Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Getting Loved Ones Tested

10 posts in this topic

Hi all,

I tried to search for this topic, so I hope I am not reposting. I've seen it come up in other threads, I just thought it might be nice to hear from people who have had success getting their families to get tested.

I was diagnosed about two months ago. Though I don't have much extended family, it's not hard to guess where the gene comes from. My mother has had problems with fibermyalgia (sp?) for as long as I can remember, strange joint and muscle aches, weight problems, and brain fog. Her father died of stomach cancer and her aunt died of bowel cancer. To me, this seems like a shoo in for which parent is a carrier. My brother has also has a sensitive stomach.

Since there's been so much cancer in my family, I'm really worried about my mom. She's nearing the age her father was when he died, but she's one of those people who refuses to get check ups. Since she doesn't have diarrhea every day, she swears up and down that she couldn't have celiac disease. Does anyone have stories or suggestions to share that could be helpful or encouraging in this situation? I could use all the help I can get with her!!




Share this post

Link to post
Share on other sites

Ads by Google:

I was diagnosed in November and my immediate family only got tested just over a month ago. I just kept on them about getting testing since they were putting it off then they finally did it. My Mom came back negative and my brother and father haven't got results yet. My Dad goes to the doctor this afternoon so we'll see. I would just tell your family members about the symptoms of Celiac Disease and how much better they could feel after being diagnosed and then going on the gluten free diet.



Share this post

Link to post
Share on other sites

My children, siblings and father all got tested. My 70-year-old father was positive despite the absence of symptoms. No diarrhea at all.



Share this post

Link to post
Share on other sites

I've tried for years to get my family to get tested. My mom flatly refuses and now at 79 it's not likely she'll ever be tested. My eldest daughter finally got tested over a year ago now and tested positive. My youngest daughter tried to get tested and the doctor told her he wouldn't bother with blood tests, just go straight to the biopsy. The biopsy was pronounced negative. However, the doctor told her she was being paranoid and was definately NOT Celiac before he did the biopsy. So one would wonder why he didn't bother with the blood test, and how good a job he did on the biopsy. Which ever, I'm not likely to talk her into doing the tests again. My brother is diabetic (2) but has never been tested for Celiac. My sister died a week before her 50th birthday of a brain annerisim (sp) and wouldn't go to any doctor for a check up let alone testing. So ... some luck with Tammy, but otherwise not much luck.


Share this post

Link to post
Share on other sites

Hi Heather,

Isn't it the most anoying thing in the world?

When I found out what was wrong with me after sooooo many years of torture, I was thrilled to know it was somthing I could manage and take care of (easily in my mind) just by changing my diet. Although I couldn't understand at first why God would let me suffer so long when it was something relativley simple that would "cure" me.

I finally decided the reason was because if I had found out sooner then maybe I wouln't be so proactive about. Studying and learning as much as possible and being so dilligent about my diet. I probably would have cheated contantly and would have spent the rest of my life not being fully healthy. I figured with my knowledge that I would be the way to "cure" for the rest of my family.

Well......My grandmother had stomach problems and ill health her whole life and died of cancer. My aunt has had every kind of stomach issue imaginable and has been hospitalized several times. She has always been sickly and had polio as a child. My mother has been diagnosed with spatic colon and had her gollblatter out at the age of 25. My sister suffers from stomach problems and now her daughter keeps getting rashes that look like DH. Well.....wouldn't you think that seeing my "cure" and how remarkable it has been would make them all run as fast as possible to the doctor. No!!... I hear denials all the time, I hear how they don't want to know because it would be "too difficult" My sister even took her daughter off gluten for a few days. The rash seemed to get better but my sister said it was too difficult to keep her daughter on the diet!!!!!!!i :blink:<_< Isn't that nuts?

I'm sorry I don't have anything encouraging to say other than I keep praying for them. I did get my own daughters to be tested. The younger one has the genetic marker but doesn't suffer, my older daughter has full blown celiacs with fibromyalgia. She and I study about it and talk about it all the time. At least I feel I saved my own, even if the rest won't listen.

Good luck with your mom, I have tried giving her medical articels, even one that explaind the corolation between gollblatter disease and celiacs. I think my mom honestly knows she has it but just won't admit and get tested because she doesn't want to give up the foods she loves. keep us up to date if you discover any way that gets her to the doctor.



