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Anxious about Biopsy (DH)

Kya

By Kya
in Dermatitis Herpetiformis

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Kya Rookie
Kya
Posted

This is my first post, but I have been reading for several years now.  I was diagnosed with Diverticulitis about 5 years ago, but my mother had been telling me about Celiac.

Her father had it (I have no idea how they diagnosed it back then) My mother has Crohn's and possible Celiac, but she is 94 years old and the doctors don't think it is necessary to run more tests, as long as she takes her meds and eats gluten free.  My doctors pretty much poo-pooed  the idea that I might have celiac too.  After I had a sigmoid colectomy  (sp?) , most of my digestive issues went away, except for bloating, and always feeling full.

Anyway, about a year and a half ago, I started getting some very itchy bumps, that I thought were just mosquito bites, but they just kept coming. They would heal, but I would keep getting new ones in almost the same locations. Mostly on the back of my neck, just in and below my hairline. Some looked like pimples, but others looked more like blisters. Then they went away for about 6 months. Now they are back again, in pretty much the same location, except now on my shoulders and thighs. I have been to 4 doctors now, the last one being a dermatologist and he does want to do a biopsy as soon as I have some "active ones" again. My allergist had given me a prednisone injection and the next week oral prednisone. This helped considerably, especially with the itch.  My question is, should I wait a full 2 months before having the biopsy because of the steroids, or should I have it now? The doctor said that he is going to do 2 biopsies, one next to a lesion, and one "on one". I would really like to find out what is going on with these bumps. And I forgot to ask him if it needs to be an actual "blister" or just an itch bump.

Thank you so much for reading all of this and for this wonderful forum!!

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Jmg Mentor
Jmg
Posted
6 hours ago, Kya said:

This is my first post, but I have been reading for several years now

At last, we've been waiting for you :P

6 hours ago, Kya said:

Mostly on the back of my neck, just in and below my hairline. Some looked like pimples, but others looked more like blisters. Then they went away for about 6 months. Now they are back again, in pretty much the same location, except now on my shoulders and thighs.

Just thought I'd say these sound very much like my own. However in my case I don't think these were DH, they cleared up mostly after I removed gluten but I believe the casein in dairy also triggers them. Doc said he thought it seborrhoeic dermatitis for the ones on the scalp. 

I later got an incredibly itchy rash on my elbows, that I think may well have been DH. Luckily it went once I removed some barley malt which had sneaked into my diet.

The reason I'm mentioning this is that if you wind up with a negative result from the biopsy, don't assume that removing gluten won't help, it did in my case.

Anyway, enough rambling from me,  hopefully some of the more experienced forum members will be able to answer your questions!

Best of luck, 

Matt 

 

Kya Rookie
Kya
Posted
  • Author

Lol, thanks so much Matt for your response!! Yes I was planning on going gluten free anyway, but not until after the biopsy. At this point in my life, I really don't have a lot of faith in doctors, so I will do it on my own.;)

Jmg Mentor
Jmg
Posted

Yes, I realised a few years ago that my reverence for the medical profession was a hangover from childhood and that in reality they were pretty much operating at the same level as any other group, with good, bad and mostly indifferent practitioners. In the case of celiac they just don't have a great deal of knowledge, or at least the GP's I've spoken to don't.

this for instance:

21 hours ago, Kya said:

My doctors pretty much poo-pooed  the idea that I might have celiac too. 

doesn't say much given your family history of celiac. 

Anyway, best of luck and hopefully once diagnosis is over you get some relief from gluten free diet. I've found dairy (casein) is a massive culprit when it comes to the spots on my neck and scalp so don't forget to keep an eye on that. 

squirmingitch Veteran
squirmingitch
Posted

Kya, the prednisone really could throw false negatives. I think it's great that the derm seems to realize you need fresh bumps as well as that he is willing to take 1 biopsy as should be done adjacent to an active lesion for dh and 1 biopsy on a lesion. He's covering all contingencies. You need a fresh lesion for the dh biopsy and it doesn't have to be an actual blister, it can be just a bump, but if you get blisters - that would probably be the best to biopsy.

Kya Rookie
Kya
Posted
  • Author

Thank you sooooo much. It will be 2 months the end of November, so hopefully sometime in Dec I will get my biopsy.

Victoria1234 Experienced
Victoria1234
Posted
23 minutes ago, Kya said:

Thank you sooooo much. It will be 2 months the end of November, so hopefully sometime in Dec I will get my biopsy.

I hope your derm is better than mine was! Mine didn't even tell me it meant I had celiac. I found out here on this forum.

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Kya Rookie
Kya
Posted
  • Author

That really does not surprise me! It took 3 different doctors (and 1 year) before i was diagnosed with intestinal entrapment in a surgical hernia. They kept telling me that it was just the pain from my diverticulitis and/or my surgery from removing 13 inches of my colon.  When the surgeon found it she was amazed that I had lived a year like that!

Victoria1234 Experienced
Victoria1234
Posted
16 minutes ago, Kya said:

That really does not surprise me! It took 3 different doctors (and 1 year) before i was diagnosed with intestinal entrapment in a surgical hernia. They kept telling me that it was just the pain from my diverticulitis and/or my surgery from removing 13 inches of my colon.  When the surgeon found it she was amazed that I had lived a year like that!

Omg that's horrible!

my husband had perforated diverticulitis for 3 days before he went to the er. They rushed him into surgery for 8 hours and told us he almost died. They cut out about a foot.  He had a bag for a couple months after that. After the resection he has had 3 hernia operations and it just keeps getting worse.

Kya Rookie
Kya
Posted
  • Author

OMG!!! That is really horrible! 3 hernia operations , I can't imagine! Luckily I didn't need the "bag" because it hadn't ruptured and I had already been on antibiotics for a week before surgery. I really have a hard time trusting the medical professionals . I like to do my own research before I trust them with my body. I will still go gluten free after my biopsy even if it is negative.

Victoria1234 Experienced
Victoria1234
Posted
6 minutes ago, Kya said:

OMG!!! That is really horrible! 3 hernia operations , I can't imagine! Luckily I didn't need the "bag" because it hadn't ruptured and I had already been on antibiotics for a week before surgery. I really have a hard time trusting the medical professionals . I like to do my own research before I trust them with my body. I will still go gluten free after my biopsy even if it is negative.

He had a colonoscopy a year before the event. Which showed no diverticulosis! So it came on fast. How did they know you had diverticulitis?

my husband has another hernia surgery next Wednesday :(

Kya Rookie
Kya
Posted
  • Author

Poor guy! I went to ER with lots of abdominal pain, constipation, and a fever. They ran a few tests then did a CT scan or MRI, I don't remember which. It showed up very well during the scan.

 

Victoria1234 Experienced
Victoria1234
Posted
12 minutes ago, Kya said:

Poor guy! I went to ER with lots of abdominal pain, constipation, and a fever. They ran a few tests then did a CT scan or MRI, I don't remember which. It showed up very well during the scan.

 

He had the same complaints..... but thought it was kidney stones and tried to just live with it. You were much smarter.

squirmingitch Veteran
squirmingitch
Posted

Men are stubborn & don't know what's good for them especially when the wife tells them what's good for them. Ack!

I told my hubs he had appendicitis but would he listen to me? HE blamed it on the turkey leg I had cooked & we BOTH ate. Ummmm, I was just fine so why was he so sick & in so much pain? He wasn't listening. 3 freaking days, 3 FREAKING days later he decides I'm right. He's one very lucky man that his appendix didn't burst on him. They took him straight into surgery from the ER.

Kya Rookie
Kya
Posted
  • Author

Sounds just like mine!!!

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