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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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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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