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stef_the_kicking_cuty

Celiac specialist in middle PA area

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I haven't been on here in forever, even though I used to be a persistent daily contributor back when I was diagnosed. I have mastered my own glutenfree life to the point, where I felt, I didn't need any more help and because I'm always busy, I got carried away with other things. However the reasons I'm coming back here today are my son. He's 8 now and over the course of the last two years he had strange things going on like soiling his underpants and about 6 months ago he also started complaining about headaches and a bellyache. Now I myself was diagnosed with celiac disease on 07/21/2004. My mother has problems with gluten and my maternal grandmother passed away with colon cancer, but was never diagnosed with anything gluten related. However since that was way back, they probably didn't know yet. Today we assume, that there was something going on. Now my son has problems. I did a stool test with EnteroLab last year (2015) in August for gluten, eggs, soy, and milk. Dr. Frederick Ogunji performed the test and Dr. Kenneth Fine interpreted the results. The normal IgA value is under 10 units. Gluten was 7, eggs was 2, milk was 1 and soy was 1 unit. While all values were under 10, it also said at the bottom of the result papers, that if the patient exhibits pain related to gluten sensititvity despite a negative result, a gluten-free diet may help you. Now our situation is such, that the little guy goes back and forth between his dad and me and his dad "doesn't believe" in the glutenfree diet and thinks, his son is making up the pain just to get attention (believe me, that is not the case). So when I presented him with the test results last year, he didn't bother even looking at the paper. His reply was, it could be one of the other 3 foods, as well, which is correct. So to rule that out, I did four different food challenges with our son every time I got him back from his dad over the next four months. Every time I received him back from his father I would exclude three, that I picked and only introduced the fourth food item and nothing else. Our son's pain and symptoms would completely disappear, when egg, soy, and milk were given, but when gluten in any form was given, his pain and symptoms did not disappear. I took my findings and went to our son's doctor. She diagnosed him with a gluten sensitivity, which of course his father is now challenging by going to a celiac specialist. However he picked a celiac specialist, which is 3-4 hours away and I'm not getting of work, it's not fair for my son, that I don't attend and he also wants mommy to come, and I have a feeling that the other side may leave important information out, when talking to the doctor, so I was wondering, if there isn't a celiac specialist closer. Isn't Dr. Fasano a celiac specialist? Does he diagnose celiac disease only or also gluten sensitivities? It has to be a specialist. Nothing else would count in court. However since there is a possibility that it's a sensitivity and not celiac, will Dr. Fasano do? Are there specialists closer to the Harrisburg area, where I'm from?

Thanks so much for all the replies.

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How was your diagnosis done? Did you have a GI doc & he did a blood panel and endoscopy? I am asking because if that's the case, then it is recommended that all first degree relatives of dx'd celiacs get tested every 2 years UNLESS symptoms present sooner.

http://www.cureceliacdisease.org/faq/what-is-the-prevalence-for-others-in-my-family-to-have-celiac-disease-since-ive-been-diagnosed-with-it-2/

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I had the blood test, which was only slightly elevated. However because it was not over the limit I was diagnosed by an elimination diet and my symptoms. I had excruciating pain, which completely disappeared, after going glutenfree. My son also had a blood panel done, when he was a toddler, which also only was slightly elevated. He is starting to have the same pain, that I have, whenever I was on gluten.

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Also I wanted to say, I'm aware of the prevalence in relatives. That's why I wrote down all of my relatives, who are/were affected. I also have to say, that my entire family apparently can not produce enough anti-bodies. My mother went through the blood test numerous times and I think, she had 5 or so endos. The blood test was just like mine and my son's and the endos didn't show anything. Yet she also has problems. My own doctor decided to diagnose me based on the symptoms, exclusion diet, and only slightly elevated blood test, because he, like many other on this subject educated doctors, agree, that some patients are only over the limit or show damage, if it's severe and he didn't want me to drag on for years and years as my pain already was debilitating. There is also a chance, that my family and I are some of these rare patients, who can not make enough anti-bodies as was stated in the result paper of Dr. Kenneth Fine. He said, in rare cases it occurs, that you have a patient, who is incapable of making enough anti-bodies, no matter what. What do you do then? Fact is, that my pain completely disappeared and so do my mom's and son's symptoms, when they are off gluten.

