Mast Cell Disorders Forum - Update on first GI and Dermatolgoist visits & 24-hr Urine Test

Ladybug

Ex Member

Update on first GI and Dermatolgoist visits & 24-hr Urine Test
02/23/14 at 09:25:01

Hi everyone,

I am trying to catch up on the boards as I have been on emotional overload and trying to pull research together before my first visits to GI and gastroenterologist doctors. Both went well:

Gastroenterologist: My doctor was amazing. I'll post his info in the doctor section. He has work with mast cell patients, but not MCAS. He received my packet of info with great interest and will make sure that the lab uses the proper stains and that the proper meds are used on me for the procedure. He will perform an endoscopy and colonoscopy on March 4.

Dermatologist: My doctor has other mast cell patients, not familiar with MCAS, took two biopsies, applied stitches, he assured me that he would make sure that the lab uses the correct stains after I told him that one of our mast cell pioneer doctors had problems with a lab not using the right stains even after he asked him to use them; that what tipped him off was that the report came back within a week instead of the 3 week marker. I felt better after he said that he would do that. I have about a 2.5 week wait before hearing anything.

24-Hr Urine testing: I wrote a letter to my allergist asking him to do a 24-hour testing for 11 Beta-Prostaglandin F2 Alpha, Prostaglandins, and N-Methythistamine. His office called that the order was ready! I picked up my order and went to Quest.

Quest visit: They never heard of these tests. However, I was prepared with Mayo Clinic printouts and told them that I needed the 24-hr urine, which would need to be chilled and sent to the Mayo Clinic because they (Quest) did not run tests for these. It was lunchtime and that gal was open about not knowing what to do and asked that she call me later once she gathered all her information to ensure everything is done correctly.

I showed up later and she had printouts for me, returned my original printouts from the Mayo Clinic website, and my pee jug and little collection hat for the toilet, and instructions. I was impressed. I will also buy a cheap suitcase tag to attach to the handle with words "Keep chilled or iced" and will also write that on the container. I will keep it on ice when I bring it to them. Now . . .

Question: Do I need to wait for a flair before I do this? Cheesy

I'll do whatever I need to do in order to ensure this is done correctly. I hate "do-overs!"

Thank you!

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Ladybug Ex Member	Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test Reply #1 - 02/24/14 at 17:00:28 My dermatologist just left a message on my phone that the biopsies from two different growths were normal. He said that they used the Giemsa stain. Would that be sufficient to cover it all or should they have used other staining as well? Thanks.
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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #2 - 02/24/14 at 17:15:32

My allergist filled out a lab form for me to get a 24-hour urine for N-Methylhistamine, 11 Beta-Prostaglandin F2 Alpha, Prostaglandins (PG D2). These were handwritten at the bottom of the lab form.

I called Tricare Prime (United Health) this morning to see if they would cover them. They said that the doctor needs to submit it for an authorization. The office may have done this, but I don't know and haven't heard back from the office yet.

When I went to the Mayo website, they mention that one of these (maybe two of these) are not FDA approved. I suspect that those would NOT be covered? Have you come across anyone dealing with their insurance to cover these urine tests? Any way to get around?

Thank you!

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Ladybug

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Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #3 - 02/27/14 at 16:13:21

I completed my 24-hour urine specimen. I kept the jug in the freezer and bagged it this morning before leaving for the lab. I even got one of those bright orange plastic tapes that construction people use to tie on the ends of things and I wrote on it "Keep refrigerated or on ice" on both ends of it after tying it to the handle.

When I dropped it off, a young lady put on gloves and I saw her reading the plastic tapes, which was good. I figured that if there is any delay, my frozen rock of urine should be okay for a while.

I forgot to ask, does anyone know how long it takes to get tests back?

