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Shymom5

Appt With Ped. Gi

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Our 4 1/2 year old has been on gluten free diet now for three weeks. She finally has an appointment with her Ped. GI next Tuesday. Should I call him and ask if I should take her off the diet? or should I just keep her on it and wait until I get there? She had been having diarrhea for five weeks and now that we have this appointment and has been gluten free, she isn't going hardly at all!

She is adopted and we've had her for 2 1/2 years and I've always had this problem with trying to find a balance between constipation and diarrhea. She can't have sugar or chocolate as that makes her very hyper. She also has been diagnosed with possible Asperger's Syndrome and is yet to have further testing for that. We know nothing about her bio's medical history and we are hoping they will do DNA testing. If she gets into this autism clinic they will do this test among many others to see what else is going on with her. This is a very stressful time for us as a family :blink: I have finally had to take a few steps back and taken a couple of days and done nothing but read some books that had nothing to do with either of these problems in order to get my mind off of them!

Thanks ahead of time for any input anyone might have,

Connie

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Since she is already off it and showing progress I would not put her back on. Talk to the doctor first at the appointment, some are getting smart enough to realize that especially in children as young as she is the response to the diet is much more reliable than testing. False negatives abound. If you have stuff like her growth charts or records of her symptoms that you can bring with you or have your Ped doctor send that may help show her progress once she has been on the diet for a bit. It is not unusal for celiacs to have disorders in the Autism spectrum, it is also not unusual for us to get quite a bit of relief and have an easier time processing the world around us off gluten and casien.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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We just went thru this. Today was our dr appt actually. I had taken our son off gluten, there was a fabulous response--I had a brief glimpse of a little boy who wasn't actually in his "terrible 2's" I called the GI and the pediatrician (both of whom I adore) and they both wanted me to keep him off gluten until 1 week before the appointment to see if the symptoms returned. This was important in our case, to make sure that there wasn't something else going on. He returned IMMEDIATLY to the terrible 2's, but the intestinal issues have been sparatic. It's been one heck of a week, let me tell ya :huh: So our peds GI said today that it sounds like it is celiac disease, but he doesn't want to diagnose without the biopsy. With all the issues we've had with him, I want an accurate diagnosis, so I'm going to go ahead with it. I had said before that I wasn't, but after a lot of thought, we decided to just do it. It's scheduled for the 13th of this month. We will continue to give him gluten until then, although I'm going to have to psych myself up for these next 2 weeks <_< The GI and I had a long talk about it and I feel OK with it, I feel-for us-it's the right decision. I know there are a lot of people who will disagree with me though...


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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We just went thru this. Today was our dr appt actually. I had taken our son off gluten, there was a fabulous response--I had a brief glimpse of a little boy who wasn't actually in his "terrible 2's" I called the GI and the pediatrician (both of whom I adore) and they both wanted me to keep him off gluten until 1 week before the appointment to see if the symptoms returned. This was important in our case, to make sure that there wasn't something else going on. He returned IMMEDIATLY to the terrible 2's, but the intestinal issues have been sparatic. It's been one heck of a week, let me tell ya :huh: So our peds GI said today that it sounds like it is celiac disease, but he doesn't want to diagnose without the biopsy. With all the issues we've had with him, I want an accurate diagnosis, so I'm going to go ahead with it. I had said before that I wasn't, but after a lot of thought, we decided to just do it. It's scheduled for the 13th of this month. We will continue to give him gluten until then, although I'm going to have to psych myself up for these next 2 weeks <_< The GI and I had a long talk about it and I feel OK with it, I feel-for us-it's the right decision. I know there are a lot of people who will disagree with me though...

I just hope with all the misery you are all enduring that it doesn't come back a false negative. With the progress he has had I pray even if it does that you will continue the diet with him.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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We just went thru this. Today was our dr appt actually. I had taken our son off gluten, there was a fabulous response--I had a brief glimpse of a little boy who wasn't actually in his "terrible 2's" I called the GI and the pediatrician (both of whom I adore) and they both wanted me to keep him off gluten until 1 week before the appointment to see if the symptoms returned. This was important in our case, to make sure that there wasn't something else going on. He returned IMMEDIATLY to the terrible 2's, but the intestinal issues have been sparatic. It's been one heck of a week, let me tell ya :huh: So our peds GI said today that it sounds like it is celiac disease, but he doesn't want to diagnose without the biopsy. With all the issues we've had with him, I want an accurate diagnosis, so I'm going to go ahead with it. I had said before that I wasn't, but after a lot of thought, we decided to just do it. It's scheduled for the 13th of this month. We will continue to give him gluten until then, although I'm going to have to psych myself up for these next 2 weeks <_< The GI and I had a long talk about it and I feel OK with it, I feel-for us-it's the right decision. I know there are a lot of people who will disagree with me though...

Rachelle, I know that your son hasn't been gluten free for too long, but that doesn't seem long enough to be back on gluten. I think you have a pretty good chance at a false negative. If you are going to have the biopsy, ask if they will be checking (or request for them to check) his sugar processing . . . looking for a disaccharidase deficiency. My daughter had a positive blood test but did not officially have visible intestinal damage. However, she did have a generalized disaccharidase deficiency. Everybody talks about lactose intolerance that goes along with celiac disease, but those villi process a few other sugars as well. My pedGI said that since all her sugar processing was down, that it indicated hidden damage.