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I understand. Some people are IgA deficient & that causes problems with the blood tests. I am glad your doc recognized what was going on. You might find this interesting reading. In fact, you might want to print it out & give it to your ex husband to read. These are top experts in the field -- highly, highly respected!

http://www.foodsmatter.com/coeliac-disease/gluten-intolerance/gluten-summit-marsh-fasano-07-14.html

I think Dr. Fasano would be your man if you can get in to see him or one of his team.

Since you were dx'd in 2004, I don't think they were doing the DgP tests then. That is something that could be a factor here with you & your family. Also, it seems the DgP tests are more accurate for kids. That's the way I understand it. Here is the full, current celiac serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

Is Philly too far for you? There is this:

http://www.chop.edu/centers-programs/center-celiac-disease#.Vv8BtKuG-Ww

I did a little search on the celiac disease foundation website for GI's within 100 miles of Harrisburg & came up with a bunch:

https://celiac.org/celiac-disease/provider-directory/?cdf-query-name=&cdf-specialty=gastroenterology&cdf-query-loc=harrisburg%2C+pa&cdf-geo-lat=&cdf-geo-lng=&cdf-query-dist=100&cdf-gender=&cdf-language=&cdf-insurance=&cdf-hospital=

There are even a few specializing in Children in the Celiac Disease Center @ Johns Hopkins in Baltimore.

There is also this:

http://hospitals.jefferson.edu/departments-and-services/celiac-center/our-doctors/

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I didn't know about the IgP tests. I think, the only thing, that was done on me in 2004 and on my son in 2009 was the Tissue Transglutaminase and the Gliadin, but I could be wrong. It's been so long. Well, me for my part, I am NOT going through the agony and being exposed to gluten again, because I have my doctors diagnosis now, but it's sure something to look for my son. I'm currently in contact with my lawyer as to see, if I can still make an appointment with Dr. Fasano now as my ex got finally back to me with a date and time in Pittsburgh. Thanks for posting the reading material for me. You're a sweetheart, but the last time I presented him with reading material it didn't end well, so I may just not do that, as I dislike being cursed and yelled at. He asked me, where my PhD was and cursed and yelled at me in the most colorful language the last time I attempted it. Since I'm a school bus driver I will unfortunately only receive 2 days off per school year. While I have not taken a day off yet, I don't think, I will receive that day off, because now we're 4 drivers short in our office. Pittsburgh is 3-4 hours from me as I'm near Harrisburg. I get off the bus at 7.30am. While the appointment in Pittsburgh is at noon, I could make it there no problem, but then I would miss my afternoon run at 2pm. My ex lives where I am. We are only 5 miles apart. Making an appointment in Pittsburgh is absurd. It's his day off, but I won't get off. I'm afraid, he may not be presenting the doctor there with all the facts and prior findings (like the missing or low antibodies), so if the test is negative, we're at square one again. I asked my lawyer, if I can go ahead and make an appointment with Dr. Fasano despite him making one in Pittsburgh. Maryland is only an hour from us, so I have to assume, that the Pittsburgh appointment was made to keep me from participating.

Thanks so much for all the info. You're an angel!

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I went over the first link you presented. I liked, what Dr. Fasano had to say, but I'm ESPECIALLY interested in what Dr. Marsh had to say. I will surely print that out. I know, Dr. Fasano is one of the celiac disease specialists, that is regarded as one of the #1's here in the US, possibly in the world. I'm happy to see, that that hasn't changed. I will certainly print this out and give to my lawyer and my son's doctor and present one (I'm sure, you can e-mail or fax it there) to the children's hospital in Pittsburgh, as I don't think they are specialists.

