Has Anyone Seen Dr. Fasano At Univ Of Md

[shayre]

I am tired of getting no answers here in Indianapolis, so I'm thinking about making an appt with Dr. Fasano in MD. He is the leading expert and researcher in celiac disease and gluten sensitivity. Has anyone else seen him?

[GFinDC]

Yes, I have seen him. Unfortunately I had to wait 3 months for my appointment and went gluten-free in the meantime. So my blood tests were negative but I had one of the genes. I think it was the furry one. Anyway he listened to my symptoms and said they sounded like celiac disease to him. He also brought in a nutritionist later to talk to me about gluten-free eating. That was over 3 years ago. Last time I saw him was at the gluten-free labeling summit in DC this year, where they were building the worlds largest gluten-free cake. He looked about the same. I think he ate some of the cake too. At the time I saw him his celiac department was part of the pediatric section at UMD. I think they have a dedicated celiac section now though. But if you call for an appointment and the pediatrics section answers, that's why.

[kareng]

I am tired of getting no answers here in Indianapolis, so I'm thinking about making an appt with Dr. Fasano in MD. He is the leading expert and researcher in celiac disease and gluten sensitivity. Has anyone else seen him?

Would Chicago be closer or easier to get to? Open Original Shared Link

I haven't seen them but they helped us figure out some odd blood results.

[shayre]

Would Chicago be closer or easier to get to? Open Original Shared Link

I haven't seen them but they helped us figure out some odd blood results.

Yes, that would be more convenient. What were odd blood tests?

[kareng]

Yes, that would be more convenient. What were odd blood tests?

My kids had some blood tests for Celiac that they helped us figure out by email.

[shayre]

Yes, I have seen him. Unfortunately I had to wait 3 months for my appointment and went gluten-free in the meantime. So my blood tests were negative but I had one of the genes. I think it was the furry one. Anyway he listened to my symptoms and said they sounded like celiac disease to him. He also brought in a nutritionist later to talk to me about gluten-free eating. That was over 3 years ago. Last time I saw him was at the gluten-free labeling summit in DC this year, where they were building the worlds largest gluten-free cake. He looked about the same. I think he ate some of the cake too. At the time I saw him his celiac department was part of the pediatric section at UMD. I think they have a dedicated celiac section now though. But if you call for an appointment and the pediatrics section answers, that's why.

Did he actually help you? I don't want to book flights to MD and have hotel expenses if he wont' be able to help me. I have had negative blood tests, 2 rounds of negative biopsies and a pill camera. Nothing showed, but I continue to have severe celiac symtoms. I have both genes for celiac disease, and I'm lactose intolerant...but I've been intolerant of everything still. I have been gluten-free for almost 2 yrs now, so I am confused about why I still can't digest most foods after all of this time. I am very careful, and our whole household recently went gluten free. If I'm understanding correctly...he is the leading researcher on gluten sensitivity. I thought that I read an article where he states that there is a group of people with severe celiac symptoms that keep testing negative, and I thought that's where his recent research is going. I was hoping that he could shed some light on things, and if he couldn't answer...then maybe no one could.

[shayre]

My kids had some blood tests for Celiac that they helped us figure out by email.

Do you mind telling me what they were, so that maybe I can compare them to mine?

[GlutenFreeManna]

Did he actually help you? I don't want to book flights to MD and have hotel expenses if he wont' be able to help me. I have had negative blood tests, 2 rounds of negative biopsies and a pill camera. Nothing showed, but I continue to have severe celiac symtoms. I have both genes for celiac disease, and I'm lactose intolerant...but I've been intolerant of everything still. I have been gluten-free for almost 2 yrs now, so I am confused about why I still can't digest most foods after all of this time. I am very careful, and our whole household recently went gluten free. If I'm understanding correctly...he is the leading researcher on gluten sensitivity. I thought that I read an article where he states that there is a group of people with severe celiac symptoms that keep testing negative, and I thought that's where his recent research is going. I was hoping that he could shed some light on things, and if he couldn't answer...then maybe no one could.

Have you tried an elimination diet to see if you are intolerant of any other foods besides gluten and dairy? Or have you had any food allergy testing done? From reading some of your other posts it sounds like you are eating a lot of processed foods. If you have another intolerance (which doesn't show up in allergy testing) it will be very difficult to track down while eating gluten-free convience and prepackaged foods. A nutrionist that is knowledgable in elmination diets may help you more than a celiac specialist at this point. Many of the people on this board could help walk you through doing an elimination diet as well.

