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Home From Mayo Clinic


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9 replies to this topic

#1 Bubba's Mom

 
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Posted 07 May 2012 - 08:35 AM

I'm back from Mayo Clinic, Rochester. I was referred there by Mayo in FL.
Got a battery of blood tests, hydrogen breath test, capsule endoscope, consultation with Neurologist (some tests), consultation with ENT (scope of throat, hearing test).

I was originally DXed Celiac in late June 2011, with negative blood test and severe damage noticeable with naked eye when scoped. Went gluten-free and had some improvement of symptoms, but continued to lose weight and grow weaker. Reacting badly to many additional foods and having to omit them. Night sweats, anxiety, angina, muscle weakness continued.

Had a second scope by a different GI at 6mos gluten-free and was told my damage was severe and possibly refractory sprue. Had gene test done (DQ2.2) and gallbladder function test(30%). I asked for a SIBO test and was mocked "Did Dr. Google tell you to ask for that?"
Was told I couldn't have Celiac with those genes and to consult a surgeon about having GB removed. That GI was done with me. I got my results of the tests by calling them. They canceled my follow up appointment after getting my gene tests. Test result said "equivical" NOT negative which is what I was told.

Was referred to Mayo in MN. Dr's office screwed up and arranged my visit with FL Mayo. They did an extended endoscope and tested for Whipple's disease. It was negative and they said negative for refractory sprue. Was put on steroids and referred to Mayo MN.

Don't know what blood tests were done, hydrogen breath test captured a high methane reading, gallbladder ultrasound showed no stones or blockage, capsule endoscope showed greatly improved villi from steroids, no evidence of Crohn's, slow transit time.(capsule should pass in about 8 hours. It's been 6 days and it hasn't passed.)
Failed some of the Neuro tests, (balance, short term memory, cognitive issues) but was told that would be consistant with a gluten exposure I had Mar 20, and still recovering from.
I slowly healed after a gluten cc in January, so was told if I heal over time it's more consistant with Celiac than a Neuro problem. Told to come back in 4 months if not back to normal from the more recent exposure.

ENT found no outward evidence of ear problems, but wants me to come back May 22 for a week's worth of balance tests. I'm not sure if I will go or not? It's an expensive trip!

Dr. Murray said he's unsure of my Celiac Dx with the genes I have. He said DQ2.2 is unlikely to be Celiac, but he's not ruling it out.
The high methane reading would indicate SIBO, and C would indicate SIBO.
SIBO could explain additional food intolerances. The bacteria emit toxins as they feed and cause reactions in the body and brain. It could also cause villi damage..severe if left untreated for a long time.
BUT..if my problem is only SIBO, the villi wouldn't heal from being on steroids, so there's something else going on.

I was on PPIs for years, and took myself off them in the hopes of healing my GB. Turns out, I'm more likely a low acid producer and shouldn't have been on PPIs? Dr. Murray said he wouldn't advise having the GB removed. It may improve.

He prescribed an increase in the steroids, an RX digestive enzymes, and a round of Xifaxin. I told him I was given a 10 day treatment of Xifaxin in Jan, and apparently it didn't work? He said we're trying it again, followed by Cipro, and another, etc. until the bad bacteria are gone. (I don't know how I'll know if it worked or not?) :blink:
I *should* get some foods back if the bacteria that were causing toxins from them are wiped out.

One of the blood tests he did had to be sent out and takes 4 weeks to get the results. I don't know what it tests for, but got the impression that we want it to be negative!

He said he wants to get me healthy and then maybe try a gluten challenge down the road some time to see what happens. Since my symptoms have changed to very severe Neuro, which lasts for a couple of months, I don't want to challenge! He agreed that it might not be a good idea, and to continue gluten-free.

About 5 hours into our trip home my hubby noticed there was a message on his phone. It was Mayo wanting me to get an additional blood test before I left. When we called back they said it wasn't neccesary to turn around and come back. She'd check with the Dr. and see if I could get the test here and have the results sent there. I haven't heard back.

I agreed to be a part of a Celiac study. They drew extra blood for tests. They're looking at more genes, and looking for AI diseases that go with Celiac.

At our first meeting, Dr, Murray askd about past medications I had taken. Some *can* cause ongoing problems even after going off them. The tests I had seemed to rule that out as a cause?

My local pharmacy doesn't have the strength of Xifaxin he ordered, or the digestive enzymes, so I'm waiting for them to come in. Fingers crossed that they help!
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#2 pricklypear1971

 
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Posted 07 May 2012 - 08:41 AM

Wow.

Well, it sounds like he's being thorough - which is definitely what you need.

Hang in there and keep us posted!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 raea2002

 
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Posted 07 May 2012 - 08:52 AM

What a rough journey. I love the mayo clinic in MN. I'm a bit impartial though because I was raised in MN, and they saved my life. Trust the drs there they have helped me and several of my family members in the past. Hang in there and I hope u get the answers you need and deserve.
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#4 BabsV

 
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Posted 07 May 2012 - 09:33 AM

Wow. Sounds like a thorough visit.

Hope the treatment helps.

Please keep us posted as to results.
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#5 beachbirdie

 
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Posted 07 May 2012 - 09:47 AM

Wow, they ran you through a lot! I pray they find answers and are able to help you! Sounds like at least they are taking your issues seriously and not blowing you off. That is great.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#6 MitziG

 
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Posted 07 May 2012 - 10:42 AM

You are in good hands. When it comes to dealing with "weird stuff" Rochester is the place to go. They will not leave any stone unturned! Hope you get some answers soon!
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#7 mushroom

 
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Posted 07 May 2012 - 12:09 PM

It was a wise decision to go there. I can think of few places where you could get a work-up like that. Hope it all works out for you. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#8 Bubba's Mom

 
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Posted 07 May 2012 - 12:58 PM

I got a call from Mayo. The blood test they want done will be sent to me by mail, blood drawn at a lab here, then sent back to them. It's for Autoimmune Gastrointestinal Dsymotility (AGID) It's extremely rare. I don't think anyone except Mayo would think to test for it? It looks like they want to check out every possibility and be sure of my DX and treatment?

In general, my impression of the Mayo in MN is that it's a fantastic facility that tries to put patient comfort at the top of the list. (they had a warmer for the ultrasound goo!)They try very hard to get tests scheduled in clusters so you can go for the week..or whatever and have a lot of answers in the end. In my case, there were so many things they wanted to check, it couldn't all be done in a week and on short notice. The Neurologist stayed late so I could get in rather than have to come back May 26, which was the earliest opening they could find originally.

Mayo in FL wasn't nearly as thorough. If you are ever "on the fence" about going there..I highly recommend Mayo MN.
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#9 HoosierMother

 
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Posted 07 May 2012 - 02:51 PM

I feel so sorry for you and hope that they can get to the bottom of your problem... Good luck!
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Nobody can go back and start a new beginning, but anyone can start today and make a new ending. - Maria Robinson

#10 squirmingitch

 
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Posted 08 May 2012 - 08:21 AM

At least, at last, it sounds like they will leave no stone unturned to get to the bottom of the situation. GOOD!Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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