• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Home From Mayo Clinic
0

Rate this topic

10 posts in this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

Wow. Sounds like a thorough visit.

Hope the treatment helps.

Please keep us posted as to results.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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!

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

I feel so sorry for you and hope that they can get to the bottom of your problem... Good luck!

Share this post


Link to post
Share on other sites

At least, at last, it sounds like they will leave no stone unturned to get to the bottom of the situation. GOOD!smile.gif

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,132
    • Total Posts
      939,832
  • Member Statistics

    • Total Members
      66,111
    • Most Online
      3,093

    Newest Member
    trainerj
    Joined
  • Popular Now

  • Topics

  • Posts

    • You might have to try cooking ALL fruits & veggies to death to make it super easy for your gut to handle them without putting undue stress on your body. Another thought is ditch every single processed food. Eat everything fresh that you cook yourself. No frozen foods, no canned foods. You can do dried beans but be sure to sort & wash them carefully first.  6 months in is early for many people. It sounds like you're one of those people. Saying that you definitely feel better than when you started is a good thing. You know it's working. It just isn't working as fast as you hoped/wanted. Take heart that you are feeling better and try to be patient. I know it's hard. You want to GOOOOOOOOOOOOOOO & get on with your life. You feel like you're sitting at the starting line with your engine revving & you just want to race ahead but you can't get off the starting line, as if someone put a chain around your rear axle.  Be kind to yourself, be patient with yourself. 
    • There is a HUGE difference between grass and grain fed meats. The grass fed longhorn that I use when I Cook for others is 100% different then any other grain fed beef I have gotten in the store. THe stuff is SOO lean you have to ADD oil to the hamburger sometimes because it is so lean there is no oil to fry it up in. The meat is leaner then turkey. The omegas content is different in it also. I love cooking with it because it rarely needs any seasoning and anything I do apply seems to just explode in flavor with it. NOW I can not really eat it, but as a chef what we do is set a bit aside in a tasting dish and go do a chew and spit it out test. Not something to be done with a allergen or gluten but with stuff I do not digest like rice, beans, meats it is a means for me to know if seasoned and cooked right. >.< Note I lack the digestive abilities to break down actual meats, even with enzymes they just sorta float til I puke them up or they come out undigested out the back in the case with fish and crab. I have not tried meat since March....side thought my doctor had told me when my UC damage heals up I might be able to eat meat again....might try some fish tomorrow.

      I do have some other thoughts, you say B12...what about the other B-vitamins? How much magnesium are you taking? Magnesium is a relaxent when your getting enough your feel relaxed, you have very vivid dreams and sleep like a rock. This is why many people take it right before bed.

      I have always praised and sworn by Liquid Health Stress & Energy and Liquid Health Neurological Support for B-vitmains due to the nature of how they work with the body I take 1tbsp each 3 times a day before each meal to keep optimal levels and prevent that wane feeling. I also use KAL nutritional yeast in my meals often (look up the nutritional label on these)
    • Hey everyone,  I am new to this and relatively new to figuring out I was gluten intolerant.  I had lost about 20 pounds over the course of 2 months and had a colonoscopy and scheduled endoscope to see what was going on.  I was getting massive stomach cramps whenever I ate bread, explosive diarrhea when I had anything with lactose, and was in a state of continual brain fog and anxiety.  The medication the doctors gave me, including PPIs didn't seem to help.  I literally thought I was dying of stomach cancer.  A week before my upper endoscope I started a gluten free diet and saw a massive reduction in my symptoms.  My brain fog and anxiety went away almost immediately, so did my heartburn, I got this whenever I ate bread, and I didn't have the massive cramping feeling in my stomach, I gained back about 7 pounds, and my diarrhea began to go away.  I had a blood test for celiac but was negative for it, the doctor told me the best way to tell was to continue to eat gluten and get my endoscope and have a biopsy done.  Since I felt so good I decided not to get the endoscope, since the GI surgeon said I was either one of two things: celiac or had non-celiac gluten sensitivity.  He said the treatment is the same for both; no gluten.   The questions I have is I am still having some issues, it seems like if I eat anything with corn or soy I get diarrhea.  I also still have a nagging discomfort under my left ribs.  I have been gluten-free for about 2 weeks and that is what I am still experiencing. I have read that I may need to cut out soy, sunflower oil, safflower oil, and corn as well as the lactose and gluten to really start seeing good results.  Has anyone else experienced this stuff before?  Do you guys think I should have gotten the upper endoscope?  Thank you so much for your input. When I was researching on what I could possibly have wrong with me, it was this site that made me try to go gluten free and it saved my health.  I know most doctors don't recognized NCGI so I don't know how long I would have suffered though this, as no doctors I worked with suggested going off gluten. Thank you for your responses and God Bless! Josh  
    • Thanks for all the input guys. Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water. For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since. So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting. The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?
    • At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.
  • Upcoming Events