[shayre]

Have you tried an elimination diet to see if you are intolerant of any other foods besides gluten and dairy? Or have you had any food allergy testing done? From reading some of your other posts it sounds like you are eating a lot of processed foods. If you have another intolerance (which doesn't show up in allergy testing) it will be very difficult to track down while eating gluten-free convience and prepackaged foods. A nutrionist that is knowledgable in elmination diets may help you more than a celiac specialist at this point. Many of the people on this board could help walk you through doing an elimination diet as well.

Oh, yes! I've eliminated almost all foods. I kept a food diary, and got down to almost nothing to feel no or little turmoil. I felt a lot better going gfand dairy and soy free... and then better again when the household went gluten-free, but I still need to get better still. I really don't eat processed foods. I opted to TRY the Amy's mac and cheese out of desperation for some quick carbs. I seemed okay with it, so I tried it a couple of more times. I have had it several times until recently when I feel like I might have been glutened. I eat no gluten, no dairy, no soy, no corn, recently no potatoes or nightshades, nothing fermented and only low fructose. That leaves me meat, fish, brown rice and brown rice products (pasta, rice cakes, cereal), recently started on sweet potato, salad that is limited on toppings, olive oil, and fruits like berries, banana and orange. I only drink water, and almond milk. I have been drinking one brand of org decaf coffee that I find doesn't bother me much. That is ALL that I eat. I also eat mostly organic. I tried Quinoa, but it appears to bother me. Other than that, my questions about products have come from a desire to make my family happy with gluten-free foods.

I just don't know why I still get bloated with all of my foods after all of this time. It seems to be worse again...I don't know. I feel like I need to blow through a bottle of digestive enzymes and take them with every meal in order to keep it in check. At $30 a bottle, that gets expensive. I take probiotics and a ton of other vitamins...all of which I checked carefully for any offensive ingredients. I am extremely careful, though I know that some people on this site have to be absolutely mind-blowingly careful!

I should post this as a question in itself. My problem is that one GI specialist says that he knows that I have celiac disease, but can't prove it on paper. His explaination of my lack of digestion is because of damage. I saw another secondary GI specialist who says that there is no damage. I question her though, because she opted to say that she can only treat me for IBS since she can't find anything else. She also said that there is no such thing as "bloating". Yeah, measure my belly and then give me a piece of cheese...then have me come back in a few hours when I look 8 months pregnant! Right? So if there is no damage, then it doesn't make sense why I can't digest foods...but I am better gluten-free. I feel that I just need some answers. This site has helped me to be functional and better, when I was at a point of not functioning well at all. Now I just need to figure out the rest...

[GlutenFreeManna]

Oh, yes! I've eliminated almost all foods. I kept a food diary, and got down to almost nothing to feel no or little turmoil. I felt a lot better going gfand dairy and soy free... and then better again when the household went gluten-free, but I still need to get better still. I really don't eat processed foods. I opted to TRY the Amy's mac and cheese out of desperation for some quick carbs. I seemed okay with it, so I tried it a couple of more times. I have had it several times until recently when I feel like I might have been glutened. I eat no gluten, no dairy, no soy, no corn, recently no potatoes or nightshades, nothing fermented and only low fructose. That leaves me meat, fish, brown rice and brown rice products (pasta, rice cakes, cereal), recently started on sweet potato, salad that is limited on toppings, olive oil, and fruits like berries, banana and orange. I only drink water, and almond milk. I have been drinking one brand of org decaf coffee that I find doesn't bother me much. That is ALL that I eat. I also eat mostly organic. I tried Quinoa, but it appears to bother me. Other than that, my questions about products have come from a desire to make my family happy with gluten-free foods.

I just don't know why I still get bloated with all of my foods after all of this time. It seems to be worse again...I don't know. I feel like I need to blow through a bottle of digestive enzymes and take them with every meal in order to keep it in check. At $30 a bottle, that gets expensive. I take probiotics and a ton of other vitamins...all of which I checked carefully for any offensive ingredients. I am extremely careful, though I know that some people on this site have to be absolutely mind-blowingly careful!

