Aly1

I know they do not add gluten-containing ingredients to their spices but I wanted to confirm here on the forum that I don't need to be concerned with cross-contamination. Anyone here use them? Or avoid them?

Thanks!

I think they just refer you back to the doc who originally sent you to them...who would do any further referrals. But I am really not positive, that was just my experience but maybe it would have been different if I'd been given a new dx...

Oh I know, doctors hate it when you try to do anything remotely assertive but who cares. It's more important that they get all the info you need them to get. But I would weed out anything that isn't totally...pivotal. I think after the first few points most docs tend to glaze over and don't hear a word you're saying!

Oh and here I thought you were going to MN, that's the one I went to. I cant believe you booked flights and everything and now find you are expected somewhere else! At least you found out now, it would really be a nightmare if you showed up in the wrong state! And no worries, I'm sure they do the same thing regardless of where you go.

You and I just posted 10 min apart, not sure if you saw my previous post? In any case, try not to get anxious, just focus on the big picture instead of all those anxiety-producing thoughts. It's a great opportunity for you to find out what's wrong once and for all!

My husband travels for his job almost every week. Many times he goes out of the country. He has accumulated a LOT of hotel bonus points and the same for airlines. He looked into where the hotels were that we could use the points. He opted for the one that's about 8 blocks from Mayo, because of the kitchenette.

I react to even trace amounts of gluten, so eating in restaurants is kind of scary. He thought it best to eat whatever we can prepare ourselves, not knowing if there would be gluten free restaurants?

When he was booking our flights he asked me if I thought I'd need a wheelchair and I told him yes. At this point I've gotten so weak I can't run errands on my own. I've gone to the produce store, and grocery store with my hubby, and walking with a cart to steady me exhausts me pretty fast.

I'm SO thankful that you've been there and can share a bit of what's to be expected. I'm a pretty anxious person in general, and having so many unknowns is scary!

I was not gluten free back then so I don't know how the food options would be celiac-wise. If I recall correctly there was quite a bit of fast food on that lower concourse and unless things have changed you should definitely plan to eat in your kitchenette!

That was thoughtful of your hubby to realize you might need a wheelchair in the airport. I remember feeling a bit awkward the first time I did that but they do it many many times a day and don't think twice about it. I also remember being where you're at, not having the ability to run errands myself anymore and hubby having to do it all. It can be pretty depressing . Hopefully this is your rock-bottom and Mayo will put you on the course to healing.

Do be prepared to advocate for yourself and make sure you're heard. I had to take a deep breath and assert myself (I have social anxiety so that can be hard for me) ...when there are three docs in a room it's 3 times the opportunity for them to think they know it all! But you have to do it from the get-go, that's important, because the info they take away from your consultation with them will direct all of your tests for the week. It's not like a usual doc where you'll have lots of follow up visits and opportunities to make up any missed tests. If you can manage it, I'd recommend creating a document where you write down what exactly you want them to "get" - what they absolutley MUST understand about your symptoms in order to help you. If you add lots of back story, you might lose them - in my experience they were not hand-holders, they were clinicians looking at data. I know you have anxiety issues too, but try to use your desperation to get you past that, so you can get the best that Mayo has to offer.

My context: One of the hallmarks of my illness was that any activity made my leg muscles worse - anything where the muscles had to contract regularly made me so much worse, no matter how innocuous the activity might have seemed, and caused the symptoms to spread further up my legs. Understanding that was pivotal. At the end of the week they recommended, amongst other things, physical therapy. They never really heard at the beginning of the week that I'd had 3 runs at PT and each one had made me worse. That last day was the day I finally asserted myself, but it was too late - when you get to the end, it's case closed, they make their recommendations and it's over, they're never going to see you again. Its very formulaic what they do there - consult, tons of tests, more tests if results indicate further exploration in one direction, and by the end of the week they tie it all up in a bow and present their findings and recommendations or dx. At that last meeting they are no longer listening, they are just talking! So if I could have a do-over I would write down what I consider to be the hallmarks of my illness - pared down as much as possible so as not to overwhelm - and make sure I openly discussed the list at the beginning consultation. Make 2 copies do you can keep one and hand over the other one (though that may not be necessary. You carry your own medical file all over if I recall correctly (wish my memory was better!) but bring the extra copy just in case. That way you can be sure it's not lost in the shuffle and can refer to it to keep yourself focused during all that external stimulation. Doing that probably would not have helped me anyway, since my illness appears to be a combination of GI and the fact that I'm stuck in a mold-infested apartment. But it's what I would do if I were your shoes now.

