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Lauriann

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Lauriann Rookie

Hello,

I have been having a hard time with family and friends with things being gluten free. When I was first diagnosed my family didnt believe there was such a thing as Celiac Disease...my family actually googled the term to see if I made it up...that hurt a whole lot..they dont understand that a simple thing as a bread crumb can make me ill for days...I have gotten into arguments that I just dont have a simple food allergy...but I cant seem to get it across to them..they will embarrass me as family socials by calling me silly yak girl or arent you the one who has silicone disease... I have a brother was comes by often whom I love dearly...he brings things to the house to eat when I tell him those things have gluten in them I cant eat it...he tells me to stop just eat it what harm can it really do...

When family comes over I try to tell them that my kitchen is gluten free please dont get crumbs or contimanted it and no one listens to me...I find I spend alot of time crying over this...I have two teenagers at home whom often forget about the contamination also...but they are learning after I become sick for days...

I just wanted to vent and see if anyone else goes through the same with family...Sometimes I think this is bigger than I can handle...

Lauri


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ShayFL Enthusiast

Im sorry your family is not being very compassionate or understanding. You may want to plan a visit to your doctor and take your Mom along so that she can hear it from an M.D. This might make it more of a reality for her and hopefully she will then spread that to others in your family.

Yenni Enthusiast

Oh, that is horrible. I have had a hard time with my husbands family. We used to live with them, but have luckily bought our own little place and gotten out of there. I know it can hurt real bad with family like that.

Sounds like they need to get educated about the situation. ShayFL's suggestion sounds like a good one.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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