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linda_r

At The Brink Of An Autoimmune Cliff?

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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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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.


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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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.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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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.

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