Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


This topic is now archived and is closed to further replies.


Getting Relatives Tested

Recommended Posts

Emily - I understand.... the ONLY sibling of mine to get tested, and I expect the only one ever to, is that same bro - after I told him that his reflux, etc could be from celiac - He came out negative, like your dad...but I also told him before he did the blood tests with his doc, that he would need to do the genetic test to rule out celiac, long-term...otherwise he could still 'get' Celiac Disease.

I doubt he will ever do the 'retesting every five years' that is currently recommended for first degree relatives of celiacs who do not know if they carry one of the genes for it, and which I made sure to tell him and all my sibs about.

They just don't want to hear about any of it, anymore...

That's the way my family works...

An example: I was the only one in my family to not deny my father's alcoholism, and abusive behaviors (like trying to choke me once when drunk, my older sister another time, pushing my little sister onto her bed and calling her a 'slut,' etc.). Some 'lovely' memories: To help my older sis, I had to threaten to burn my father with an iron once...To help my 11 years younger sis, I called a child abuse hot line when I was 24 when she called me and asked me to come home to help her (the hot line people forced my parents and her into counseling, or they would give me guardianship), and I did 'an intervention' by myself when I was 28 to get him to stop drinking .

He would not be alive today if he hadn't stopped drinking... BUT, because I was 'the only one' to not deny our family's 'crap,' I am also 'the scapegoat'...people in denial just do not want to pay attention to those that aren't. I don't really take it personally anymore...it's weird to think of myself as the strong one among 6 'kids'...especially after all of the weak physical feelngs that came with 2 decades of undiagnosed Celiac Disease.

Anyway - I know it's hard to see one's father not 'concerned enough' about his health...he's lucky to have you for a daughter.

Hope it's OK to say: please keep focusing on yourself - ...all you can do is share the info you have, tell your dad "I Love You and want you to be healthy," and then be a good role model. Love to you -

"Get busy living

or get busy dying."

From: The Shawshank Redemption


gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point


Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.



I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days


and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit


I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)


"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!


My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts


SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

Share this post

Link to post
Share on other sites

Wow, Faithinsciencetoo...have you ever had a load to bear. You say my dad's lucky to have me, mygawd, your siblings (and also your father) have been so lucky to have YOU! What a hero you are, dealing with all your dysfunctional-family issues as you have, and when sick with untreated celiac! Hugs and kudos to you. You are absolutely right...we must feel good about what we've been able to accomplish with our denying families, and get on with caring for ourselves... :)


diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

Share this post

Link to post
Share on other sites

Hi, I am new to this forum. I have read here and there and wanted to write a few different times but never seem to have the time. I have been sick off and on for over the past 8 years. I never heard of Celiac until January 2006. I was in the ER due to severe stomache burning and aches. Was diagnosised with Peptic Ulcer. I called my doctor and told him this wasn't the problem and to do more tests. I saw the gastroentrologist and he started a series of tests which resulted in my gall bladder not functioning and surgery for it to come out ASAP. During all of those tests, blood and otherwise, I was told about the celieac and the Dr. said to change my diet. I was in shock, cried cause I wasn't sure what it was or what I was going to do. I read a lot of stuff on the internet and just day to day, I never heard of any of this before and now it seems like I am running into more and more people at the store who have this in common. I had the dark circles under my eyes and the feeling of being dragged through the mud and so forth. It took probably 4 to 6 weeks before I felt better and the dark circles went away. I still feel tired, and now have been diagnosed with chronic fatigue syndrome. Nothing can be done about that. I have 4 boys and a grand daughter. My second son was tested due to always having stomache problems, he is negative. The pediatrican said unless my younger two boys had symptoms, he was not going to test them until they are older. My oldest son, who I was more concerned about is also a juvenile diabetic. I asked him to have the doctor test him, (mom can't call the doctor anymore cause he is over 18), and his doctor wouldn't do the test. My son, 5 days after I had surgery for removal of my gall bladder, ended up in diabetic coma with a sugar level through the roof - 1661. He almost died. While he was in ICU, I asked due to them taking blood every hour to take extra and test it for celiac. The Dr. wouldn't do it cause it had to come from my son who is over 18 and was in a coma- hello, who then is suppose to make those kinds of decisions, because he did not have a proxy at that time. I was furiated. When he was finally released from the hospital, and went to the liver specialist, I asked him for my son's health, and it was the same office different doctor who diagnosed me, if he would do this test. He agreed, finally. I didn't want him to have this disease, but needed to know due to what he can or can not have as a diabetic. I have read it takes 7 to 10 days to get blood results, less than a week later, his regular doctor called me to say my son had celiac and wanted to know which doctor had set up for this test. When I told him, he did say that it was a good idea cause his level was high for celiac. Now we have both gone to his Dr. appts. and saw a nutritionist and know what foods he can have, and which to avoid. We have since learned a lot and am very thankful. Thank you for listening.


Mom of four boys

Nana to three granddaughters

Diagnosed with Celiac January 2006 after positive biopsy and follow up with positive blood tests

Diagnosed Chronic Fatigue Syndrome March 2006 after ruling out so many other things

Vitamin B12 deficiency October 2006

Oldest son diagnosed Celiac June 2006 also diagnosed type one diabetic November 2002

Share this post

Link to post
Share on other sites