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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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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