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dani nero

DH Photo Bank

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Dani,

I sent you a private e-mail (hope that was okay!), and in it I explained that I'm officially diagnosed with celiac, and my gastroenterologist told me that if he had seen my lesions even before diagnosing me with celiac, he would have told me that I had DH and was most certainly a celiac. My son gets these same lesions in the same locations when he is glutened, and he's officially diagnosed with celiac. The fact that gluten and iodine play a role in our outbreaks lends credence to the fact that we both have DH...and I personally believe that anyone who breaks out in itchy, blistery lesions when ingesting both gluten and iodine can be pretty much assured that they have DH. Just my personal opinion, though...

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Okay...Dani helped me with a link that I can share with you.

This photo is not for the weak of heart--it might even scare small children. My photo shows many scars from a glutening on my face and neck that occurred more than four months ago, but which have continued to re-erupt due to the iodine in my thyroid medication. I think the episode is reaching the end, and most of the lesions are now simply scars. I have identical lesions/scars on the other side of my face, too. And, no, I do NOT leave the house without applying a special makeup to mask the lesions/scars. I use AirFlash by Dior, which is a spray-on makeup--I apply it with a small brush, though, to extend the product. It actually gives me an "airbrushed" look of near-perfection. Before I discovered it, I just wanted to wear a bag on my head. My DH was not diagnosed officially, but my celiac was...and my son experiences the same outbreaks in the same locations when he eats gluten. As I stated previously, my gastroenterologist told me that if he had seen the lesions before my diagnosis, he would have told me immediately that what I had was DH and that I most certainly have celiac. Dermatologists are so bad at recognizing DH and testing properly for it, I doubt that there are many DH sufferers who HAVE been officially diagnosed.

http://rainytown.se/images/external/dh_si/rosetapper_photo.JPG

As for how the blisters feel as they are emerging, mine first feel very itchy and swollen. Usually, a blister forms, and once that breaks, it becomes even more swollen and itchy. It also hurts all the way down through all the soft tissues (the way a herpes sore feels). Then let the peeling begin! My DH lesions peel every 12 hours like clockwork. They get covered by a fine, dry, dead-feeling covering that itches like crazy until it's peeled off. Only then does the skin feel smooth again, and the itching is lessened; however, the pain is still there. My mornings entail peeling off all the dry coverings so that I can apply my makeup; otherwise, the dead skin covering the lesions turns white and flaky (really disgusting). The peeling continues twice a day until it drops to about once a day after 2-3 months' time. The lesions get drier and less itchy, and eventually I end up with a dark scar--at first, it's purplish in color but fades to a dark brown color. As the eruptions become less frequent, they sometimes re-erupt under a scar, which requires that I use a sterilized needle to make a hole so that the blister can drain. Then the peeling starts all over again! It's a horrible cycle that is kept alive by the iodine in my thyroid medication. Before I had thyroid problems, I avoided iodine and was able to clear up DH outbreaks in less than a week after being glutened. Now, even the slightest gluten contamination can cause DH outbreaks that last four months or longer.

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Great idea!

Here's some of mine:

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png (emerging)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png#!oZZ3QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-05-31at101025PM.png (older part of rash)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png (this is what it looks like when it's 'inflamed')

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png#!oZZ2QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-06-17at54924PM.png (deflated and healing. sorry about the quality)

Brief history: I went gluten free Feb. '12 in an attempt to help relieve my GI 'issues'. Through the process I have discovered that being gluten-free has resolved *many* seemingly unrelated symptoms for me. I developed this rash after my first exposure to gluten (while gluten-free, approx. March '12). I get the rash in 3 different areas - it seems to be symmetrical. Responds well to low iodine and gluten-free.

