How do you convince adult children to get tested for CD?

Ok, I got 3 kids, all grown up and I've spoken to each of them, encouraging them to get a blood tests.

My eldest (f-34) has never had any symptoms or issues but 'will get around to it'.

My second (m-30) is my worry as he has inherited some of my other sensitivities. He has a 4 yr old son who has developmental issues ie he's missed milestones in walking/talking, etc. The mother, who is from Eastern Europe, keeps saying he's had blood tests and I keep explaining this is specific and they need to look for it. I'm actually quite worried.

The third one (m-28) was diagnosed with IBS about 6 months ago. He sends me a smiley when I text and ask if he's been yet.

Has anyone else had a similar situation? Can anyone offer advice as I feel like I'm banging my head against a wall.

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  • Hi MapleMamma,

    We have a son who is 21 and never been tested. My wife and I have explained the odds increasing and he is aware he is at greater risk. He is 6'3" 85kgs and suffers no symptoms.

    We do not attempt to persuade him either one way or the other. He has the facts (he's also a med student so is better tuned than most to understand the risks, consequences). It's his choice.

    The only difference to our situations is I am asymptomatic and I gather from your post you are not.

    If our son had any symptoms we would expect him to explore them including the potential coeliac diagnosis. But again it would be down to him.

    Hope this helps?

  • Hi Silver,

    Actually I wasn't tested due to symptoms. It was a fluke. I requested bloods as I was having nights sweats (peri-menopausal symptoms 5 yrs on). Turned up my anemia and low iron stores and TG they retested for the cause of my iron levels.

    I had quite serious iron deficiency about 9 years ago when living in Canada (I'm in Scotland now) but wasn't tested further unfortunately.

    When I view my past, I reckon I've had coeliac disease for decades. I really fear that my son and his son have this terrible gene. My son was under a Greek naturalpathologist as a toddler due to his symptoms and living on fresh veg and fruit juices and goats milk for ages. I also remember daily enemas to remove toxins. My Greek father-in-law was horrified ;-)

    I totally agree it's up to them and I would never want to subject anyone to the turmoil and challenges that living with coeliac disease brings. Still I'd want to know if I had it and I'm so glad to feel better and better each and every day. It's one month and two days since and it's been well worth feeling human again.

  • 3 of my children have been tested and one has not. He may well have coeliac because an allergy tester thinks that he has. However, he is in good health and not anaemic. He has made a mature, informed decision that he does not want to discover if he has coeliac because he does not wish to undergo all the illness, inconvenience and discomfort which hyper-sensitivity to gluten has caused me since my diagnosis 3 years ago. Should he become ill in the future, he will probably get tested. I fully support his decision because going gluten-free is not a problem free journey and if a person is well then I see no reason why they should go out of their way to discover an illness. And as for the cancer risk, well he could be run over by a bus or killed in a car accident just as easily. I have advised him not to keep his gluten input moderate and to look after his health. If someone is already ill then the situation may be different but it is an individual choice for an adult.

  • They are adults. I need to keep reminding myself. :-) I'd be happy with 2 out of 3 getting tested. Thank you for sharing.

  • Hi there MapleMamma, I think the problem that you face is that your children hope that they do not have CD and feel they will wait until they have to do something if they have symptoms. Now this has come up on here before so here's a couple of links and on the first one is a video which might help persuade your off spring to be tested.

    healthunlocked.com/glutenfr...'s%20why%20you%20should..

    healthunlocked.com/glutenfr...

    I also felt guilty that my son might have CD because I do so I was lucky as my son told Dr's when he had other tests so he had the blood test and I was relieved at that.

    So what I would do is say yes it is a drag not being able to eat everything but feeling better is well worth the price as I feel and look better than I did before diagnosis and this is what I would focus on.

    Here's the link to all the relevant posts in archives:

    healthunlocked.com/search/g...

    (I meant to post this first time LOL)

  • Oh thanks for that Jerry. Spot on!

    I was surprised that he spoke about eliminating 100% with no exceptions. That's what the goal is.

    Forgot to look through archives so again cheers for that. :-)

  • Do they need to be tested if they have no symptoms? Coeliac disease isn't life threatening so can't they just wait until they (possibly) have symptoms to get tested? If they have no symptoms it suggests that they don't have coeliac disease anyway, yet, and may not have it ever. It took me a year to get diagnosed with my symptoms (and that was my GP's fault, not mine!) I wouldn't have had the test without symptoms, even though coeliac disease is in my family.

  • Celiac Disease can be very life threatening. I nearly died from the malabsorption alone. And the chances of developing lymphomas are way higher for untreated Celiac sufferers. A lot of damage to any and all body systems is not anything to take lightly. Rarely does anyone with Celiac Disease have no symptoms. They may have no gut symptoms, but symptoms can be as little as headaches or tooth decay. Waiting until you are very sick from it is much like waiting until you are very sick from cancer, which also, sometimes, doesn't show many symptoms until in late stages.

  • Yes, I agree that the malabsorption part of it can be life threatening if left, but you would have severe symptoms of it. As a diagnosed coeliac myself, with the anaemia, low folate, low zinc and osteoporosis that comes with it, I'm certainly not taking it likely at all. But anyone can have coeliac disease, it's not just genetic, and I don't think we could persuade everyone to have a test just incase, nor could we persuade GPs to perform these tests with no symptoms. My GP certainly wouldn't have tested me for coeliac disease unless I had symptoms, even though 4 members of my close family are diagnosed Coeliacs.

