Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Cheryl, Welcome to your new home! Tell us of the joys of moving so many celiacs across country… Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of rxp_us Sent: Tuesday, June 20, 2006 10:43 AM To: SillyYaks Subject: RE: How Many/Sizes I really think there have been a lot of people getting missed. In part due to medical practitioners not taking a good enough family history. In our family, it has all been written off as " short kids of short parents " ; yet if they would bother to look further, they should see that that really is not the case. My grandfather was the shortest of his brothers. He was 5' 11 " --brothers all over 6'. My grandmother was the shortest of her family also -- brother's over 6' while she was around 5'4 " . My father only reached 5'6 " . My mother's family is similar with a gradual decline in stature. My Mom had many symptoms of celiac including bones that were literally transparent upon xray. Of me and my sibs: #1 normal healthy baby #2 many missed development milemarkers; extremely pudgy/always hungry #3 lack of growth to the point of receiving growth hormone before age 2 #4 (me) poor growth (looked like the celiac kid), bad diarrhea including a GI bleed by age 3 all blamed on allergy--they said I was allergic to everything but milk, bananas and -get this- RYE crisp (they said everything else caused horrible diarrhea; it was probably the rye!) Now, our kids..... #1 has 5 kids all under 5'4 " mixed with depression, learning disabilities, GI troubles, allergies, etc. #2 has 2 kids who were both preemie but have had horrible growth since then. One child (12 yrs) will hardly eat anything and has bone development a full 3 yrs behind. They are recommending growth hormone..... If it was truely the small child of small adults, wouldn't the bones be of normal development, but just smaller???? #3 has no children-she was plagued with issues (health of course) her whole life where it made her unable to persue normal relations in a time limit that would have allowed her to have children. #4 (mine) both had fallen off the growth charts. At 9, my son was still wearing 4Ts!!!! Our daughter was highly symptomatic (blown off as other things). It wasn't until we moved to FL when a new allergist took a look at my children and me and put 2 + 2 together. God bless him. And this does not even go into my husband's family which is as riddled with problems as mine is. All of which are highly suggestive of celiac, but which has never been considered. I should add here that my husband's daughter from a first marriage has also been diagnosed as celiac -- that one didn't come from me..... ) At any rate, my point is this: If you or anyone you know is questioning this, take a thorough family history. A medical family tree of sorts. Include all of the symptoms and conditions regardless of whether or not you think they are related. Some very interesting patterns arise. I did this when my daughter's first GI said that my 6 yr old " just had chronic gastritis " and to give her medicine and hope it went away. It was the fact that I saw celiac in so many of my family members and it made so much sense that I did this medical family tree. I took this to a new GI and he was overwhelmed by the number of people affected - it was far too many to be coincidence. We looked again at her testing - positive IgG, negative biopsy - and realized that there were too few biopsy samples taken and from the wrong area. Told to try the GF diet...... it was like night and day. In 4 weeks, she gained 4 pounds - the same amount that she had gained in the previous 3 YEARS. We had our answer. Now, a year and a half later, 4 people are GF and another 3 are being tested. Our iceberg is slowly melting. Hope this helps. Cheryl in MN (formerly of Tampa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Cheryl, Welcome to your new home! Tell us of the joys of moving so many celiacs across country… Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of rxp_us Sent: Tuesday, June 20, 2006 10:43 AM To: SillyYaks Subject: RE: How Many/Sizes I really think there have been a lot of people getting missed. In part due to medical practitioners not taking a good enough family history. In our family, it has all been written off as " short kids of short parents " ; yet if they would bother to look further, they should see that that really is not the case. My grandfather was the shortest of his brothers. He was 5' 11 " --brothers all over 6'. My grandmother was the shortest of her family also -- brother's over 6' while she was around 5'4 " . My father only reached 5'6 " . My mother's family is similar with a gradual decline in stature. My Mom had many symptoms of celiac including bones that were literally transparent upon xray. Of me and my sibs: #1 normal healthy baby #2 many missed development milemarkers; extremely pudgy/always hungry #3 lack of growth to the point of receiving growth hormone before age 2 #4 (me) poor growth (looked like the celiac kid), bad diarrhea including a GI bleed by age 3 all blamed on allergy--they said I was allergic to everything but milk, bananas and -get this- RYE crisp (they said everything else caused horrible diarrhea; it was probably the rye!) Now, our kids..... #1 has 5 kids all under 5'4 " mixed with depression, learning disabilities, GI troubles, allergies, etc. #2 has 2 kids who were both preemie but have had horrible growth since then. One child (12 yrs) will hardly eat anything and has bone development a full 3 yrs behind. They are recommending growth hormone..... If it was truely the small child of small adults, wouldn't the bones be of normal development, but just smaller???? #3 has no children-she was