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Jane87

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Jane87 last won the day on December 16 2017

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  1. DH and anxiety? Does anybody have any thoughts or knowledge on a relationship between increase in anxiety/phobias and gluten? I'm only just into the diagnosis stage yet but I've upped my gluten in take x 10 the past few months leading up to my blood tests today and my anxiety (to be precise cleithrophobia) has been through the roof. It's lingered on and off in the background for years but I've never felt so close to panic attacks etc as I've done lately. Might be completely unrelated? I've also broken out in painful cystic acne, few on cheek and chin. ??

    I FINALLY had my blood tests today for coeliac and thyroid (nurse was unable to tell me what panels the Dr had asked for). Results follow up appointment next week.  I had a mini elbow breakout this past week. As per my previous posts last month, I've been getting elbow bumps for 10 yrs but I've never had an outbreak so close to one ending before.  Pictures of latest minisode below. As always, thoughts and expertise from you guys is much appreciated.

    20180103_000407.webp

  2. On 17/12/2017 at 6:37 AM, Dyshidrotic Eczema said:

    Twenty-two years ago, I started getting these blister fluid filled bumps on my hands and feet. They would itch and then once they popped they became scaly. I went to the doctor and dermatologist, but no one could tell me what they were. I tried some creams that they'd prescribed, but none of them helped, so I just learned to live with it. I would always hide my feet during a breakout because the sores looked so horrible.

    Several weeks ago, I went to the doctor because I was feeling tired all the time. I have this "fog" in my head. It's like... my vision's a little clouded (even though nothing's wrong with my eyes; I've had that checked) and it's hard to concentrate on day to day activities. When it's really bad, I feel like I can't even carry on a conversation. Plus, I was having diarrhea almost everyday.  The doctor ordered routine bloodwork and when looking in my records noticed that I'd frequently had a post nasal drip when I'd gone in for evaluations. All of my bloodwork was normal.

    I was ready to give up again when my primary doctor called me to schedule my routine physical. He wanted fasting labs done. Which I did and they were also normal. I decided to go gluten-free after I saw these results online, because when my daughter was going through her issues (that's a whole different story) I went gluten-free with her and the "fog" in my head actually cleared! I was about 2 weeks gluten-free when I saw my doctor and the fatigue, fog and diarrhea had subsided. The only remaining concern was the blister fluid filled bump on my foot. He took a look at it and said he thought he knew what it was!

    Dyshidrotic Eczema...He prescribed the strongest topical steroid and said to put it on whenever I feel an episode coming on. That's the thing, I can tell when I'm going to get it. I feel like I'm retaining water the day before... my skin feels tight.

    Since the diagnosis, I've been researching Dyshidrotic Eczema and it seems it's linked to allergies. I've seen a lot about nickel related allergies, but I've also seen a lot of people who've experience it posting about celiac disease or a gluten intolerance. I don't think I can even be tested accurately now that I've gone gluten-free. Does anyone have advice on how I should proceed? Has anyone experienced similar things?

    Hi! Please check out the Dermatitis Herpetiformis forum on this website.  I'm currently in the early stages of being tested/diagnosed. DH is skin presentation of coeliac and some people's can resemble dishydrotic eczema but is often very itchy, bilateral and sometimes painful. I'm not an expert at all so you best head to the DH forum https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

  3. On 12/16/2017 at 11:15 AM, Barbie Wickham said:

    Those elbows look very familiar! I had that rash for a little over a year and a half, and with each break out, the blisters would change, worsen in appearance and the itch got insanely itchier.  The only topical product I found that helped a bit, was GoldBond lotion or liquid spray with Lidocaine.... Drs had me then just use Aquaphor (the Vaseline jelly type ointment) So, yes, I’ve read too that blood tests can have false negatives & positives.  However, my Dr ordered a complete blood work up and then added a special Gluten panel order... I gave  about 6 vials of blood for all tests. I was having so many vitamin deficiencies and off the charts inflammation levels throughout the year & 1/2... it all made such sense when we looked at all my symptoms & also the positive bloodwork. He told me I lit up not like a Christmas tree, but like the entire tree lot. It also made sense why all biopsies and cultures kept coming back as “unknown uticaria”       The specialists were taking samples incorrectly. What should have been a somewhat easy diagnosis turned into just a nightmare. All the misdiagnosis (scabies 3 Times, spider bites, excema, herpes and 3 Drs flat out just said I don’t know, try another Dr.) and the heavy medications prescribed (methatetrix, Otesla, shots of cortisone followed by 6 months of oral steroids, the anti fungals and the parasite pesticides!) I was a mess! All unnecessary and many were very harmful to my overall health. Since I’ve not had many stomach problems,  my Dr. & I decided to just go with the gluten-free diet and Dapsone and see how I responded. Incredibly within 2-3 weeks the Rash was gone from everywhere except for my very worst area, my bottom. I may have some intestinal testing done next year to be sure there’s no damage there. So between the  positive blood test and diet changes are working so well, I’m convinced I do indeed have DH. It’s also genetic and I have 2 first cousins with Celiac Disease. I’ve also learned from people here and the great information site provides, you must still be eating gluten for tests to be accurate. I can’t imagine eating the poisonous Gluten to further confirm DH, so I chose just to go with Diet and Dapsone. I hope you get proper results next month and on to a rash and itch free life!  Below is the picture my Dr found on his own time, on his “weekend” research... he was so excited he phoned me and had me come in first thing that following Monday morning. That picture looked exactly like me! I am his first case of DH in over his 30+ years of practice. Image censored by Google for being "too shocking".

