Linear IGA Bullous Dermatosis

[bunnie]

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[nicolespeanut]

Bunnie,

We both have very different experiences with the disease.  When I first went to a dermatologist I was also suffering with digestive issues.  Perhaps it was a coincidence.  I did not test positive for celiac but do carry the main gene that predisposes me to gluten sensitivity, microscopic colitis and other autoimmune syndromes.  That is all I know.  I also know that I tried gf diet for 6 months but later learned that you need to be off gluten for over a year for it to show any skin improvement.  These are things that I have experienced.

We are all here to help eachother understand the possibility of this disease.  We can all share suggestions and ideas and keep the conversation going.  It is hard for me to rule out anything.  The doctors know what suppresses it for most people and we are all thankful for that.  But they do not know how to help the body get over the disease. 

Nicole

[bunnie]

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[nicolespeanut]

Bunnie,
You have much to share and I appreciate your always being open and honest.  You have had a terrible time of it.  I hope I am not upsetting you in any way when I ask questions that may seem unrelated to the condition.  I too have had many of the symptoms that you mention and when the disease was at its worst the doctors told me that the meds only disguise the disease and that the underlining problem is still there.  My second opionion told me that GF is worth a shot.  He gave me hope that I could help my body get better.  At 30, with three young children I needed to be well.  That is how I learned about diet and skin.  I know that eating gluten causes a very similar reaction in people who have a sensitivity (DH).  Their bodies are perfectly normal without the gluten.  Why couldn't that be the case with Linear IgA?  Perhaps another "toxin" that the body is attacking.
Nicole

[bunnie]

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[nicolespeanut]

So there are two different types of IgA that are detected which tell the blistering diseases apart?  It is not IgA in a different formation?  They are actually completely different IgA altogether?  I always thought that the proteins the IgA reacted to were different.  Not the actual IgA.  I will check with my doctor to learn more about that.

You have been through so much.  You are an expert on your condition.  I would never suggest anything to you regarding your care or anyone else's for that matter.  I am sharing my story and have been for a few years.  I want to talk to people and hear how they are dealing with it.  I would never and have never advised people on any medical choices.  I am not a doctor and do not give out medical advice.  I would never tell people that they shouldn't take medication or to try alternative treatment.  People make their own decisions.  This is a site to bring people together in a positive way.

 

[bunnie]

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[nicolespeanut]

I remember a woman on the site a couple of years back who mentioned Dr. Zone and if I remember correctly, she was a patient of his. It is curious about the IgA.  I will try and read more about it and perhaps this will shed some light on my unshakeable idea of the food and gut link. From the information  you are sharing, it sounds like Dr.Zone discovered two different types of Linear IgA bullous dermatosis which can be differentiated using a special immunoelectron device?  Is this recent?  Or am I simply reading your information wrong?  Could it be that we both have different types of Linear IgA?

Like you, hormones have been on my mind as triggers.  Be it stress hormone or estrogen or whatever.  I can avoid triggers that bother me -- sun and friction being the most obvious to me.  But the hormones, how do you avoid those?  I understand that you need to make sure you are detoxifying your body from hormones as well as processed foods and chemicals,etc from time to time.  In a sense help your body cleanse itself.  Some bodies are just better at it than others.   

When I get the random blister now, I can try and guess what might have caused it but it is impossible unless a tag was irritating my skin or something obvious like that.  It helps so much to hear what others think and toss around ideas.  I have never heard that there are two different types of Linear Iga.   

[bunnie]

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[Blue Bird]

Bunnie> Why sure, sweetie. *LOL* is short for "Laughs out loud."
Best wishes for Nicolespeanut and Bunnie's good health, good fortune and happiness

[bunnie]

1

[bunnie]

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[nicolespeanut]

Bunnie,

I wonder why you needed the same treatment when you have hypergammaglobulins.  Was there a point that you were hypo instead?  I am sorry for your condition.  I have lived with my own Mom suffering from misdiagnosis and incorrect treatment for my entire life.  I suppose that is one of the reasons I was/am so skeptical of medication in the first place. 

Please share more of your experience when you get a chance.
Nicole

[bunnie]

1

[bunnie]

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[nicolespeanut]

Bunnie,

I hope the IV's worked better for you.  This is not typical treatment for Linear IgA and only necessary because of all of your immunosupressant treatment.  Correct?

I am very interested to know if you took meds during you 19 year remission and what was going on with your body at the time -- did you feel well and unexpectedly get sick again?  Was your second experience worse than your first? 

Thanks again for sharing,
Nicole   

[bunnie]

1

[nicolespeanut]

Oh Bunnie, it is such a nightmare for you.  I am so sorry to hear the horror.  It seems to make sense that as one gets older, the system isn't as strong and the likelihood of remission is low.  It shocks me that you were on the IV's for the Linear IgA since it seems so contradictory.  But as you noted, this is heavy scientific stuff that I know nothing about. 

If I can ask you seriously for your opinion about your experience.  Would you have taken meds perhaps to surpress your initial second outbreak had you known that could happen?  What scares me so much about your story is that your initial outbreak went into remission on its own and you never took meds.  Only to find out 19 years later that it was back and so severe and horrible.  Could ongoing medication have prevented that?  What do you think? 

I am told by my doctors that there is nothing "wrong" with meexcept for the disease.  My general practitioner wasn't so sure which is why she ran every possible test she could think of which thankfully all were normal.  Why would I be blistered up if nothing was "wrong" with me?  What does that mean exactly?  It is so hard to trust anyone when there is so little information.

I am curious about the bone marrow information.

Thanks again for sharing.
Nicole

[bunnie]

1

[nicolespeanut]

Thank you again Bunnie for sharing and helping me to understand the complexities of the disease and potential treatments.

I came across a study regarding a man suffering from "chronic myeloic leukaemia" who underwent an "allogenic bone marrow transplant" which put him in complete remission from the cancer (this treatment followed "total body irradiation" and chemotherapy).  Ten months later he was diagnosed with Linear IgA Bullous Dermatosis.  He responded well to Dapsone which he took along with his preliminary meds.   This study reports a "possible relationship between LAD and bone marrow transplantation in an immunosuppressed patient."

If you are interested in reading this article let me know.

Fondly,
Nicole