Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do You Choose Which Specialist To Visit?

[em80]

Hoping to get some advice from all of you wonderful people... Thanks so much to everyone for the fantastic information available here!

I was diagnosed with Celiac at the Mayo Clinic in Rochester almost three years ago and have been rigidly gluten free since then. I do eat out, maybe more than I should, but I'm really, really careful about where I go, what I order, etc. Also eat mostly organic, unprocessed whole foods at home.

Unfortunately, I had another round of tests done recently and it's not looking good! All of my numbers, while slightly improved, are still really high, and my biopsy still shows villous atrophy just as severe as it was three years ago.

I haven't been back to Mayo because, honestly, I wasn't thrilled with the experience and it was very expensive and a really long way for me to travel. (I live in Michigan.) It seemed to me at the time like I could just follow the diet and continue to monitor my vitamin deficiencies and other issues without going through the hassle and expense of another visit to Mayo - having gotten a very clear diagnosis, I didn't see the point of returning.

Now that I'm three years into the diet and still dealing with a lot of symptoms and not much improvement in my test results, I'm thinking it's time to see a specialist again - but I don't know where to go! Or even, really, if I should go at all!

I have enough neurological issues that I really want to see someone who can address those questions, and Mayo didn't even mention them. I didn't worry about it at the time because I thought the diet would solve everything. I'm also thinking maybe I need to be checked for refractory celiac?

On the other hand, I've just spent an entire day reading everyone else's posts about their experiences at the specialty university/research clinics, and, once again, I'm questioning whether or not it's even worth it! Can they really tell you anything more once you know the diagnosis for sure? Are they just going to tell me to keep following the diet? That would really feel like a wast of time...

I'm so frustrated and I have no idea what to think. I've pretty much lost my career to this stupid disease already, so I'm willing to travel anywhere to figure out why I'm not improving... I've considered Dr. Murray, Dr. Green, Dr. Fasano, U. of Chicago, etc., but none of them seem to have compelling info available on what they can actually offer someone who needs continuing treatment rather than an initial diagnosis.

Sorry for the long post... Thanks in advance for any thoughts you can offer. I'm feeling pretty desperate and frustrated!

[kareng]

I'll be blunt here.....perhaps you should stay home and be really careful about eating gluten free for 3 months. Then re- test to see if your blood tests for Celiac go down. If they are going down, you have found your culprit. Easier and cheaper than traveling to specialists.

If they don't go down, then you could try a Celiac center.

[rosetapper23]

I've heard all three doctors speak numerous times at conferences and workshops, and I believe that the specialist who may be able to help you the most is Dr. Murray, because he specializes in identifying other foods and factors that may be causing your distress. He believes in cross-reactivity (which, I know, a number of people on this forum do not believe in), but he has convinced me that this can be a real concern when a person is unable to heal properly after strictly following a gluten-free diet. Try contacting him first to see if he can help--he's very approachable and compassionate.

[em80]

I'll be blunt here.....perhaps you should stay home and be really careful about eating gluten free for 3 months. Then re- test to see if your blood tests for Celiac go down. If they are going down, you have found your culprit. Easier and cheaper than traveling to specialists.

If they don't go down, then you could try a Celiac center.

Thanks for your input - I'm definitely considering that option, but I want to think ahead about appointments because it seems like all of these places having 3-4 month waiting lists.

Also... How common do you think it is to have to literally completely eliminate eating out? I feel like I've been super, super careful about CC and I've never knowingly cheated... I've check my medications, supplements, cosmetics, etc. I know the only way to know for sure is to do whole foods at home and see if things improve, which is why I'm going that route now, but I still feel like I should've seen more improvement based on how careful I've already been. I suspect you're going to say I'm foolishly optimistic? Sigh!

[bartfull]

If I'm not mistaken, both soy and dairy can also cause atrophy. (Somebody correct me if I'm wrong.) If you are sure you aren't getting cross-contaminated, maybe these things are causing your problem? I would also go through the house with a fine-toothed comb, looking for possible sources of CC. Are you in a gluten-free household, or do other family members eat gluten? How about pets? Most pet foods contain gluten and it is easy to get glutened by dog kisses, or even petting your cat, then eating without washing your hands first. Cosmetics, shampoos, soaps, laundry detergent? All of these things MAY contain gluten.