I am not formally diagnosed as I am still searching for a competent doctor. I've got a lead on one (yay!) and plan to get the genetic testing done sometime in the near future. :)

Edited to add associated symptoms: the rash is *extremely* itchy - wakes me up! It tends to appear all at once - like a volcano eruption. Triggers that I am aware of: gluten, gluten cc, iodine, nighttime, hot water and hot weather.

the 3rd photo is pretty much what mine look like. I was calling them hives but I guess not. To me this is as good as a blood test.


Laura Grace

65 years old. Diagnosed with GERD at age 63. Started feeling bloated after eating bread & rolls in 2012. After doing online research ate gluten-free for a week & symptoms resolved. Symptoms returned when I glutened. That's good enough for me. Because testing is often inconclusive will not get tested. In 2012 had colonoscopy and endoscopy which showed no damage to the villi. In February, 2013 had capsule endoscopy which showed no damage to the villi or intestines. Diagnosed by gastroenterologist with 'probable non-Celiac sensitivity. Time to get serious before damage occurs.

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Hey everyone! This is a GREAT thread! I am not diagnosed with either celiac or DH....you can catch up on my intro here. :)

Just thought I would share a few pics here, since it COULD be DH

This is several days old, it is actually looking a little bit better today:

Here is this morning, after 1.5 weeks gluten free...although it is probably just coincidence. BUT, I haven't had a new blister in a few days now.

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This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/images/external/20120622_135205.jpg

Any chance your symptoms fit with those of dyshidrotic eczema and not true DH?

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Any chance your symptoms fit with those of dyshidrotic eczema and not true DH?

It does look a lot like it which is confusing. The rash however also appears in my nose and scalp, and reacted when I've overdosed on sals and iodine.

I don't know if I touched any metals which might contain nickel at the same time as a overdosing took place though.


Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.

Also G6PD

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Azure - I had to open up a photobucket account and post pictures there and then post links to that site. I haven't been able to figure out how to post them directly here. I hope you can post, I'd love to see pics that have been confirmed by diagnosis.


Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.

11/2012 tested positve for 1 of the 2 celiac genes

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On 6/17/2012 at 3:19 PM, dani nero said:

I thought that a thread containing a collection of the different shapes and forms of DH could be helpful to people looking for something to compare their own rashes with. So go ahead and post your rashes here to help others find a point of reference. Please add associated symptoms and a short history.

I am however doubtful of this idea being a good one because some people might add photos that are not related and confuse people who are new to all this. I hope it will be ok and if it's not then it's ok to delete this thread and I apologize in advance ?

Since I haven't seen a rash that is milder than mine I think that it's actually a proper coincidence that mine is the first one ?

These images were taken when the rash was in it's mildest form. It has sadly developed since these photos were taking, and gets pink swollen bumpy areas under the blisters. It is also starting to spread to the next finger and on the webbing between my fingers.

The rash used wake me up at night with a blistery, throbbing, itching, and burning finger when I used to consume gluten. Now it mostly burns whenever it shows up with very mild itching. The water in the blisters is clear.

Important: Please note that I'm self-diagnosed, meaning this rash is based on my own speculations based on my symptoms all put together.

I do not have a photo but had the same type of rash all over my hands in 2010. Both hands were covered and OMW, it bout drove me nuts! My doctor then did not know what caused it and gave me topicals but I never did have complete relief. I had to wear gloves to wash dishes and finally just told my family, no more dishes for me.

I recently started Dapsone as I have the blisters which I scratch, they pop, bleed, scab and leave scarring and it is all over my body. I see a great improvement and I am eating gluten free and trying my best to be iodine free. Dapsone has made this condition tolerable for me, not a total itch relief. My blood test was negative for Celiac but so was my cousin's. She did test positive with a biopsy via endoscopy.

I have the rash from scalp to sole of my foot. I really don't care if I ever have a "diagnosis of Celiac". I will continue the gluten free diet for the rest of my life. I see the difference in my skin and know what it takes to heal.


Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~

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I commend you on not scratching them. At times I have to. I have some breakouts which are totally inflamed and raised as in a hive that are at least a quarter in size. They have tended to get smaller thru time but every now & then I get a really big eruption that is also more tender and much harder under the surface of my skin. They are usually much more painful. I have been gluten free for 2 yrs this Dec. Of course, one never knows when cc will happen. I will usually have a reaction if I eat out even though I am very careful. The same is true if we have a family get together & I try to be very careful. I never realized it would take this long, but the longer I am gluten free the quicker I get a reaction. Mine usually take quite a while to disappear. In the past 2 years of gluten-free there has never been a time when I have not had eruptions. My skin is always broken out.

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For most of us with DH we have not been able to find satisfactory dermatologists who understand our condition. i have been researching sites for 2 years and this is by far the best place to go to to get info & advice. From people who share the same issues & can't find answers anyplace else. People who do not have this condition do not understand it nor do they know how we feel or react. Their info is only based on info they have read about or receive from others. I have had the most helpful info here. For those not positively diagnosed but know what the problem is we would NOT want to go thru the suffering that eating gluten would do to get a diagnosis.

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When you are able to post those pics it would be very useful to the rest of us. I am also a new member & have found this to be the best source of info. I have been gluten free for 2 years and in that time I have never had skin that wasn't broken out with lesions in varying stages.. They are not as bad as they used to be however.

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My scalp is covered especially back of head. I have some lesions on both knees, not as much as in these photos. The sole of my right foot is covered with lesions. The ones on my foot have healed and the skin has peeled off.

Trying to load the photos. . . we'll see if I can get this accomplished. :huh:

http://i1323.photobu...6/closerash.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/siderashclose.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.jpg

http://i1323.photobucket.com/albums/u584/lindareading56/lynupperbackrash.jpg

I have been on Dapsone since October 20th and eating gluten free and iodine free (started on the same day) I have lost 25 lbs and my sugar level is much better.

I still have the itching, burning and stinging but is probably at least 75% better now.


Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~

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Oh you poor, poor thing!!!!! You've got it BAD don't you? Well, I don't know really anything about the dosing of Dapsone but I would say maybe you need to talk to your doc about upping the dosage. Now, upping the dosage will not make the places heal any faster. This stuff takes it's own sweet time healing & it is vexing in the extreme. So Dapsone will not help with that. But the Dapsone is supposed to stop any new outbreaks as well as stop the itch, sting, burn. After a whole month on Dapsone; still having the itch etc.... I would say it's time to talk to the doc.

And I've said this before but it bears repeating ---- when you're on Dapsone it masks dh reactions so you have no gauge as to getting glutened or cross contaminated so you need to be ​ extremely careful that you are not getting the slightest trace of gluten. Just a reminder. :)


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Oh you poor, poor thing!!!!! You've got it BAD don't you? Well, I don't know really anything about the dosing of Dapsone but I would say maybe you need to talk to your doc about upping the dosage. Now, upping the dosage will not make the places heal any faster. This stuff takes it's own sweet time healing & it is vexing in the extreme. So Dapsone will not help with that. But the Dapsone is supposed to stop any new outbreaks as well as stop the itch, sting, burn. After a whole month on Dapsone; still having the itch etc.... I would say it's time to talk to the doc.

And I've said this before but it bears repeating ---- when you're on Dapsone it masks dh reactions so you have no gauge as to getting glutened or cross contaminated so you need to be ​ extremely careful that you are not getting the slightest trace of gluten. Just a reminder. :)

Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)


Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~

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FWIW I have only eaten out once since going gluten-free & that was before my hubs found out he had it TOO. We went to Chinese & I brought my own food, a sandwich, I ordered wine & an iced tea to drink with my sandwich. They had no problem with it & I told them in advance what I was going to do. To me, it's just not worth taking the risk. It is so easy to get cross contamination in a restaurant situation.

It is wonderful that you have such a supportive family!!!!


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....