Hope that info helps. If you have any more questions I'd be happy to answer them!

Oh I should not be reading these posts on an empty stomach! I am so hungry and can't decide if I'm craving crunchy salty chips or brownies more! !

Oh another note Bubba'sMom - the tunnels under Mayo are pretty long. I don't know if it's the case with you but if walking is a problem for you energy-wise perhaps you can send hubby to get that scooter and bring it back to the room for you. Something to consider if you need to conserve your energy, it sounds like you do!

Glad you popped in here Aly1! What great info. for Bubba'sMom! How fantastic that you've been where she is going & can give her all the 411. We're all so worried about her. Your Dr. House sounds tee-riffic!

I have no idea how I missed the original post but when I read it tonight I was worried too. Bubba'sMom gives such great advice...it's funny, for some reason I assume everyone on here who gives great advice must be all cured and feeling well, so I was really sad to read about all that's been going on. It wasn't very long ago that I was so weak I had to choose which counter in my kitchen I would wipe that day -and I was only able to do that two days a week. I know what it feels like to see your life fading away and have no one figuring out why, despite your best efforts to get help. They really do such a comprehensive job at Mayo so hopefully they will figure out what's going wrong here.

PS. I love your screen name Squirmingitch!

Did you go with a hotel recommendation from them? I ask bc my mom and I stayed in one that was super close - and connected to an underground tunnel system that takes you up into Mayo. It's...kinda cool . So you just go back to your room between tests to rest if you so choose, or there's a small shopping concourse on a lower level where you can kill some time. I got a great sweater there actually .

There's a Mayo store in the main level where I rented a scooter; I think it was $25/day but who knows if my brain is remembering that accurately. It was also 2006 so the price could have changed.

When you arrive at some point they will give you a schedule of the tests they will be doing, when and where in the building, and they will add tests if they see fit.

For the airport I recommend if you are weak that you ask your airline for a wheelchair. They will give you one and someone will even push you through the airport to and from your gate (and, you get to jump security lines and get on the plane first.)

Lol, well hey, whatever it takes to get better, right?! He did actually have a case where he went to a woman's home and discovered it was located over a previous chemical dump site. He's a very interesting guy.

Do keep us posted, I will be thinking of you when Feb arrives, and remembering my own Mayo trip. Are you going to the one in MN or ?

One thing we do with our little one is alternate. It's a rule we implemented where if she wants to eat <insert what food she Wants> she has to alternate one bite of one then the other. It doesn't work if she genuinely hates the food in question, but if we know it's something she's had and liked before then we stand firm. It's actually worked really well 99% of the time.

Don't graze in the yard. You have to ingest the gluten for it to hurt you. Walking on it is totally safe.

Ha, this is a good point... But. If the dogs track it in and say, jump on the sofa, and you out your hand there then touch your face...it is theoretically quite possible.

Wow I can't believe your doc said that about going to the ER! Um, they only keep you overnight if you need it! What an a$$, pardon my french, I have absolutely had it with docs.

I am so sorry for everything you are going through! My heart goes out to you. It's so hard to keep fighting when it seems no one gets it and you haven't got any energy left at all. Please keep us posted. Re the antibiotics - yes they will make candida much worse. Make sure you take as much probiotics as you can to battle it.