Or you may be getting glutened at work. I actually got glutened once from someone either playing my guitar with gluteny hands, and then I forgot to wash them before eating, or it was from cookie crumbs left on my table. There are SO many possibilities for CC!

[em80]

I've heard all three doctors speak numerous times at conferences and workshops, and I believe that the specialist who may be able to help you the most is Dr. Murray, because he specializes in identifying other foods and factors that may be causing your distress. He believes in cross-reactivity (which, I know, a number of people on this forum do not believe in), but he has convinced me that this can be a real concern when a person is unable to heal properly after strictly following a gluten-free diet. Try contacting him first to see if he can help--he's very approachable and compassionate.

Thank you so much! That's something I've been looking into as well, and it definitely makes sense to me that it could be an issue. I've tried elimination diets with some success (I now avoid most soy), but they can be pretty overwhelming and I also felt like it made sense to take some time with just the regular gluten-free diet and see how well things healed on that without getting overly-complicated.

Are you able to eat out at all, or is the risk of CC just too severe? I'm afraid that's the reality I may have to accept! Either way, I'm so glad Dr. Murray was able to help you - thanks for your input!!!

[em80]

If I'm not mistaken, both soy and dairy can also cause atrophy. (Somebody correct me if I'm wrong.) If you are sure you aren't getting cross-contaminated, maybe these things are causing your problem? I would also go through the house with a fine-toothed comb, looking for possible sources of CC. Are you in a gluten-free household, or do other family members eat gluten? How about pets? Most pet foods contain gluten and it is easy to get glutened by dog kisses, or even petting your cat, then eating without washing your hands first. Cosmetics, shampoos, soaps, laundry detergent? All of these things MAY contain gluten.

Or you may be getting glutened at work. I actually got glutened once from someone either playing my guitar with gluteny hands, and then I forgot to wash them before eating, or it was from cookie crumbs left on my table. There are SO many possibilities for CC!

Wow - I've been pretty anal about checking for hidden sources, but the guitar is a new one! Yikes!!! Also hadn't looked into laundry detergent and will check on that now. Thank you!

[Bubba's Mom]

Hoping to get some advice from all of you wonderful people... Thanks so much to everyone for the fantastic information available here!

I was diagnosed with Celiac at the Mayo Clinic in Rochester almost three years ago and have been rigidly gluten free since then. I do eat out, maybe more than I should, but I'm really, really careful about where I go, what I order, etc. Also eat mostly organic, unprocessed whole foods at home.

Unfortunately, I had another round of tests done recently and it's not looking good! All of my numbers, while slightly improved, are still really high, and my biopsy still shows villous atrophy just as severe as it was three years ago.

I haven't been back to Mayo because, honestly, I wasn't thrilled with the experience and it was very expensive and a really long way for me to travel. (I live in Michigan.) It seemed to me at the time like I could just follow the diet and continue to monitor my vitamin deficiencies and other issues without going through the hassle and expense of another visit to Mayo - having gotten a very clear diagnosis, I didn't see the point of returning.

Now that I'm three years into the diet and still dealing with a lot of symptoms and not much improvement in my test results, I'm thinking it's time to see a specialist again - but I don't know where to go! Or even, really, if I should go at all!

I have enough neurological issues that I really want to see someone who can address those questions, and Mayo didn't even mention them. I didn't worry about it at the time because I thought the diet would solve everything. I'm also thinking maybe I need to be checked for refractory celiac?

On the other hand, I've just spent an entire day reading everyone else's posts about their experiences at the specialty university/research clinics, and, once again, I'm questioning whether or not it's even worth it! Can they really tell you anything more once you know the diagnosis for sure? Are they just going to tell me to keep following the diet? That would really feel like a wast of time...

I'm so frustrated and I have no idea what to think. I've pretty much lost my career to this stupid disease already, so I'm willing to travel anywhere to figure out why I'm not improving... I've considered Dr. Murray, Dr. Green, Dr. Fasano, U. of Chicago, etc., but none of them seem to have compelling info available on what they can actually offer someone who needs continuing treatment rather than an initial diagnosis.

Sorry for the long post... Thanks in advance for any thoughts you can offer. I'm feeling pretty desperate and frustrated!

I saw Dr. Murray after I was DXed and very careful about cc, but still had a lot of bad symptoms. I test negative in my blood work, but had total villous atropy. I found him to be pleasant and kind. I was also having neurological issues after getting "glutened" when I got there. He sent me over to the Neurology dept. They did a lot of tests, including some for balance. They did a LOT of tests, but didn't give me answers. They kept telling me I'm an interesting case. I felt more like a science experiment than a person with feelings.