    Thank goodness you got a Dr in the end that recognised what was happening! I will have to see what my bloods show in January, I really hope they show coeliac, not because I want it but because I feel that's what this is! 

    A fair few people yourself included Barbie have said my elbows remind them of theirs! The only thing I'm wondering is, mine never go bloody/open like yours and some other DH members on this forum. I can't stand the thought of scratching my elbows when they flare so I scratch around the bumps. With my back I can't help but scratch as the itch is wild and as it's a flat surface I feel less sickened by the thought of scratching my back and legs. 

  4. 17 hours ago, squirmingitch said:

    Be forewarned & print this article out & take it to the doc with you.

    Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. 

    From:

    Open Original Shared Link

    To reiterate...... that is 60% of those with dh test negative on the celiac serum panel.

    Thank you squirmingitch  I had my Drs app on Wednesday, it was over in 5 minutes after he looked at my pictures,heard my family history he booked me in for bloods for Coeliac and Hashimotos in the New Year. I'll wait and see what the results are (should have them by mid January) and I'll book a Drs app to discuss my results whatever they may be. I'll be prepared to press for further testing for sure!! 

  5. 8 hours ago, Barbie Wickham said:

    Jane, oh I feel for you... I can’t imagine even trying to exercise at the height of my unyet dx’ed DH.... just getting dressed was a dreaded experience for me. The symmetry and bilateral rash and blisters were big clues to my Hero of our family  Dr. (not the dozens of specialists I saw!), along with rash on the pressure points of my body... hands, elbows, tops of thighs and the ultimate worst area, my bottom. I posted some pics prior to this, in reply to squirming itch and cast iron stomachs posts... I’m going to try to add a few more pics here, (site only allows a small upload for each reply). I hope your provisional Dr appt went well and your questions were answered. I’m 2 months into a gluten-free diet and a 25mg daily dose of Dapsone . Every time I try to stop the Dapsone I suffer a new breakout, so I’ll continue until my immune system gets stronger. I had my Thyroid gland surgically removed almost 40 yrs ago due to Hyper-Thyroidism and a very large goiter.  I then quickly went to Hypo-Thyroidism, (Graves Disease) and have since taken Synthroid daily.  I’ve read Thyroid problems are quite common amongst Celiacs and/or Celiac DH patients.  Best wishes to you of a correct diagnosis and  good health to you (and all of you reading this post) in the upcoming New Year! 

    Hi Barbie thanks for sharing your pictures and story! I'm glad gluten-free and dapsone have finally gotten you relief. How many years did you suffer with this?

    I've just finished a flare up of this as yet undiagnosed rash so I've the Dr booked me in for bloods tests in the NewYear although Awol and others on this forum have told me that Coeliac blood tests are not always "positive" for DH. I'll upload my latest elbows pics etc below. 

    PhotoGrid_1513447590111.webp

    PhotoGrid_1513447665189.webp

  6. Thank you for all the feedback so far guys! ❤
    I finally had my initial Dr appointment this afternoon. I walked in and said I'd like to be tested for DH/Coeliac. He took a look at my pictures (elbows, fingers, back), I gave him a 30 second outline of family history (various autoimmune incl. Crohn's, Hypothyroidism, Lupus, Gluten Intolerance etc). I didn't have to say anything else before he was booking me in for bloods for Coeliac & Hashimotos Thyroiditis. It was all over in 5 minutes and my blood test appointment is on 2nd Jan. I was expecting to be told about psoriasis & eczema etc etc and fobbed off but he just offered to book bloods straight away.  
    I'm a bit surprised! Expected harder work. Almost seems too good to be true... I have no active lesions right now (yey but annoying timing) so can't biopsy. Anyone else care to share their experiences of trying to get diagnosed?