I posted a full story on another topic....

http://s1322.beta.photobucket.com/user/ampmomof3/library/#/user/ampmomof3/library/?&_suid=135489927789603616105665253381

Thanks and any opinions are welcome!

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This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....

I posted a full story on another topic....

http://s1322.beta.ph...616105665253381

Thanks and any opinions are welcome!

This is the thread ampmomof3 spoke about. I will reply there since the bulk of the information is there.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Initial skin biopsy (punch): eczema negative, puritic vesicle observed

Immunoflorescence IgA skin biopsy (punch): Weak Postive

Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive

Small Intestine biopsy (EGD): negative

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

zvbcs3.jpg

2h7jgps.jpg

2n8c3v7.jpg

2vbs9w6.jpg

2ith9uh.jpg

34ec9kk.jpg

34dhsvq.jpg

waprmo.jpg

33lla90.jpg

2agm6vr.jpg


Skin Scraping for microscopic analysis - negative for scabies 9/24/2012

Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012

Prednisone 10mg 2x daily - no improvement 11/09/2012

Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012

Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012

Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012

Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)

Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012

Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012

Gluten Free 12/28/2012

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I am dx'd since October 2012 with DH via skin biopsy, and gluten free since mid-October {don't even ask about Sandy's impact on my crazy life} .... {we lost our home}

I am uncertain if I can post any photos, since I'm new to this forum.

I was initially treated in September with prednisone for 3 weeks, which mostly cleared the rash; it quickly rebounded, though, when the prednisone was stopped. I have a very painful, sometimes itchy, mostly very painful rash on both elbows, both hips, upper thighs [front and rear], and buttocks, plus some minor spots along my arms and my hairline. The rash is always symmetrical and, like I stated, very painful. I believe the underlying antibodies attack nerve cells, thus the pain, and for others the severe itch.

I am finally in good hands, medically speaking, at a university clinic where the latest cutting edge science is being studied; I am actually a part of the study there, as the MDs don't see too many cases of DH.

Dapsone may be in my near future if the rash persists.

Edited by moneek

- Monique

- Dx w/ Hashimoto's 09/2012

- Low-dose Synthroid, starting 10/15/2012

- Dx w/DH 10/2012 via skin biopsy + presentation of rash

- starting the gluten-free challenge week of 10/22/2012

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Welcome to the board moneek! And to the club none of us ever wanted to be members of. :o Tealiemonster is new here too. If you read the threads she has posted on then it will help you to learn.

I am so sorry to hear you lost your home to Sandy. I come from hurricane territory myself having lived most of my life in southeastern coastal Fl. so i know full well what you are going through. It's rougher than rough. :unsure:

Keep us posted on the research please. I believe you are right on the underlying antibodies attacking nerve cells. My hubs & I have discussed this often.

You are allowed to post photos. If you can figure out how to! :lol: :lol: :lol:

The best thing any newbie can do here is to read as much as you can of the forums & threads --- not just this dh forum --- you will learn fast that way.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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I was able to post my photos to photobucket .... unfortunately, they are in reverse order, the first ones, the majority of the pix, are from December 2012; the last ones are of the initial manifestation of the rash back in July 2012, plus a few in between from November, when I actually thought I was getting a bit better. 

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

I use no cosmetics at all, with the exception of gluten-free lipstick (Gabriel's), I lubricate the rash with a combination of pure coconut oil and borage oil lotion (shikai children's lotion, gluten-free, per the manufacturer: http://pics1.ds-static.com/prodimg/75483/300.jpg )

I'm also avoiding the majority of gluten-free food products out there - they are loaded with corn and tapioca and lots of ingredients that I have never heard of. I am eating mostly whole foods, fruits, veggies, meats, chicken, etc.

Best of luck to everyone.

M


- Monique

- Dx w/ Hashimoto's 09/2012

- Low-dose Synthroid, starting 10/15/2012

- Dx w/DH 10/2012 via skin biopsy + presentation of rash

- starting the gluten-free challenge week of 10/22/2012

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