That being said, Dr Murray did order a SIBO test. He said he thought I had a severe case. SIBO can mimic Celiac, and it's common for Celiacs to have an imbalance in their gut flora. Have you been tested for it?

Dr. Murray is open to looking into other causes for villi damage. I had gone to a couple of different Dr.s locally and they had very little knowledge about Celiac and other food intolerances. At least Dr. Murray has a lot of experience. If you decide to go..take along a list of symptoms/questions and see if you can get your records sent ahead of time.

I continue to flail around a bit. I'm super sensitive and cannot safely eat out anywhere. It just isn't safe for me. I also had to go all grain free, soy free, dairy free, and mostly refined sugar free. I live in Ohio and know it's hard to go to MN. It's expensive too. If you feel comfortable with your local Dr., I'd ask for the SIBO test and see what it shows. Mayo could be your "back up plan"?

I wish you well, and hope you find some answers.

[Gemini]

Wow - I've been pretty anal about checking for hidden sources, but the guitar is a new one! Yikes!!! Also hadn't looked into laundry detergent and will check on that now. Thank you!

With all due respect to Bart regarding the laundry detergent.......that is sooooo just a non-issue. Your clothes are rinsed and unless you chew on your clothes, and the washing machine is not rinsing them, you cannot be glutened by laundry detergent......unless you eat it for dinner. Can we have some common sense here?

I am extremely sensitive to gluten, some call themselves super sensitive although I'm still not sure what that means........I eat out once in a great while. I go 2-3 months sometimes without eating out and do not have a problem as long as I go to certain restaurants. I don't go to chain restaurants because the food is never that good and I don't trust that type of restaurant to get it right. I have healed very well, not 100% but well enough that I live a completely normal life and my blood work is always stellar. If you are going out to eat often, even being very careful, you probably are being glutened on a regular basis. if your blood work is still high, then that's proof enough you need to stop eating out until you have things under control. Then you will only be able to do it as a treat, once in a great while, not on a regular basis. Celiac's just cannot do that and recover well.

I would suggest what kareng told you.....stay home, do not eat out and eat whole foods to see if that helps. Investigate if you have other intolerances like dairy because dairy can cause blunted villi. However, dairy will not raise Celiac blood work so if your blood work is still high, you are eating gluten. I wish you luck....you can get this under control without wasting time on specialists.

[bartfull]

Gemini, some of us use cloth napkins. No matter how good our washing machines are, they will never rinse ALL of the detergent out. If they did, those who have skin allergies wouldn't have to worry about what detergent they use - but they do. So if someone uses Wisk for example, (which I believe contains gluten) then wipes their mouth with a cloth napkin they could indeed get glutened, especially if they are super-sensitive. Even washing our faces with a washcloth and drying with a towel washed in one of these detergents can cause us to get gluten on our lips.

Maybe I'm paranoid, but the subject has come up here before. That's how I knew about Wisk. Maybe it's just people with DH that need to worry about it, but I would never wash my cloth napkins in a gluten containing detergent.

[Gemini]

You do know I love ya, Bart, and have much respect for your viewpoints because I know how hard you work at being healthy. But gluten in clothes detergent is just not an issue for a Celiac. The allergy thing....has nothing to do with an intolerence reaction. That's a topical thing and allergies can often produce a more violent reaction than a Celiac one....although that's not true in my case. I am extremely sensitive to gluten but I refrain from using the term super sensitive because I think most Celiacs are extremely sensitive and need to really avoid exposure. A stronger gluten reaction for Celiac does not measure sensitivity. However, an anaphylactic reaction is much worse than taking a gluten hit. Ditto for topical allergies like hives...fast, intense reaction but it isn't from an intolerance.

I don't need to remind you that you need to ingest gluten for it to cause the immune system to react but thinking that a washing machine will leave enough residue on your clothes or a napkin to cause an internal gluten reaction is over the top. I am not calling you paranoid at all, you can do this whatever way you feel comfortable but for information sake for the newly diagnosed or anyone else wanting to know, it just isn't a concern. Even people with DH do not have to be concerned about topical gluten contact because it's an internal reaction for them also. They may have additional allergies, which would probably be common for someone with skin reactions but they won't excite their immune system by touching bread......unless they then cram those fingers in their mouth with the crumbs on them.

