We just got off the phone with Lizze’s new Gastrointerologist at the Cleveland Clinic. We were forming a plan of attack to address the possibility of her actually having Celiac disease.
In the past when tested, the bloodwork came back positive for the antibodies associated with Celiac.
However, subsequent endoscopies and colonoscopies were negative.
We just assumed that all was well. Having said that, after listening to all Lizze’s symptoms last week, her new doctor’s first thoughts seemed to be about Celiac and that’s what’s open this discussion once again .
Personally, I’m very familiar with Celiac because we have it in my family. My Mom was very, very ill and at times, found to be in life threatening situations as a result of going undiagnosed for so long. She had lost most of her bone density and appeared to be having cardiac problems.
Anyway, my Mom’s been on the diet for gosh, almost a decade now and has pretty much recovered. In fact, I’m trying to get her to start writing a Gluten Free section here on Lost and Tired. I’ll let you know how it goes.
Now back to my original question.
Is it wrong of me to hope for a Celiac diagnosis?
Here’s my position on this. Lizze is struggling with chronic pain, debilitating daily migraines, depression, sleep disorders, lack of energy as well as tummy issues.
These have been long standing problems and haven’t been tied to anything else, despite exhaustive testing.
According to the Cleveland Clinic, many of her issues could very easily be tied to Celiac, if not, all of them. At this point in the game, there is nothing really that we can do for her because there isn’t anything that seems to help.
If she does indeed have Celiac, that would present a unique opportunity to get her symptoms under control and maybe even get her life back.
To me, that seems like a far better alternative to living in chronic, untreatable pain.
That’s basically my desperate logic. Any thoughts?
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As absurd as hoping for confirmation of a serious disease like celiac might sound, I went through that same hope.
Confirmed diagnosis takes away the uncertainity of what is wrong and gives you the possibility to focus on the cure or illness management.
@Martin thanks. I totally agree r…
I think regardless of whether the biopsy is a yes or no, Lizze should consider going on a gluten free diet for at least six months to a year to see if it helps. I mean, nothing else has worked so far, and she is always suffering. If her body is creating antigliaden antibodies, then it’s got to be wreaking havoc somewhere inside of her. With my own thyroid, it was being destroyed for over a good ten years by antithyroid antibodies before it started failing me. Maybe it is not showing any damage in the scope because the antibodies have not destroyed her intestines enough yet. I had all the hypothyroid and crazy symptoms and because my TSH tests were considered normal, I got no treatment, even with high thyroid antibodies. Boy, was I miserable for many years. Had I known that there were some docs who could have put me on thyroid meds and a gluten free diet could help, I would have done it many years ago.
I don’t blame you for wanting a celiac diagnosis. When I was having my fifteen-month-long headache and the MRI came back normal, I burst into tears at the news. I was so hoping they’d find some abnormality that would explain my problem, even if it turned out to be something horrible like a brain tumor.
MeaghanGood I totally understand. Thanks and I’m glad your pain is better managed 🙂
I understand the wanting a diagnosis part so well… It sounds like
your family has a few of them for the boys – as a Parent you just want
someone to give you a straight answer and a diagnosis helps so much. My sister deals with chronic pain and tummy issues – she just begs to have a name
for it because every time the doctors say it isn’t “this” then they make
you feel a little bit crazy for asking. She says it was like they were
saying it’s mostly in your head! Her response was ‘no it’s in my (you
ElisaM oh we have been there and done that. Thanks for sharing and my best to your sister. 🙂
100% agree with sophiestrains! I think you are RIGHT to hope for celiac, bc so many of the symptoms could be related and could improve or resolve with dietary changes- sounds pretty fabulous to me. If they have already done the sensitivity testing there is no reason to wait any longer to cut out gluten. you just need to be eating it when that testing is done otherwise there could be a false negative. I have both of my boys GF for sensitivities, my husband has chrohns, and his grandmother had diverticulitis. And two of his autistic cousins have crohns. This is not a coincidence. This is the reason I believe in leaky gut and the autism link- there are just too many concurrent cases out there like my family (and it sounds like possibly yours in light of this new discovery). I have some great recipes too if your are interested- all slow cooker related.
jjean3940 thanks. We’re waiting to hear back from the doctor to find out if she wants any further testing. The test results we do have are almost 5 hears old.
I have never commented but have been reading for a while. But I felt compelled to this time. If indeed she is sensitive to gluten, whether the tests show it or not, I think an elimination diet is a simple way to find out. Once gluten leaves her system, it doesn’t take long she should feel almost instantly better.
My daughter is autistic we have eliminated gluten because she had gastrointestinal issues and her symptoms went away almost immediately. I am also thinking of posting some simple kid-friendly meals (on a budget!) That we enjoy.
Just try it! It can’t hurt.
@sophiestrains I totally agree. Right now, we have to make sure there isn’t a need for further testing before cutting it out. Thanks. 🙂 and thanks for commenting. 🙂