I should post this as a question in itself. My problem is that one GI specialist says that he knows that I have celiac disease, but can't prove it on paper. His explaination of my lack of digestion is because of damage. I saw another secondary GI specialist who says that there is no damage. I question her though, because she opted to say that she can only treat me for IBS since she can't find anything else. She also said that there is no such thing as "bloating". Yeah, measure my belly and then give me a piece of cheese...then have me come back in a few hours when I look 8 months pregnant! Right? So if there is no damage, then it doesn't make sense why I can't digest foods...but I am better gluten-free. I feel that I just need some answers. This site has helped me to be functional and better, when I was at a point of not functioning well at all. Now I just need to figure out the rest...

An elimination diet is sort of the opposite of the process you have described (if I'm undersatanding you correctly). Instead of eliminating foods one at a time you start out with only 3 or 4 foods that you know that you can tolerate (so for example: turkey, sweet potatoes and green beans). Eat those only for a week or two and then add a new whole food in one per week. If you don't feel better on those then change foods and start again. DOn't add any new foods until you are sure the first ones you are eating don't give symptoms. It's also recomended that your avoid the top 8 allergens when choosing your starting foods. Did you do something like this already? I'm only guessing based on the foods you listed in your post, but if bloating is your main symptom you may be sensitive to brown rice or something in the almond milk.

I know my advice is not what you were asking for here but I really think that you will be wasting money and time by going to another celiac specialist. Are you trying to get an "official" celiac diagnosis for some reason? What are you hoping to get out of seeing a specialist?

[GFinDC]

Did he actually help you? I don't want to book flights to MD and have hotel expenses if he wont' be able to help me. I have had negative blood tests, 2 rounds of negative biopsies and a pill camera. Nothing showed, but I continue to have severe celiac symtoms. I have both genes for celiac disease, and I'm lactose intolerant...but I've been intolerant of everything still. I have been gluten-free for almost 2 yrs now, so I am confused about why I still can't digest most foods after all of this time. I am very careful, and our whole household recently went gluten free. If I'm understanding correctly...he is the leading researcher on gluten sensitivity. I thought that I read an article where he states that there is a group of people with severe celiac symptoms that keep testing negative, and I thought that's where his recent research is going. I was hoping that he could shed some light on things, and if he couldn't answer...then maybe no one could.

Hi,

When I went to see him I was hoping to get a diagnosis. Of course not eating gluten for 3 months nixed that idea. So what I got was his opinion that I probably have celiac, based on the symptoms I described and the positive changes after going gluten-free. If you want test results of some kind you will need to go back on gluten for a few months to get retested. No gluten in your system equals reduced antibodies so nothing to test. The tests have false negatives sometimes so there is no guarantee you will ever test positive.

I had a good response to gluten-free at first but still had 3 years of recurring GI symptoms. I did 3 separate elimination diets to find my food intolerances, the worst of which is soy. I would find one food that caused me problems and then get better and then get sick again and do another elimination diet and find another problem food. Finally I found soy was a problem and eliminated it and got much better. I really think it was the problem casing the other food intolerances to appear actually, and would eliminate it first given a do-over. But we all know how that goes, no do-overs. In this process I ended up with a mostly whole foods diet.

I eat meat, fish, veggies (minus nightshade and celery, carrots, turnips). fruit, nuts (except walnuts), Once in a while I will get a processed gluten-free food item but not very often. Enjoy Life is a good company in my book and Lara bars are ok too. There are a few other items I get too, but is very limited.

I think an elimination diet might help you. If you are reacting to one of your foods you will continue to have GI symptoms until you get rid of it. There is no standard list of bad foods that fits all of us, we each have to test our own bodies to find our food issues. It sounds like you have made some recent positive changes, like reducing CC, and stopping the Amy's mac and cheese experiment. I have experimented with dairy a few times over the years, with varying results, but never anything totally symptom free. SO I don't do dairy. If you do want to test dairy, it would be better not to use a processed food like Amy's, but a whole ingredient. So say eat some hard cheese for a week, and see how it goes with casein. Then in a few weeks try milk or ice cream and see if you tolerate lactose.

Hopefully there is something helpful in here for you.

[sreese68]

I'm only guessing based on the foods you listed in your post, but if bloating is your main symptom you may be sensitive to brown rice or something in the almond milk.

I'll second this. Brown rice gives me terrible abdominal pain 2 days after I eat it and messes my digestion up for a week or more. White rice doesn't bother me. You may want to try white rice for awhile.