People are becoming confused about allergy vs.intolerance. There is a huge difference between the two. I don't respond to these posts to be argumentative but to educate. People can do this diet any way they feel comfortable and that's what is important but many things I read on here are just not necessary for avoiding a gluten hit for a Celiac. If all of these ways of being glutened were true, no one would heal and we would have to live in a bubble just to survive.

And now I can sit back and wait for someone to chime in that "we are all different"! Maybe in how we deal with this diet and living with it but not in the way a reaction occurs. That's the same for everyone.

[bartfull]

Love you too, Gemini. But I still would never wash my cloth napkins in gluten. They touch my lips, then I eat something with those same lips. And dishtowels washed in gluten would spread that gluten onto my dishes.

I know allergies are different from intolerances, but if there is enough soap left in out laundry for us to smell the scent of the detergent when they are cleaned, and if there is enough soap left in the clothes for someone with an allergy to react, it would seem to me there is enough left to gluten my lips or my dishes. Also, if the detergent is powdered, that dust might be breathed in and swallowed just like flour dust is. If a liquid, I might get a drop on my hand and not notice, then eat something with that hand. I know it sounds far fetched, but it could happen.

That's just me though. Why take a chance on having ANYTHING containing gluten in my house? I never even used to get digestive symptoms, but after the cookie crumb incident I am more careful than ever. I HATE throwing up!

[eers03]

I visited Dr. Murray at Mayo. He is incredibly thorough, knowledgeable, and personable. I too was concerned about who to trust with what I'm experiencing. I plan to go back for follow-up, it was worth it for me. He even answered some questions that I didn't know I had! He's great. Hope that helps. Good luck!

[cahill]

You are not 100% gluten free if you are eating out. There is no way to control a restaurant kitchen and/ or staff.

As mentioned above ,, you also may want to consider other intolerances , such as dairy and soy, may be contributing to your villi atrophy .

Doing a STRICT elimination diet ( as you mentioned ) is overwhelming and (as I know 1st hand ) not for the faint of heart, but your health is worth it.

For some of us a gluten free diet is all that is needed , for some of us it takes more,,,,,,,, , for some of us it takes much , much more .

[gatita]

I second the SIBO check. Just read one study saying that a large percentage (sorry can't recall the number) of celiacs who haven't responded to gluten-free diet have SIBO. This wouldn't account for high blood antibody levels, of course, but could account for continuing GI issues because they can be quite similar.

[pricklypear1971]

And a combo of SIBO with another AI disease could account for elevated antibodies on one gluten blood test (sorry, brain is drawing blank...Ttg?).

But most likely, it's gluten. Somewhere.

[designerstubble]

Well I learnt something new today. Diary can cause villi atrophy????

Shock horror!

Why does everything I've read say that dairy doesn't damage?!

And soy can cause atrophy too? I thought it was just an irritant?

Anyone got any links to read? Very interested to know more!

[Bubba's Mom]

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

There's an article here on this site's info pages that tells of other causes for villi flattening.  There are others too, that you can find if you type causes for villi flattening into the search box here.

[designerstubble]

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

There's an article here on this site's info pages that tells of other causes for villi flattening. There are others too, that you can find if you type causes for villi flattening into the search box here.

Thanks bubba!

This is very interesting. I feel so naive not knowing all of this. Everything I'd read up to now said that dairy didn't cause damage.

So... All of these extra things that cause villous atrophy,.... Do they also cause other symptoms too or can they also be latent or silent line celiac?

[Bubba's Mom]

Thanks bubba!

This is very interesting. I feel so naive not knowing all of this. Everything I'd read up to now said that dairy didn't cause damage.

So... All of these extra things that cause villous atrophy,.... Do they also cause other symptoms too or can they also be latent or silent line celiac?

Once the villi start to erode you won't be absorbing nutrients.  Over time some symptoms should start to show because of that.  Also, the  hormone (cck) that tells your gallbladder to squeeze and pancreas to release digestive enzymes is made and sent from the small intestine.  With damage there that function doesn't work..or doesn't work well.  Other digestive enzymes like for digesting milk are made on the tips of the villi too, so if they're gone, you won't be able to digest milk properly. 

With severe villi flattening you might also get proteins leaking through the wall of the intestine causing food intolerances.