Thanks so much for sharing.

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You're welcome! I surely hope you can get this resolved.

I hope you can get in with Dr. Fasano. That's going to be many months wait I would think. His team should be as good as him since they are under his direction.

 

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So you think, I should just make an appointment there at the center in Maryland with any of his other team members? Or just an appointment and see, who we get? Also, while my ex got back to me with a time and date and which hospital, he did NOT specify the name of the doctor, as well as the address. I know, there could be another location, so just saying, "it's at the Children's Hospital of Pittsburgh" won't help as they have other centers and locations, that are connected with this hospital. I need to have the EXACT address. This morning I called to ask him what the name of the doctor was and what his sub-specialty was. He said, he doesn't know and that he's a gastroenterologist. Upon me asking, if he's a celiac specialist, he got rude with me and started cursing again. I don't see the point to drive 3 hours to Pittsburgh for a regular gastroenterologist, when we have like a gazillion here in our area. The only reason I see, is that he did this on purpose, so I can't come and put all the paperwork on the table we have so far. Is there anybody in here, who knows, if they have gluten or celiac specialists at the Children's Hospital in Pittsburgh? That would save me a lot of searching and asking around, which I shouldn't have to, had I been properly updated.

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I don't know what is closer to you.  but the children's hospital in Philadelphia has a Celiac center.  I have seen them at International Celiac Disease Symposiums and... if I remember correctly, the head doc's daughter has Celiac.

 

Maybe he is going where his insurance will pay?

Edited by kareng

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While Philly is closer, I will not be able to make it there either, because they always have bad, bad traffic jams and I can't risk losing my job. I went to my boss today to let her know, what's going on. Despite my best efforts I will not be able to get off. The one in Maryland is the closest. I also called the Children's Hospital of Pittsburgh to find out which doctor it is and some more information. I got everything I wanted, except of their sub-specialties. They don't have any sub-specialties there. They are all "just" gastro doctors. She told me, that they have celiac patients there all the time. Yes, but I bet, they are all actually showing anti-bodies, which the people in our family do not, or only very, very slightly, so it's not over the limit, where it would show the test as positive. That doesn't negate the fact, that my son is in pain and that the pain disappears, when he's off gluten. And no offense, but some regular gastro doctors are idiots. We've had our fair share of them. Why go to a regular gastro doctor three hours from here, when he could visit one here, too? Why not go to a specialist? It's because he doesn't want me there. Cause I could present valuable info, that he isn't giving the doctor. It's also not the insurance, as our son is insured by one of the major companies, which are pretty much accepted everywhere.

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So I went to google maps... the Children's Hospital of Philly is about 2 hours and 6 minutes from us. That would probably even be doable, if we get an appointment between 10am and 11.30am and it's guaranteed, that we're done till 11.30am and there's zero traffic jam. But hey... it's Philly, lol. Same with the Thomas Jefferson University Hospital. That's in Philly also and about 2 hours and 9 minutes from us. Dr. Kane, who's a celiac specialist is in Frederick, MD, which is about 1 hour and a half. And even the Celiac Disease Center in Baltimore is only 1 hour and 40 minutes from us, which increases the chances dramatically, that we get there and back in time. I know, this is very important, but my job is kinda, too, cause I can't get fired and live from under a bridge. I need my job to provide for my child and me. Since last Friday we're now FOUR drivers short and the chances, that I get off are pretty slim. In fact my boss said today, BIG NO. 

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Also as a school bus driver I could go in the summer vacation, but don't want to wait that long, cause my son is in pain.