[shayre]

In regards to Dr. Fasano... I guess that I just want an answer. The Dr's just confuse me when they say 2 different things! They are driving me crazy. GI #1 You have celiac disease, but I can't prove it. GI#2 (celiac disease specialist) There is no damage...your symptoms don't make any sense...I'll treat you for IBS. Rhuem doc #1 You don't have anything wrong with you. Rhuem #2 you have RA and borderline Lupus and possibly more. Rhuem #3 I can't help you...you don't have RA or Lupus. I want to rip my hair out sometimes! I guess that I just wanted an opinion from someone that I know is leading the celiac disease field.

I don't really want to go to hear him say that it's probably celiac disease, cause I know it...but there is always a question in my mind...could it be something else? Fasano intrigued me with his latest research, so I am wondering how long ago it was that you saw him? Maybe he knows more now? There is also a test that I read about in the emails form Celiac Journal where they could give you a "3 day" gluten challenge, then test a specific Tcell. The had good response in their trials, so I'm wondering if he can do that...or experiment on me. It is for the people who don't have answers and can't go on the 3 month challenge. That trial was done in Sweden though, but I don't know that dates or time frame of availabilty...and if it's reached the US. I am guessing that if it has reached the US then Fasano would be the first to do such a test. I am willing to gluten myself for 3 days to get an answer!

To the other stuff. I might try white rice or giving it up, but I have to say that I need starchy carbs or I feel like I'm going to pass out!!!! If I totally give up rice, then I have nothing. Sweet Potatoes used to tear me up, so I'm slowly trying them again. Quinoa bothers me, so where does that leave me? I forgot to mention in my diet before...I can't do nuts...and assuming beans too.

[GFinDC]

I saw Dr Fassano a little over 3 years ago. I can't say I know what tests he would do now, but you could call his office and ask. IT would be a lot cheaper to do an elimination diet first and see if it helps though.

[GlutenFreeManna]

To the other stuff. I might try white rice or giving it up, but I have to say that I need starchy carbs or I feel like I'm going to pass out!!!! If I totally give up rice, then I have nothing. Sweet Potatoes used to tear me up, so I'm slowly trying them again. Quinoa bothers me, so where does that leave me? I forgot to mention in my diet before...I can't do nuts...and assuming beans too.

This sounds like hypoglycemia. I actually have the opposite experience. When I eat higher protein and less starchy carbs I don't need to snack as often to avoid that light headed feeling. When I eat a lot of carbs I will feel better at first and then crash big time unless I eat more carbs and eat more often. If this is what is happening with you, you might try breaking that cycle of blood sugar spikes and crashing again by eating low carb or looking into the SCD diet.

Also if you really want something on paper to show you have a gluten problem you could try getting testing with Enterolab. They do not diagnose celaic disease but they will tell you if you are sensitive to gluten and you won't have to undergo a 3 month gluten challenge to do the testing. The tests are expensive ($200-300 I think) and not covered by most people's insurance but that would be much cheaper than flying to another state to see another celiac specialist that may or may not be able to do anything for you. I don't know anything about those new tests you are hoping to be able to get but the bottom line in all of this is that your body's response to gltuen is more accurate of a test than anything a doctor can do for you. If it is not celiac (or non-celaic gluten intolerance), but is "something else" you can persue testing for whatever else you might suspect without having to add the gluten back in. A celiac specialist probably is not going to order that additional testing for other disease however. He will most likely tell you the same thing as that one specialist--you seem to have celiac but there's no "paper" evidence. Do you really need that paper? Since about 30% of celiacs test false negative with the current tests (don't know anythign about that 3-day one you mentioned) it's possible you will never get that piece of paper.

[shayre]

My blood sugar usually does hang around the low side, but normal range When I was going through infertility stuff, they tried me on 2 different drugs that are really for diabetics...but they actually regulate the cycle for a lot of people with PCOS. I thought that I was going to die...literally on the first drug...long before I worked up to their recommended dosage. It regulated my cycle, but almost killed me. There were times when I couldn't lift my head off of the pillow at all, and just couldn't move. The only thing that could get me to muster up enough energy to go eat a cracker...was the thought of someone finding me in a coma or dead. Seriously, I felt like my body was shutting down. My doc immediately took me off of that med, and told me that he presently had 100 girls my size on it (and lots previously)...and he's never seen anyone react to it. I took a second brand that he thought I could tolerate....nope. One pill almost made me pass out. I tried it again years later...one pill...and I found myself explaining to my 3-4 yr old how to call 911 if I "fall asleep". I immediately called manufacturer they said that I probably had low blood sugar, and the meds dropped it further...and to go drink a glass of OJ and call back. Whew! Now I've been tested out the wazoo, and no doc has ever said that my blood sugar is out of whack. I'm not sure what to think of that.