 

Your symptoms could be severe or latent.  Each person is different.  For example, you could have joint pain, but not noticeable digestive issues.  You could have mood swings, GERD, insomnia, anxiety, ect. depending on which vitamins/minerals you're able to absorb. It all depends on how much damage there is, if it's patchy or total, and for how long you've had the problem.

 

I think generally, when flattened villi are seen by an endoscope, it's assumed that it's celiac.  If a person goes gluten-free and their symptoms don't improve, they start looking at other causes.  Sometimes it's a combo of celiac and other intolerances, or yeast /bacterial overgrowth.

[dilettantesteph]

Some celiacs such as my son and I react to even the proposed accepted levels.  In the study done which determined those levels to be safe, one participant had to be excluded because he reacted to those levels.  While they are safe for the vast majority of celiacs, they are not safe for absolutely all celiacs.  Some of us need to be on a diet of produce and unprocessed meats, and even be careful at that.  Since you have continued villous atrophy on the gluten-free diet, you are likely to also be in that category. 

 

I saw Dr. Green speak recently and he has nutritionists who will work with you to remove trace gluten from your diet when you are having these kinds of issues.

 

The other option, if you are symptomatic enough to be able to do this, is to keep a food/symptom journal.  Go on a very safe diet of produce and unprocessed meats until you have no symptoms.  Then try adding foods one per week.  It can take that long for a reaction to be noticed.  That will let you know what foods are safe for you.

 

You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.

 

I hope that you find a solution that works for you.

[cahill]

dilettantesteph said:You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.""

 

 

 

 

 

 

 

The issue I have with this suggestion is ; if you are still symptomatic ,  damage is still occurring inside your body. Just taking a medication to cover the symptoms is not helpful IMO .

My suggestion would be a strict elimination diet .

[designerstubble]

Once the villi start to erode you won't be absorbing nutrients. Over time some symptoms should start to show because of that. Also, the hormone (cck) that tells your gallbladder to squeeze and pancreas to release digestive enzymes is made and sent from the small intestine. With damage there that function doesn't work..or doesn't work well. Other digestive enzymes like for digesting milk are made on the tips of the villi too, so if they're gone, you won't be able to digest milk properly.

With severe villi flattening you might also get proteins leaking through the wall of the intestine causing food intolerances.

Your symptoms could be severe or latent. Each person is different. For example, you could have joint pain, but not noticeable digestive issues. You could have mood swings, GERD, insomnia, anxiety, ect. depending on which vitamins/minerals you're able to absorb. It all depends on how much damage there is, if it's patchy or total, and for how long you've had the problem.

I think generally, when flattened villi are seen by an endoscope, it's assumed that it's celiac. If a person goes gluten-free and their symptoms don't improve, they start looking at other causes. Sometimes it's a combo of celiac and other intolerances, or yeast /bacterial overgrowth.

Thank you that is so interesting to know. I feel so silly on here sometimes, I feel I ought to know all this stuff.

I think I must obviously be in the severe villi flattening category then as I have become intolerant to virtually everything since becoming gluten free 4 months ago. My biopsy (it was done even though I had been gluten free for 2months already) and came back marsh 3. I had continued to have stomach pain until I cut out dairy, then corn evoked a nasty reaction, so on etc. I had no idea that dairy caused damage. Everything I have read up until this point suggested otherwise!

I am on strict non processed now (am veggie), but can't have seeds or citrus due to asthmatic reactions recently. I am wondering why I'm still continuing to have problems. I still get bad stomach noises and wind no matter what I eat.

Just hoping my guts decide to start playing nicely soon as I'm not sure what else to do!

Thanks for the info, really appreciated

Kimmy

[mushroom]

To get your guts to play nicely you have to treat them nicely.  High quality probiotics; digestive enzymes; L-glutamine, all will help them out, to repopulate your gut with the good guys, to digest your food, and to promote healing.   (Providing you have killed off your SIBO )

[dilettantesteph]

dilettantesteph said:You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.""

 

 

 

 

 

 

 

The issue I have with this suggestion is ; if you are still symptomatic ,  damage is still occurring inside your body. Just taking a medication to cover the symptoms is not helpful IMO .

My suggestion would be a strict elimination diet .

 

I understand completely.  I go to crazy extremes myself to eliminate gluten.  I recognize the fact that not everyone wants to do that so I wanted to offer several options.