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How to cope with my sister's diagnosis with lack of testing

silky-chicken

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silky-chicken Newbie
silky-chicken
Posted

Hi everyone! I really need some advice on how to handle a situation. My niece was diagnosed celiac disease, by blood test, 3 months ago. I was diagnosed 2 months ago. The past 2 months have wreaked havoc on my emotions and coping with being gluten-free now. My niece's mother, my older sis, has recognized that she has at least a gluten intolerance. My sis went to the dr today to have the blood test done after describing her symptoms to the dr, he suggested that she do a gluten challenge, well she already has and has suffered since going with out gluten then starting back. So without a blood test or biopsy, her dr diagnosed her with celiac disease. Her dr also described to her "well now you are allergic to gluten start listing that on your paperwork." But celiac disease is not a gluten allergy.  My sister today said, "well the number of celiacs in the family is growing." But do we really know that???I don't know, how to put it exactly into words, celiac disease still scares me. I would do anything to not have it, it's changed my life completely... and without any diagnostic tests she is now diagnosed... like am I frustrated for no reason? Am I being stupid? I feel like she could have nonceliac gluten sensitivity... or maybe she does have celiac... it just makes me uncomfortable... maybe because I didn't rest until I got my test and my results were in. I didn't just accept that I had it. I had to see the blood test. Maybe I just need a hug. I'm not sure. 

any words of wisdom or kind thoughts are appreciated. 

-Silky

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kareng Grand Master
kareng
Posted

It appears that gluten make her very sick, right?  So, calling it Celiac is fine with me ( a fully diagnosed Celiac) as long as she lives like a Celiac.

 

as for the " gluten allergy" comment.  The doctor is correct about filling out medical paperwork.  There is no place  to note " Celiac" and have it mean much to your care in the hospital.  Put it under illnesses and  put it in allergies - then put wheat, rye, barley as well  as " gluten".  That is where a medical professional will look to see if you can have Saltines after a procedure.  Even then, you still need to explain it.  

cyclinglady Grand Master
cyclinglady
Posted

My hubby went Gluten Free per the poor advice from my allergist and his GP 15 years ago!  Four years ago, I was diagnosed with celiac disease.  Does he have celiac disease or not?  We will never know.  He is not going to do a challenge.  We kind of like paying our bills and eating!  We know gluten makes him sick.  

I get needing to know for sure about a diagnosis.  I knew what gluten free meant.  I needed definitive proof.  I got it.  

I get saying it is an allergy.  So many people, including medical do not get the severity of a gluten exposure to a person who has celiac disease.  

I think you just need a hug!  ?

Ennis-TX Grand Master
Ennis-TX
Posted

Seems a bit unfair I know you having to suffer from all the testing and changing then she just goes oh well I seem to have similar issues I must have it then gets the the diagnosis without the weeks of the challenge suffering and testing......but this disease is mostly a genetic issues, if you and others already have offical dia. she is very likey to have it also. Your lucky in that respect, I was adopted and suffered years of odd issues that progressively got worse as life went on. And no one in my family understands my pain, at least you have a cooking partner and your family can fix gluten-free meals for each other.

Look on the bright side if she adheres to the diet as strictly as you do you can have family get together s with gluten-free meals...I can not unless I Cook everything for my family. In a way your a tad blessed in that respect.

Oh to make some things easier for gluten-free shopping and eating I have been working on a list of gluten-free food alternative and brands.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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