Fatigue Profile

Parathyroid Hormone (PTH), Intact

Reverse T3

T4, Free, Direct, Serum

Thyroid Peroxidase (TPO) Antibodies

Thyroid Profile with TSH

Thyroxine-binding Globulin (TBG), Serum

Total T3

Total T4

Triiodothyronine (T3), Free, Serum (Free T3)

TSH

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Prickly & others are better at the thyroid panels than I so I will let her answer that.

 

On the anxiety thing.... another of the infamous things related to celiac disease as well as depression. And yeah, the anxiety is a biggie! It can be major. big bad anxiety. I wish you could see the difference in my hubs on that score. I had anxiety too for the 1st time in my life for about 2 years before going gluten-free. It's gone now.

 

I'll lay some more money down on you today ~~~ IBS will go away. IBS is a dx that almost every single celiac has had & it's a big cop out by docs. IBS is a symptom not a diagnosis.

 

I has bloat that was like a colicky horse. I would look 15 months pregnant & fell it too. All gone now.

 

As to the question about the period & the rash ~~~ I had a hysterectomy at age 37 so can't answer you there.

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Thank you both so much, Squirmy and Prickly. This whole thing has been such an emotional hurricane. Some days I feel good and strong and others, I just fall apart and cry and cry on my sweetheart's shoulder. For the first few months of this year, I kept saying how "gross" and "like a leper" I felt - I have banished that language and focused on being more loving toward myself.

This is the hardest thing I have ever gone through. It feels like I am being tortured.

I know you did not mean to scare me, Squirmy, and I want the truth of your experience. It's sometimes hard to hear, but it's so helpful. Every step of the way, there have been realizations like this that scare me and leave me overwhelmed. That must just be the way it is when someone is adjusting to a new reality, I assume. I have so much to learn.

I am so curious to see what other things might improve as I stay truly gluten free, besides my hair growth. Maybe my horrible periods will ease up. Maybe I won't have random bouts of IBS. Maybe my anxiety will lessen. Who knows?

And thank you Prickly: My freezer is well stocked with ice packs! :) It's the only way I can get any sleep at night.

Two more questions:

- Do you ever notice that your rash correlates with your menstrual cycle? Mine seems to some months but that may be a red herring.

- Thyroid tests: I am looking at some from Personalabs, that I can order without needing a doctor. When you say full thyroid panel, do you mean all of these?:

Antithyroglobulin Antibodies

Calcium, Ionized, Serum

Calcium, Serum

Fatigue Profile

Parathyroid Hormone (PTH), Intact

Reverse T3

T4, Free, Direct, Serum

Thyroid Peroxidase (TPO) Antibodies

Thyroid Profile with TSH

Thyroxine-binding Globulin (TBG), Serum

Total T3

Total T4

Triiodothyronine (T3), Free, Serum (Free T3)

TSH

Those tests are repetitive. Try this link for info about constructing a full panel: http://thyroid.org/blood-test-for-thyroid/

I'd put one together that includes free t3/t4, total t3/t4, antibodies, and tsh. You also need to test your iron (ferritin and saturation http://labtestsonline.org/understanding/analytes/iron/tab/test), d, b's. some would include calcium and magnesium. Here's a link about ordering tests: http://thyroid.about.com/od/gettestedanddiagnosed/a/selftesting.htm

As far as the rash fluctuating with your cycle, yes. I noticed that. I went through a stage where my progesterone was so low I had breakthrough bleeding, plus the rash. Topical natural progesterone helped. I hate to pile more on, but you need to start reading more about adrenal damage from autoimmune disease. There's an excellent chance your adrenals need support - and if they are struggling, your hormones are struggling. I suspect you have more damage than you realize. Most of us do.

You need to start thinking of the rash as an autoimmune disease, and start thinking of yourself as an autoimmune patient. Dh is celiac disease, and celiac is an autoimmune disease...and if you have one you are at high risk to develop another...and you need to closely monitor yourself for them.

