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Biopsy Results In...

CrazyforCandles

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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!

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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.

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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.

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