Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Need Help Convincing Brother To Get Tested.


Bravie

Recommended Posts

Bravie Apprentice

Hi everyone. I just want to say thanks for helping me whenever I needed it. I would be lost without this site. So thanks, for helping me achieve better health.

My twin brother (I am female, he is male) has been suffering from stomach problems for years and years, since he turned 15. He was diagnosed with crohn's disease at age 15, and he is 21 right now, and he looks exactly the same as he did back then. He is 6'4 and just a little over 100lbs, he cannot grow facial hair for some odd reason, he has diarrhea multiple times everyday, he also says he has bloody stools, he just feels really crappy. He says he has this low feeling, idk if he means nausea or not. He is as thin as a pole. Minus the bloody stools, he has been having the same symptoms as I had before going gluten free, for past few months.

I tried to tell him that maybe he has celiac disease as well, but he pushes me away and denies the possibilities. He still lives with my mom and she keeps saying that it's probably just attributed to crohn's disease. Help! How do I convince him that he may be suffering needlessly, and that a simple change in diet could make a world of a difference? I just don't want him to suffer anymore.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



psawyer Proficient

This is a very difficult thing for all of us.

Your brother knows what you have given up, and probably thinks that the gluten-free diet is very difficult and that he could not do it. So, by avoiding being tested, he remains in denial. He can eat these foods, since he hasn't been tested and diagnosed, so he does not have (in his mind) the same problem you do.

I believe that my father has celiac disease. He has had digestive symptoms for as long as I can remember (I'm 53). I have suggested to him that he may have it, but he has told me that when his digestion is off, he gets comfort from eating things with wheat. He is 83, so maybe a major change to his diet is not something he can deal with, and if he has had these symptoms for decades, this is his version of "normal."

It is hard to watch a loved one suffer, but you can not force them to accept what they want to reject. Gently provide information in a positive sense. Remind him, when you have a chance, how much better you feel. Invite him over for dinner (just him, not mom), and mention AFTER the meal that everything was gluten-free.

Your mother may be factor in this. She may be in denial because of a perception that she is responsible for your celiac disease since it is genetic. Bulls**t! She did not choose her genes anymore than you did. But perception becomes reality...

A soft, gentle telling may work. But I can assure you that pressure will likely only lead to more intense denial.

I hope this has helped.

Link to comment
Share on other sites
scotty Explorer

maybe you could bet him or something...make it fun. i mean make him try the diet for two weeks to a month saying 'you can always go back to eating the other way. c'mon it is two weeks not the rest of your life and if it does not help you get this...' (make sure if he loses it is simple though. i mean totally give him an edge, a better deal in the end). i know it is pretty serious but have him look at things this way--what else has worked? nothing. so it is really nothing as well. and when he notices the difference in himself upon trying to return i think he will understand. you never know the miniscule biological changes until you have a wound heal for yourself.

Link to comment
Share on other sites
sneezydiva Apprentice

This is hard, I know. I am having the same issues with my family, including my DH and MIL, who fit the celiac profile better than I do. It is hard to get people to listen when they aren't ready to. Right now, I'm just mentioning it when if fits the conversation, but not dwelling or arguing about it, and leading by example. The better I feel, and the better I look as a result, the more my family is intrigued. My dad asked me how I lost all my weight, and I told him going gluten-free. And he asked if I thought it would work for everyone, and I told him it is very possible and told him about the book "The Gluten Connection." My sister, after realizing gluten-free pancakes taste normal now wants her DH with lots of symptoms to try the diet. After realizing gluten-free dinners are totally normal, DH is open to trying it,though we are waiting for a "good time" atm. I know I'm talking about trying the diet versus getting tested, but since I don't have an official celiac diagnosis, I don't think anyone on my side of the family will get tested. But I think the same rules apply to convincing your brother to get tested. The better you feel, the more he will notice, and he will want to feel as good as you do. It will take some time, but keep gently mentioning it and leading by example, you can convince him eventually.

Link to comment
Share on other sites
cyberprof Enthusiast
maybe you could bet him or something...make it fun. i mean make him try the diet for two weeks to a month saying 'you can always go back to eating the other way. c'mon it is two weeks not the rest of your life and if it does not help you get this...' (make sure if he loses it is simple though. i mean totally give him an edge, a better deal in the end). i know it is pretty serious but have him look at things this way--what else has worked? nothing. so it is really nothing as well. and when he notices the difference in himself upon trying to return i think he will understand. you never know the miniscule biological changes until you have a wound heal for yourself.