plagued with issues (health of course) her whole life where it made her unable to persue normal relations in a time limit that would have allowed her to have children. #4 (mine) both had fallen off the growth charts. At 9, my son was still wearing 4Ts!!!! Our daughter was highly symptomatic (blown off as other things). It wasn't until we moved to FL when a new allergist took a look at my children and me and put 2 + 2 together. God bless him. And this does not even go into my husband's family which is as riddled with problems as mine is. All of which are highly suggestive of celiac, but which has never been considered. I should add here that my husband's daughter from a first marriage has also been diagnosed as celiac -- that one didn't come from me..... ) At any rate, my point is this: If you or anyone you know is questioning this, take a thorough family history. A medical family tree of sorts. Include all of the symptoms and conditions regardless of whether or not you think they are related. Some very interesting patterns arise. I did this when my daughter's first GI said that my 6 yr old " just had chronic gastritis " and to give her medicine and hope it went away. It was the fact that I saw celiac in so many of my family members and it made so much sense that I did this medical family tree. I took this to a new GI and he was overwhelmed by the number of people affected - it was far too many to be coincidence. We looked again at her testing - positive IgG, negative biopsy - and realized that there were too few biopsy samples taken and from the wrong area. Told to try the GF diet...... it was like night and day. In 4 weeks, she gained 4 pounds - the same amount that she had gained in the previous 3 YEARS. We had our answer. Now, a year and a half later, 4 people are GF and another 3 are being tested. Our iceberg is slowly melting. Hope this helps. Cheryl in MN (formerly of Tampa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Cheryl, Welcome to your new home! Tell us of the joys of moving so many celiacs across country… Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of rxp_us Sent: Tuesday, June 20, 2006 10:43 AM To: SillyYaks Subject: RE: How Many/Sizes I really think there have been a lot of people getting missed. In part due to medical practitioners not taking a good enough family history. In our family, it has all been written off as " short kids of short parents " ; yet if they would bother to look further, they should see that that really is not the case. My grandfather was the shortest of his brothers. He was 5' 11 " --brothers all over 6'. My grandmother was the shortest of her family also -- brother's over 6' while she was around 5'4 " . My father only reached 5'6 " . My mother's family is similar with a gradual decline in stature. My Mom had many symptoms of celiac including bones that were literally transparent upon xray. Of me and my sibs: #1 normal healthy baby #2 many missed development milemarkers; extremely pudgy/always hungry #3 lack of growth to the point of receiving growth hormone before age 2 #4 (me) poor growth (looked like the celiac kid), bad diarrhea including a GI bleed by age 3 all blamed on allergy--they said I was allergic to everything but milk, bananas and -get this- RYE crisp (they said everything else caused horrible diarrhea; it was probably the rye!) Now, our kids..... #1 has 5 kids all under 5'4 " mixed with depression, learning disabilities, GI troubles, allergies, etc. #2 has 2 kids who were both preemie but have had horrible growth since then. One child (12 yrs) will hardly eat anything and has bone development a full 3 yrs behind. They are recommending growth hormone..... If it was truely the small child of small adults, wouldn't the bones be of normal development, but just smaller???? #3 has no children-she was plagued with issues (health of course) her whole life where it made her unable to persue normal relations in a time limit that would have allowed her to have children. #4 (mine) both had fallen off the growth charts. At 9, my son was still wearing 4Ts!!!! Our daughter was highly symptomatic (blown off as other things). It wasn't until we moved to FL when a new allergist took a look at my children and me and put 2 + 2 together. God bless him. And this does not even go into my husband's family which is as riddled with problems as mine is. All of which are highly suggestive of celiac, but which has never been considered. I should add here that my husband's daughter from a first marriage has also been diagnosed as celiac -- that one didn't come from me..... ) At any rate, my point is this: If you or anyone you know is questioning this, take a thorough family history. A medical family tree of sorts. Include all of the symptoms and conditions regardless of whether or not you think they are related. Some very interesting patterns arise. I did this when my daughter's first GI said that my 6 yr old " just had chronic gastritis " and to give her medicine and hope it went away. It was the fact that I saw celiac in so many of my family members and it made so much sense that I did this medical family tree. I took this to a new GI and he was overwhelmed by the number of people affected - it was far too many to be coincidence. We looked again at her testing - positive IgG, negative biopsy - and realized that there were too few biopsy samples taken and from the wrong area. Told to try the GF diet...... it was like night and day. In 4 weeks, she gained 4 pounds - the same amount that she had gained in the previous 3 YEARS. We had our answer. Now, a year and a half later, 4 people are GF and another 3 are being tested. Our iceberg is slowly melting. Hope this helps. Cheryl in MN (formerly of