Do You Tell People You Don't Know Well They Should Be Tested?
Posted 27 October 2012 - 12:57 PM
I was thinking about how it really isn't my place to say anything, just saying, "Your kids look sick." might not get the result I want! But then when I was leaving I mentioned to the mom that I wouldn't see her on Wednesday for the class Halloween party because my son has a biopsy because we are both recently diagnosed with celiac. She said, "I have celiac too.", I thought back to the birthday cake and asked, "But the kids aren't gluten free?". She said that her husband isn't a carrier, so her kids don't have it.
I'm just wondering if her kids have been properly screened. I know the quality of care in our area, with regard to celiac, isn't great. My son has been screened for many genetic conditions over the years, such as fragile X and others and I did testing in order to avoid having him do the blood work. But I've never read that this is the case with celiac.
I was thinking I'd ask her what tests she did for her kids and tell her that my doctor told me everyone should be tested in the family.
What do you think? Is it even possible to rule out one parent as a carrier and therefore all children?
Posted 28 October 2012 - 07:01 AM
In fact, there are instances of celiac in people with neither of the common celiac genes.
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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
Posted 28 October 2012 - 07:20 AM
It is a good thing the subject came up at the get together.
And to answer the question at the topic head when I don't know people well but they have symptoms and know I am celiac I sometimes will say that I think everyone should be screened for it. If they want more info on symptoms etc I will give it to them and often refer people here to the board for information.
"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)
Posted 28 October 2012 - 08:10 AM
And, Ravenswood, just looking through your signature for the first time and I'm so sorry what you and your family have been through. It makes me really appreciate that my boys might get the treatment they need when they need it. I spend so much time grumbling about a health care system that missed my celiac for thirty years and my son's for three short years, but we are so lucky that we finally are in a moment where the care we need is out there and there are forums like this to help us out. I hope you and your sons continue healing.
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