Problems W/friends And Family

[floridanative]

I was wondering how many of you have family members that were tested for Celiac, have it and now can't cope with the diet. Since I feel so much better off gluten I just can't imagine not sticking to the diet but I know this is not the case for everyone. Someone in my family who was dx'd due to my dx, is upset that she doesn't feel better in only 10 days (been sick for 15+ years...) and that she hasn't lost weight (she gained wt. over the years due to Celiac). She's about to give up on the diet as her worst trait is having no patience whatsoever. My husband told me I needed to accept that she may never get well and that's her problem, not mine.

[Flyingmango]

I am 26, and have suffered from celiac my whole life, not realizing it until a year ago when my mother was diagnosed, and I was then tested. We strongly suspect my grandmother also has celiac, and when she tried the gluten free diet, all of her IBS and intestinal distress symptoms vanished. However, she is the queen of fad diets, and after her doctor (incompetent in my opinion) told her she was too old to have celiac (!), she quit eating gluten free and has all of her old symptoms again. It's so hard for my mom and I to see her this way, knowing that she would be so much healthier if she went back to the diet. My brother and sister were also tested, and fortunately do not have it. However, my sister has fibromyalgia, and is still trying to get to the heart of what her health problems stem from. I sympathize with you trying to help your friend, and it's frustrating.

[cgilsing]

I actually have two family relationships that are similar to yours in ways. I have an uncle that was dx with celiac disease when he was a child and has NEVER followed the diet. He has terrible bowel and skin problems, yet still refuses to entertain the idea of eating gluten-free. I think part of it is my Grandmother's fault, because when he was little she never would cook gluten-free food for him. She also cared for my great-grandmother in her last years. Great-grandma had also been dx with celiac disease and had lived gluten-free on her own, but when she moved in with Grandma, Grandma wouldn't cook gluten-free for her either. It makes me mad, because I have VERY similar reactions to gluten that my Great-grandma had and I know now how awful it must have been for her. Anyways now my cousin (the Uncle's daughter) has been dx with celiac disease and I know they don't cook for her either. For years now my mom has been the one stomping her feet and preaching gluten-free to those in our family that are affected. She has given up, because it doesn't make an ounce of difference if they won't listen.

I also have a member of the family that has what I believe you are describing with your friend. That whole side of the family acts really strange about me and celiac disease. They really treat it like its a inconvenience to them and like I'm just whinning about it. They don't take any consideration for that particular family members health needs and he doesn't really change anything about his diet or excersize either. I think they believe that since both diseases are food related that I should be able to ignore my diet they way he does his.....or maybe they feel guilty about their neglegence of his health when they see how concious my husband and I are about mine....I don't know....but I've lost plenty of sleep over it, and I'm not going to loose any more!

[floridanative]

Thank you so much for sharing. I now realize I read something on another post about someone's Grandmother not being fed gluten free and it broke my heart. That must have been your post cgilsing - I'm so sorry that happened. And now your cousin....that sounds like child abuse or something...I'm sorry to hear parents would actually not want to help their own children be healthy.

flyinymango - I'm glad your Mom is at least healthy with you. Maybe mine will stick to the diet until she starts to feel better.

Either way, I can't lose sleep over what other people will or won't do for their own health. I have my own stresses just learning this new lifestyle (only 2 months in) so really I don't have time to bother others about their diets. Thanks for helping me understand the only person I'm responsible for, is in fact, me.

[Guest Robbin]

I have the same problems with members of my family, but they are so ADDICTED to the gluten that I am so afraid that they will have to reach the worst point in their health to where it affects their life so dramatically that they will wake up. I guess it is like a kid when you tell them something is "hot" but they won't believe what "hot" is until they get burned. You do your part by informing them and caring, but the rest is up to them. My husband's father used to say that everyone should have a guardian to tell them how to live their life with a cattle prod to make them do it. If only I had a cattle prod sometimes.......

[ianm]

I suspect my dad and brother have it also because they have all of the same symptoms I do. However they just don't seem to interested in doing anything about it. My brother's wife is after him to go on a gluten-free diet but that hasn't done any good. All you can do is do what you have to do to be healthy. You can lead someone to knowledge but you can't make them learn anything.

[Jnkmnky]

My mother in law accused me of making it up for attention. She also accused me of making up the STROKE my first born suffered during delivery. I know my medical plan with the military is good and all, but even they won't keep a newborn in a NICU for two weeks without good reason. She's a &^%&^$%*&^*(^& and I really, really, super really hate that woman.

I'm editing... I've regained my composure.... She's mentally ill. I don't hold a grudge. I'm releasing the anger...

[Rusla]

No one in my family outside of my sister has been tested for it and that was only a a blood test not done the right way. After speaking with my aunt it is more than obvious that she more than likely has this. I strongly suspect the male members of my family have it but they are too large of chickens to get the test done.

However, I do consider myself fortunate because of my family and friends support me in this. Ten years ago I am not sure I would have gotten this support.

[tarnalberry]

Someone in my family who was dx'd due to my dx, is upset that she doesn't feel better in only 10 days (been sick for 15+ years...) and that she hasn't lost weight (she gained wt. over the years due to Celiac). She's about to give up on the diet as her worst trait is having no patience whatsoever. My husband told me I needed to accept that she may never get well and that's her problem, not mine.

... Now I think I'm a big reminder of her own failure and I don't want to lose our friendship but I can't even tell her I know of her condition as someone who thought I knew spilled the beans. Any advice? I'm already over being furious that I - the person walking with her, leaving my husband to eat alone once a week - had to find out about her health from someone else.

