In the morning I will be driving Lizze to the Cleveland Clinic meet with her Gastroenterologist. This is a really important appointment because we will very likely find out if Lizze has Celiac disease.
You may recall that Lizze has tested positive for the Celiac antigens. While this test was done about 7 years ago, you only test positive for antigens if your body is reacting to gluten. At the time, her colonoscopy was negative and so her doctor at the time, told her not to worry about it.
10 years ago, my Mom was diagnosed with Celiac disease when no one had ever heard of it before. It’s believed that my Mom went at least 10 years without being diagnosed and it literally destroyed her body.
She’s doing much better now and has become somewhat of an expert in the area, along with my Dad.
Anyway, when Lizze went to her new Gastroenterologist at the Cleveland Clinic, the issue of Celiac disease came up again. Her new doctor is very concerned about this and we are going back in the morning to discuss what needs to be done.
It’s possible that when she tested positive 7 years ago, it hadn’t progressed to the point of damaging her colon.
Anyway, she’s really nervous about this appointment because this could mean big changes to her life.
Some of you may be thinking, why not just go on the diet? The answers simple. If she goes on the diet than any further testing that may need to be done could come back as a false negative. It’s important that we know for sure what we’re dealing with and so we should find out in the morning what we are going to be doing.
Please keep Lizze in your thoughts and prayers. She has more than her share of challenges on her plate already.
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My sister has it and did not have any of the normal signs. Her only obvious symptom was horrible migraines. I really think this might be something worth chasing down. Just remember the testing is not 100% accurate. My father was recently diagnosed with it as well, but chooses to ignore it (hes fighting cancer and has enough on his plate right now). I probably should go on the diet since I cannot afford testing and see if it helps me/my son as well, but honestly, if I don’t have a super good reason to do so, its really hard to get the umph to because it really is a hard diet to live on. I hope you get a good response from the dr, either she does not have it, or it is the root of some of her issues and will be a easy (well relatively) fix.
megskitchen I am sorry to hear of your father’s struggle. Depending on the type of cancer he’s facing, it’s very possible the undiagnosed Celiac has played a role in its development (colo-rectal cancers and non hodgkins lymphoma, in particular, are directly connected to Celiac folks eating gluten). I would really recommend trying a gluten free diet for a few weeks to see if you see any change in your own life…. many of us don’t have ‘classic’ symptoms. The diet change is challenging at first, but it doesn’t take long to get the hang of it 🙂 For me the hardest part is having to prepare my meals at home instead of catching stuff on the fly (I also can’t have nightshades, such as tomatoes or potatoes, which are really standard in packaged gluten free foods, plus the packaged foods are extremely expensive and don’t taste that good).
Good luck to you and your family! I wish your father health and strength!
My Mum’s sister had Coeliac disease in the 60s, before anyone knew what it was. It took them 2 years to figure out why she had failed to thrive and unfortunately by that time she was so week and immune compromised that she passed away from pneumonia. I also carry the gene but haven’t developed Coeliac disease (just lactose intolerance and IBS, yippee!)