How To Convince Family Members To Get Tested?

[ElseB]

Any advice on how to convince family members to get tested? When I was diagnosed with Celiac 4 years ago my parents immediately got themselves tested, and were negative. My sister never got tested. By that time, she had already been diagnosed with Crohn's Disease, and decided that all symptoms she had were Crohn's related. Now, she's on the verge of hospitalization due to severe joint pain. My mom agrees with me that my sister should be tested, if only to rule out Celiac, but thinks my sister is too emotionally unstable right now to suggest that. But given how dumb doctors are they won't think to test her (especially if she doesn't reveal the family history). We're not sure what to do. On the one hand, my sister is an adult (35) and has to take care of herself; on the other hand, as family, we can see a potentially obvious answer, or at least a starting point in terms of figuring out what's wrong with her.

[GlutenFreeManna]

Any advice on how to convince family members to get tested? When I was diagnosed with Celiac 4 years ago my parents immediately got themselves tested, and were negative. My sister never got tested. By that time, she had already been diagnosed with Crohn's Disease, and decided that all symptoms she had were Crohn's related. Now, she's on the verge of hospitalization due to severe joint pain. My mom agrees with me that my sister should be tested, if only to rule out Celiac, but thinks my sister is too emotionally unstable right now to suggest that. But given how dumb doctors are they won't think to test her (especially if she doesn't reveal the family history). We're not sure what to do. On the one hand, my sister is an adult (35) and has to take care of herself; on the other hand, as family, we can see a potentially obvious answer, or at least a starting point in terms of figuring out what's wrong with her.

Unfortunately, if she refuses there's not much you can do. Maybe if she is really sick and going to the dr a lot you could offer to take her to be a support? Then when in the examine room with her and the dr you can causually bring up that you have celiac and sort of "wonder out loud" if she should be tested for that too. You may get lucky and the dr will insist on testing. At the very least you may get it in her charts that she has a family history. However, whatever you do, DO NOT push her or the dr for testing (when she doesn't want it) as it may strain your relationship. My husband tried to convince a dr to test me after I had been gluten-free for more than a year. He didn't know the tests wouldn't be accurate (and the dr was not very knowledgeable about it either). I was SO ANGRY at him for not believing me and treating me like a child in front of a dr. Fortunately, my husband admits when he is wrong and apologized profusely to me when I showed him several articles about proper testing procedures. If my sister had done what my husband had done I would have been even more upset and probably not speak to her anymore. But casually mentioning YOU have celiac may not hurt. It's all in your tone and how you approach it.

[IrishHeart]

Any advice on how to convince family members to get tested? When I was diagnosed with Celiac 4 years ago my parents immediately got themselves tested, and were negative. My sister never got tested. By that time, she had already been diagnosed with Crohn's Disease, and decided that all symptoms she had were Crohn's related. Now, she's on the verge of hospitalization due to severe joint pain. My mom agrees with me that my sister should be tested, if only to rule out Celiac, but thinks my sister is too emotionally unstable right now to suggest that. But given how dumb doctors are they won't think to test her (especially if she doesn't reveal the family history). We're not sure what to do. On the one hand, my sister is an adult (35) and has to take care of herself; on the other hand, as family, we can see a potentially obvious answer, or at least a starting point in terms of figuring out what's wrong with her.

You are an awesome sister!!

My GI says Celiac and Crohn's often go hand-in-hand (ANY autoimmune disease should make a "good" GI doctor suspect Celiac --but unfortunately, they do not) and he tested me right away for Crohn's once I mentioned I had a cousin with it. She may want to consider testing --(or at least going gluten-free) to not only relieve that joint pain, but also stop the assault on her intestines. Joint pain comes from inflammation and if the Crohn's is under control, then something else is going on. This is her chance to STOP further damage.

Would some info support your position?

https://www.celiac.com/articles/915/1/Celiac-Disease-Prevalence-High-in-Patients-with-Crohns-Disease/Page1.html

https://www.celiac.com/articles/22440/1/Study-Shows-Celiac-Crohns-Disease-Share-Genetic-Links/Page1.html

Open Original Shared Link

Open Original Shared Link

I hope she listens to you. I have horrendous joint/bone/nuscle pain from celiac and I also have many family members who are NOT listening to me (after watching me suffer from undiagnosed celiac for years and trying so hard now to regain my health) and all I can do is watch them go down the tubes. I told them exactly what will happen if they ignore the genetic component. They all have autoimmune diseases, joint pain, etc...but no one listens. So, I gave up. It is heartbreaking and frustrating, I know.

Your parents should be retested from time to time. Even if they were negative before, it is my understanding that it can become positive at any time. Given you---and your sister's health history--well, those genes came from somewhere! Genes are hard to deny.

Best wishes to you and your sister.

[Bubba's Mom]

Once I was diagnosed I told my 2 grown sons they should be tested. They both said "no way..I'm not giving up gluten". My oldest son even agreed with me that he probably has it!