That said, just breathe. It's going to get better now. You know gluten and iodine affect the rash. You can control your exposure to both and influence the rash. You can figure out the tests and supplements you need. You'll get there. You really need to find a doctor/nd to work with, that you trust or at least one you have a mutually respectful relationship with.

I know you're exhausted and I know you're tired of the pain and misery of that rash. You're in the right place. You have help now.

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The past two days have been really hard. The rash was the worst it's ever been and I was stressing about finding a new PCP. I was so annoyed with the guy they gave me, it was all-consuming. What an arrogant prick! But then trying to negotiate finding someone knew and hoping that they would listen to me, really listen and be open minded? It all felt so impossible, far away, too much. I cried so much on Friday that my eyes hurt and were puffy (My S.O. calls it blubberitis. Hehe. )

 

But slowly I worked through the fear and realize that I could stop this panicked tailspin. I have an excellent nautropath that I am working with and I will see her this week. I ordered the tests from Enterolabs and ahem, "processed" them today, and I am ordering thyroid tests from PersonaLabs. I am eating so incredibly well I want to high-five myself! Tons of fresh, organic veggies at every meal (it's the right time of year for it), fruit, especially blueberries and marion berries that my parents grow, duck and chicken egg whites (also organic, also grown by my family), and fresh meats, pastured and grass fed when possible, beef, pork, chicken, lamb. Despite the rash, the lack of sleep and the stress/anxiety, I feel great! Ha!

 

And - I don't want to jinx it - but it appears that the rash may be rounding the corner. A lot of areas are darker, either red or brown, and dried, some are scabby and flaky and considerably less itchy. Swelling is down, overall. There are new little spots here and there that are furiously itchy, but I am hopeful that it is the death throes. *fingers tightly crossed*

 

Squirmy, thank you for sharing the progress of your healing. And mostly, I am so glad to hear that you are healing! This is the kind of stuff I came here for - real, 1st person knowledge and experience. The doctors are so unaware of this thing it's incredible! But I feel like I am about to have a rebirth, of sorts - who knows what kind of minor annoyances and afflictions may clear up or resolve in some way that I never thought possible? There are moments where it is kind of exciting, imagining fewer pimples, less PMS crap, healthier hair, less anxiety or unexplained periods of sadness/low energy, not to mention the possibility of no longer having the annoying digestive issues I've always had. None of them were so life disrupting (though the IBS got really bad for a few months during a stressful time in 2007), but they were uncomfortable: bloating, discomfort in the morning, difficulty eating in the morning, painful gas if I sat too long, diarrhea after particularly salty or fatty meals...all these things I just thought of as part of who I was and learned to live with them.

 

Prickly, I had a dream the other night where I was hysterically pleading with my new, arrogant doctor and telling him to please just believe me, that this is an autoimmune thing. I woke and realized that they are approaching this as though it is a dermatological issue and it's not - it's autoimmune. I have accepted that I am an autoimmune patient and I am focusing all my attention on what I need to do to properly take care of myself. This is my job now. (I have not been able to work - I am self employed and my job is physical. I gave myself the time off, as hard and scary as that was. I've worked so hard to build the business and I am just going to have to trust that I will be able to rebuild it when I am able to get back.)

 

So a few more questions have come to mind, for you two, or for anyone to answer:

 

- RE: adrenal support. Is there anything I can do by myself to support them, until I find a new and compatible doctor? Maybe this is something my naturopath can help with? Like I said, I am eating really well, and I am also taking naps as needed, whenever I am tired. I am delegating stressful things to family members and my S.O. and I am meditating.

 

- For Prickly and anyone else who has done the low iodine diet: how long did you do it for? I am all in for the long haul, but I just don't know how long after the rash heals in a significant way that I can reintroduce some iodine-rich foods. How did you deal with the reintroduction?