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sarahkay1111 Guiding Light Offline I Love YaBB 2! Posts: 136	Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test Reply #4 - 02/28/14 at 07:19:04 Hi Ladybug, It takes about 1 week to get the results (at least from the Mayo Clinic). My insurance pays for all of these tests (5 total now). Good luck and I hope you get some answers! Sarah
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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #5 - 02/28/14 at 21:06:06

sarahkay1111 wrote on 02/28/14 at 07:19:04:

Hi Ladybug,

It takes about 1 week to get the results (at least from the Mayo Clinic). My insurance pays for all of these tests (5 total now). Good luck and I hope you get some answers! Sarah

Thank you, Sarah. I am anxious to get a lot of these tests behind me. In addition to working full time, I have been spending an easy 15-20 hours a week researching, printing articles out, etc. I am anxious to hear about these results. Tuesday, I have my endoscopy and colonoscopy, which will be the last of my tests-I hope! Shocked

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sarahkay1111

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Posts: 136

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #6 - 03/02/14 at 12:23:31

Hi Ladybug,
That is a lot to have going on! I hope you get the answers you need. I have had 4 endoscopies since having mast cell issues. Make sure they know what's going on. Mine went well with IV Benadryl given beforehand. I had propofol, Fentanyl, and Zofran with my procedures, and it went well. Good luck with everything!
Sarah

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Ladybug

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Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #7 - 03/02/14 at 12:40:00

sarahkay1111 wrote on 03/02/14 at 12:23:31:

Hi Ladybug,
That is a lot to have going on! I hope you get the answers you need. I have had 4 endoscopies since having mast cell issues. Make sure they know what's going on. Mine went well with IV Benadryl given beforehand. I had propofol, Fentanyl, and Zofran with my procedures, and it went well. Good luck with everything!
Sarah

Hi Sarah,
Thanks so much. Wow! You've been through 4 endos? That's a lot. What did they find out, if you don't mind sharing. I work tomorrow, start drinking the junk at dinnertime and then the rest in the morning, then I'll go in for the procedure. I hope this will be the last testing I have done for a long time! Cheesy

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KatFromMD

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Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #8 - 03/03/14 at 05:02:54

Be careful with the colonoscopy prep. I reacted very badly to it and got rather shocky and couldn't finish it (though I got down enough of it to clean everything out and have the colonoscopy). And this was back when my GI issues weren't that bad yet.

My hubby gets pills for his prep, and just has to drink lots of water. (Different GI docs.) I think if I ever have one again (I so don't want to), that is the way to go.

I don't mean to scare you, but I do want you to consider you might have trouble with it. Just be sure that you have someone else at home with you in case you have problems.

In addition, does your GI doc know what stains to request from the lab? This is from an email that Dr. Afrin sent me:
Quote:

The stains to be
run are CD117 at a minimum, also Giemsa, toluidine blue, and/or tryptase
if the pathologist is so inclined. If there is any evidence of increased
mast cells in any of these biopsies, then the positive biopsies should
also be sent to a reference laboratory for "PCR analysis for the
KIT-D816V mutation," as the information from that test will come in
handy down the road should there develop a need to consider trying you
on an extremely expensive medication called imatinib. ...the
endoscopist should take care to specifically request that the
pathologist examine the biopsies for mast cell disease with not only the
above-noted tests but also (importantly!) multi-color flow cytometry for
surface co-expression of CD117/CD25 or CD117/CD2. The endoscopist has
to be prepared in advance to make this request because this test
requires that he send tissue to the pathologist that is *not*fixed in a
preservative, i.e., flow cytometry can only be done on *fresh*,
"unfixed" tissue, and that's in contrast to the usual procedure in which
the endoscopist immediately drops the biopsies into preservative
(formalin or other) before conveyance to the pathologist. It's probably
worth doing this testing on GI biopsies, marrow biopsies, andmaybe lung
biopsies, but the yield rate on biopsies of other tissues is likely to
be so low that I wouldn't routinely order these special (and expensive)
tests on biopsies of other tissues.

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sarahkay1111 Guiding Light Offline I Love YaBB 2! Posts: 136	Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test Reply #9 - 03/03/14 at 05:41:44 Ladybug--I have Eosinophilic Esophagitis too. That was my first diagnosis. If you read my Introduction story--it has all the details, if you're interested
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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #10 - 03/04/14 at 02:32:23

sarahkay1111 wrote on 03/03/14 at 05:41:44:

Ladybug--I have Eosinophilic Esophagitis too. That was my first diagnosis. If you read my Introduction story--it has all the details, if you're interested

Thank you, Sarah. I had a long night and early morning with having to get up at 3:30 am to finish the 1/2 gallon this morning. Cheesy

My ride will be here soon and I will soon have these two procedures out of the way. Prayers appreciated!

