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11-12-2014, 10:24 AM   #1
kbrad
 
Join Date: Nov 2014
Location: Portland, Tennessee
My story

I am a married male age 58 and I was diagnosed with dermatitis herpetiformis (now I am told that is celiac) at 35 years of age by way of skin biopsies.

I have been on 10 mg of dapsone a day for this period along with following a gluten free diet.

It was pretty easy for my dermatologist to make the decision to biopsy
when I told him I have two sisters with celiac desease .

I have not had any stomach trouble in my life other than occassional
constipation.

In July of 2013 after lunch at my Moms on a Sunday afternoon my stomach
started grumbling,gurgling,churning.
I did not think a lot about it other than I may have just eaten too much which I am good at.
The next morning my stomach was still grumbling and I ate my normal
breakfast of two eggs fried in butter and a couple pieces of bacon and when I had to go to the bathroom it was just a little blood a small amount of mucous . I went on like this in the bathroom three or four times a day for three days.Never sick ,never any cramps and still had my normal good appetite.

I went to my Dr. and he sent me to a Gastro spec. . He wanted to put me
in the hospital right now but I felt I did not need to be there. He checked me for iron def. and I was slightly low , he still wanted me in there and this was Friday.

I had a colonoscopy on Monday and his diagnosis at point was ischemic
colitis but was sending biopsies to be looked at. In the mean time he put me on flagyl and cipro. When he got the results they showed crohns. He wanted to make sure so he had them to look again and still showed crohns.

With that diagnosis he prescribed prednisone and Pentasa .

I have tried Prednisone along with Pentasa , Humira along with Lialda.Had no improvement with either.

I have taken Prednisone as prescribed alone a time or two and it helped while I was taking it and for maybe a week after then the bleeding started again.

I am now seeing Dr. Michael Bernui D.O. in Hendersonville Tn. who deals with a lot of autoimmune diseases and have just had my first LDA treatment or Low dose allergen about three weeks ago and treatment for parasites.No improvement with that yet.

I am sure that my condition is not as bad as many out there but this thing has drastically altered the active lifestyle I had and knocked me down physically and mentally.

I don't know how I could ever hold a full time job these days.
My God has to have put things in place for me to be able to retire for the most part and I thank him for that.

God is good , all of the time . Remember he gave his son not just to die for us and our sins but he was beaten to a pulp before being nailed to the cross.
Thanks

Last edited by Lisa; 11-14-2014 at 02:58 PM. Reason: cleaned up formatting to make easier to read
11-12-2014, 01:53 PM   #2
nogutsnoglory
Moderator
 
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Join Date: Sep 2009
Location: New York

My Support Groups:
Sorry the drugs haven't worked for you but there are other biologics and immunosuppressive meds that may help. Time and trialing things will help you find the best route.
11-14-2014, 02:06 PM   #3
Ali29
Senior Member
 
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Join Date: Mar 2014
Location: Texas

My Support Groups:
Welcome - there is a wealth of information on this forum which I am so greatful! The members are wonderful and very supportive. I have joined several forums - from your post I see your faith - there is one group you might want to check out also. The Prayer and Spiritual Support Group.

Good luck, hopefully you will start improving soon!!
__________________
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
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