 

- I was prescribed Clabatizol and I really do not want to use it. Again, I feel like they are treating this dermatologically, and doing nothing for the autoimmune treatment. That being said, if one of you tells me that you have had good luck with it and that it was a relief, I might give it a try. But I am concerned that it will just make the rash come back with a vengeance next time or something

 

- How do you know if you are allergic to sulfa drugs? Is it one of those things where you have to try it and find out? *shudders*

 

- Any insight on how to deal with socializing around food would be welcome, too. This is something that has been worrying me for a while: the idea of going over to e friends' house or out to eat is slightly terrifying, so I am considering just eating beforehand or bringing my own food if invited to someone's house, and I probably just won't go out to eat for quite a while. I guess I can always go out for tea (herbal, no milk or sugar). I like being around people and Portland is such a food town, but I just do not feel that I can eat safely from restaurant kitchens. Is this something that worried you too? How did/do you deal with it? I have found the local GIG chapter and a couple of blogs about gluten free eating around town.

 

Ok, wow, so many words. Again, I cannot express how happy I am that I found this board. In just a few short days, you all have given me more info than several doctors and 52 dermatologists could in 7 months! (50 of those derms were from the Morphology Meeting that I was part of two weeks ago at the local teaching university. I had 50 students, residents and docs look at me and all of them were stumped and NONE of them felt that it was DH since the 5 biopsies and 1 blood test were negative.)

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The past two days have been really hard. The rash was the worst it's ever been and I was stressing about finding a new PCP. I was so annoyed with the guy they gave me, it was all-consuming. What an arrogant prick! But then trying to negotiate finding someone knew and hoping that they would listen to me, really listen and be open minded? It all felt so impossible, far away, too much. I cried so much on Friday that my eyes hurt and were puffy (My S.O. calls it blubberitis. Hehe. )

But slowly I worked through the fear and realize that I could stop this panicked tailspin. I have an excellent nautropath that I am working with and I will see her this week. I ordered the tests from Enterolabs and ahem, "processed" them today, and I am ordering thyroid tests from PersonaLabs. I am eating so incredibly well I want to high-five myself! Tons of fresh, organic veggies at every meal (it's the right time of year for it), fruit, especially blueberries and marion berries that my parents grow, duck and chicken egg whites (also organic, also grown by my family), and fresh meats, pastured and grass fed when possible, beef, pork, chicken, lamb. Despite the rash, the lack of sleep and the stress/anxiety, I feel great! Ha!

And - I don't want to jinx it - but it appears that the rash may be rounding the corner. A lot of areas are darker, either red or brown, and dried, some are scabby and flaky and considerably less itchy. Swelling is down, overall. There are new little spots here and there that are furiously itchy, but I am hopeful that it is the death throes. *fingers tightly crossed*

Squirmy, thank you for sharing the progress of your healing. And mostly, I am so glad to hear that you are healing! This is the kind of stuff I came here for - real, 1st person knowledge and experience. The doctors are so unaware of this thing it's incredible! But I feel like I am about to have a rebirth, of sorts - who knows what kind of minor annoyances and afflictions may clear up or resolve in some way that I never thought possible? There are moments where it is kind of exciting, imagining fewer pimples, less PMS crap, healthier hair, less anxiety or unexplained periods of sadness/low energy, not to mention the possibility of no longer having the annoying digestive issues I've always had. None of them were so life disrupting (though the IBS got really bad for a few months during a stressful time in 2007), but they were uncomfortable: bloating, discomfort in the morning, difficulty eating in the morning, painful gas if I sat too long, diarrhea after particularly salty or fatty meals...all these things I just thought of as part of who I was and learned to live with them.

Prickly, I had a dream the other night where I was hysterically pleading with my new, arrogant doctor and telling him to please just believe me, that this is an autoimmune thing. I woke and realized that they are approaching this as though it is a dermatological issue and it's not - it's autoimmune. I have accepted that I am an autoimmune patient and I am focusing all my attention on what I need to do to properly take care of myself. This is my job now. (I have not been able to work - I am self employed and my job is physical. I gave myself the time off, as hard and scary as that was. I've worked so hard to build the business and I am just going to have to trust that I will be able to rebuild it when I am able to get back.)

