Ulcers of the Proximal Jejunum / Ulcerative Jejunitis / Refractory Celiac - PLEASE help!

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Rev-Rog
New Member


Date Joined Sep 2015
Total Posts : 3
   Posted 9/7/2015 6:49 PM (GMT -7)   
Hi

This is a bit of a read, but please take a few minutes to do so. Hopefully you might be able to help or encourage. Both of which will be greatly appreciated :0)

I'm new to this forum (was on the Crohn's Disease forum many years ago) and "really need help/input" from anyone who has/had ulcers of the Proximal Jejunum &/or Ulcerative Jejunitis (refractory/unresponsive celiac with ulcerated Jejunum).

I have a long history of chronic digestive illness/GORD/OCPD/Boarderline/Epilepsy, with my first endoscopy around 41 years ago as a child - it was pretty horrible back then, they just gave you a throat lozenger and then pushed the tube down. I remember the specialist commenting that they had this child among all the other 'old' men who were having endoscopies that day too.

I had open surgery 20 years ago (nissen fundoplication) and have been chronically ill since/and before then. Three GI specialists told me I had IBS / D, and there was nothing more they could do for me. So, literally dying around 3 years ago, I convinced my doctor to put me on Prednisone, of which he did (65mg) - his reasoning was that since I was dying, the side effects of Pred is better than death :0)

For the first time in my life - and within 3 days - I was in full remission, gained 20kg's in the next 18 months - with zero symptoms while on 65mg Pred. IBS does not respond to Pred, neither does it cause uclers in the small intestine - so finally the GI Specialist's realized it isn't IBS! This honestly pi##ed the hell out of me, because why didn't they consider different options rather than IBS decades ago? I would have had a much happier life without the horrible daily pain and other symptoms.

I've since had to stop Pred for Pill Cam, and endoscopies (I'm getting very ill again). Pill cam has shown 'quite a few' linear ulcers of the proximal Jejunum. I am now waiting to have biopsies to test for Ulcerative Jejunitis, which I understand to be a refractory celiac disease with serious implications/high mortality rate?

From what I can understand, this is quite a rare form of Celiac, and as such there is not a lot of credible - and understandable articles on the internet??? I have downloaded a few peer-reviewed documents, and viewed all Mayo Clinic has to offer. But these are limited, and quite bleak in their outlook :0(

I believe knowledge is power, and I want to go into this next stage of my diagnosis informed and prepared - regardless if the ulcerations are celiac or something else.

In the other forums I belong to (Crohn's and Epilepsy) I've asked the same question as above, and have received several answers, but none from people who actually 'have' Ulcerative Jejunitis - or anyone who also has/had linear ulcers of the proximal jejunum.

Really hoping someone with this condition/ulcers of the Jejunum - can help me please - or if you know anyone on this forum who has this condition - or any archived posts - please pass this on to them, or let me know :0)

Also appreciate input from anyone with knowledge on this illness/topic - please :0)

Thanks in advance.

Rog :0)

Post Edited (Rev-Rog) : 9/9/2015 5:54:10 PM (GMT-6)


cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 151
   Posted 9/10/2015 8:55 AM (GMT -7)   
If the results come back positive, will you go on a gluten free diet? Typically, a gluten free diet (if you have celiac disease) can reverse damage. Many people with CD (a majority) who have been given a diagnosis of refractory CD find that they really have not been dietary compliant. Gluten can be hidden in prescription medications, supplements and the drug manufacturers are not bound by the same FDA requirements as foods. I must always call when filling or refilling a prescription as formulations change.

Have you had a celiac blood panel? Here are the tests:


-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests


-endoscopic biopsy - make sure at least 6 samples are taken

Did they test biopsies for CD?

I wish you well!

Rev-Rog
New Member


Date Joined Sep 2015
Total Posts : 3
   Posted 9/10/2015 4:40 PM (GMT -7)   
Bad start to the day. Woke up having Olfactory Temporal Lobe Seizures/Aura's, around 150 in total over the next 4 hours. Just left with a headache. Hopefully all sorted now.

I made the mistake of sharing this on Facebook, and "everyday" people do not understand as they do on this forum, and my mother in law went absolutely stupid/panicked about it (she lives around 3 hours away, but was threatening to call an ambulance etc...), which made me more upset than the seizures - even though I said I am fine and do not need help!

As we all know, sometimes we just need to share with others about our challenges (a burden shared is a burden halved), we don't want advice or decisions made on our own behalf - because sometimes there are no answers or healing, right? :0) eyes

Post Edited (Rev-Rog) : 9/10/2015 11:57:13 PM (GMT-6)

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