All I know is that I need to have carbs or I will get dizzy and feel horrible...like I'm going to pass out. So now another dilemma for me is find some starchy carbs that will make my blood sugar and digestive system agree...without gluten. I did well on baked potato and potato products until I figured out through advice on this site that they give me muscular and joint pain. I would have a bake pot with turkey on it everyday. Now that's gone.

I think the GI docs don't know what else to look for at this point. They've exhausted their testing. I might give Enterolab a try, thank you. Another reason why I want an answer so bad, is because I'm making my family eat gluten-free. If their is a chance that it could be something else, then I would LOVE to give them back gluten!!!!! My kids are such picky eaters! It breaks my heart when I'm out with my kids, and I have to say "no, you can't get a pretzel...or ice cream...or pizza or burger". Especially if I'm on a "date" with my son.

[October3]

I came here to ask this same question and was glad to see this thread already going, and the link to the Chicago center as we are also midwest so Chicago would be easier. But when I was looking through the Chicago site I was disappointed to see that they consider a positive biopsy to be the only way to diagnose Celiac and our situation is we already have a negative biopsy (which, as an aside, I think was done well with no issues that someone might say it was invalid). I'm trying to find someone who will consider a celiac disease diagnosis even with a negative biospy and then tell me whether that situation fits us or not. Dr. Fasano has written article indicating that he believes celiac disease is possible even if the biopsy is negative, so for us it might make sense to travel to Maryland unless someone has another doc in the midwest who has gone on record to say celiac disease is possible even if the biopsy was negative. But I also am curious whether people in a similar situation (who have had a thorough workup by a good GI but the results are shady) have felt like the wait and the cost is worth it to travel to Maryland.

[shayre]

There is another doctor that I would also love to see. It's Dr Peter Green from Columbia University. He has made statements in a few article and gave lots of info in the Gluten-Free Diet book by the girl from Elizabeth Hasselbeck. Green wrote things in the foreward of that book So far what he has said...has fit me to a tee. For me...if I'm going to spend the money on travel to a new doc, then I might as well see the most leading ones.

[plumbago]

I am tired of getting no answers here in Indianapolis, so I'm thinking about making an appt with Dr. Fasano in MD. He is the leading expert and researcher in celiac disease and gluten sensitivity. Has anyone else seen him?

I haven't seen him yet. I had an appointment lined up for March that I had to cancel, then one in June that I had to cancel. Now it is set for October. You can only get appointments that far ahead of time, it seems. I live within DC and he is somewhere in Maryland. I'm going to have to rent a car to go to the doctor. It's very frustrating, but I suppose we should be grateful.

I personally need to get my blood tested before October, at least I feel I should. So I'm about to post a new entry asking for people's recommendations for good doctors who know about Celiac within the city of Washington.

Take care.

Plumbago

[WestyPDX]

There is another doctor that I would also love to see. It's Dr Peter Green from Columbia University.

My local GI doctor consulted with Dr. Green about my case a couple of times by phone. While I appreciated the effort both of them made, I think my doctor benefited more as a doctor than I benefited as the patient. I still got the same standard lines and had to badger my GI doc into doing some of the most basic tests even after his consultations with Dr. Green.

[Carla Spacher]

Oh, yes! I've eliminated almost all foods. I kept a food diary, and got down to almost nothing to feel no or little turmoil. I felt a lot better going gfand dairy and soy free... and then better again when the household went gluten-free, but I still need to get better still.

You may be experiencing a cross-reaction (different than cross-contamination). There are foods which mimic a gluten reaction: dairy, corn, rice, sorghum, even potato... I just blogged about this very subject and included Dr. Vikki Petersen's YouTube video. I'm not sure if I can add a link here to it or not. So, I'll just give you the title of the video and you can search for it yourself on YouTube: "Gluten intolerance & Cross Reactive Foods".

EntroLabs can test you. They have a site online.

Dr. Petersen state that it takes about 3 months for your body to heal once you've eliminated the foods. And she adds that avoiding the other grains does not have to be permanent.

I hope this helps you!