Making a bet is a GREAT idea, especially for guys! Use the month to teach him the tricks of eating gluten-free. It reminds me of this recent article Open Original Shared Link

I hope it works!

~Laura

Link to comment
Share on other sites
loco-ladi Contributor

Well, here is another thought in case your bro isn't "a betting man" ask him to "help" you do some research, just know what he will find and "maybe" if his head isn't as thick as some men I know he will connect the dots and amazingly come to the possibility "all by himself" just remember not to say...

"I told you so" ;)

Link to comment
Share on other sites
ShayFL Enthusiast

I sure hope the "bet" idea will work. Might be great for a guy. I dont know anything about your brother, but it could be a "co-dependent" thing between him and your Mom. Psychological issues are very deep. It maybe that your Mom needs a "sick" kid and your brother needs to fill that role. So you def have a battle if that is the case. A good therapist could help.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Susanna Newbie

My brother also needed a lot of convincing. He had 20 years of gut complaints, and missed out on a river trip in the Grand Canyon "because I would be too far from a bathroom" and got up in the middle of the night for years to have diarrhea--he was told he had IBS, and "a twitchy gut" and "psychological problems". Then, I got diagnosed at age 43, and my then 10 year old son right after. I immediately started working on my brother to get tested. He did get tested and the tests were negative, which I'm convinced was incorrectly done tests--I feel sure he is celiac (I mean, he has the family history, all the symptoms, and when he finally went gluten-free, his symptoms resolved). The hook that finally got him was when I said, "What would it take for you to just try a 3 month gluten free trial? Intestinal cancer? Because that's probably where you're headed." He's been gt for a year now, and all his symptoms have resolved.

Another hook that might work for your brother: tell him chicks dig buff guys--maybe he'd gain weight if he were on the right (gluten-free, presuming he's celiac) diet.

Don't make it a battle: show him how well you're doing gluten free, and how it has enhanced your health. Gently lead.

good luck,

Susanna

Link to comment
Share on other sites
tarnalberry Community Regular

if you can commit to making him *GOOD* meals for a month, and being there for him, food wise and socially, for that whole month, (and if the bet doesn't work ;) ), ask him, "will you just give it a try, if I make the hard part of it easy for you? just try it to prove me wrong? one month, see if it makes any difference in your symptoms, and then I'll stop bugging you."

at the end of the day, even though he's your brother, he's an adult, and he has the right to do things that are bad for him. it's his choice. but you can ask, and the easier you make it for him, the more likely he'll say yes? the co-dependency thing might be an issue, though. that's a tough nut to crack in this case, and if he's self-aware at all, you might just mention it point blank.

Link to comment
Share on other sites
AliB Enthusiast
I know I'm talking about trying the diet versus getting tested, but since I don't have an official celiac diagnosis, I don't think anyone on my side of the family will get tested. But I think the same rules apply to convincing your brother to get tested. The better you feel, the more he will notice, and he will want to feel as good as you do. It will take some time, but keep gently mentioning it and leading by example, you can convince him eventually.

Yesterday I saw in an article by the University if Chicago Celiac Center that 35% of Americans carry the Celiac gene/s. Thats 1 in every 3 people! They did say 'not everyone will get it' - how the heck do they know that? It is only recently that they finally twigged that this is not just a childhood disease that is 'grown out of'!

Despite the 'negative' results, I fully believe that if your test showed ANY antibodies at all, you have Celiac Disease. The reason they set the level higher is because some of the 'control' group had the antibodies. But, as another medical reference argues, what if those control subjects also have Celiac, despite their 'healthy' appearance. I too had a 'negative' result, but as far as I am concerned the fact that I am so much better without gluten and get an extreme reaction when I eat accidentally it is enough proof to me that I am Celiac.

I have spoken to friends about this and they have all been a bit sceptical, but giving them the 1 in 3 figure has got them thinking. Sometimes people need some kind of evidence. If they realise that this is far more common than they think and certainly not the exception, maybe they will start to sit up and take notice.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,502
    • Most Online (within 30 mins)
      7,748

    Nadaly100
    Newest Member
    Nadaly100
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...