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3 hours ago, stef_the_kicking_cuty said:

While Philly is closer, I will not be able to make it there either, because they always have bad, bad traffic jams and I can't risk losing my job. I went to my boss today to let her know, what's going on. Despite my best efforts I will not be able to get off. The one in Maryland is the closest. I also called the Children's Hospital of Pittsburgh to find out which doctor it is and some more information. I got everything I wanted, except of their sub-specialties. They don't have any sub-specialties there. They are all "just" gastro doctors. She told me, that they have celiac patients there all the time. Yes, but I bet, they are all actually showing anti-bodies, which the people in our family do not, or only very, very slightly, so it's not over the limit, where it would show the test as positive. That doesn't negate the fact, that my son is in pain and that the pain disappears, when he's off gluten. And no offense, but some regular gastro doctors are idiots. We've had our fair share of them. Why go to a regular gastro doctor three hours from here, when he could visit one here, too? Why not go to a specialist? It's because he doesn't want me there. Cause I could present valuable info, that he isn't giving the doctor. It's also not the insurance, as our son is insured by one of the major companies, which are pretty much accepted everywhere.

 

2 hours ago, stef_the_kicking_cuty said:

So I went to google maps... the Children's Hospital of Philly is about 2 hours and 6 minutes from us. That would probably even be doable, if we get an appointment between 10am and 11.30am and it's guaranteed, that we're done till 11.30am and there's zero traffic jam. But hey... it's Philly, lol. Same with the Thomas Jefferson University Hospital. That's in Philly also and about 2 hours and 9 minutes from us. Dr. Kane, who's a celiac specialist is in Frederick, MD, which is about 1 hour and a half. And even the Celiac Disease Center in Baltimore is only 1 hour and 40 minutes from us, which increases the chances dramatically, that we get there and back in time. I know, this is very important, but my job is kinda, too, cause I can't get fired and live from under a bridge. I need my job to provide for my child and me. Since last Friday we're now FOUR drivers short and the chances, that I get off are pretty slim. In fact my boss said today, BIG NO. 

 

Sorry?   You don't have to justify not using the doc I mentioned.  Maybe it will help someone in the future who is looking for a GI.  I can't really help you with all the other problems.  I hope you find some help for your little boy.   

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Steph,  you sound so anxious, my heart goes out to you.  Perhaps, if you look at this situation a little differently, you can find some peace.

Remember, that while you may not be able to attend the doctor appointment made by your husband, your SON will be there.  

Your son (I'm assuming he's fairly normal) should be able to communicate to the doctor that he gets sick after eating gluten. He can say his mom believes it's Celiac Disease.  Have him give the doctor your phone number.  Have your son tell about your food challenges you've done.  Practice with him, coach him.  Teach him to be his own health advocate.  A doctor worth his salt will listen to his patient.

Won't your ex have to eat a lot of crow if this doctor comes to the Celiac diagnosis without your presence?   

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And since you now know which doctor he's going to be seeing, can't you write out his symptoms, his history, the family history and your diagnosis and either snail mail it or email it to be put in his file?

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15 hours ago, knitty kitty said:

Steph,  you sound so anxious, my heart goes out to you.  Perhaps, if you look at this situation a little differently, you can find some peace.

Remember, that while you may not be able to attend the doctor appointment made by your husband, your SON will be there.  

Your son (I'm assuming he's fairly normal) should be able to communicate to the doctor that he gets sick after eating gluten. He can say his mom believes it's Celiac Disease.  Have him give the doctor your phone number.  Have your son tell about your food challenges you've done.  Practice with him, coach him.  Teach him to be his own health advocate.  A doctor worth his salt will listen to his patient.

Won't your ex have to eat a lot of crow if this doctor comes to the Celiac diagnosis without your presence?   

Thanks for your concern. I AM very anxious. Anxiety is a by-product of the gluten inheritance line in our family. We all have that. My son is only 8 year old and I'm afraid, that his dad will keep talking over him and won't let him finish talking to the doctor, because he did that with me, as well. Whenever our son says, he's in pain, he basically shooshes him and forbids him to talk. When I presented him with the gluten sensitivity results of our son's doctor, he actually told his son, what he's not allowed to eat from now on, because he "dared to open his mouth". It's actually gotten to the point, that he's now scared to say something.

