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I Need To Vent!
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6 posts in this topic

I'm celiac disease, Dx last Dec. My 2 children have genetic disposition, my hubby had weak pos. on blood work...won't do further testing or go gluten-free, not even gluten restricted, my m-i-l is under going testing, thinks she has IBS or reaction to diabetes medicine, was severly painfully bloated after eating 2 bagels in one day...she usually doesn't eat bagel b/c they constipate her. My mother figures I inherited celiac disease from her side of family but doesn't talk of having herself tested b/c she doesn't want to have to give somewthing else up (she's diabetic), also she mistakes the obesity in her family to mean they are all well nourished and couldn't possibly have a malabsorbtion disease. I'm surrounded by ostriches w/ their heads in the sand!!! I can't blame them...if I han't end up in er w/ such severe malnutrition issues, I probably would still have my head in the sand. I just don't know how to handle them all. I want them to all wake up but I can't seem to get their heads out of the sand. Most frustrating is the lack of support I'm getting fr. family about keeping children gluten-free. Sure, let me feed the children gluten until they end up in the er like I did...I'm sure no real damage will be suffered before than (ha! ha! ha!)O.K. sure, genetic disposition doesn't = celiac disease but if gluten is not in diet or atleast reduced, I think I'm keeping my kids from ever suffering excrutiating pain and loss of nutrients. I'm constantly praying for more specifics about this disease...I think the adults would react better if there were more black and white answers. We all have a few similiar symptoms and many different sympotms at the same time. SInce I'm the one who had been diagnosed and now gathers more information, I see their symptoms listed on websites or hear it from other people w/ celiac disease. Even the pedi GI said all first degree relatives should be tested but only the children of people w/ celiac disease are tested. I made him repeat that to my parents when I had the kids tested. How does anyone else handle their families and have you been able to get them tested and have them start living gluten-free? I have no sympathy or tolerance for any of their complaints until they do something about it. Thanks for listening.

----Suzanne

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Hang in there Suzanne. I know how you feel. My family is oblivious to wanting to get testing, even when they have obvious (at least to me!) symptoms. I have 4 brothers and 2 sisters and only my older sister tried to get tested, but her doctor keeps giving her the run around and ordering hte wrong tests. Her 14 year old son has seriously stunted growth (he is the same size as my small for his age 9 year old!) and according to his testing he isn't Celiac, but they only ran one part of the 4 or 5 part blood test to come to that conclusion and that was three years ago. I think it warrants more testing.

My husband won't get tested, even though two of my 3 children have different genes than I do that cause gluten intolerance. I figure if they didn't get those specific genes from me, then wouldn't they have gotten them from my husband?! He says he doesn't have symptoms (which he does, but they are mild), doesn't eat much wheat anyhow, and doesn't want to have to give up foods he likes either. When I bring up the fact that if he doesn't get diagnosed, then his family won't even know that it runs along their side, too, he responds by saying they would never get tested or change their diets anyhow. So what, maybe that's true, but shouldn't that be their decision. This is not a case of what you don't know won't hurt you. This will hurt, eventually.

And I am an overweight Celiac. I was not able to lose any of the 60 lbs. I put on during my pregnancies, until going gluten free and in the past 6 months I have lost 15 lbs without even trying! I am looking forward to losing the next 40+ lbs. :D I know that my body was malnourished and that was why it would hang on to the fat, and I was sick, but not to the point of having severe diarrhea and losing tons of weight that way. Personally, once I found out about Celiac I was not going to just sit around and wait to get deathly ill. I needed to know if gluten was my problem and as soon as I confirmed my suspicians for me and my children, we all went gluten free and feel tons better!

I am of the opinion that if the kids have the genetic propensity to develop celiac disease, then it is wise to have them avoid gluten. Feeding gluten to someone who has the genes is like telling a person who has a family history of heart disease to eat all of the fatty, cholesterol laden foods they want until they have their first heart attack, and then go on a diet. Why wait till you are sick to get healthy, when you have the knowledge to keep yourself from getting sick in the first place. You don't know if you will develop heart disease any more than you know if you will get celiac disease, but why risk it! My kids blood tested inconclusive twice, stool tested positive, and gene tested positive. Their GI doctor doesn't consider them Celiac, but was willing to monitor them on the diet. And you should see how much they are improving on the diet. Growing by leaps and bounds when they were all previously small for their ages, and not so many stomachaches and diarrhea! They are so much healthier now, and their doctors all thought they were healthy before!

Everytime one of our relatives complains I bring up the subject of them getting tested. And when I was at my sister-in-laws house the other day I couldn't help but notice that they buy Pepto Bismol by the case! Not to mention that they are all supposedly lactose intolerant... I was discussing it with a sister-in-law from Colorado at a family reunion (for my husband's side) last week and she asked me what the point of being tested is, if the symptoms aren't bothering you. I brought up the subject of the higher risk of intestinal cancer, as well as, developing other diseases, like diabetes, lupus, thyroid disease, etc. And said that if her children had the genetic posibility of getting severely ill, wouldn't she want to know. It certainly made her stop and think. Of course none of them will consider testing if my husband doesn't start the ball rolling, since they all think it was my "bad" genes that caused it...

God bless,

Mariann

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Oops... for some reason it posted twice, so I deleted the second message content, but can't remove it completely. Sorry...

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Perhaps give them articles written by doctors that describe their symptoms in connection with celiac disease, and then leave them alone--no one likes being nagged or told what to do. You can't control others. Just take care of yourself and your kids and gently (GENTLY!) encourage your family to get tested. Just my $.02. Good luck!

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I like the "articles and information then leave them alone" option for your family, but I might talk to your husband a bit more. Not so much telling him he has to get tested or any of that, but that you are very worried about the long term effects of him eating gluten when he's already tested to be sensitive to it. Telling him that you don't want to raise your children alone after he develops colon cancer, or that you don't want to have to be taking him to the hospital all the time when the kids need their parents may be more effective than telling him that he's hurting himself. (You're talking about how you feel, which is slightly different.)

You might also consider sitting down and asking him some questions so you can understand where he's coming from. Ask him what he thinks the test means, what he thinks that means about his body, what he thinks about the diet, and what makes wheat so important to him. It is conceivable that he finds eating wheat more important than his health and his family (ok... barely, in some messed up way, but not totally impossible in the grand scheme of the universe, I suppose), and he may respond better if he feels you're trying to understand his perspective.

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Hello everybody. I am so glad that i have found this site it has been so informative for me and aslo a great support for me too, I used to think that I was going crazy and that it was all in my head that even though I was sick all the time the doctors could never really figure out what was the cause of all of my health problems. I really hope that the endoscope will finially bring out the truth and I will staart to get healthier. I too am overweight and have no luck loosing, it seems when ever I would try to diet I would just seem to get more tired. I look forward to chating with each and every one of you, because I feel we are all in this together and need eachothers support just to get through these tough times. Well thats all for now I just wanted to say thanks.

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