Good luck, I will be thinking of you. I went to Mayo in MN and it was very comprehensive. They failed to dx my GI, but I present totally neurologically and this was back in 96 before most docs knew GI was a real issue. So I don't hold it against them. Too much.

One last thing. If by some chance mayo does not work and you are still physically capable, I know of a great doc in NYC who has been coined "the real dr house". He specializes in medical mysteries and is the only doc out of about 20 I saw, to ever help me. He LISTENS, BELIEVES and TAKES YOU SERIOUSLY. He does not, however, bother with insurance companies because they interfere with his ability to practice medicine the way he wants to. He's pretty much a genius who loves to figure out difficult cases that other docs avoid. For anyone who's interested, his name is Dr. Thomas Bolte. (Small caveat: He has a lousy phone manner and since he is on his own with no office staff he is not great about returning calls. So you do have to be persistent at times. But for the desperate person who can overlook those faults he is...priceless.)

My hubby gets frustrated too - he just wants a "normal" life. Hmm, don't we all!

Sorry you got glutened in the strangest of ways!!

I'm sorry you haven't gotten anywhere trying to find the cause of your symptoms. I can't comment on the tests you've had thus far; perhaps you could contact your local celiac support group (google!) and get a recommendation for a good celiac doc, for a second opinion? It couldn't hurt...

Are you supplementing with zinc by chance? Too much zinc can make your hair fall out, it was happening to me till I found that out and scaled back my dosage.

I think it would be easier if you didn't bother trying to explain to people. At work I would just say 'No thanks' or 'I'm not really a cake/pizza/whatever person, it doesn't do it for me', (yes, that is a lie, i really do want it! But whatever.) and leave it at that. It seems that explaining doesn't get anywhere so I don't really try anymore.

The past 6 years I've had to adjust to life in a wheelchair and I can definitely say that these things can do a number on you if you let them. It's definitely about how you choose to look at your situation. You can view it as a big limitation where you can't live the way you want to, or you can view it as 'wow I am so lucky to have not suffered undiagnosed for ages like some, and my health is in my control now" - previously it was only a matter of time before problems arose, and you avoided all that. In my case, I remember what it was like prior to the wheelchair, when I was in terrible pain from walking, taking more and more opiates Round the clock but still feeling pain, all but homebound because if it. The wheelchair got me out of the house and living again, and since I stopped stressing my legs, the pain is 99% gone. Could I sit around and think about how my 30's were devastated and I can't take my little girl ice skating or hike through the woods with my hubby - absolutely! But I would still be sitting in the damn chair, wouldn't I, but in that scenario I'd be miserable. No thanks.

My point is - do what you need to do to keep healthy and don't make a big deal out of having celiac. Just put one foot in front of the other and don't think more about it than you need to. It's just food. I've never understood why (some) people are so attached to it but maybe I'm built differently. Stick healthy food in, repeat as necessary. Get on with living and don't consider yourself as missing out or defective or any number of negative things you could dream up. Just go live your healthy life! That's my advice.

PS. Interesting note re Carnival cruises. I just came back from a Royal Caribbean one and they were *fantastic* in regards to both celiac and any other food intolerances. They took it very seriously and I felt better eating their food than I have at home! So don't count cruising out for your future, just give RC a try.

PS. I would call your doc office and get your test results sent to you (you may have to sign something to get them). When you have them you can research the values and find out for yourself if you are on the lower end of the spectrum for any of them - sometimes just slight deficiencies can cause symptoms. Of course, you do need to be cautious that you don't overdo anything in your zeal to heal yourself. A great reference for supplements can be found at www.ods.od.nih.gov - you can type a vitamin into the search field and find documentation on safe limits and the best forms of a vitamin to take.