So a few more questions have come to mind, for you two, or for anyone to answer:

- RE: adrenal support. Is there anything I can do by myself to support them, until I find a new and compatible doctor? Maybe this is something my naturopath can help with? Like I said, I am eating really well, and I am also taking naps as needed, whenever I am tired. I am delegating stressful things to family members and my S.O. and I am meditating.

- For Prickly and anyone else who has done the low iodine diet: how long did you do it for? I am all in for the long haul, but I just don't know how long after the rash heals in a significant way that I can reintroduce some iodine-rich foods. How did you deal with the reintroduction?

- I was prescribed Clabatizol and I really do not want to use it. Again, I feel like they are treating this dermatologically, and doing nothing for the autoimmune treatment. That being said, if one of you tells me that you have had good luck with it and that it was a relief, I might give it a try. But I am concerned that it will just make the rash come back with a vengeance next time or something

- How do you know if you are allergic to sulfa drugs? Is it one of those things where you have to try it and find out? *shudders*

- Any insight on how to deal with socializing around food would be welcome, too. This is something that has been worrying me for a while: the idea of going over to e friends' house or out to eat is slightly terrifying, so I am considering just eating beforehand or bringing my own food if invited to someone's house, and I probably just won't go out to eat for quite a while. I guess I can always go out for tea (herbal, no milk or sugar). I like being around people and Portland is such a food town, but I just do not feel that I can eat safely from restaurant kitchens. Is this something that worried you too? How did/do you deal with it? I have found the local GIG chapter and a couple of blogs about gluten free eating around town.

Ok, wow, so many words. Again, I cannot express how happy I am that I found this board. In just a few short days, you all have given me more info than several doctors and 52 dermatologists could in 7 months! (50 of those derms were from the Morphology Meeting that I was part of two weeks ago at the local teaching university. I had 50 students, residents and docs look at me and all of them were stumped and NONE of them felt that it was DH since the 5 biopsies and 1 blood test were negative.)

1) I get swollen lymph nodes, flu-like feeling, and a very weird under the skin pinprick rash from sulfa drugs. But that's just me.

2) as far as adrenals go, I take Pure Encapsulations products:

DHEA 5 mg - 1 each morning

ADR Formula - ND told me 2 in morning, 1 early afternoon. I take 1 in the am now.

I take thyroid meds...

I am also on vitamin d, iron, multi vitamin, chromium and selenium (thyroid). I take digestive enzymes as needed (glutening/stomach upset) and XYMogenXP ProBio Max Plus DF probiotic as needed (should take it daily according to ND).

The adrenal and DHEA are in response to saliva testing and obvious adrenal issues because of thyroid and steroids.

I was hard-core low iodine 2 weeks. My rash healed and I stopped breaking out in 2 weeks. I started adding back high iodine foods at that point. Milk first, then skinless potatoes, then an occasional egg yolk along with an occasional high iodine veg like asparagus or seafood like shrimp. I was careful to not eat too much high iodine each day. It is cumulative. I did overdo it once, but my breakout was very minimal. The bumps were tiny and few in comparison.

It is not advised to eliminate iodine for too long - thyroid.

Right now, doing li, eating out is tough. You may be able to eek out a meal somewhere from a reputable restaurant that does gluten-free well. I just held off til I started adding iodine back and then only 1x per week.

In the interim, take your own food. Drink teas and coffees...crackers, whatever...or take a whole meal. We all approach this differently and awkwardly at first. You'll get better as you go. Friends will learn this is the new norm. Definitely seek out safe restaurants and try to meet friends there. If food isn't safe, eat before or take with and socialize. Don't drop your friends :).

Re:rash. Moisturize. A healing rash cracks and bleeds and hurts. Lotion 5x a day.

And a note on alcohol. It may be tempting to drink your social anxiety away with gluten-free cider or rum or tequila or wine...but be warned...most if us react very strongly (meaning we get shitfaced) immediately after going gluten-free. And following shitfaced we get deathly ill - vomiting, wanting to die kind of ill. Note: Gatorade is gluten free. I advise keeping it on hand of you decide to have more than two drinks.

