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Ulcerative Jejunitis (extreme form of Coeliac Disease)

Hey Team. Just received a letter from my GI Specialist after the Pill Cam, telling me that 'quite a few' ulcers have been found in the Jejunum, and I am being booked in to have biopsies and tested for Ulcerative Jejunitis. He says this is an 'extreme form of coeliac disease' that responds only to steroids? I haven't had the biopsies or been diagnosed yet, but like to be informed before-hand, and want to know if you have had experience/diagnosed with this and any info that might be helpful.

Thanks in advance.

Rog :0)
 
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Thanks, Catherine. Unfortunately a gluten free, lactose & fructose free diet makes no difference to my chronic symptoms, which appear to have been uncontrolled for around 20 years, leading to ulcers in the Jejunum (now uncontrolled celiac?) The only thing so far that has worked has been Pred, of which I was on 65 mg/daily for around 18 months and were symptom free after day 3 (after 20 years of chronic health). Will wait for the biopsies, and then hope for a safer alternative than the Pred, or will pulse Pred with other meds. When not on Pred, require around 50 Loperamide per day, plus Omepresole (GROD/open Nissen Fundoplication in 1995) plus several other meds. To be honest, I am pretty scared of being diagnosed with Ulcerative Jejunitis, as it appears serious with a much limited life span, especially if left uncontrolled for 20 - 25 years. Look forward to hearing from anyone who has experience with this too :0)


Hoping the gluten free diet works well for you and your need to steroids lessens over time.
 

Catherine

Moderator
That's not good.

So you already 100% gluten. Is your household 100% gluten free. What about your wife lipstick etc?

My daughter's boyfriend has Coeliac Disease. He has been hospitalized and been on IV steroids which works very well but they think something else is going on as well as steroids should not be needed.
 
Yeah, apparently once it has ulcerated the Jejunum, it is beyond control with diet, and only responds to steroids. It is a 'very' rare development of Celiac. Apparently has a very high percentage of cancer ( up to 90%?) and a 50% death rate beyond 5 years from diagnosis. Really want to find out from anyone who has this rare disease :0)

That's not good.

So you already 100% gluten. Is your household 100% gluten free. What about your wife lipstick etc?

My daughter's boyfriend has Coeliac Disease. He has been hospitalized and been on IV steroids which works very well but they think something else is going on as well as steroids should not be needed.
 
Thank you :0)

Strangely, it was through my (adult) son being tested and biopsy-diagnosed with celiac, that has raised interest by my GI specialist, as celiac is strongly genetic.

I am so upset that so many of my doctors and specialists continued to tell me I had IBS. It wasn't until I was literally dying around 2 years ago, that my own doctor put me on Pred, and i was in complete remission in 3 days (after 25+ years), and now they have found the ulcers. (IBS does not respond to Pred, and IBS does not cause ulcers). I guess it 'is what it is', but wish I had been treated seriously decades ago, would have had a much better quality life :0)


This article np mentions the use of Azaphrione. page 6

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166801/

This is one I found about a child.

http://www.biomedcentral.com/1471-230X/14/29
 

Catherine

Moderator
Do have a dx of celiac disease?

If you had started a gluten free diet prior to testing you would have negative anyway.
 
Biopsies of the duodenal in next couple of months, then biopsy the ulcers. Not gluten free diet at present, nor steroids, as need to be in a flare for the tests :0)

Do have a dx of celiac disease?

If you had started a gluten free diet prior to testing you would have negative anyway.
 

Catherine

Moderator
Thank you :0)

I am so upset that so many of my doctors and specialists continued to tell me I had IBS. It wasn't until I was literally dying around 2 years ago, that my own doctor put me on Pred, and i was in complete remission in 3 days (after 25+ years), and now they have found the ulcers. (IBS does not respond to Pred, and IBS does not cause ulcers). I guess it 'is what it is', but wish I had been treated seriously decades ago, would have had a much better quality life :0)
I also have dx IBS from 25 years ago. It was only after my daughter was dx with Crohn's Disease that any testing was done. I have chronic gastritis which causes me heartburn which goes a way on a low gluten diet. My tolerance for gluten is getting lower by the day. Maybe I should be gluten free.
 

Lady Organic

Moderator
Staff member
Dont know if this could apply to you, but definately worth a try... :

http://file.scirp.org/Html/5-2700516_26626.htm

''Cross-Reaction between Gliadin and Different Food and Tissue Antigens''

ABSTRACT:
A subgroup of coeliac disease patients continues to experience symptoms even on a gluten-free diet (GFD). We attempted to determine whether these symptoms could be due to either cross-contamination with gluten-containing foods or cross-reactivity between α-gliadin and non-gluten foods consumed on a GFD. We measured the reactivity of affinity-purified polyclonal and monoclonal α-gliadin 33-mer peptide antibodies against gliadin and additional food antigens commonly consumed by patients on a GFD using ELISA and dot-blot. We also examined the immune reactivity of these antibodies with various tissue antigens. We observed significant immune reactivity when these antibodies were applied to cow’s milk, milk chocolate, milk butyrophilin, whey protein, casein, yeast, oats, corn, millet, instant coffee and rice. To investigate whether there was cross-reactivity between α-gliadin antibody and different tissue antigens, we measured the degree to which this antibody bound to these antigens. The most significant binding occurred with asialoganglioside, hepatocyte, glutamic acid decarboxylase 65, adrenal 21-hydroxylase, and various neural antigens. The specificity of anti-α-gliadin binding to different food and tissue antigens was demonstrated by absorption and inhibition studies. We also observed significant cross-reactivity between α-gliadin 33-mer and various food antigens, but some of these reactions were associated with the contamination of non-gluten foods with traces of gluten. The consumption of cross-reactive foods as well as gluten-contaminated foods may be responsible for the continuing symptoms presented by a subgroup of patients with coeliac disease. The lack of response of some CD patients may also be due to antibody cross-reactivity with non-gliadin foods. These should then be treated as gluten-like peptides and should also be excluded from the diet when the GFD seems to fail.
 