Tampa) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Thanks Laurie! It feels really good to be HOME. It wasn't so bad, we only had the 3 of us who are GF--hubby is still in denial. But we also had 3 dogs..........all of us in the one van..... I'm luck I still have hair on my head. Our trip was uneventful food wise. We took the safe route and did a lot of Chik-Fil-A, Burger King burgers, Outback and the like. Chik-Fil-A is wonderful -- their website actually has a trip planner and will give you a listing of every store of theirs along your route. BK has a store at nearly every highway exit -though we confounded quite a few people asking for burgers without buns-How could anyone eatit like that?? ). Outback has locations in major metro areas and we made sure to stop in those towns - never had a problem in any one and every store knew about the GF menu and what to do (big kudos). The only problem we had was in one Cracker Barrel, and it wasn't the gluten that was the problem--in fact, the manager had a child who was GF. Our problem there was my soy allergy. The kids and I had grilled chicken strips and they forgot to tell me that they marinate them with a sauce containing soy sauce. Two bite and I knew it didn't taste right so I stopped eating it. My stomach started cramping really bad and I had to run to the bathroom before we left tht table. The car ride was miserable for the next several hours as I felt like I was going to blow up. Thank goodness it wasn't a more severe reaction. My worst plight was that dear hubby started his mid-life crisis along the way. The 8 and 9 year olds were angels comepared to him. Nothing is good in life right now in his mind's eye. He is angry, depressed and just downright unpleasant. And true to male form----- won't go in to a doctor. We are still working on this one. At least now I have friends and family around that I can go visit and get away for a couple of hours...... ) Cheryl > > Cheryl, > > Welcome to your new home! Tell us of the joys of moving so many celiacs > across country. > > > > Laurie > > lbilyeu@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 I heard the same thing...overweight people aren't Celiac...that is a disease of malnutrition... So, OK, so why else did I get WELL after being GF for two weeks...and progressively better still, a year later?? The answer I hear, if and when I 'say something' is, "Well you are Gluten Intolerant, not Celiac. Your tTg came back negative, remember?" I say, "Yes, but my IgG and IgA came back very HIGH...it could be a false negative on the Ttg." Of course, I never bothered with the EGD...I wanted to get well, NOW...I had been ACTIVELY sick with Celiac for 14 years...and continued to gain weight year after year (very minimal, but still there, regardless of what I did or didn't do.) I am doing a genetic test next month...just to know for sure if I have the markers or not....since I could be gluten intolerant vs celiac. In a message dated 6/21/2006 4:34:24 AM Eastern Standard Time, SillyYaks writes: Yeah, I heard that one, too. The most interesting thing to me is that prior to diagnosis, my weight had been steaily increasing no matter what I did or ate - including a stint with Weight Watchers. On a GF diet, my weight is stable for the first time in my adult life - I loved watching the doctor who thought I wasn't celiac stumble through trying to explain that one!Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Silly hubby. He probably needs a poker club or something. Glad your trip went well. (or well enough). Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of rxp_us Sent: Wednesday, June 21, 2006 8:32 AM To: SillyYaks Subject: Re: How Many/Sizes Thanks Laurie! It feels really good to be HOME. It wasn't so bad, we only had the 3 of us who are GF--hubby is still in denial. But we also had 3 dogs..........all of us in the one van..... I'm luck I still have hair on my head. Our trip was uneventful food wise. We took the safe route and did a lot of Chik-Fil-A, Burger King burgers, Outback and the like. Chik-Fil-A is wonderful -- their website actually has a trip planner and will give you a listing of every store of theirs along your route. BK has a store at nearly every highway exit -though we confounded quite a few people asking for burgers without buns-How could anyone eatit like that?? ). Outback has locations in major metro areas and we made sure to stop in those towns - never had a problem in any one and every store knew about the GF menu and what to do (big kudos). The only problem we had was in one Cracker Barrel, and it wasn't the gluten that was the problem--in fact, the manager had a child who was GF. Our problem there was my soy allergy. The kids and I had grilled chicken strips and they forgot to tell me that they marinate them with a sauce containing soy sauce. Two bite and I knew it didn't taste right so I stopped eating it. My stomach started cramping really bad and I had to run to the bathroom before we left tht table. The car ride was miserable for the next several hours as I felt like I was going to blow up. Thank goodness it wasn't a more severe reaction. My worst plight was that dear hubby started his mid-life crisis along the way. The 8 and 9 year olds were angels comepared to him. Nothing is good in life right now in his mind's eye. He is angry, depressed and just downright unpleasant. And true to male form----- won't go in to a doctor. We are still working on this one. At least now I have friends and family around that I can go visit and get away for a couple of hours...... ) Cheryl > > Cheryl, > > Welcome to your new home! Tell us of the joys of moving so many celiacs > across country. > > > > Laurie > > lbilyeu@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 