stef_the_kicking_cuty

I mean, how do you proof, that there is pain with no or less than the limit antibodies?

He can run a blood test. The kid would just be stung and go through the agony for nothing, cause he's not making enough antibodies. He hasn't done so the last two tests and neither did any of the other members of his family. It would just be the same old result to confirm the same result everyone else did before her. When does it stop and when is this child believed, that he does indeed have pain? It's not an attack, just my two cents.

And how would I word that, when I call? "Can I schedule a consultation over the phone?" "Why do you need that?" "Cause I can't come to the actual appointment?" "Well, that's not our problem?"

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.