Share this post

Link to post
Share on other sites

I am having no luck getting my family tested either :(

I *did* finally get my dad to have the test and was completely shocked when it came back negative. His mother is (self-diagnosed) "allergic" to wheat, rye, and barley. He is bipolar, has lots of neurological problems, has thyroid disease, and a ton of other illnesses that all seem to correspond with celiac disease. But, no dice. I often wonder if his doctor somehow messed it up. He is a total A-hole who initially wouldn't test my dad because "Celiac disease isn't genetic" (after I'd told him that I have it). Anyway... his tTG came back low. Supposedly, the doctor also ran the IgA deficiency test, but I kind of doubt it. Unfortunately my dad believes this doctor is somehow god-like. (Even though he's almost killed him a couple of times!) So.. he's not going to be tested again :(

Although I know that I have it - I don't have the common GI symptoms. My little brother (Mike), however, DOES. When he eats cake, or pancakes, or anything like that he has terrible diarrhea. But ... will he be tested? No. He even told me that he simply doesn't want to know if he has it. He's almost 25 and wants to "live like a normal person." Last night one of his friends was teasing him..."Come on Mike! You know you have it! You're getting glutened right now!" (he was eating a hamburger bun). Mike got ultra-defensive and scowled "I don't have it!! :angry: " His friend said, "I think you do, and your response to gluten is that it makes you angry :P" Ha ha! Probably true ;)

My mom keeps saying that she's going to be tested but I don't think it will ever happen. I've known about mine for about 2 months now and she has yet to make an appointment.

I've told extended family members about it and no one seems interested - even though I've provided them with a nice little packet about celiac and the importance of being tested. Even though my doctor wrote a letter to my family members telling them that they need to be tested..

I don't know what to do either :(

Maybe I should just stab them all and get enough blood for the tests myself! :ph34r: I think that might be the only way to accomplish anything!

Anyway - good luck to you!!

- Michelle :wub:


Share this post

Link to post
Share on other sites

Maybe you could show them this: (from a previous post I did a while ago)

Hi there. There is a book called "Dangerous Grains" that deals primarily with gluten intolerance & Celiac. I highly recommend it. I'm quoting the following statistics from Appendix D in the book: "Comprehensive List of Gluten-Associated Medical Conditions". There are 187 conditions listed, so you can just forget about me typing out the whole thing But here are some of the big ones:

(BTW - I'm listing conditions that affect both sexes because I'm sure both will be interested!)

- Abortions recurrent (15% of conceptions in patients with celiac disease end in miscarriages vs. 6% in controls.

- Amenorrhea (38% of Celiacs vs. 9.2% of controls)

-Aphthous stomatitis / canker sores (up to 25% of Celiac patients may have a history of oral ulcerations)

- Arthropathies (26% of celiac disease patients with arthritic symptoms; 41% if still eating gluten vs. 7.5% of controls)

- Insulin Dependent Diabetes Mellitus (10% of all Celiacs develop IDDM, up to 8% of IDDM patients have or will develop celiac disease; many authorities now recommend that all IDDM patients be screened for celiac disease annually for several years after IDDM diagnosis)

- Hyperthyroidism (3.7% of all Celiacs)

- Hypothyroidism (8% of all Celiacs)

- Colitis, microscopic (27% with villous atrophy, 17% with celiac disease-related serology, most with HLA-DQ genetic marker)

- Dental enamel lesions (96% of celiac disease children and 83% of celiac disease adults with celiac-type color and structural defects, horizontal grooves, and/or vertical pits on one or more permanent teeth)

- Dermatitis Herpetiformis (classical non-GI manifestation of celiac disease; 25% without villous atrophy or crypt hyperplasia; instead only minor mucosal changes seen)

- Diabetes mellitus, insulin-dependent (2.6-7.8% of IDDM children have celiac disease - including silent and latent celiac disease, 10 to 100 times higher prevalence of celiac disease than expected)

- Down syndrome (prevalence of celiac disease detected is 1 in 14)

- Dysphagia (difficulty swallowing) (45-50 % of celiac disease patients)

- Abdominal pain (up to 25% of celiac disease patients complain of pain)

