Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Biopsy Results In...

CrazyforCandles

Recommended Posts

CrazyforCandles Rookie
CrazyforCandles
Posted

My doctor finally called me in today and said that although my IBS symptoms do corralate to a gluten sensitivity and likes that since I went Gluten-Free 3 weeks ago my stomach issues have subsided.... my rash tested Positive for Pleva or Mucha Habermann Disease and doesn't believe it is Herpetiformis Dermititis. This is treated by Light Therapy and ridiculously strong amounts of antibiotics...and sometime within the next 2-36 months it should go away. :( Sounds not so good for the rest of my body tho..

I looked online and agree the images do look a lot like what I have. Here's my dilema.... from what I have read from our Advanced Members on this Forum is that celiac disease causes other immune disorders..so I'm curious if celiac disease could have brought this on as well... does anyone have any knowledge on this?

My doctor recommends keeping a food journal and slowly adding a little gluten each day to my diet and to report how I feel/ rash changes/ etc. With my families history of Thyroid problems, Cancer of the digestive systems, IBS, etc.... I am afraid that like so many on here... I go back to my old, normal healthy diet BUT I do have celiac disease, and it will go undetected (false negative blood/ skin biopsy tests) and I will kill my intestines. On the other hand- I would love to eat a REAL cookie (sorry folks...Bob's Red Mill Homemade cookies were like bricks :( and indulge on an occasional burger etc. The Gluten-Free diet is still a great healthy thing to live by and I will do what is necessary but if I don't have it then gluten in small amounts is healthy for ppl without celiac disease.

** I just don't want to find out 10 years from now... "sorry, we made a mistake- you should've stopped eating gluten years ago- oops our mistake".... and then I'm the one suffering with damage that cannot be reversed. Is there a 100% test I can take to be sure I do or DO NOT have celiac disease?

I KNOW THERE IS A LOT OF QUESTIONS THIS TIME BUT I AM A LITTLE UNSURE OF HOW TO PROCEED SAFELY.

Thank you in advance- you all have been very helpful this last month!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Did they biopsy the lesion or the skin next to the lesion?

Mucha Habermann Disease is autoimmune and autoimmune diseases usually travel together. I don't think you not having DH rules out celiac or gluten intolerance.

I am assuming you have had the celiac blood tests and/or biopsy and they were negative? My next step would be to try the gluten-free lifestyle for three or more months and see if anything changes. Hopefully you will get some answers soon.

ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately the only for sure way to know if gluten is an issue for you is to eliminate it completely. Blood tests and biopsies do have a fairly high rate of false negatives. It is significant that your GI issues have been relieved by the diet. You should consider continueing with it strictly.

Pleva or Mucha Habermann Disease is very rare and I am so sorry you are having to deal with this. I hope it resolves soon for you. If your case is severe do contact organizations that deal with rare diseases for support and information during your treatment.

CrazyforCandles Rookie
CrazyforCandles
Posted
  • Author

DixieBell- he did two biopsies. One next to a lesion and one that was one actually a lesion. Sent it away to Northwestern.

RavenWoodGlass- Yes, my blood tests showed normal and "unlikely" to have celiac disease.

My doctor did agree that I still may be Gluten intolerant even tho the blood test was negative and told me to trust my body, watch the food journal/IBS symptoms and I will find my answer in time by paying attention to how I feel.

I think I will do just that. I miss my fav foods but like how I feel now much better. I will do the journal for a month and see how it goes. Maybe there is something else I am eating that give me the IBS problems- ( although celiac disease pretty much describes ALL the problems I've had for the last 30 years, including infertility for 8 years)

I've spent the last month researching celiac disease/ HD.... now I start on the PLEVA. There is much less info on that online though :(

and no known reason/ cause/ or length of time. urgh

drgoogle Newbie
drgoogle
Posted

DixieBell- he did two biopsies. One next to a lesion and one that was one actually a lesion. Sent it away to Northwestern.

RavenWoodGlass- Yes, my blood tests showed normal and "unlikely" to have celiac disease.

