Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 > It may be that his problems are due to the medical issues that he's > suffered from for so long, but how to tell? EI wants > a " psychological " eval. I think a neurodevelopmental pediatrician > would be much more appropriate. Any helpful suggestions or input on > getting a good diagnosis? My son was dx by a pediatric neurologist. Gave me a strong " autism " dx, but was absolutely worthless regarding any biomedical causes. Good luck. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Hi, No a sed rate is NOT enough to diagnose ... MANY of the fever disorders which are GENETIC will also have the same indicators. is a disease of EXCLUSION. Sed rate is an indicator... the sed rate WILL elevate in MANY MANY disorders.... In it tends to elevate during an episode and later when fever free will return to normal. Please read the archives... the files... and check the links... Education is the key. We have had MANY children come to us with RAPID diagnosis from pediatricians and specialists who seem to rush with a label.... of and later when the appropriate studies are done... come to realize a child has something else.... requiring other treatment to prevent secondary disorders with kidney and eyes. Mimicking disorder such as JRA, lupus, HIDs, TRAPs, FMF... etc present in similar fashions... Cyclic neutropenia too.... Please do not take a doctors word as fact. Read the articles in the file section... compare the disorders.. and advocate as YOU need. We have had about a dozen Mis-diagnosed children visit this group. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Hi, No a sed rate is NOT enough to diagnose ... MANY of the fever disorders which are GENETIC will also have the same indicators. is a disease of EXCLUSION. Sed rate is an indicator... the sed rate WILL elevate in MANY MANY disorders.... In it tends to elevate during an episode and later when fever free will return to normal. Please read the archives... the files... and check the links... Education is the key. We have had MANY children come to us with RAPID diagnosis from pediatricians and specialists who seem to rush with a label.... of and later when the appropriate studies are done... come to realize a child has something else.... requiring other treatment to prevent secondary disorders with kidney and eyes. Mimicking disorder such as JRA, lupus, HIDs, TRAPs, FMF... etc present in similar fashions... Cyclic neutropenia too.... Please do not take a doctors word as fact. Read the articles in the file section... compare the disorders.. and advocate as YOU need. We have had about a dozen Mis-diagnosed children visit this group. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Our process, which started at 18 months, went like this: 1. Pediatrician for 18 month well-child check 2. referred for hearing test (you've done that one, I assume) 3. referred to local hospital's Children's Neurodevelopmental Unit for speech and OT evaluations 4. referred to County Health Department's Birth to Three program 5. Had 2 autism evals done through Health Dept (both said NO) 6. Found my own OT 7. Called a University based Children's Hospital (1 yr later) for another speech eval 8. Speech Therapist suggested we have another Autism eval 9. Autism eval (at UW-Seattle Autism Clinic) said " yes " to Autism this July 10. Beginning a new direction of treatment with an alternative medicine M.D. down in Illinois as of 1/05 (*pbbbbth* to traditional medicine!) This was a 2 year process! You, having a child over the age of 3, will be working with the school district and not the health department. If you are a proactive kinda gal, I would start asking around for good evaluators. Do you have a teaching hospital or University in your city? Where do you live? Vanderbilt University has been said to be excellent: Dr. Camarata and his wife , to be exact. At the end of our road, I started making my own referrals. I will continue to do so as long as I have a PPO insurance plan! I made an appointment with a pediatric neurologist, but we moved before the 8 month waiting list was up to our name! I've heard contradictory opinions on neurologists (as far as diagnosing our kids). A competent and experienced Developmental Pediatrician is a nice place to start. What does your child's pediatrician say? Pam > > > Hello, > I was wondering the best way to get a diagnosis for my son. He > seems to have symptoms of global apraxia (or CP is a very slight > possibility). If you had to go to a specialist, were you referred or > decided to go on your own? > Thank you, I am getting desperate for a diagnosis! > Sange, > Holly 4yo > Randy 3yo-severe speech delay, bad coordination, sensory > issues, mild to mod hearing loss-genetic, not related to speech delay > Peyton 4mos-possible hearing loss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 what state do you live in?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Doe's your son see a speech therapist? We had Early Intervention come to our home and they eval. our son when he turned 2. He has had therapy for aprox. 