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    • Anyone experience brain fog like this?
      Brain fog is a common symptom.  I had a hamburger patty from a local restaurant and am suffering the effects.  Sometimes mine is bad and sometimes it is mild.  This one feels mild, provided I am not "glutened" again.  I have the exact same feelings when I am contaminated.  I actually had 2 good days this week to ony have to go back through this again.  The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything.  TV is OK but for me just standing up or moving sometimes makes me dizzy.  Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving.  You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating?  The anxiety and the depression is the worst.  I am taking things to help with it but it doesn't always help.  Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep.   It will pass.  Just be cautious about everything.  I have opted to let my family know that I will bring my OWN food when we have gatherings.  I don't mind being the odd man out because I am already the odd ball.  One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price.   Hope you feel better soon.
    • gluten intolerance, dairy intolerance and fructose
      Look into The Paleo Approach by Sara Ballentyne, PhD.  Great resource and will probably answer your questions.  I have the same problem. You have to really read labels.  The only coconut milk I can use is an organic canned one.  Others have too many ingredients that are problematic.  For now, stay with meat and vegetables as someone else has recommended.  If rice works for you, great.  If not, winter squash is good.  The diet change is overwhelming at first but then it starts to make sense.  The one good thing about an intolerance versus allergy is the possibility of someday being able to add it back into your diet once your gut has healed.
    • Anyone experience brain fog like this?
      I went gluten free about a month ago, and was finally feeling *great* last week when wham -- my well-meaning Dad cooked me dinner and forgot to check the ingredients on the fish sauce he used. The upside of being glutened for the first time is that, after a couple weeks of feeling good, I feel like I can discern the symptoms a lot better now. I've noticed that the worst part, aside from the nausea, is the "brain fog," but I'm curious if my experience of brain fog is the same as or similar to what other people are feeling. For me, it becomes almost physically painful to concentrate on anything. If I try to read a book, or watch a TV show, it makes me feel dizzy, overwhelmed, and nauseous. For a couple days, I feel like all I can do is try to stay still and do as little as possible while I wait it out. It feels similar to anxiety, but not quite the same, and none of the usual tricks for getting through a panic attack help. Do any of you experience brain fog in a similar way? Where it basically makes you feel sick to try and concentrate on anything, even fun and relaxing things?
    • gluten intolerance, dairy intolerance and fructose
      I've never gone fructose free so can't help much with that.  But any fruit is probably a problem.  If you are serious about avoiding fructose you could do a search and print out a list of foods to avoid. http://www.mayoclinic.org/fructose-intolerance/expert-answers/faq-20058097 Yes, it very possible to have multiple food intolerance issues.  Many people have multiple food intolerances.  It might help to avoid any foods that are sweet for now.  Meat and most veggies are probably the way to go.  You may want to get some jerky to eat for snacks.  Peanuts might be ok but you'll need to verify that.  Boiled eggs are probably ok.  Most soda would be a no-no.      
    • Help
      Hi Courtney, You asked about dairy, and RMJ got it right.  Celiac disease destroys the villi lining of the small intestine.  Those villi make the lactase enzyme we need to digest dairy. Sigmoid colon thickening could be related to diverticulitis.  Which according to Wiki is a fairly common condition but doesn't always cause symptoms.  Diverticulitis can cause a problem if there is an infection though.  The sigmoid colon is part of the large intestine.  Celiac disease affects the small intestine, so celiac isn't likely involved.  I am not sure why the resident suggested celiac, unless there were some other reason to do so.  Possibly the weight loss, which could be explained by celiac disease.  Thickening of the colon may happen with Crohn's disease also.  And I'm not sure about UCD (ulcerative colitis disease) but it might cause that also, not sure https://en.wikipedia.org/wiki/Diverticulosis https://en.wikipedia.org/wiki/Sigmoid_colon http://biology-pages.info/G/GITract.html#pancreas http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/
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    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
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