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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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      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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