7 months and she believed he has apraxia. We then took our son to a speech rehab for a second opinion and they also believe him to be apraxic. We then aproached our doctor with our concerns and he is going to see a neuro developmental pediatrician. I don't know if any of this will help but these are the steps we took. Zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 I live in the Denver Metro Area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi, Sange - We decided we needed to see someone when Josh was 6 months old. Out doc suggested waiting, we waited until he was 9 months old, our doc suggested waiting a bit more. At 1 year, we decided we wouldn't wait anymore and our doc (for insurance purposes) had to give a referral although he also suggested going to Easter Seals. We got some diagnoses there and then embarked on our journey to find a diagnosis (our son has very similar symptoms as yours except for the hearing loss). Josh is now 6.5 years old, we've been to four ped. neuros, two geneticists (was adopted and needed all sorts of testing done to rule out/find an answer), a neuromuscular doc, two ped. orthopedicists, and one dev. ped. The answer after countless tests, MRI's and CT's - we don't know why Josh has hypotonia, oral/verbal apraxia, global dyspraxia, dysarthria, sensory integration dysfunction. Could have been something nutritional during pregnancy, could have been a " neonatal accident, " could have been just something that happened. It doesn't seem like that's a relief but it is - at least we know it's not CP, MR, MD, etc., etc. Good luck on your journey! It will be a long one but well worth the effort to get answers. Sherry thdoy2 <Thdoy2@...> wrote: Hello, I was wondering the best way to get a diagnosis for my son. He seems to have symptoms of global apraxia (or CP is a very slight possibility). If you had to go to a specialist, were you referred or decided to go on your own? Thank you, I am getting desperate for a diagnosis! Sange, Holly 4yo Randy 3yo-severe speech delay, bad coordination, sensory issues, mild to mod hearing loss-genetic, not related to speech delay Peyton 4mos-possible hearing loss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Hi , In September I had genetic testing done to see if I could find out what type of CMT I had. The tests from Athena came back negative, but the CMT specialist in Michigan I'm seeing said that he needed to do more blood work to pinpoint what type. Like you the reason I wanted the blood test was to see if I and my soon to be husband wanted to have our own children knowing the risks or adopting. Like you it is hard to make a decission about such an important issue without all the facts in front of you. At the present time my doctor thinks I might have CMT type 2 B or D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a "text book case". So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach. Glad you're feeling better! From: [mailto: ] On Behalf Of homekew@...Sent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis question So recently I posted a question about gene testing and CD and everyone was super helpful so I am hoping I can post one more question to you all since you are more experienced with CD.Three months ago I was diagnosed with CD based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for CD so I did that. Well I got my gene test results back today and he said I have both the markers for CD. So to me it sounded like a pretty certain diagnosis of CD, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again.From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going GF and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being GF, but I also don't want to make a lifelong decision about being GF if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's CD.I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have CD and it could just be in the early stages of intestinal damage?Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 On the other hand, the relief I got simply from the diet, after a “mildly gluten intolerant” diagnosis from a blood test alone made me realize that I don’t need to wreck by guts just so a doctor can root around trying to find the damage and then look at what he chooses under a microscope. When the doctor told me that I would have to go back on gluten for 6 weeks for the biopsy to be “accurate” and I got as sick as a dog on one dinner and one breakfast, I realized that, since there is nothing the doc can do for me anyway and my health depends on me NOT eating gluten, I cancelled the biopsy. Remember that these are simply people with a large student loan and a bit more experience with this disease than you (but a limited experience unless the doctor is also gluten intolerant or celiac and gluten free). The real question is what do you want your insurance records to show? How stable is your insurance? Will you always have it? Or will you need to buy it solo? Are you likely to be hospitalized for something else and not have a family member there to protect you from the slice of white bread on top of your gravy covered “meat”? Will