My doctor did agree that I still may be Gluten intolerant even tho the blood test was negative and told me to trust my body, watch the food journal/IBS symptoms and I will find my answer in time by paying attention to how I feel.

I think I will do just that. I miss my fav foods but like how I feel now much better. I will do the journal for a month and see how it goes. Maybe there is something else I am eating that give me the IBS problems- ( although celiac disease pretty much describes ALL the problems I've had for the last 30 years, including infertility for 8 years)

I've spent the last month researching celiac disease/ HD.... now I start on the PLEVA. There is much less info on that online though :(

and no known reason/ cause/ or length of time. urgh

Did you find your rash went away when you went gluten-free? Or you felt better but the rash didn't improve?

Sorry to hear that you must re-start your journey, in a way, but hopefully now that you know at least a part of what you have, you can address it in the best way possible.

I've been getting UV therapy for a few months now for whatever it is that I have. I did find it helped, at least early on, in healing existing lesions...and I've been on a couple rounds of antibiotics too without any major ill effects that I could note. I did start taking probiotics when I was on the antibiotics.

Best of luck and I'll be following your journey if you keep posting here!

CrazyforCandles Rookie
CrazyforCandles
Posted
  • Author

Did you find your rash went away when you went gluten-free? Or you felt better but the rash didn't improve?

Sorry to hear that you must re-start your journey, in a way, but hopefully now that you know at least a part of what you have, you can address it in the best way possible.

I've been getting UV therapy for a few months now for whatever it is that I have. I did find it helped, at least early on, in healing existing lesions...and I've been on a couple rounds of antibiotics too without any major ill effects that I could note. I did start taking probiotics when I was on the antibiotics.

Best of luck and I'll be following your journey if you keep posting here!

CrazyforCandles Rookie
CrazyforCandles
Posted
  • Author

Welll...the rash improved and flared and improved and flared again this last month so its tough to say. My doctor suggested the UV therapy but there isn't any places closer than 60 miles away for that..unless I hit a tanning bed lol. What antibiotics did u use? I will start back on my probiotics (Acidophilus) tomorrow.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


drgoogle Newbie
drgoogle
Posted

Welll...the rash improved and flared and improved and flared again this last month so its tough to say. My doctor suggested the UV therapy but there isn't any places closer than 60 miles away for that..unless I hit a tanning bed lol. What antibiotics did u use? I will start back on my probiotics (Acidophilus) tomorrow.

I was taking cephalexin - went through two rounds of it within a couple months. Also have a steady supply of topicals: bactroban and fuciden.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,381
    • Most Online (within 30 mins)
      7,748
    AHD
    Newest Member
    AHD
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lauramac
      COVID19 and getting glutened

      By lauramac · Posted

      I was diagnosed with Celiac Disease abput 10 years ago. When I was initially diagnosed my only "symptom" was persistently low iron (that occasionally dipped into anemia). After diagnosis,  over time, I started to develop symptoms when exposed to gluten--they have been overall relatively minor, but have increased over time (and yes, I realize my guts are likely being wrecked regardless of the symptoms) on the rare occasions I've been exposed to gluten. I had COVID19 last week (now testing negative) and was glutened last night (never trust anything labeled gluten-free in a mixed environment). I had my traditional symptoms (sharp gas pains, burping, nausea, stomach ache) but they were accompanied by new, more intense symptoms (muscle cramps all over my body--feet, calves, biceps, neck, shoulders, jaw, abdomen, I'm still sore today and cold sweats). I spent about 6 hours writhing before I felt well enough to get up.  I have been told by my allergist that COVID19 can cause your immune system to hyper react. I'm wondering if that's what happened here.   Has anyone else had experience getting glutened post COVID19? Relatively shortly after recovering from COVID19? Was it a more extreme reaction or same? I can't seem to find any articles on this, so I thought I'd ask the community.  Thank you!
    • Rogol72
      Draft gluten-free ciders… can they be trusted ?

      By Rogol72 · Posted

      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
×
×
  • Create New...