  7. 1 minute ago, Victoria1234 said:

    Oh wow, I can't even imagine dh in a sweaty place! I used to scratch mine till bloody sometimes.  I super hope you get diagnosed quickly and are on your way to healing very soon.

    Thanks Victoria. I never scratch my elbows  (just run my fingers around the outside as I feel v.uneasy about scratching the bumps, like sickened, so it stops me scratching and my elbows are the least itchy). However when it's on my lower back or both calves I scratch like crazy!!! 

    Could it be the iodine in sweat? I'm wondering now as I've been told on here that iodine foods can aggravate DH when injested. 

  8. 19 hours ago, knitty kitty said:

    Playing the devil's advocate.....if you want to have a DH outbreak, eat foods high in iodine, such as seaweed or kelp, strawberries, cranberries, turkey, shrimp and dairy products like cheese and yogurt, or even idolized salt.

    I had really bad DH outbreaks after eating rye breads and thick chewy pizza crust.  

    Here's a couple of articles that might help.

    https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

    Open Original Shared Link

    Hope you get diagnosed.

    Thank you for the tips! Fingers crossed at the Drs app tomorrow they'll refer me for the bloods and/or biopsy and I'll continue on my gluten and add more iodine in the waiting time leading up!

  9. DH exacerbated by sweat? Any relation/connection there in your experienced opinions? If I flare up on my (as yet unidagnosed) lower back, it's hugely aggravated by exercise as I sweat on my lower back when I run so it makes it even itchier (100 times itchier)!! My youngest said it looks like "bubble wrap" on my lower back. Anyone else have experiences of DH (or other bumpy, red, itchy rashes) being irritated by sweat?

     

    (For anyone that's not read my previous posts I'm due to attend a provisional Drs appointment tomorrow regarding long standing itchy bilateral rashes & I have a family history of Coeliac, Crohn's, Lupus etc.)

  10. I've been watin

    6 minutes ago, cyclinglady said:

    Okay, I am a little confused.  You really need to be a full gluten diet for up to 8 to 12 weeks.  That is because researchers can not tell how fast an individual builds up antibodies that can be measured in their bloodstream.  If you get a negative now, will your doctor re-test?  Will your insurance pay for it again?  

    I've been eating gluten my whole life  (pretty much) and I meant that the last 4 weeks especially (when my rash was flared up again and I was led the possibility of DH) I've eaten more gluten then normal everyday in preparation for getting tested at some point as I've read here that you need to eat gluten daily for the tests to work. I'm only seeing a Dr for an initial app on Wednesday, they won't conduct testing on the same day, I'll need to be booked in for bloods. I'm in the UK so I won't be paying for any of these tests. I just have been trying to gather information ahead of my Drs appointment so that they will refer me for Celiac testing. Hope that makes sense.

  11. 53 minutes ago, cyclinglady said:

    Push for all the celiac blood tests: TTG IgA and IgG, EMA, and DGP IgA and IgG.  Make sure they test your Immunoglobulin A (IgA) which in the case for celiac disease acts as a control test.  Note:  you have to be on a gluten diet for any of the tests to work (like 12 weeks).  

    Open Original Shared Link

     

    Thanks for that info. Really helpful. I've been eating gluten everyday for about 4 weeks now and prior to me even considering DH I was regularly eating gluten unaware that it could be the problem! 

  12. Hi all!

    I've had invaluable feedback on my first post "Look like DH? Bilateral Itchy Bumpy Elbows" where I've outlined my symtpoms and family history. My elbows are in "remission" following 5 weeks of bumpy rash, just in time for me to attend my Dr appointment on Wednesday. Luckily I have lots of pictures of elbows and other rashes and I've learnt a lot from this forum. My question is now, what blood tests should I request from my Dr as they won't be able to biopsy my rash currently and I can't predict when it will come back next (with a vengence no doubt). Are the blood tests for DH different to those for "classic presentation" Celiac? I've heard it's your IgA and TCG; have I got that right?

  13. I can't say what it is but just a tip for alleviating dry skin itch: Epsom salt baths every other/every day. I'm looking to be tested for DH (I have a recent post in this DH forum) particularly for my elbows. My calves where I get dry & incredibly itchy with no rash may have nothing to do with DH and for healing dry skin a few handfuls of Epsom salts in every bath stop it! Better than any of the lotions I've used. I've attached a picture of the brand we use. I get ours at a bargain store. Reduces the amount of time feeling itchy on my calves by 90% Please try it!

    s-l400.webp

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