  • 1. If it's not life-threatening why are people with refractory coeliac living with a ticking time-bomb.

    2. Studies have repeatedly shown it is actually those least symptomatic who are most at risk of early death.

    3. It is only genetic - all coeliacs are either HLA-DQ2 or DQ8, but not all carriers of the gene develop coeliac disease.

    4. Some deaths from coeliac disease:

    ncbi.nlm.nih.gov/pubmed/274...

  • I think you've missed the point of my reply Jacks; I'm not doubting the seriousness of coeliac disease, but I agree with Hil101. How can you persuade well informed adults to have tests that they don't want to have? Should everyone be tested incase they have coeliac disease? My grandmother was diagnosed with coeliac disease at 50, she didn't have coeliac disease her whole life. So how often should people be tested? Because they could be negative for coeliac disease, and then years, months or even just weeks later get the disease. I work on a hospital ward and unless people go private, I can't imagine Drs sanctioning repeated blood tests and endoscopes without symptoms, just in case. Apologies for my not-so-clear reply; I meant that it's not always passed down in families (lots of my family have coeliac disease but I have a couple of friends with it and no one in their family has it- my point was that technically anyone could get it)

    The link you sent doesn't give much information. I'm not doubting this study at all (in fact it's the first one I've heard of so it's great that people are looking into it) 10 death certificates mentioned coeliac disease as the underlying cause of death, but I'm not sure I understand (coeliac disease seems a vague cause of death)- was anaemia, malabsorption or coeliac disease related cancer the cause of death? I have coeliac disease and get very very unwell because of it. But knowing I have it hasn't meant that I get scans and other tests for cancer often, despite my 'increased risk' because GPs wouldn't sanction it. So knowing that I have coeliac disease hasn't made a difference to diagnosing potential cancer. Obviously kk

  • *obviously knowing I have coeliac disease has helped me heal my gut, and try and fix my anaemia, but I'm not sure what can be done about the increase risk of cancer.

  • Hi Ames1912, in case you're interested in Italy they have a CD screening program in their primary schools for children around the age of 6. This makes the Italians much more savvy as a society to the needs of coeliac and all you need to say are either: Io sono celiaco, senza glutine,

    They test children with the blood test for either IGA or IGE, so it sounds to me like the Italians have it sussed.

  • I wasn't aware of that. They don't in Britain though, which is the issue. And even if they get screened at 6, are the ever screened again? The issues still remain that they could develop it aged 7.

  • I agree that they don't in the UK. I just thought that it was interesting and shows that more screening is needed and the advantage of the blood test is it an indicator in case symptoms appear later in life and here's a link on what they do in Italy:

    ncbi.nlm.nih.gov/pubmed/878...

  • Ames1912, if 4 members of your close family have it, I cannot fathom why a GP would not test your family members. Anyone who has a close family member with Coeliac should be tested themselves. But, that being said, the blood testing isn't always correct, as some people who have the disease can come up with negative testing. It all depends on how much damage has been done to what part of the intestine. Italy has adopted a policy of testing every citizen by the age of 6 years, so there are some who realize how prevalent and dangerous it truly is.

  • Coeliac disease is complicated. It presents in a wide variety of ways from chronic symptoms to none at all. It isn't surprising that people can become confused. Ames1912 suggested our disease isn't life threatening and it's easy to conclude that whilst having to dash to the loo may be embarrassing and inconvenient, it not like being rushed to A & E.

    However it is relatively early days in terms of clinicians understanding this disease and the current view is that there are many potential health horrors that can be triggered or made worse by coeliacs eating gluten.

    I had no symptoms bar I low B12 which led to my diagnosis. Went gluten free 6 years ago, but strangely my B12 is still low and requires periodic injections.

    I remain GF, despite (appearing) not to adversely react to gluten, as I am fearful of increasing my risk of other life threatening illnesses such as cancer.

    Returning to the question, maybe those adults (our children) who choose not to get tested whilst they themselves are not parents, will reconsider once they become responsible for their offsprings?

  • SilverDreamMachine- They all have children of their own. Only one is asymptomatic. I would also be relieved for them all to be negative but that's not the point. I do worry about all the damage that could be done.

    Thanks for all the comments, they've helped me consider my ways.

  • It's the fear of being diagnosed.

    Me and my oldest son are non Coeliac gluten intolerant, we are both strictly GF.

    My youngest age 13 is displaying symptoms as well as having glue ear and now thyroid issues.

    He says 'I don't want to be Gluten intolerant so I am not going to try the diet' He sees the lifestyle change his brother has had to make and doesn't want to. I am hoping he will come around eventually.

    I have a host of health problems I do t want my kids to suffer from when cutting out gluten is such a simple treatment

  • Good news in my camp! Spoke to my mother in Canada to confirm she'll be home next month for my visit and she asked about how the GF is doing and even suggested 'rubbing alcohol' for my skin rash *chuckle*

    She lives with chronic joint and bone pain ie arthritis and oestoarthritis. Her first op was about 40 years ago and she lives with pretty constant pain and discomfort. Well.... I told her about Jerry's video link and the link CD has... I felt so so relieved when she said 'I'll give it a try, it couldn't hurt' to a gluten intolerant diet. She also said she's get me some bread for when I visit. Well that is really good news and definitely made my heart a bit lighter. :-)

    Maple

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