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


LeahBanicki

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Skysmom03 Newbie

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!

  • 4 weeks later...

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kater Rookie

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.

  • 3 months later...
EmiPark210 Contributor

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.

  • 2 weeks later...
cavernio Enthusiast

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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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
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    • knitty kitty
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