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Family Testing...

Pandoranitemare

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Pandoranitemare Apprentice
Pandoranitemare
Posted

I recently visited my parents and their diet is extremely high in gluten. I am still eating gluten, as I am waiting on getting my blood test results and don't want to stop in case I need further investigation, but after 2 days with them I felt even worse than usual, which I think was due to consuming even more gluten than I normally would. My whole body felt bruised, and my skin was hypersensitive as if I had sunburn, but with no redness or rashes, and even my normal fatigue was totally overwhelming!

My mum was tested a while back for celiac (blood test) it was negative. However, she continued to have symptoms such as bloating, gas etc and I just found out both her and my father have been suffering from severely itchy rashes, mainly on the lower leg area which comes and goes with no obvious cause, and has proven stubborn to treat, other thsn subsiding and reoccurring of its own accord.

Sadly my mum now has a cancerous stomach ulcer which is terminal (apparently it is in a very unusual place for an ulcer, according to the doctors, which makes me wonder).

When my mum mentioned the rashes, I tried to suggest that it may be linked to gluten, combined with the other symptoms she had - but she is convinced that as she had a negative test it can't be, and will not even entertain the idea. I know she has a lot to deal with, but she mentioned a few times how bloated she was, and is now blaming the cancer, but she did have the symptoms before it, and whilst she feels she does not want another problem, I think if it is gluten then at least it is one she can solve and make her time more comfortable.

Also my maternal grandmother had a lot of problems with diverticulitis, so there is a lot of family history with stomach issues.

If my test comes back positive, I know I will not convince her to get retested, and I am dreading the idea of suggesting testing to my brother, as I can't imagine it will go down well (he is very stubborn and 'loves' his food!) He has recently gone on a diet as he is substantially overweight....if I threw this at him, and he thought he would maybe have to cut even more food he enjoyed, well to be honest I just don't think he would even get tested.

Then I have a daughter in the middle of GCSEs. I don't really want to dump that on her just now. She is at that age where she wants to go out with her friends and eat pizza and be like everyone else, not have to be different if it turns out she is affected.

I know I am jumping the gun a bit, but I can't imagine the doctor wanting to see me about the test results is going to be 'good' news, since I was told if it was clear they would not contact me at all....The wait is killing me, and my brain is working overtime thinking of the things I may have to deal with.

Sorry for spinning out a bit, but insomnia strikes and so does the dreaded case of the 'what if's'...

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beebs Enthusiast
beebs
Posted

If its in the family then I would personally get the kids tested. Obviously you can't make the adults get tested. I know how you feel - I am sure my brother is coeliac as well - and one of his kids has symptoms that could be coeliac, but he will have none of it.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I can recognize Celiac symptoms in several family members. They refuse to be tested..they don't want to know! :o

If someone would have given me a "heads up" about gluten I would have not hesitated to find out if it was the cause of my problems. I just can't understand the logic of people burrying their heads in the sand?

beebs Enthusiast
beebs
Posted

It might depend on the severity, honestly- if I wasn't scared of eating gluten, even though I know I have a problem with it - I doubt I'd be very strict with the diet. Sounds bad and illogical, but I think some people may just be a bit self destructive ( I know I am).

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