And I agree, he would have to eat a lot of crow, if our son gets a Celiac diagnosis. That may not happen though, as we all have low anti-bodies and all our tests were basically negative and this gastro is not specialized in gluten sensitivity or celiac disease. And most of the "regular" gastros don't know, that there can still be a problem even if no or little anti-bodies. The last gastro we went to in this area blatantly told us, that we need to rule out Encopresis and he doubts, that it's anything to do with gluten. I don't believe it's Encopresis, when his underpant soiling goes away completely when he's two days on a gluten free diet. So regular gastros know little to nothing about this subject in my honest opinion.

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15 hours ago, squirmingitch said:

And since you now know which doctor he's going to be seeing, can't you write out his symptoms, his history, the family history and your diagnosis and either snail mail it or email it to be put in his file?

I found everything out through a telephone call. And the doctor will receive copies of everything, including my phone number, my lawyers number, if I have to, and some other things I've written down. Let's just hope, she (it's a she) reads it thoroughly before the appointment, cause some doctors are so busy, they just fly over it real quick the first 5 minutes before they see you.

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15 hours ago, squirmingitch said:

And since you now know which doctor he's going to be seeing, can't you write out his symptoms, his history, the family history and your diagnosis and either snail mail it or email it to be put in his file?

This is a great idea.  I don't know why I didn't think of it.  YOu might even be able to have a phone consult with the doctor first.

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I've also received the note back from my boss this morning, that I won't get off under any circumstances, cause she doesn't have any additional drivers. I will notify HR and headquarters, but I doubt, that will help.

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I'm sorry, when I seem upset (and I am), but this entire thing seems so absurd and it IS. There is absolutely NO reason to go to a gastro without sub-qualifications to Pittsburgh, when we have at least a gazillion here.

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7 minutes ago, kareng said:

This is a great idea.  I don't know why I didn't think of it.  YOu might even be able to have a phone consult with the doctor first.

And  THIS is a great idea Karen! Stef, see if you can arrange a phone consult with the doctor prior to the appointment. 

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10 minutes ago, stef_the_kicking_cuty said:

I found everything out through a telephone call. And the doctor will receive copies of everything, including my phone number, my lawyers number, if I have to, and some other things I've written down. Let's just hope, she (it's a she) reads it thoroughly before the appointment, cause some doctors are so busy, they just fly over it real quick the first 5 minutes before they see you.

Are you sending records yourself?  You might want to make sure the "best" stuff is right on top and highlight the pages.  But, most medical doctors will not find any of Dr Fine's tests to be valid, so I wouldn't put those first.

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Dr. Fine's results are the only ones I have. Even though my son's doctor had slightly elevated blood tests done on him as a baby, apparently his doctor did not keep those, cause she didn't have it in her records, last time I asked. On top of what Dr. Fine found, I did all of my son's 4 diet challenges over the course of four months and I've kept a food diary since the beginning of the year. And everything shows, that he clearly improves on withdrawing gluten from the diet.

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1 minute ago, stef_the_kicking_cuty said:

Dr. Fine's results are the only ones I have. Even though my son's doctor had slightly elevated blood tests done on him as a baby, apparently she did not keep those, cause she doesn't have it in her records. On top of what Dr. Fine found, I did all of my son's 4 diet challenges over the course of four months and I've kept a food diary since the beginning of the year. And everything shows, that he clearly improves on withdrawing gluten from the diet.

Sounds like it is a good thing he is seeing a GI.  He can start with the basic blood tests based on symptoms.  You could certainly send a 1 page or less note detailing his symptoms and response to a gluten-free diet.  If it's too wordy, it won't all get read - so make it short and sweet.  Good luck

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