the dietician actually look at your records? Will the ER make sure that the IV tube is not dusted with wheat starch? Do YOU need the diagnosis so that you won’t be tempted to experiment? And some new research shows that 5 out of 6 people do react to gluten, even if they don’t have the genes and don’t have the same reactions we do. I’ve misplaced the citation but that 30%/1% number is a bit old now that more people are looking at the issue. Connie From: [mailto: ] On Behalf Of D Darcy Sent: Monday, June 09, 2008 7:43 PM Subject: RE: [ ] diagnosis question I'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a " text book case " . So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach. Glad you're feeling better! From: [mailto: ] On Behalf Of homekewmac Sent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis question So recently I posted a question about gene testing and CD and everyone was super helpful so I am hoping I can post one more question to you all since you are more experienced with CD. Three months ago I was diagnosed with CD based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for CD so I did that. Well I got my gene test results back today and he said I have both the markers for CD. So to me it sounded like a pretty certain diagnosis of CD, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again. From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going GF and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being GF, but I also don't want to make a lifelong decision about being GF if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's CD. I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have CD and it could just be in the early stages of intestinal damage? Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I got the numbers from Kimball Labs within the past month. I'm simply in favor of giving the doctor a chance to inspect the existing slides, and then to discuss the findings with the patient. What harm comes from that? From: [mailto: ] On Behalf Of Connie HamptonSent: Monday, June 09, 2008 8:03 PM Subject: RE: [ ] diagnosis question On the other hand, the relief I got simply from the diet, after a “mildly gluten intolerant” diagnosis from a blood test alone made me realize that I don’t need to wreck by guts just so a doctor can root around trying to find the damage and then look at what he chooses under a microscope. When the doctor told me that I would have to go back on gluten for 6 weeks for the biopsy to be “accurate” and I got as sick as a dog on one dinner and one breakfast, I realized that, since there is nothing the doc can do for me anyway and my health depends on me NOT eating gluten, I cancelled the biopsy. Remember that these are simply people with a large student loan and a bit more experience with this disease than you (but a limited experience unless the doctor is also gluten intolerant or celiac and gluten free). The real question is what do you want your insurance records to show? How stable is your insurance? Will you always have it? Or will you need to buy it solo? Are you likely to be hospitalized for something else and not have a family member there to protect you from the slice of white bread on top of your gravy covered “meat”? Will the dietician actually look at your records? Will the ER make sure that the IV tube is not dusted with wheat starch? Do YOU need the diagnosis so that you won’t be tempted to experiment? And some new research shows that 5 out of 6 people do react to gluten, even if they don’t have the genes and don’t have the same reactions we do. I’ve misplaced the citation but that 30%/1% number is a bit old now that more people are looking at the issue. Connie From: [mailto: ] On Behalf Of D DarcySent: Monday, June 09, 2008 7:43 PM Subject: RE: [ ] diagnosis question I'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a "text book case". So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach. Glad you're feeling better! From: [mailto: ] On Behalf Of homekewmacSent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis question So recently I posted a question about gene testing and CD and everyone was super helpful so I am hoping I can post one more question to you all since you are more experienced with CD.Three months ago I was diagnosed with CD based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for CD so I did that. Well I got my gene test results back today and he said I have both the markers for CD. So to me it sounded like a pretty certain diagnosis of CD, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again.From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going GF and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being GF, but I also don't want to make a lifelong decision about being GF if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's CD.I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have CD and it could just be in the early stages of intestinal damage?Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I would say that as long as they don't make you go back to eating gluten just so they can re-test you I don't see any harm in them looking at your slides again.I can see where Connie is coming from if they make you go back on gluten just to double check. That is crazy because you are the one that suffers. You know your own body and how things react when you eat them. So hopefully the Dr will work through it with you whether or not the lab results reflect the diagnosis.Melita-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hey Connie: do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that? Are there any other things about hospital that you know we should worry about?The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination.The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions.Ugh.Bronwyn----- Original Message -----From: < > < >Sent: Mon Jun 09 20:03:11 2008Subject: RE: [ ] diagnosis questionOn the other hand, the relief I got simply from the diet, after a “mildly gluten intolerant†diagnosis from a blood test alone made me realize that I don’t need to wreck by guts just so a doctor can root around trying to find the damage and then look at what he chooses under a microscope. When the doctor told me that I would have to go back on gluten for 6 weeks for the biopsy to be “accurate†and I got as sick as a dog on one dinner and one breakfast, I realized that, since there is nothing the doc can do for me anyway and my health depends on me NOT eating gluten, I cancelled the biopsy. Remember that these are simply people with a large student loan and a bit more experience with this disease than you (but a limited experience unless the doctor is also gluten intolerant or celiac and gluten free). The real question is what do you want your insurance records to show? How stable is your insurance? Will you always have it? Or will you need to buy it solo? Are you likely to be hospitalized for something else and not have a family member there to protect you from the slice of white bread on top of your gravy covered “meat� Will the dietician actually look at your records? Will the ER make sure that the IV tube is not dusted with wheat starch? Do YOU need the diagnosis so that you won’t be tempted to experiment?And some new research shows that 5 out of 6 people do react to gluten, even if they don’t have the genes and don’t have the same reactions we do. I’ve misplaced the citation but that 30%/1% number is a bit old now that more people are looking at the issue.Connie________________________________From: [mailto: ] On Behalf Of D DarcySent: Monday, June 09, 2008 7:43 PM Subject: RE: [ ] diagnosis questionI'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a " text book case " . So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach.Glad you're feeling better!________________________________From: [mailto: ] On Behalf Of homekew@...Sent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis questionSo recently I posted a question about gene testing and CD and everyonewas super helpful so I am hoping I can post one more question to youall since you are more experienced with CD.Three months ago I was diagnosed with CD based off of elevated bloodtests and a questionable biopsy. The biopsy showed some damage, but itwas not typical villi flattening. I went for a second opinion to adifferent doctor. At that point I had been gluten free for awhile andalready felt much better. He wanted to do a gene test for CD so I didthat. Well I got my gene test results back today and he said I haveboth the markers for CD. So to me it sounded like a pretty certaindiagnosis of CD, but he said since my biopsy was abnormal there couldstill be a chance I don't have it. I am supposed to go in for a followup so he can look at my biopsy slides again.From all my reading it seems like the elevated blood test, positiveresults from being gluten free, and positive gene markers should beenough to make a diagnosis, especially when coupled with the symptomsI had before going GF and the damage in the intestine. At this point Ijust want to be done with the doctor's visits and questioning, andwant to be at peace with being GF, but I also don't want to make alifelong decision about being GF if I don't have too. I guess I amwondering how much more evidence does a doctor need to feel certainit's CD.I don't know if I should keep my next appt which is next month. Theonly thing in question was the type of/and level of damage that wasin my intestine, but aren't I correct in thinking that I could stillhave CD and it could just be in the early stages of intestinal damage?Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 None. It is simply a matter of how you feel about the process and what is most useful to you. Connie From: [mailto: ] On Behalf Of D Darcy Sent: Monday, June 09, 2008 8:07 PM Subject: RE: [ ] diagnosis question I got the numbers from Kimball Labs within the past month. I'm simply in favor of giving the doctor a chance to inspect the existing slides, and then to discuss the findings with the patient. What harm comes from that? From: [mailto: ] On Behalf Of Connie Hampton Sent: Monday, June 09, 2008 8:03 PM Subject: RE: [ ] diagnosis question On the other hand, the relief I got simply from the diet, after a “mildly gluten intolerant” diagnosis from a blood test alone made me realize that I don’t need to wreck by guts just so a doctor can root around trying to find the damage and then look at what he chooses under a microscope. When the doctor told me that I would have to go back on gluten for 6 weeks for the biopsy to be “accurate” and I got as sick as a dog on one dinner and one breakfast, I realized that, since there is nothing the doc can do for me anyway and my health depends on me NOT eating gluten, I cancelled the biopsy. Remember that these are simply people with a large student loan and a bit more experience with this disease than you (but a limited experience unless the doctor is also gluten intolerant or celiac and gluten free). The real question is what do you want your insurance records to show? How stable is your insurance? Will you always have it? Or will you need to buy it solo? Are you likely to be hospitalized for something else and not have a family member there to protect you from the slice of white bread on top of your gravy covered “meat”? Will the dietician actually look at your records? Will the ER make sure that the IV tube is not dusted with wheat starch? Do YOU need the diagnosis so that you won’t be tempted to experiment? And some new research shows that 5 out of 6 people do react to gluten, even if they don’t have the genes and don’t have the same reactions we do. I’ve misplaced the citation but that 30%/1% number is a bit old now that more people are looking at the issue. Connie From: [mailto: ] On Behalf Of D Darcy Sent: Monday, June 09, 2008 7:43 PM Subject: RE: [ ] diagnosis question I'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a " text book case " . So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach. Glad you're feeling better! size=2 width="100%" align=center tabIndex=-1> From: [mailto: ] On Behalf Of homekewmac Sent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis question So recently I posted a question about gene testing and CD and everyone was super helpful so I am hoping I can post one more question to you all since you are more experienced with CD. Three months ago I was diagnosed with CD based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for CD so I did that. Well I got my gene test results back today and he said I have both the markers for CD. So to me it sounded like a pretty certain diagnosis of CD, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again. From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going GF and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being GF, but I also don't want to make a lifelong decision about being GF if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's CD. I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have CD and it could just be in the early stages of intestinal damage? Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I’m not sure about the IVs and I have not really checked in depth. I know that the people with corn allergies run into cornstarch being used on all kinds of plastics and worry that someone may think that wheat starch is a good alternative. Connie From: [mailto: ] On Behalf Of Bronwyn Syiek Sent: Monday, June 09, 2008 10:06 PM Subject: Re: [ ] diagnosis question Hey Connie: do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that? Are there any other things about hospital that you know we should worry about? The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination. The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions. Ugh. Bronwyn ----- Original Message ----- From: < > < > Sent: Mon Jun 09 20:03:11 2008 Subject: RE: [ ] diagnosis question On the other hand, the relief I got simply from the diet, after a “mildly gluten intolerant” diagnosis from a blood test alone made me realize that I don’t need to wreck by guts just so a doctor can root around trying to find the damage and then look at what he chooses under a microscope. When the doctor told me that I would have to go back on gluten for 6 weeks for the biopsy to be “accurate” and I got as sick as a dog on one dinner and one breakfast, I realized that, since there is nothing the doc can do for me anyway and my health depends on me NOT eating gluten, I cancelled the biopsy. Remember that these are simply people with a large student loan and a bit more experience with this disease than you (but a limited experience unless the doctor is also gluten intolerant or celiac and gluten free). The real question is what do you want your insurance records to show? How stable is your insurance? Will you always have it? Or will you need to buy it solo? Are you likely to be hospitalized for something else and not have a family member there to protect you from the slice of white bread on top of your gravy covered “meat”? Will the dietician actually look at your records? Will the ER make sure that the IV tube is not dusted with wheat starch? Do YOU need the diagnosis so that you won’t be tempted to experiment? And some new research shows that 5 out of 6 people do react to gluten, even if they