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A Relative Is Diagnosed Celiac- Won't Go Gluten-Free

29 posts in this topic

My husband got really sick like that before he found out. So sick that he would do anything to feel better. I completely in my mind believe that he would have died within a week if they had not discovered the results of the blood test when they did. He was told to go gluten free before they even confirmed with thd endoscopy. It may take her hitting rock bottom for her to do it unfortunately. Hopefully it won't be too late by that point.

My son also has it. He had no symptoms or at least noticable ones- but after the biopsy we found out the doctor thinks he has had it for at least three years. We only had hom checked because of my husband. We have encouraged other family members to get checked but they won't. My mother in law recently found out that she has a rare form of rectal melanoma, and I can't help but wonder if she too has it( melanoma is a risk with untreated celiac disease). I just think too many people think if they don't feel bad then nothing is wrong.... Trouble is they don't realize that they don't feel that great!


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Since being diagnosed I've told me immediate family they should get tested too. I'm not so worried on my mom's side but I think my dad and brother should get tested because my dad's sisters both have gi problems - one aunt has crohn's and IBS and the other has a whole bunch of food sensitivities - neither has been diagnosed celiac but still. My brother refuses to get tested because he doesn't have any symptoms. I've told him that you can have celiac without symptoms, but he just doesn't want to know. I get it...if you don't feel sick then it's probably way harder to cut out gluten, but I also don't want him to get osteoporosis and cancer :S. I don't think he has it, but it's not hard to get a blood test.


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This might be totally off track... but is there anyway she could be suffering from some other issues in addition to celiac? Such as bulimia? It could explain the vomiting behaviors and if she went gluten free and continued to have symptoms it would mean admitting other issues. 


It's rare, but ignoring medical diagnosis to cover up undesirable or "forbidden" behaviors does happen. For example, Lance Armstrong used his cancer to cover up the high levels of HCG when he was drug tested. Not entirely the same, but it's a high profile example of this type of behavior. 


And again, it may be completely off track and I don't know your family or your situation, it's just a thought.


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If she's diagnosed with it and she's not doing anything about it, you can't be gluten free for her. In my family, me even mentioning to get fully tested results in eye rolling or a burst of anger. I can send trustworthy medical info, but that's about it.


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    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
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    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
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