- Dyspepsia, esophagial reflux (5% of all such patients with gluten induced duodenal villous atrophy)

- Hyposplenism (10% of celiac disease adults, remits on gluten-free diet)

- Impotence / Loss of libido (19% of celiac disease males are impotent)

- Infertility in both men and women (2.1 million U.S. married couples are infertile - one-third male, one-third female, one third both; 18% of all celiac males are infertile; abnormal sperm is reversed; a 50% increase in conception rate occurs on strict gluten-free diet)

- Lactose intolerance (found in 50% of Celiac patients)

- Liver disease (15 times more frequent in celiac disease; 47 % of celiac disease adults and 57 % of children have evidence of liver impairment; biopsy proven liver damage has been reported in most untreated celiac disease patients)

- Lymphomas (31 to 100 times more common in celiac disease patients; risk returns to near normal with 5 years on a gluten-free diet)

- Menopause (occurs 2-4 years earlier in celiac disease patients)

- 8.5 fold increased risk of death from esophageal cancer

- 31-100 fold increased risk of death from small intestinal lymphomas

- 2.3 fold increased risk of death from all other malignant disease in celiac disease men

- Osteoporosis / Osteopenia (70% of untreated celiac disease patients with low bone density; in patients unresponsive to standard therapies - estrogen, vitamin D, calcium, bisphosphonates, calcitonin; bone density increases by 7.7 percent in 1 year on strict gluten-free diet alone)

- Thyroid disease, autoimmune (up to 13% of all CDs; subclinical thyroid disease may be reversed in some cases within 1 year on gluten-free diet)


Please note: I only listed conditions that had numerical statistics with them in the book. There are a LOT more conditions that do not have statistics with them. Obviously this doesn't mean that the other conditions are nonexistent, just that they haven't been documented and/or studied well enough.

I hope that was informative for you - AND - that it might help you to see the value of a gluten-free diet (the ONLY treatment for celiac disease).

- Michelle :wub:


Share this post

Link to post
Share on other sites

Wow, Michelle, thanks for all those statistics. I had heard that undiagnosed Celiacs were much more likely to develop cancer and was using this to sway my mom. I didn't know that about the menopause -my mom hit menopause a few years early.

My mother's big excuse is that she has bad veins and doesn't want to get blood drawn. How lame is that in the light of all those statistics.

Thanks everyone for the support. It helps me hang in there and keep at my mom.

I think it is crazy how the diet is what scares them out of getting tested, but the risks of going undiagnosed don't seem scary at all. :huh:



Share this post

Link to post
Share on other sites

The really funny thing is ... the more of us that get a positive test, the better the diet and life style is going to get. Even restaurants will have to smarten up not to mention the big grocery store chains. :rolleyes:


Share this post

Link to post
Share on other sites

Good point, Shirley!

My mom has been tested and it came back negative even though I don't believe it because she seems classic celiac disease. The doctor also didn't think the test was necessary (sound familiar?) so I wonder if he even did the right tests. The reason I wonder is because my sister went to the same clinic (but different doctor) specifically to be tested for celiac disease and the doctor didn't even order the right tests. She got all these results about liver, gallbladder, etc. And it didn't even mention celiac disease. So, my family listens, but the doctors are boobs!

If your family doesn't believe you I would recommend Danna Korn's Wheat Free, Worry Free. There are some really good chapters on denial, testing, related disorders, getting doctors to listen, etc. I'm going to have all my family read it.

Good luck!


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • How effective is HD skin biopsy after being gluten free for a year
      Looks like you got some good info from previous posters.   I don't understand why you and your doctor think that dairy contains gluten?  Lactose is a sugar not a protein like gluten.  I think you have some other issues.  
    • Question on posting
      I made an informative video for Celiac Awareness Month that demonstrates how small 20ppm is. Am I allowed to post a vimeo link? Thanks!
    • Celiac Awareness on NBC Nightly News   This was on last Tuesday. So happy that a popular national news program is spreading good information!
    • The US Preventative Services Task Force needs our help - tell them why Celiac screening is important!
      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms ( First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here.
    • Full month of educational opportunities planned at library
      He will also be offering free Tai Chi classes at WCPL every Tuesday, ... the varied symptoms of Celiac disease and the necessity to follow a gluten-free ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member