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6 months in, still having symptoms...my GI sent me to Dermatologist and Allergist looking for answers.

cnazrael89
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cnazrael89 Enthusiast
cnazrael89
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Posted
6 hours ago, Rogol72 said:

FYI. Here's a case report of SIBO treatment using the functional/integrative approach with herbal antimicrobials and Low Fodmap diet. Though the patient in the report was not Coeliac but had IBS, it was treated successfully.

https://www.spandidos-publications.com/10.3892/ijfn.2021.23#

 

That was a good read! Thank you for that! Feeling hopeful that I can eradicate it after treatment for it! Really restricting my diet right now to starve out those bacteria! Spacing out my meals and no snacking whatsoever as well. (Read that helps to starve out the problematic bacteria). Definitely feeling some hunger but trying to just ignore it temporarily because if I can do this right the first time, maybe I can beat it! Now that I've also identified the probable root cause for SIBO (celiac) and treating my celiac with gluten free diet, I'm decreasing the chance for SIBO reoccurance. That's what I'm hoping anyway! Interestingly, I've been on treatment since Tuesday and I started to feel sick (sweating, headache, sore throat, more fatigued/sleepy). I looked up treatment of SIBO and learned there is a "Die-off" period when you start fighting SIBO which can result in the symptoms I started having. Found that kind of reassuring that I'm killing the overgrown bacteria and my body is mounting up an immune response! 

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Rogol72 Collaborator
Rogol72
Posted
2 hours ago, cnazrael89 said:

That was a good read! Thank you for that! Feeling hopeful that I can eradicate it after treatment for it! Really restricting my diet right now to starve out those bacteria! Spacing out my meals and no snacking whatsoever as well. (Read that helps to starve out the problematic bacteria). Definitely feeling some hunger but trying to just ignore it temporarily because if I can do this right the first time, maybe I can beat it! Now that I've also identified the probable root cause for SIBO (celiac) and treating my celiac with gluten free diet, I'm decreasing the chance for SIBO reoccurance. That's what I'm hoping anyway! Interestingly, I've been on treatment since Tuesday and I started to feel sick (sweating, headache, sore throat, more fatigued/sleepy). I looked up treatment of SIBO and learned there is a "Die-off" period when you start fighting SIBO which can result in the symptoms I started having. Found that kind of reassuring that I'm killing the overgrown bacteria and my body is mounting up an immune response! 

Sounds like you're on the right path. Keep us posted on how the SIBO treatment works out for you.

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bookmuse Newbie
bookmuse
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On 5/4/2023 at 1:33 PM, Scott Adams said:

You can look this up, but the biopsy for DH needs to be done directly next to a blister. If they took a sample on a clear patch of skin that was totally unaffected by the rash, I believe they were not following the protocol for a DH biopsy.

This is true but many dermatologists never learn how to do a DH biopsy. I had a dermatologist do one here in CA and she did it directly on the lesion despite my sending her the research paper on the correct way to do it (since it's so specific and unusual). She was insulted, I'm sure. I also needed stitches because she hit a vein!  Then when the results came back she told me my 'rash' was consistent with flea bites! I didn't even have any pets at the time and definitely no fleas. I have since found a dermatologist who learned how to do it and I just need to be brave enough to eat some gluten to cause a flare up to get the diagnosis. 

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Guest 648
Guest 648
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Every punch biopsy I've ever has always required 1 stitch.

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HoneyBee411 Newbie
HoneyBee411
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On 5/4/2023 at 2:14 PM, Scott Adams said:

It never ceases to amaze me why some in the medical profession can still be so ignorant, or worse yet, insolent (hard to say which here, but if you came into the office wanting to be tested for DH, and they then ignored you and tested you for something else, it could be the latter). 

Again, I'm obviously no dermatologist or doctor, but my DH spot looked exactly like yours, but I only had it on the back of my hand in a 1.5x1.5 inch area on the lower knuckle of my right thumb. Ironically I got a severe sunburn on the back or my hands while fishing at a 7,500+ft. mountain lake, sunburn to the point where the back of each hand became one giant blister, and the DH never came back. There is some research that indicates that UV treatments help it, at least I was told that back in the late 90's, but I definitely don't recommend such a sunburn to anyone. It would be interesting if lesser levels of UV could help it.

Exactly this, Scott. I was just diagnosed with Celiac disease after my dermatologist took a biopsy just below my elbow (punch biopsy). She said DH looks very specific under a microscope. Not sure at all how unaffected skin could tell them anything. I had serology testing 18 months ago that indicated celiac, along with a family history. However, my GI scopes and biopsies were negative. I have these skin breakouts about twice a year and they are super painful. When I went to the dermatologist in 2018, of course it was cleared up by the time I got in to see her. She said to come back during active breakout so they could biopsy the site. She was going to do another biopsy to rule out DH but when she learned I had the positive serology, she said there was no need, and no question. So...I've been gluten free for exactly one week today (and feel like gnawing my fingers, I'm so hungry.)

To the OP, I highly recommend getting a new dermatologist.

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