In the first case, I agree with your husband - you can't control her behavior, no matter how wrong it seems. Yes, it's frustrating, sad, and you might even argue stupid. But the only thing to do is let her know that you are worried about her, and disappointed in her choice, and cannot support her choice, but do accept that she's made it, because there's little else that you can do.

As for the second case... I got lost half way through, and don't really know what mystery you're talking about. I'm guessing you mean that she was dx'ed with celiac, but wouldn't tell you, but someone else told you. Really, someone's personal health issues are their own, and even if you spend a lot of time with them, they may or may not be prepared to talk to someone else about them. There are times I don't feel comfortable talking to my husband about health things, primarily because that means I have to admit them to myself first - talking about it makes it real. You can ask her why she always changes the subject when you talk about something important to you - that's hurtful and it's fair game to ask why she'd hurt a friend - but beyond that, it's her choice.

[Guest nini]

this problem appears to be rampant in my family. My Mom, my sister, bil and their kids, my dad, my aunts and uncles... on and on... only one uncle has been tested for Celiac, but I suspect since he lives in a small town in Florida that the Dr. didn't know what to look for and didn't order the correct tests or the lab didn't interpret them properly because he has ALL the same symptoms as me. My dad is the only one that has tried the gluten-free diet, and it helps him... he was dx'ed with Epilepsy as a kid and also has hypertension and gastro symptoms... My mom did very well on the Atkins diet, but once she went off of it, she gained all the weight back and her symptoms returned, but I guess they don't bother her enough to make a change in her diet. My sister and bil nave numerous health issues and so do their kids, BIL has been in and out of the hospital so many times since I have known him and has had numerous surgeries, and is still not willing to consider changing his diet. Even his Dr.s suggested trying the gluten-free diet, and I think he bought some gluten-free foods, but couldn't stick to the diet and won't consider it. It's very frustrating to me, but I can't do or say anything to them to make a difference.

[Nancym]

You know, I think the problem is a lack of support for people. If you don't have the internet resources of even a support group, you're so alone with this disease. Nothing helps like being able to talk over these issues and have other people help ground you in reality of dealing with the diet and social issues.

My first thought when I get diagnosed with something is to find other people and see how they cope. It works. It really really works.

[floridanative]

Wow - it's good(but sad) to see I'm not alone in this. But I at least have some good news to report. After 10 days gluten free my Mother has started to feel a tiny bit better and thinks it must be the change in diet - of course it is. So now she seems comitted to sticking it out and trying to see if she continues to feel better. She even told me her friends think she's crazy and she doesn't care....very unlike her so I'm thrilled. One of her friends is an ex-nurse and since she never heard of Celiac (ha ha!) she doesn't think it exists.

[tarnalberry]

Tiffany - about my friend, as far as I know she does not have Celiac - it's diabetes. She had plenty of time to turn her health around and she did try somewhat but in the end she chose food over health and now since I've turned my life upside down to get gluten out of it...well I wouldn't want to be around me if I were her. We'll see how it goes. You're right, the friend who told me about the sick friend had no business doing so and was mortified to see that I had no idea of the development. She's apologized and really didn't mean to betray anyone.

I was just surprised by the reaction you displayed. The only thing that came to mind was shame - that she's ashamed that she's diabetic. While it's easy for us to say that there's nothing more ridiculous, we're not in her shoes. Good luck with that one. It's going to be a tough situation.

[Guest Robbin]

I just wanted to add a note on the subject of diabetes. A large number of my relatives have type II diabetes, and as I said before, my son Type I-- I don't know about your friend, but every diabetic that I have known has had HORRENDOUS carb/sugar cravings. Most of the sugar/carbs are in the form of gluten. This is a tremendous struggle--it is like a drug addiction. The symptoms of damage they do to themselves are hidden at first, sometimes years before they notice their eyes are damaged, their kidneys, their sensations in extremities, etc., so that it is an easy addiction to give in to. They don't always have the pain and discomfort that we have--D, cramps, brain fog, weakness, weight loss, etc, so they feel guilty about their lack of self-control and they don't want to give up their "drug" of choice--sugar-gluten-carbs. It is a vicious circle and a deadly disease, and those of you who live with this are fighting a difficult battle. I think that totally going gluten free would be the easiest and best way to battle diabetes, but it is a very hard "sell" to a diabetic. Insulin production, or lack of, affects other hormones which affect the whole person and their mental/physical well-being. Irritational behavior is unfortunately very common because of blood sugar swings. All you can do is support them emotionally and set an example of good self-care, and a lot of prayer. I wish you and your friend the best. Food related illnesses affect us socially as well as physically. It really does suck.

[floridanative]

Like was said earlier, I can only control what I do and my reactions to others. I hope the friendship will survive as I have been and will continue to support my friend's efforts to be more healthy. But if I don't get the same back from her, well I don't know if I'll be able to accept that or not. Only time will tell I guess. I'd like to thank everyone for helping me to understand much more than I did when I sat down to write my original post. As always, it's like a free therapy session, just costs a lot less and you get the help from people on many sides of an issue.

[floridanative]

Well I have to report that my Mother is now on board not only with the diet, but since my sister tested neg. for Celiac on panel, Mother called the pcp's office and asked the test results for my sister to be mailed to my sister. Otherwise we have no idea of the actual number on the test. In my case a tTg only of 10, then 7 two months later led 2 docs to say no way I have Celiac. Then biopsy proved them both wrong. I'm so proud my Mother thought to do this for my sister. We told my sister to do herself but she forgot I guess. In any case, I hope no one else in my family ever gets Celiac but it's not like doctors know much as well all so sadly learned the hard way. I'd hate someone to have a weak positive as I did and be told they are fine, when in fact they are not.