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Do You Tell People You Don't Know Well They Should Be Tested?


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3 replies to this topic

#1 megsybeth

 
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Posted 27 October 2012 - 12:57 PM

I think it's probably pretty common for newly diagnosed celiacs like me to see it everywhere but today I had the strangest experience. I was at a birthday party for a boy in my son's class who I don't know well (new school) but have met a couple times, have met his mom and his sister a couple times. I was looking at this boy and his sister and noticing how pale and thin they were and was surprised to see the boy, my son's age, is only a couple inches taller than him since most boys his age are half a foot taller (he's newly diagnosed too). And they have the dark circles under the eyes like my son and I have always had, and the boy tends to be a little grumpy and bossy, physical. I also was thinking the mom looks a lot like me, the good and the bad.

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?
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#2 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

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Posted 28 October 2012 - 07:01 AM

Both parents do not have to be carriers of celiac genes.

In fact, there are instances of celiac in people with neither of the common celiac genes.
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-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 :)


#3 ravenwoodglass

 
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Posted 28 October 2012 - 07:20 AM

The next time you see her do let her know that because she is celiac her children should be screened also. Celiac is strongly genetic but it is not one of the diseases for which both parents have to have the gene. You may want to refer her here to the board so she can read and ask any questions she needs.
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.
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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)

#4 megsybeth

 
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Posted 28 October 2012 - 08:10 AM

Thanks, Ladies. I think that's a good idea, Ravenswood, to say that I think everyone should be screened for it. I do make a point of telling people that I didn't have certain symptoms prior to my diagnosis because I think people are still stuck on the idea of it being a purely GI thing. I will try to bring it up with her again after I see a specialist in San Diego. I think since we both have it it makes sense for me to ask if she's heard of this doctor and to let her know the "latest" practices such as testing my asymptomatic baby. I do think it's so funny that her son is so drawn to mine.

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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