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My 14 yr. old daughter complained of "tummy hurt" from age 4. She was diagnosed with GERD at age 8. She had an endoscopy 2 years ago that showed normal villi but demonstrated "mild reactive gastropathy". A diagnosis of irritable bowel was proposed. She started having episodes of Raynaud's at age 12. Six months ago she developed scalp psoriasis. She has some issues with brain fogginess, occasional tingling in extremities, and a few more aches and pains than a normal teenager. To confuse the issue, she is well muscled despite a very lean build and appears the picture of vibrant health. She was tested for celiac by Prometheus a couple months ago and here are the results:
Anti-Gliadin IgG = 3.9; normal = <10
Anti-Gliadin IgA = <1.2; normal = <5
Anti TTG IgA = <1.2; normal = <4
Anti EMA IgA = Negative; normal = Negative
Total Serum IgA = 42; normal = 44-144
HLA allelic variant associated with celiac disease detected: DQ8 heterozygous; 2X risk: risk moderate
Although she was eating gluten at the time of this test, her intake had already been somewhat reduced on her own to avoid foods that upset her stomach. Her pediatrician approved going gluten free. GI docs were unhelpful. She is having a hard time staying consistently gluten free and cheats with pizza & hamburgers a couple times a week. She admits to feeling better without gluten. How hard should I press her to be strict about the diet without an official diagnosis? I feel she is at the brink of an autoimmune cliff.
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At The Brink Of An Autoimmune Cliff?
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#2
ravenwoodglass 
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Posted 18 November 2009 - 01:16 PM
Press her hard. The IGA deficincy could be impacting the tests for celiac and false negatives are all too common even with a normal IGA level.
She can still have burgers and pizza, there are gluten free versions of both that are not bad. It might help her also to have her visit here and perhaps even 'talk' to some of the teens in the teen section.
She can still have burgers and pizza, there are gluten free versions of both that are not bad. It might help her also to have her visit here and perhaps even 'talk' to some of the teens in the teen section.
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)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity 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)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity 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)
#3
GottaSki
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Posted 18 November 2009 - 01:58 PM
This one is tough. I've got two teen boys - both tested negative, but both have different celiac symptoms.
When I was diagnosed this past spring we talked about the likelihood that they have celiac.
My 16 year old (15 when he went gluten-free) decided to go gluten-free to see if it improved his gerd and fatigue symptoms. He has had major improvement with fatigue and some improvement with gerd. Additionally his accidental or intentional glutenings leave him slightly bloated and exhausted. He was sold within a month and is gluten-free. BUT he is still a teen - he has minor slips (about three in 5 months) like eating just a small piece of someone's food. Each time he has had a reaction. On whole I think he is doing very well for such a drastic diet change for a teen.
My 14 year old has not gone gluten free -- although his symptoms have improved since there is far less gluten in his diet - all breakfast and dinners are gluten-free. Still discussing his need to go gluten-free for his health.
It is tough for many to accept gluten-free when the blood work is negative.
When I was diagnosed this past spring we talked about the likelihood that they have celiac.
My 16 year old (15 when he went gluten-free) decided to go gluten-free to see if it improved his gerd and fatigue symptoms. He has had major improvement with fatigue and some improvement with gerd. Additionally his accidental or intentional glutenings leave him slightly bloated and exhausted. He was sold within a month and is gluten-free. BUT he is still a teen - he has minor slips (about three in 5 months) like eating just a small piece of someone's food. Each time he has had a reaction. On whole I think he is doing very well for such a drastic diet change for a teen.
My 14 year old has not gone gluten free -- although his symptoms have improved since there is far less gluten in his diet - all breakfast and dinners are gluten-free. Still discussing his need to go gluten-free for his health.
It is tough for many to accept gluten-free when the blood work is negative.
-Lisa
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
#4
linda_r
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Posted 18 November 2009 - 04:05 PM
I think I do need to push her harder because I feel her health is at the tipping point. Even if she is not celiac she may be gluten intolerant which may cause continuing autoimmune issues. I may try for strict adherence for 6 or 8 weeks to see if the abdominal pain clears and the psoriasis improves. She can tolerate the pain, but the rash on her scalp is bugging her.
She also may need the support of the teen group. She has made a new friend at high school that has RA. She is trying gluten free after my daughter suggested it because she also has GI symptoms. I am sure her parents also did some research. Teen networking can be useful.
She also may need the support of the teen group. She has made a new friend at high school that has RA. She is trying gluten free after my daughter suggested it because she also has GI symptoms. I am sure her parents also did some research. Teen networking can be useful.
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