Hang in there, you've only just begun your battle! It can take months to iron everything out, and for some people, longer. I have had lifelong problems with depression and have used tons of anti-depressants. Not one of them helped me as much as going gluten free and the following supplements (I did both at the same time so I can't say for certain which has had the greatest impact):

1. A really good daily multivitamin - MAKE SURE IT'S GLUTEN FREE. I use Eclectic Institute's 'Vital Force Caps' at the recommendation of the doc who dx'd me. It's not cheap but despite being really poor right now I decided I was going to take whatever this doc advised, since after 10 years of illness with no help from numerous docs, he pinpointed gluten. He's my hero .

2. Udo's Oil 3-6-9 Blend - also recommended by my hero. It's an oil that's a perfect ratio blend of omega-3 and omega-6 oils. I take 1 tbsp a day, added to food. I think this one has had a big impact on my depression - speculation of course. But omega-3 deficiencies are really common and can lead to depression amongst numerous other things.

I was on those for about 2 months when I discovered my seasonal effective disorder had disappeared...and I can honestly say for the first time in my adult life that I am not depressed! For me that's a big WOW.

At 2 months in, you are at the stage where many start to become extra sensitive to even the smallest amount of gluten, so make sure your supplements and little things like spices are all gluten-free (McCormicks single ingredients ones were recommended to me here). Be very wary about cross-contamination in your home and remember to check Every Single Ingredient even if it seems gluten would never be present (learn from my mistake: I was baking gluten-free muffins without realizing the baking soda had been processes in a facility alongside wheat. Had I read the box I would have spared myself 2 weeks of feeling lousy and not knowing why.) Know that it's very common to have multiple sensitivities aside from gluten - I for example have issues with oats (even gluten-free oats - and that's a common one), corn, sugars & gums like guar gum), dairy. There's a good chance that gluten is not the only thing messing with you physically and emotionally.

As I said before you are at the earliest stage of the battle. I would continue to try to avoid medication while you are sorting everything out, there's a good chance you don't need it! Do some research and educate your husband (tell him if he wants his opinion noted, it needs to be an informed one!)

And find another doctor! Preferably one who understands celiac, it would make a world of difference. Try googling for your local Celiac support group, and call or email for a recommendation for a new doc. You really need a doc on your side to help figure out your deficiencies and get your health back on track.

Good luck!

I agree with the previous posters but did want to add that if you think you might want to get a biopsy done you must keep eating gluten until that test is completed...

Good things for us to consider. I am waiting to see the test results and find out exactly which ones were used. There are no easy answers though are there! :/

I took your advice and called the local support group for the name of a celiac-oriented pediatrician. They gave me the name of a pediatric GI that they recommend highly.

I can't help but think that a GI will be really scope-oriented and I'm not ready to put her through that procedure...do you think I'm right that this doc will push that? Or am I just being biased against GI's?

Thanks that's interesting, I will research it further!

You likely would have a negative result 2 months down the road so you're right that you need to make the decision now. It's a personal call. If you no longer had the option of having a biopsy (because too much time had passed and it would no longer yield correct results) would that bother you? Some of us really want a dx; others don't really need it.

I *think* if my celiac bloodwork came back positive, I would not really need the biopsy...but I'm not sure. I have seen some recent research out there where calling the biopsy the "golden standard" is being argued against by many in the field; I suspect in a few years they will no longer be doing it so much. But that's just a guess.

Again, the call is yours. It may be that your doc will not formally dx you as celiac if you do not have the biopsy. Something to find out / consider...

I am in a similar position. My health has been devastated the past 10 years and I couldn't find out why. I tested negative for celiac but I get so sick from gluten that I can't help but tie the two together. I am in a wheelchair and have no official diagnosis to explain that to family members and friends and it frustrates the heck out of me.

What I've decided to do is get genetic tests done so at least I might have something there. Is that something you might consider? I have to wait till I get medical insurance again but then I will go for it. There's no way I'll ever do a gluten challenge to try and get a positive result - I just can't do that to myself!