Here's a little info

http://gastroresource.com/GITextbook/En/Chapter7/7-12.htm

But this is the best part:

Deficiencies of disaccharidases may be primary (hereditary) or secondary (acquired) deficiencies. Characteristically in primary deficiencies, which are rare, only one enzyme is involved; the deficiency is present at birth (with the exception of the adult-onset form of lactase deficiency), not associated with intestinal disease, and irreversible. Secondary deficiencies usually involve all the disaccharidases, may occur at any age, are associated with a disorder of the small intestinal mucosa, and may be reversed if the intestinal disorder (e.g., celiac disease, stasis syndromes or acute enteritis) heals.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

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Rachelle, I know that your son hasn't been gluten free for too long, but that doesn't seem long enough to be back on gluten. I think you have a pretty good chance at a false negative. If you are going to have the biopsy, ask if they will be checking (or request for them to check) his sugar processing . . . looking for a disaccharidase deficiency. My daughter had a positive blood test but did not officially have visible intestinal damage. However, she did have a generalized disaccharidase deficiency. Everybody talks about lactose intolerance that goes along with celiac disease, but those villi process a few other sugars as well. My pedGI said that since all her sugar processing was down, that it indicated hidden damage.

Here's a little info

http://gastroresource.com/GITextbook/En/Chapter7/7-12.htm

But this is the best part:

Deficiencies of disaccharidases may be primary (hereditary) or secondary (acquired) deficiencies. Characteristically in primary deficiencies, which are rare, only one enzyme is involved; the deficiency is present at birth (with the exception of the adult-onset form of lactase deficiency), not associated with intestinal disease, and irreversible. Secondary deficiencies usually involve all the disaccharidases, may occur at any age, are associated with a disorder of the small intestinal mucosa, and may be reversed if the intestinal disorder (e.g., celiac disease, stasis syndromes or acute enteritis) heals.

Thank you so much for posting this. It finally explains why the combo of sugar and gluten would knock me for such a loop even as a kid. I used to eat the candles from my birthday cake rather than the frosting for this reason. :D It also lead to many, many tests for diabetes.

The next page is a page about celiac so be sure to check that out also.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thank you so much for posting this. It finally explains why the combo of sugar and gluten would knock me for such a loop even as a kid. I used to eat the candles from my birthday cake rather than the frosting for this reason. :D It also lead to many, many tests for diabetes.

The next page is a page about celiac so be sure to check that out also.

Shyanne (4 1/2 yr. old) can't have sugar or chocolate as it drives her even more crazy than normal and then I get more crazy! Red dye also does this. When we pick up treats we watch the sugar content and stay below 5-7 grams of sugar per serving. Now we watch for gluten and wheat content also. This is all driving me crazy! I'm praying it is anything but celiac disease. :(

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Rachelle, I know that your son hasn't been gluten free for too long, but that doesn't seem long enough to be back on gluten. I think you have a pretty good chance at a false negative. If you are going to have the biopsy, ask if they will be checking (or request for them to check) his sugar processing . . . looking for a disaccharidase deficiency. My daughter had a positive blood test but did not officially have visible intestinal damage. However, she did have a generalized disaccharidase deficiency. Everybody talks about lactose intolerance that goes along with celiac disease, but those villi process a few other sugars as well. My pedGI said that since all her sugar processing was down, that it indicated hidden damage.

Here's a little info

http://gastroresource.com/GITextbook/En/Chapter7/7-12.htm

But this is the best part:

Deficiencies of disaccharidases may be primary (hereditary) or secondary (acquired) deficiencies. Characteristically in primary deficiencies, which are rare, only one enzyme is involved; the deficiency is present at birth (with the exception of the adult-onset form of lactase deficiency), not associated with intestinal disease, and irreversible. Secondary deficiencies usually involve all the disaccharidases, may occur at any age, are associated with a disorder of the small intestinal mucosa, and may be reversed if the intestinal disorder (e.g., celiac disease, stasis syndromes or acute enteritis) heals.

Janet,

Thank you for the info, I will take it with me. He wasn't off of gluten for a long time and he will be back on for more than 3 weeks which may or may not be enough time, I don't know. His intestinal issues never cleared up 100% off gluten, but there were a lot of other changes that we noticed right away, especially behaviorly. We don't eat a lot of sugar in our house and when he does get some, I don't see a huge change.

Although I've already got 1 kid with Celiac, the circumstances with her diagnosis were completely different. I almost think I know too much now ;) Thanks for all your help!


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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Janet,

Thank you for the info, I will take it with me. He wasn't off of gluten for a long time and he will be back on for more than 3 weeks which may or may not be enough time, I don't know. His intestinal issues never cleared up 100% off gluten, but there were a lot of other changes that we noticed right away, especially behaviorly. We don't eat a lot of sugar in our house and when he does get some, I don't see a huge change.

Although I've already got 1 kid with Celiac, the circumstances with her diagnosis were completely different. I almost think I know too much now ;) Thanks for all your help!

I didn't notice any changes with my daughter as far as sugar goes. When we were first looking for what was wrong (before we got hit with the Celiac bombshell), we were treating her as if she were lactose intolerant (per the recommendation of the pediatrician). When the pedGI wanted to do an endoscopy, I asked if they could determine if she really was lactose intollerant. Her blood test and endoscopy were done on the same day. The blood test came back positive and the biopsy basically showed the disaccharidase deficiency which the GI declared as Celiac evidence. I don't know if they would have checked it if I hadn't asked about the lactose intolerance.

Connie - I agree with Ravenwoodglass . . . I think you should keep Shyanne off of gluten until you talk to the GI since it's only a couple of more days. If he/she presses you to put her back on for a blood test and biopsy, I would counter with the fact that you've seen a lot of progress and don't want to take a step backwards and see if he/she has some other alternative.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

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