Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 > > I'm wondering, how many of you are out there who had " inconclusive " > blood tests, followed by a negative biopsy, who have actually gone GF > and had positive results?? > > ME! My only indicator was high TTG. Biopsy negative. Went GF anyway. Felt better in days. By 3 mos., my TTG was back down to undetectable. The delta TTG and success of the GF diet convinced my doc's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 > > I'm wondering, how many of you are out there who had " inconclusive " > blood tests, followed by a negative biopsy, who have actually gone GF > and had positive results?? > > ME! My only indicator was high TTG. Biopsy negative. Went GF anyway. Felt better in days. By 3 mos., my TTG was back down to undetectable. The delta TTG and success of the GF diet convinced my doc's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 > > I'm wondering, how many of you are out there who had " inconclusive " > blood tests, followed by a negative biopsy, who have actually gone GF > and had positive results?? > > ME! My only indicator was high TTG. Biopsy negative. Went GF anyway. Felt better in days. By 3 mos., my TTG was back down to undetectable. The delta TTG and success of the GF diet convinced my doc's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 My daughter had this same issue – has she been checked for IgA deficiency? If she is IgA deficient only the IgG will be elevated. They can now run a Tissue transglutaminase IgG, for a more conclusive blood test for those with IgA deficiency. (BTW, my daughter also has a wheat allergy.) Suzie From: SillyYaks [mailto:SillyYaks ] On Behalf Of Kris Sent: Wednesday, June 14, 2006 6:50 PM To: SillyYaks Subject: How many..... I'm wondering, how many of you are out there who had " inconclusive " blood tests, followed by a negative biopsy, who have actually gone GF and had positive results?? My little girl had her endoscopy yesterday. She has ulcers in her small intestine, which right off the bat could be the cause of all her tummy troubles. However, when she had her blood tests done, they were inconclusive. Negative on the " celiac specific " stuff, but IgG levels were significantly elevated (I was told that less than 10 is considered " normal " and hers was 72) and everything else was very high normal. I should have the results of the endoscopy Friday. But, I'm just ready for them to tell me that it's negative. But, when we first learned of her wheat allergy, she had a VERY positive reaction to the removal of wheat/gluten in only a week. At the end of that week I ws told to keep feeding it to her until after her endoscopy. I limited the amount she got, but she did eat it. So, back to my question..... Thank you, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 My daughter had this same issue – has she been checked for IgA deficiency? If she is IgA deficient only the IgG will be elevated. They can now run a Tissue transglutaminase IgG, for a more conclusive blood test for those with IgA deficiency. (BTW, my daughter also has a wheat allergy.) Suzie From: SillyYaks [mailto:SillyYaks ] On Behalf Of Kris Sent: Wednesday, June 14, 2006 6:50 PM To: SillyYaks Subject: How many..... I'm wondering, how many of you are out there who had " inconclusive " blood tests, followed by a negative biopsy, who have actually gone GF and had positive results?? My little girl had her endoscopy yesterday. She has ulcers in her small intestine, which right off the bat could be the cause of all her tummy troubles. However, when she had her blood tests done, they were inconclusive. Negative on the " celiac specific " stuff, but IgG levels were significantly elevated (I was told that less than 10 is considered " normal " and hers was 72) and everything else was very high normal. I should have the results of the endoscopy Friday. But, I'm just ready for them to tell me that it's negative. But, when we first learned of her wheat allergy, she had a VERY positive reaction to the removal of wheat/gluten in only a week. At the end of that week I ws told to keep feeding it to her until after her endoscopy. I limited the amount she got, but she did eat it. So, back to my question..... Thank you, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 My daughter had this same issue – has she been checked for IgA deficiency? If she is IgA deficient only the IgG will be elevated. They can now run a Tissue transglutaminase IgG, for a more conclusive blood test for those with IgA deficiency. (BTW, my daughter also has a wheat allergy.) Suzie From: SillyYaks [mailto:SillyYaks ] On Behalf Of Kris Sent: Wednesday, June 14, 2006 6:50 PM To: SillyYaks Subject: How many..... I'm wondering, how many of you are out there who had " inconclusive " blood tests, followed by a negative biopsy, who have actually gone GF and had positive results?? My little girl had her endoscopy yesterday. She has ulcers in her small intestine, which right off the bat could be the cause of all her tummy troubles. However, when she had her blood tests done, they were inconclusive. Negative on the " celiac specific " stuff, but IgG levels were significantly elevated (I was told that less than 10 is considered " normal " and hers was 72) and everything else was very high normal. I should have the