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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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175 replies to this topic

#151 mamat78

 
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Posted 18 June 2013 - 08:16 PM

Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 


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#152 frieze

 
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Posted 19 June 2013 - 04:21 AM

the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!


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#153 mamat78

 
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Posted 19 June 2013 - 05:33 PM

the jugular so close to the ear may be the cause of pulsatile tinnitus.  The fact that you didn't stop the supplement at least 4/5 days before testing, negates that testing.  large doses of B12 appear to be in your future!

I would have stopped but I actually only asked for the B12 blood test on my way to the clinic prior to my CT bloodwork. I am going to increase my B12 fthrough supplements and see if I notice a difference of any kind. 

 

BTW I think I ate non gluten free soy sauce last night. I broke out this morning in various itchy spots. Holding onto hope that they dont progress to a full blown DH breakout.


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#154 tinpins

 
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Posted 20 June 2013 - 02:56 PM

This is well worth watching ... "Gluten and Autoimmunity Explained in 20 Minutes"

 


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"If you're going through hell, keep going" - Winston Churchill

 

 


#155 squirmingitch

 
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Posted 20 June 2013 - 05:03 PM

That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.co...rders-research/


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#156 tinpins

 
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Posted 20 June 2013 - 05:26 PM

That is EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thank you!

 

And this really should be posted in this forum so the rest of the celiac.com community can benefit from it:

http://www.celiac.co...rders-research/

 

Can you do that please and thank you : ) You know where it belongs  : )


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"If you're going through hell, keep going" - Winston Churchill

 

 


#157 squirmingitch

 
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Posted 20 June 2013 - 05:54 PM

Okay. It's done! Here:

http://www.celiac.co...-in-20-minutes/


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#158 tinpins

 
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Posted 21 June 2013 - 03:47 AM

 

Thanks  :)


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"If you're going through hell, keep going" - Winston Churchill

 

 


#159 squirmingitch

 
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Posted 21 June 2013 - 09:23 AM

YVW.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#160 tinpins

 
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Posted 21 June 2013 - 04:50 PM

YVW.

 

Thank you ... and here's another video that is worthwhile watching.

I'll post this over on the other forum too.

 

Second Opinion: Celiac Disease

 


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"If you're going through hell, keep going" - Winston Churchill

 

 


#161 sisterlynr

 
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Posted 22 June 2013 - 03:41 AM

Well, I have had a super busy week and lost track of the postings! Soon, but not soon enough, I will be on summer holidays. For now though, its report cards and the chaos of the end of a school year! 

Anyways, CT scan results:

 

-mild cerebral atrophy...doesnt sound good to me, especially becuase I am only 35! Any insight on this would be appreciated! 1 thing I do know is that it can happen prematurely due to lack of B12 and can regenerate. My B12 results..342...Doc says 200 is severe B12 deficiency and anythong over 400 is normal, 800 being a good, average number...mine is borderline deficient. That was tested with supplements in my system. 

 

ok back to CT results: 

    -enlarged jugular bulb

    -rt jugular bulb diverticulum...basically no bone left inbetween the jugular bulb and the middle ear.

 

any insight??? So weird, so rare and so confusing! 

 

 

I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#162 tinpins

 
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Posted 22 June 2013 - 04:01 AM

I had a bit of shrinkage show on my brain MRI.  Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary.  He also mentioned MS but . . . hey, I AM NOT a doctor.  You should ask him to explain every detail of your scans.

 

I tell each doctor I need an explanation in 'normal' terms.   :rolleyes:   We go line by line and until I'm like . .  ok, I understand.  I had an MRI show that all of my brain was functioning at 1/2 level.  When the doctor told me that, I reached over and slapped his arm and said, "Right . . . "  as I laughed at him.  He looked at me and said, "I'm serious but we won't worry about that, it could be a machine malfunction."   

 

Take charge of your patient records. . . . ask questions ! ! !

 

As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really interesting is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman


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"If you're going through hell, keep going" - Winston Churchill

 

 


#163 sisterlynr

 
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Posted 22 June 2013 - 04:37 AM

As one of the guests pointed out in the Second Opinion video I posted above ... this is the chameleon of diseases. And it manifests itself in many different ways. We are lucky if we find a doctor who has the time to explain things and I always, always get copies of my medical notes from each visit. I keep a file of my own medical history. That comes from going back to the same doctor/s and having my records gone missing!

 

The other thing I'm finding really helpful is the book my dietitian recommended:

 

"How doctors think" by Jerome Groopman

 

 

I will not accept a doctor not taking the time to explain to me.  I am paying the bill (or my ins is) and I've never met one that would not sit down with me.  I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report.

 

I worked for 6 years at a hospital, 3 years with a group of doctors in an IPA, 7 years in politics . . . when you have met President Reagan, VP Quayle, many US Senators (worked for one) and of course all the state politicians.  I am not intimidated by nary a person.   :)   I write this with a HUGE smile on my face.  I interviewed a lady for IT at the IPA and was really impressed with her CV.  The president (MD) of our group just laughed at me.  He said, "What impresses you about her? I want to know as no one has bowled you over yet."   We had a good laugh about that one.

 

Doctors are normal people that have chosen to commit to caring for others. . .  BTW, I was trying to encourage Mamat78 to ask questions.  It is our body, our money and we need educated answers from our caregivers.    :D


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#164 tinpins

 
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Posted 22 June 2013 - 05:16 AM

I think I need to clarify my statement in post # 162 from my perspective. I've nursed in three different countries and I don't live in the US. It has taken me 40 years to get a diagnosis. I have simply shared my journey and my experience/findings. 


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"If you're going through hell, keep going" - Winston Churchill

 

 


#165 tinpins

 
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Posted 22 June 2013 - 06:33 AM

Here's another excellent video by Joe Rignola:

 

http://theglutencoac...fvideo3a813.php


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"If you're going through hell, keep going" - Winston Churchill

 

 





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