I feel for you....however, I suppose being DH has its advantages at times like these. I had the IgG and IgA came back very high when I was first tested and the tTg negative. However I had the area of one of my DH outbreaks tested (a few weeks later) and I was positive for Duhuring's Disease (another title for DH) which meant I had HAD celiac disease. NO question about it...so you could easily have a false positive instead of being " intollerant " . My doctor told me if it works, do it, so I did. I now feel like like a real person. OH and I was GAINING WEIGHT for two years before being diagnosed...now I am losing (slowly) and was told (also) that it had to do with malnutrition. Now that my family has been tested (and some came back positive) I have stopped worrying about it. Does your family members have positive results? in South Florida > > > I heard the same thing...overweight people aren't Celiac...that is a disease > of malnutrition... > > So, OK, so why else did I get WELL after being GF for two weeks...and > progressively better still, a year later?? > > The answer I hear, if and when I 'say something' is, " Well you are Gluten > Intolerant, not Celiac. Your tTg came back negative, remember? " I say, " Yes, > but my IgG and IgA came back very HIGH...it could be a false negative on the > Ttg. " Of course, I never bothered with the EGD...I wanted to get well, > NOW...I had been ACTIVELY sick with Celiac for 14 years...and continued to gain > weight year after year (very minimal, but still there, regardless of what I did > or didn't do.) > > I am doing a genetic test next month...just to know for sure if I have the > markers or not....since I could be gluten intolerant vs celiac. > > > > In a message dated 6/21/2006 4:34:24 AM Eastern Standard Time, > SillyYaks writes: > > Yeah, I heard that one, too. The most interesting thing to me is that > prior to diagnosis, my weight had been steaily increasing no matter > what I did or ate - including a stint with Weight Watchers. On a GF > diet, my weight is stable for the first time in my adult life - I > loved watching the doctor who thought I wasn't celiac stumble through > trying to explain that one! > > Maureen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 > I heard the same thing...overweight people aren't Celiac...that is > a disease of malnutrition... Overweight folks can suffer malnutrition, too. My doctor couldn't argue with the low folate, low b12, severely low iron. It didn't matter that I was overweight, gluten made me *sick*. ygg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Odd you should mention that. I have a rather long standing history of what's been assumed IBS-D. When that flares up, my typical response is to get ravenously hungry - usually with strong, odd cravings and somehow despite all that D (to a point of keeping manufacturers of generic immodium quite happy) I end up gaining weight. I'd love to have a doc explain that one other than the usual you're fat you must always over eat bit (esp. since normally I eat like a bird - really). Dee > I heard the same thing...overweight people aren't Celiac...that is > a disease of malnutrition... Overweight folks can suffer malnutrition, too. My doctor couldn't argue with the low folate, low b12, severely low iron. It didn't matter that I was overweight, gluten made me *sick*. ygg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 I was Celiac and overweight.I had a biopsy and it is for sure CD, my villi were flat. I have been GF since the end of Feb. and have lost 21lbs and counting. Since beeing GF it is just comming off Yay! My doctor has decided I do not need meds for diabetes due to the weight loss-Yay again! You can be overweight and Celiac!!! I was! (still am a little bit but hopfully not too much longer.) > > > > I heard the same thing...overweight people aren't Celiac...that is > > a disease of malnutrition... > > > Overweight folks can suffer malnutrition, too. My doctor couldn't > argue with the low folate, low b12, severely low iron. It didn't > matter that I was overweight, gluten made me *sick*. > > ygg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 I was Celiac and overweight.I had a biopsy and it is for sure CD, my villi were flat. I have been GF since the end of Feb. and have lost 21lbs and counting. Since beeing GF it is just comming off Yay! My doctor has decided I do not need meds for diabetes due to the weight loss-Yay again! You can be overweight and Celiac!!! I was! (still am a little bit but hopfully not too much longer.) > > > > I heard the same thing...overweight people aren't Celiac...that is > > a disease of malnutrition... > > > Overweight folks can suffer malnutrition, too. My doctor couldn't > argue with the low folate, low b12, severely low iron. It didn't > matter that I was overweight, gluten made me *sick*. > > ygg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 I was Celiac and overweight.I had a biopsy and it is for sure CD, my villi were flat. I have been GF since the end of Feb. and have lost 21lbs and counting. Since beeing GF it is just comming off Yay! My doctor has decided I do not need meds for diabetes due to the weight loss-Yay again! You can be overweight and Celiac!!! I was! (still am a little bit but hopfully not too much longer.) > > > > I heard the same thing...overweight people aren't Celiac...that is > > a disease of malnutrition... > > > Overweight folks can suffer malnutrition, too. My doctor couldn't > argue with the low folate, low b12, severely low iron. It didn't > matter that I was overweight, gluten made me *sick*. > > ygg > Quote Link to comment Share on other sites More sharing options...
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