results of the endoscopy Friday. But, I'm just ready for them to tell me that it's negative. But, when we first learned of her wheat allergy, she had a VERY positive reaction to the removal of wheat/gluten in only a week. At the end of that week I ws told to keep feeding it to her until after her endoscopy. I limited the amount she got, but she did eat it. So, back to my question..... Thank you, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Laurel, I’m glad to hear the update on Gabby…that’s a lot of growth. Enough to force you to go shopping for the next size in clothes, I’ll bet! Yahooo! Laurie lbilyeu@... From: SillyYaks [mailto:SillyYaks ] On Behalf Of Laurel S Sent: Thursday, June 15, 2006 2:29 PM To: SillyYaks Subject: Re: How many..... > > I'm wondering, how many of you are out there who had " inconclusive " > blood tests, followed by a negative biopsy, who have actually gone GF > and had positive results?? Your daughter sounds like mine....Aside from 2 low secretins and 1 positive celiac gene, ALL Gabby's tests came back " normal " --blood, urine, stool, endoscopy--her villi are fine! Taking her off gluten finally ended the bounce between runny/rock-hard stools, not having a bloated belly (tho it's still prominent!), and--BIGGEST-- knowing the difference between tummy ache & the urge to go to the bathroom! YIPEE! In the past 2 months (4 months gf yesterday), Gabby has gained 2.5 pounds & 2 " ! Last August she stopped growing...held at 18.5 pounds/33 " !!!! What 2.75 to 3.5 year old does NOT grow or gain weight??? A kid with real troubles....So, I'm glad we finally discovered the gene & the low secretins. Why she's " normal " on all tests is beyond me--but we're doing fine on the gf diet. ) Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Isn't if funny what we can get excited about? It's just a matter of time before she starts gaining. Hang in there. Things will improve now. Re: How many..... She went "officially" GF at 9:00 pm on 6.12 - and yesterday she had aREAL.... SOLID bm!! It was actually very exciting for me!! =)Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Isn't if funny what we can get excited about? It's just a matter of time before she starts gaining. Hang in there. Things will improve now. Re: How many..... She went "officially" GF at 9:00 pm on 6.12 - and yesterday she had aREAL.... SOLID bm!! It was actually very exciting for me!! =)Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Isn't if funny what we can get excited about? It's just a matter of time before she starts gaining. Hang in there. Things will improve now. Re: How many..... She went "officially" GF at 9:00 pm on 6.12 - and yesterday she had aREAL.... SOLID bm!! It was actually very exciting for me!! =)Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 My older son had short stature at age 5 (didn't grow at all one year) and was anemic as his only symptoms. His blood test was only slightly positive for IGG and negative on all others. Since he has a celiac brother, we had him scoped -- inconclusive and even inconclusive when we sent the slides to the University of land for a second opinion. So we took him strictly GF for the next six years. And he grew well. Just recently at age 11, the Ped GI thought we should push for a conclusion so we did a five month gluten challenge and had the genetic test done. He does not have the celaic genes, his blood test were negative, he was not anemic and has been growing like crazy. Am I sorry he spent six years on the diet? Not at all. Felt my only choice was to be conservative at that time just in case -- and he was already in a gf household due to his brother. So now we consider him a non-celiac. However, from what I have read while the genetic test can give a very low indicator of probability, it's not 100%, so like anyone with celiac in the family, I'll always stay alert if something should change. How many..... I'm wondering, how many of you are out there who had "inconclusive"blood tests, followed by a negative biopsy, who have actually gone GFand had positive results??My little girl had her endoscopy yesterday. She has ulcers in hersmall intestine, which right off the bat could be the cause of all hertummy troubles. However, when she had her blood tests done, they wereinconclusive. Negative on the "celiac specific" stuff, but IgG levelswere significantly elevated (I was told that less than 10 isconsidered "normal" and hers was 72) and everything else was very highnormal. I should have the results of the endoscopy Friday. But, I'm just readyfor them to tell me that it's negative. But, when we first learned ofher wheat allergy, she had a VERY positive reaction to the removal ofwheat/gluten in only a week. At the end of that week I ws told to keepfeeding it to her until after her endoscopy. I limited the amount shegot, but she did eat it.So, back to my question.... . Thank you,Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 >> Laurel,> > I'm glad to hear the update on Gabby.that's a lot of growth. Enough to force> you to go shopping for the next size in clothes, I'll bet! Yahooo! Unfortunately,,,,NO! I can't believe she still wears mostly 12 month stuff! > > > > Laurie> > Quote Link to comment Share on other sites More sharing options...
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