My husband has quite a few of the symptoms as well. He refuses to be tested. He travels for his job during the week, so he has to eat out. He says he can't do his job and travel to other countries, etc. with Celiac. When he's here on the weekends and I'm cooking gluten-free he goes out of his way to consume something with gluten so he can "keep his symptoms manageable".

I just don't understand their thinking!

[Bubba's Mom]

Forgot to add..my sister has Crohn's too. It won't go under control and she now has IV therapy once a month. I told her she should ask her Dr. about Celiac testing. She did..but he told her "there's no special diet to treat Crohn's!"

She decided to try the "blood type diet". Her blood type shouldn't eat wheat, along with a lot of other restrictions. She cut it out for a few days then craved Funyions(a snack food with wheat)so she ate them. She said she got sick from eating them. I told that might mean she IS sensitive to wheat. She said it doesn't matter..she can't stop eating it. That kind of thinking blows my mind!

[GlutenFreeManna]

Forgot to add..my sister has Crohn's too. It won't go under control and she now has IV therapy once a month. I told her she should ask her Dr. about Celiac testing. She did..but he told her "there's no special diet to treat Crohn's!"

She decided to try the "blood type diet". Her blood type shouldn't eat wheat, along with a lot of other restrictions. She cut it out for a few days then craved Funyions(a snack food with wheat)so she ate them. She said she got sick from eating them. I told that might mean she IS sensitive to wheat. She said it doesn't matter..she can't stop eating it. That kind of thinking blows my mind!

Actually, Funyuns don't have any gluten ingredients. Open Original Shared Link

I know that's not quite the same as "gluten free" but it's unlikely the wheat in them that caused her to get sick since they don't have wheat. It could have been other ingredients, however.

It is too bad that she won't get tested, however. My parents have the same sort of mentality. My mom says she feels a lot better when she doesn't eat bread, yet she will never get tested because she "couldn't possibly give up her multi-grain bread and raisin bran cereal." I watched my grandmother complain for years about being nauseus-- all she would eat was toast because she was always sick to her stomach and she was always anemic and ate lots of liver too because she couldn't stomach iron pills. She had intestinal cancer last year (survived surgery removing a large protion of her intestines) and now is going through the begining stages of dementia. I have tried asking my parents to get her tested and explaining this could be due to gluten. She's in a small town with a small town dr that is probably as old as she is and has never heard of celiac (or if he has he thinks it's a childhood disease that kids grow out of). It's heartbreaking to watch those we love suffer when they may be able to change that with a simple change of diet. Not much we can do about it however if they will not listen.

[IrishHeart]

Forgot to add..my sister has Crohn's too. It won't go under control and she now has IV therapy once a month. I told her she should ask her Dr. about Celiac testing. She did..but he told her "there's no special diet to treat Crohn's!"

She decided to try the "blood type diet". Her blood type shouldn't eat wheat, along with a lot of other restrictions. She cut it out for a few days then craved Funyions(a snack food with wheat)so she ate them. She said she got sick from eating them. I told that might mean she IS sensitive to wheat. She said it doesn't matter..she can't stop eating it. That kind of thinking blows my mind!

"DeNial"....not just a river in Egypt .....sadly, it will take someone to get as crippled and sick as I was to pay attention to their symptoms more closely. Gluten is often the culprit in these inflammatory conditions.I have tried and tried to get my family and friends to listen --to no avail. Gets tiring, doesn't it? I quit. When they get sick enough, I'll be here to help.

I had trouble convincing doctors to take me seriously and get a proper DX. Your sister's doctor is about as clueless as all the ones I have met. A good GI DOC tests for all CAUSES of inflammatory bowel disease and testing for Celiac is crucial. There may not be a special "diet" for Crohn's, but if he neglects to test for Celiac, too, he may be missing a major diagnosis!!!. If she eliminates gluten, she may feel better AND control the Crohn's. It's worth a shot to feel better, isn't it??

BTW anyone who says they "just can't give up " any food has an addiction issue. Gluten is highly addictive (much has been written about this). I had withdrawal when I went gluten-free, too. However, if you viewed gluten as a toxic poison eating your intestinal lining and causing brain damage, you'd give it up in a heart beat.

Studies link the same genes for Celiac to Crohn's....I'm just sayin....(I posted a few above)

Sorry, but the genetic component is not something you can just "ignore" .

As for your husband's thinking that "eating gluten will manage his symptoms"....HUH????seriously? :blink: WOW!!!

Does he even know what Celiac disease is??? From THAT statement, it would seem unlikely. A single speck of gluten doesn't "manage" symptoms, it CREATES them!!!!!!!! Maybe it is time for him to read some information about celiac and gluten intolerance--just so he sees what is really going on ???

....it seems you are the only " Enlightened One" in your family, Hon. Best wishes!!!!