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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #11 - 03/04/14 at 10:03:28

Hello all,

I just got home from endoscopy and colonoscopy. I was amazed with how much anxiety I was experiencing while getting checked in. My bp went up, which usually never does. Dr. Theodor Feinstat (GI in Roseville) was amazing. I read so much about nightmare doctors and have even experienced them myself. I liked him from the start. He was very interested in my MCAS and, I'm sure, how it affects the GI so that he can be on the lookout for his patients. He's obviously wired that way.

The anesthesiologist came in to review my history and about what I can and cannot use for anes. Do you know he came back into my station reading information about mast cells from his cell phone? He pulled up mast cell disease and said that the prescribed anesthesia that my GI and allergist agreed upon had a derivative of egg white and he wanted to know how I tolerate egg white. I told him that I was off eggs for a while and started up with them again and noticed to problem. Also, that I read that it was the uncooked egg white to be concerned about. He believed that we should be okay and I agreed.

The nurses came in asking about my allergies and mast cell triggers, etc. Many of them were curious. They asked about tape adhesives and I explained that I can use tape or paper tape with an acrylic-based adhesive (not silicone based adhesive), nor silk tape because I react to silk. She showed me what she had and let me pick my bandage . . . I'm telling you guys . . . I was over-the-top impressed.

My GI doctor came in and wanted to add Benadryl to my IV. I thought about pre-medicating with Benadryl, but I couldn't drink anything red before treatment and that's all I had. In my research I didn't even think of having Benadryl added to my IV! He was going to add some H1/H2 but read that I took some at 3:30 am this morning and he felt that I should be okay.

He did about 18 biopsies of my esophagus, duodenal area, ileum, and sigmoid colon (two nurses commented that he removed a lot of biopsies. He also removed a polyp from my stomach. Would any of you know anything about those???

My GI doctor read out loud the entire protocol and procedures before putting me out and waited for the team to agree or question. Afterward, he assured me that the biopsies were being sent out using the correct stains.

Now I wait for the results of the stomach polyp removal and 18 biopsies.

My experience was great . . . had to be . . . the nurses told me that all I talked about was my skiing trip in Russia—and I don't even ski! Cheesy

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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #12 - 03/04/14 at 10:14:24

Quote:

Be careful with the colonoscopy prep. I reacted very badly to it and got rather shocky and couldn't finish it (though I got down enough of it to clean everything out and have the colonoscopy). And this was back when my GI issues weren't that bad yet.

My hubby gets pills for his prep, and just has to drink lots of water. (Different GI docs.) I think if I ever have one again (I so don't want to), that is the way to go.

I don't mean to scare you, but I do want you to consider you might have trouble with it. Just be sure that you have someone else at home with you in case you have problems.

[/quote]

Hi Kat,

I was not given the usual Movi-Prep, but the Trilyte Prep. I had to drink a huge amount of water. During my procedure, the nurse told me about a great newer prep where you simply take a few a few pills, but have to drink a lot of water. She said that most insurances don't cover it, but it does run about $150 USD for those who want to use it. Next time, hopefully a long time from now, I will ask for that method. Grin

Thank you!

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KatFromMD

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #13 - 03/05/14 at 05:32:41

SO glad to hear that everything went so smoothly....sounds like a fantastic medical team!!!!

I think our insurance at least partially covered those pills, but my husband had to specifically ask for them (his previous GI doc, who retired, had prescribed them in the past). Even if the insurance didn't pay, it was so much easier for him to drink lots and lots of water, rather than lots and lots of gunk!! (My hubbie has Crohn's disease, so he's been having colonoscopies every three to five years for the past 30 years...he is a pro at it and says that it has all gotten so much better than it used to be!)

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Ladybug

Ex Member

Re: Update on first GI and Dermatolgoist visits & 24-hr Urine Test
Reply #14 - 03/21/14 at 17:07:23

Urine testing update: It's be 2 1/2 weeks since I did the 24-hour urine collection for testing and only one test result came in for the PGD2 being high. I started taking 81 mg. aspirin today and he gave me another scrip to get my 3rd round of Ketotefin filled.

My allergist will contact me when the remaining two results come in.

Any info about PGD2 (prostaglandin D2) would be greatly appreciated.
Thanks!

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