don’t have the genes and don’t have the same reactions we do. I’ve misplaced the citation but that 30%/1% number is a bit old now that more people are looking at the issue. Connie ________________________________ From: [mailto: ] On Behalf Of D Darcy Sent: Monday, June 09, 2008 7:43 PM Subject: RE: [ ] diagnosis question I'd go back for the next visit. While having the genes means you could have CD, 30% of the population have the genes, while only 1% get the disease. How elevated were your antibodies? At any rate, I'd give him a chance to complete the review of the biopsy. As far as catching it early, we believe we caught our daughter's disease early (within about 2 months of starting symptoms), yet her villi damage was called a " text book case " . So I'd say it may not take much time to destroy the villi, esp those at the upper end of the duodenum near the stomach. Glad you're feeling better! ________________________________ From: [mailto: ] On Behalf Of homekewmac Sent: Monday, June 09, 2008 7:29 PM Subject: [ ] diagnosis question So recently I posted a question about gene testing and CD and everyone was super helpful so I am hoping I can post one more question to you all since you are more experienced with CD. Three months ago I was diagnosed with CD based off of elevated blood tests and a questionable biopsy. The biopsy showed some damage, but it was not typical villi flattening. I went for a second opinion to a different doctor. At that point I had been gluten free for awhile and already felt much better. He wanted to do a gene test for CD so I did that. Well I got my gene test results back today and he said I have both the markers for CD. So to me it sounded like a pretty certain diagnosis of CD, but he said since my biopsy was abnormal there could still be a chance I don't have it. I am supposed to go in for a follow up so he can look at my biopsy slides again. From all my reading it seems like the elevated blood test, positive results from being gluten free, and positive gene markers should be enough to make a diagnosis, especially when coupled with the symptoms I had before going GF and the damage in the intestine. At this point I just want to be done with the doctor's visits and questioning, and want to be at peace with being GF, but I also don't want to make a lifelong decision about being GF if I don't have too. I guess I am wondering how much more evidence does a doctor need to feel certain it's CD. I don't know if I should keep my next appt which is next month. The only thing in question was the type of/and level of damage that was in my intestine, but aren't I correct in thinking that I could still have CD and it could just be in the early stages of intestinal damage? Thanks in advance for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Connie is touching on a related issue that you also might want to take into account: do you want CD to be included in your permanent health record? Some of the positive aspects of that are the ones Connie is pointing out about slightly improved chances of getting GF treatment should you go to a hospital. On the other side of the fence, the negative aspects of having it listed are that it could make self-insurance more expensive and difficult to find, or even impossible, down the road. I have a friend with CD who needed to self-insure, and she was rejected by numerous carriers. After all, CD has a shown correlation to things like GI cancers that could cost the insurer a lot of $$. 4 years ago, when I was diagnosed, I was in about the same boat as you are at the moment, with positive antibody tests and some villi damage but it was atypical. After hearing my friend's story, I talked to my GI doc and he agreed to keep treating me as " we're pretty sure it's CD " , but to put other more benign things like IBS in my medical record, which he was ok with since he was not quite 100% sure. So now, whenever I see a new doc for something potentially related, I have to tell them that I do have CD but I'm trying to keep it out of my medical record. Thus far, this hasn't been a problem. For me, I know that once I got on a GF diet, my digestive problems evaporated and my weight and energy level returned to normal within a few months... so that is conclusive enough for me... and like others are saying, the prospect of doing a " gluten challenge " for 6 weeks just to do another biopsy does not seem worth the tradeoff. Just something to consider- -laura > >... The > real question is what do you want your insurance records to show? How > stable is your insurance? Will you always have it? Or will you need to buy > it solo? Are you likely to be hospitalized for something else and not have > a family member there to protect you from the slice of white bread on top of > your gravy covered " meat " ? Will the dietician actually look at your > records? Will the ER make sure that the IV tube is not dusted with wheat > starch? Do YOU need the diagnosis so that you won't be tempted to > experiment? .... Quote Link to comment Share on other sites More sharing options...
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