New Message Board: Treatment

[the sensible celiac]

Today I had a telephone conversation in which I agreed to participate in a drug trial for a proposed new drug intended to treat celiac disease.

I'm expecting to receive further clarification in an email message later today, but as it stands now it appears that I'll be traveling to Baltimore Maryland in early December to begin my participation in this study.

If this drug trial proceeds as it might be hoped that it will, there may eventually be a new prescription drug that would allow people with celiac disease to eat foods that contain gluten.

This is why I have created this new message board, devoted to the subject of treating celiac disease, because it looks like that could become a possibility in the future.

Wouldn't it be nice to be able to eat foods that contain gluten again?  I was 40 some years old when I was diagnosed, so I have a lifetime full of memories of eating bread and regular pasta.

Imagine going to an Italian restaurant without having to worry about what you can eat.

Imagine getting lunch at a sub shop.

To the extent that the terms of my participation in this trial will allow, I'll try to keep people posted on what is going on with this news.

Let's talk about the treatment of celiac disease.  Woo hoo!

[esnyder105]

That would be great!  Are they looking for other volunteers.....

[the sensible celiac]

I'm not sure if they are still looking or not, and my own participation is still up in the air right now.

You can contact them at Parexel International 1-800-296-0052.

As a condition that qualifies you for the study, you must have been diagnosed as a celiac by means of a biopsy, and you must produce a form signed by your doctor that says you were diagnosed by means of a biopsy. They send you the blank form to bring to your doctor.

The difficulty that I am having is that I was diagnosed  when I lived in Northern California at a Kaiser Permanente hospital, but I now live 500 miles away. My current doctor has no record that I was diagnosed by means of a biopsy, and it is *EXTREMELY* difficult to get in contact with a Kaiser doctor from 500 miles away.

As it stands now, I'm told by the Kaiser business office that my records need to be pulled from archival storage in order for my former doctor to see them. Then, if the records do indicate the fact that I was diagnosed by biopsy, as did in fact happen, she needs to contact my local doctor.

Then my local doctor needs to fax the form to Baltimore MD.

It is now Tuesday, I have plane tickets to fly to Baltimore very early on Thursday morning. All of this chart retrieving, doctor reading, doctor to doctor communication, and faxing to Baltimore has to happen within the next 30 hours, or I need to cancel my travel plans and forfeit the non-refundable airfare.

Pressure?  Frustration?  Rage at the bureaucratic indolence of Kaiser Permanente?

Will he end up taking an experimental medication?  Or will he simply be frustrated by an inability to document an actual fact?

Stay tuned for the exciting conclusion of Steve Takes a Fancy New Pill, available only on this station.

[Sharon]

I live near Washington State University in Pullman Washington where a lot of wheat research is carried out.  On Monday the local paper ran quite an extensive article about research that WSU is doing to develop a strain of wheat that doesn't have the problematic gluten proteins.  Apparently it's only some of the proteins, not all, that are a problem.  The researcher is 76 years old and says he expects to see this work completed in his lifetime.

It was a pretty comprehensive article.  They interviewed me as well as a local small wheat farm rancher who has two sons with celiac and covered the illness, its prevalence and its challenges.  They also noted the irony that we celiacs here in the Palouse chuckle at all the time--that we live in the richest wheat producing region of the country and can't eat the local product!

[the sensible celiac]

Today I got the required portions of my medical record from Kaiser Permanente, and my current physician signed off on the document required for my participation in the clinical drug trial.

So early tomorrow morning I'm off to Baltimore. I'll be gone for 4 or 5 days.

More news to follow.

[spokanesweetpea]

I'm definetly interested for the CD eats my skin, burns, makes huge lumps that rise to the surface of the skin and tighten with pressure. The burn and itch throbs so intensely I scratch in my sleep and thats how i get the scabs,scars,and seeping of the wounds. Once drained (like a mosquito bite), they grow again, and drain some more finally they will stop. Totally hurts on the face, I have had them cut off of legs, and back. The pain is something aweful.
I'd even do a shot like incellan if i had to!!!

[Moony]

Have you tried the new drug? Does it look like it helps. Any side-effects?
I would like to now everything. When can it come out on the market? Will it also come to europe and Sweden.
Is it Larazotide acetate you have been tested from Alba therapeutics?

[the sensible celiac]

Have you tried the new drug? Does it look like it helps. Any side-effects?
I would like to now everything. When can it come out on the market? Will it also come to europe and Sweden.
Is it Larazotide acetate you have been tested from Alba therapeutics?

The trial I volunteered for was for Larazotide acetate, but I was disqualified from the trial before it started.  I've never used the drug.

I expect it will be at least 2 more years before we see Larazotide acetate on the market, they are still conducting tests.