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Posts posted by stef_the_kicking_cuty

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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. 

  6. 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.

  7. 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.

  8. 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.

  9. 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!

  10. 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.

  11. 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.

  12. 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.

  13. I was diagnosed with celiac 5 days before my 28th birthday. Flashback to 21, my first painful symptoms started after a toothsurgery. Flashback again to when I was 14/15. That was the time I received braces and with them a multitude of cavities. Because most of my cavities are from that time we assumed it was, because of the difficulty brushing your teeth, when having braces. Never in a million years would I have made the connection. Thanks!

  14. I'm German, German, and some more German on both sides of my family. Even though I live in the US, I'm an immigrant. My son is the first from my stem of the family, who is born on US soil. My aunt has a couple of kids over here, but that's HER stem of the family. Everything before that is true German. Although I do believe that there must be some Viking in there somewhere, because I'm pretty much a nomad and LOVE to travel. I've seen a countries on all continents except of New Zealand and Asia and Africa only the northern part. :)

  15. Hi Aleka,

    I'm not diagnosed with CKD (yet), however I've been coming back to this forum (I've been one of the major contributing members here 9 years ago) for the last week and lurking around for more information on what my new problem is. I've also been doing my own research for about a little more than a month now, because the dark circles under my eyes kept bothering me. In addition to that 2 years ago i started getting a dull pain in my right lower back, where the kidney is supposed to be and when I drank, it disappeared. Sometimes I didn't notice it for weeks or months and then it came back again and it always disappeared with drinking some fluid. The only exception, milk seemed to aggravate it. I found an article about a month ago that said, that a dairy allergy (not a lactose intolerance, a dairy allergy... there is a difference) can cause the kidneys to have major problems in certain people in addition to dark rings under the eyes, so I thought to myself. Hm, that could be me, so let's do a challenge, which I did. I haven't had any dairy in addition to no gluten for about 3 weeks. Then I drank a cup of hot cocoa and ate a Nutella bread and wouldn't you think, the kidney pain came back. Not only that, but this time it stayed, even though I am now again not having any dairy. It gets better with more drinking, but it seems that the intervals between it disappearing and coming back get shorter. And for the first time tonight (that's why I'm up) I can feel it a little, so I came here and that's when I saw your article and now I'm wondering, if I may have this, too?

  16. I went glutenfree in 2004 and about two years ago I started to get kidney pain every once in a while. Just last month during the course of an important audition I frantically tried to get rid of the bags under my eyes with make up, which didn't work. I suck at makeup. So I came to conclusion, that it must be some kind of allergy. I went entirely dairy free about a month ago and today I drank a hot cocoa and ate a Nutella bread, and wouldn't you think... brain fog, extreme fatigue, and kidney pain a few minutes after eating it. :(

  17. Uhm, I did some research about some Cinco de Mayo food traditions in the Harrisburg area and found nothing. HOWEVER (cough) I found two Mexican Restaurants, one in Harrisburg, the other in Hummelstown, who happen to be sister restaurants, who were mentioned in a Harrisburg article to do some cool Cinco de Mayo celebrations today. And one would know they happen to offer a glutenfree menu. So needless to say, I am not only delighted, because I was craving to eat Mexican food in a restaurant and didn't dare going, because of possible language differences and misunderstandings. I'm also happy about this, because NOW I finally know, what I'm writing on. It will go something like this. "You can make this quick and easy at home..." followed by an explanation of my own personal and easy quicky recipe "... But if you don't want to cook and like something more fancy, go here..." blablabla... Heureka! That's it! Let's get to work!!! :-)

  18. I have no idea what your target audience is - that said there's no "official" CDM food. One family will BBQ, another will make tacos, etc.

    Just start with the general stuff and see where it goes. A simple recipe or two. Mexican food is incredibly diverse. I mean absolutely unbelievably diverse. You could cook different regional recipes your entire life and never cover all of it.


    My target audience is all kind of folks, who have any medical reason to go glutenfree in and around Harrisburg. This includes, but is not limited to finding businesses, who sell, and charities, who give out glutenfree foods in addition to other things glutenfree. It can be anything glutenfree really, but it HAS TO HAVE a connection to Harrisburg in some way.

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