Any news yet, Rev-Rog?

Like Catherine said, my son also has Celiac but has been fine since eliminating gluten. I have read of cases where that's not enough though andsteroids are required. Unfortunately, I haven't kept up with the Celiac research since my son is doing well.

What does your diet look like now?
 
Hi Mehita

Thank you so much for your post/concern :0)

Things have taken a bit of a turn for the worse. I had over 150 Temporal Lobe Seizures during a 4 hour period a couple of days ago (was woken up having them), so are just trying to recover from them. Have an MRI this Wed.

I am still waiting for the appointment to have biopsies, and have to be on a full gluten diet until then. However, I have been gluten free previously, and it made no difference to my symptoms. However, I now realize that it has to be 100% gluten free, and the only real way to do this is to have the whole household gluten free. Having said that, if I am indeed Gluten intolerant, it has been left untreated for the last 20 years or more, and has (probably) resulted in the ulceration of my Jejunum, and therefore a gluten free diet along will not allow this to heal ( as it is scarred/diseased).

When I am in a flare, I am both lactose and fructose intolerant - and pretty much allergic to all food :0) When on Pred, I can eat or drink anything and have zero symptoms.

I am really 'up in the air' at this stage. I don't know what the diagnosis will be, but I do know I have GORD, Epilepsy and ulcerated Jejunum (as some other psych stuff to keep life interesting).

So at the moment it is just 'wait and see'.

Pretty annoying to have had the seizures though - and I have one hell of a headache :0(


Any news yet, Rev-Rog?

Like Catherine said, my son also has Celiac but has been fine since eliminating gluten. I have read of cases where that's not enough though andsteroids are required. Unfortunately, I haven't kept up with the Celiac research since my son is doing well.

What does your diet look like now?
 
So sorry to hear that. I wish I had words of wisdom, but I guess I can only offer words of support. I hope the news is better than expected. Please keep us posted.
 
Hello! Did you start treatment for your jejunitis? If so, what treatment are you undergoing, and has it worked? I have also recently been diagnosed. My doctor has had me on Remicade IV treatments since July, but they are not working. He is now referring me to the Cleveland Clinic in hopes of a cure.

Hope you're doing well! I would love to connect with someone else who also has this problem.

What were your symptoms? Mine are upper left abdominal pain that has been getting worse and now wakes me up multiple times a night, nausea (feels like morning sickness all day), fatigue, and horrible bloating when I eat anything other than liquids. I look 9 months pregnant, and I've had to buy a whole new wardrobe. It's very depressing, but I try to keep going and working hard at my job, home and farm.
 
Hey Team

Sorry it's been a while, and I haven't been able to reply to the PM's. Epilepsy got pretty bad, but appear to be under control now.

Although the neuro specialist's disagree with my thoughts about what caused the epilepsy, here's what I think.

After a constant battle over 20 years since I had abdo surgery - in 2014 I was finally allowed to be placed on 65mg daily Pred for my IBD, and was on this high dose for around 2 years. From the third day of Pred, all my IBD symptoms immediately stopped - after what was pretty much a 20 year flare!

It was after a year of being on Pred that my seizures started and also at this time was placed on some grunty anti-seizure meds. My IBD was fine (due to Pred), but my Epilepsy just got worse and worse. (I take several other meds, and I am sure this combination caused my seizures).

The anti-seizure meds I have been on for 18 months were terrible, worse even than the grand-mal seizures! I have a three month period of time with no memory of it, basically since Jan to Mar 2016. It also caused severe mood changes that I have no knowledge off, but that caused quite some damage to my relationship with my beautiful wife, but whom has also realized it was a side-effect of the medication.

I am off the Pred, and my IBD is returning. But I have also weaned myself off the 800mg Lomatrogine (anti-seizure meds), and have had no seizures for three weeks.

So, I am waiting to enter a 'full' flare and then my gastro specialist will admit me to hospital for further dx and treatment with something safer than Pred.

At this stage I am still undiagnosed.

The good thing is that two years of Pred has brought a lot of healing to my bowels, and it is taking a while to get back into a flare, although my abdo is in constant mild pain and I have diarrhea constantly.

I was trying to induce a flare by eating and drinking things that I know used to cause a bad reaction (lactose, sugar, coffee, spices etc..) but think it best to wait for my flare to return naturally, as I don't want to be admitted and not be in a 'real' flare and therefore not be dx'd correctly.

C'est la vie

Rog :)
 
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