Getting a correct diagnosis for
Celiac Disease is too often a challenge and can take several years before you
finally get the right diagnosis. It took
my doctor nearly three years of testing, trying different treatments and then
me almost dying because my worst symptoms became so severe. There are over 300 known possible symptoms of
Celiac Disease and they are not all just gut related. In fact, most of them are not. Even with gut related symptoms, doctors often
misdiagnose patients with IBS or other gut related disorders. Celiac Disease is most often the last thing
doctors will check for as a “last resort” like my doctor did. They don’t consider this right away in most
cases. For a symptom checklist to see if
you should be tested for Celiac Disease, you can visit https://www.beyondceliac.org/celiac-disease/symptoms-checklist/. Although this checklist gives only the most
common symptoms. For a complete listing
of the possible symptoms of Celiac Disease you’ll also want to check out this
listing at https://onedishcuisine.wordpress.com/2015/03/19/300-signs-and-symptoms-of-celiac-disease-adults-and-children/.
Out of the listing of 300 possible symptoms, I have chronically suffered with 74 of these throughout my lifetime. I can just about pinpoint when many of the symptoms began. If you have many of the symptoms on either of these lists, don’t wait for your doctor to suggest testing for Celiac Disease. Ask your doctor to test you. If your doctor, as in many cases, unfortunately, says they don’t think that is it without even bothering to test you, find a different doctor! Find one who WILL take you seriously and test you for Celiac Disease.
Out of the listing of 300 possible symptoms, I have chronically suffered with 74 of these throughout my lifetime. I can just about pinpoint when many of the symptoms began. If you have many of the symptoms on either of these lists, don’t wait for your doctor to suggest testing for Celiac Disease. Ask your doctor to test you. If your doctor, as in many cases, unfortunately, says they don’t think that is it without even bothering to test you, find a different doctor! Find one who WILL take you seriously and test you for Celiac Disease.
If you have symptoms from either
of the above lists and also have a relative, especially a first degree
relative, who has been diagnosed with Celiac Disease, you need to be
tested. Be sure to tell your doctor that
you have family members who have been diagnosed and their relation to you. People who have a first degree relative
diagnosed, which would be a parent, sibling or child, are at higher risk for
Celiac Disease. If you believe that you
have Celiac do NOT take no for an answer.
If bloodwork comes back positive
for Celiac Disease – and this is extremely important – do NOT go gluten free
until after you’ve had a confirming endoscopy!
This not only confirms diagnosis, but can give you an idea of how much
damage there is. The more you know, the
better armed you are to be able to take your health back. So, the first question to ask your doctor
upon a positive blood test for Celiac is to refer you to a gastroenterologist
for an endoscopy. When I was diagnosed,
I asked if there were any other tests or follow up that I needed and I was told,
no. I never had the confirming
endoscopy. I had been gluten free for
five or six months before I found out that I should have had that done. By then, I’d had so many of my symptoms begin
to go away and I knew that gluten had almost killed me before my diagnosis, so
I chose at that time not to go back on gluten for the six to eight weeks that I
would have to in order to have accurate results with an endoscopy. I have since been seen by a gastroenterologist,
earlier this year, in fact, who spoke with me about my diagnosis in depth. Even though I hadn’t had the endoscopy, based
on my medical history, symptoms and the improvements to my symptoms, he
confirmed that I definitely have Celiac Disease. I also had genetic testing done this year
that showed that I have both of the Celiac genes, which further confirmed my
diagnosis.
Once you have the confirming
endoscopy, ask to be referred to a dietitian who knows about Celiac Disease and
understands the realities of being gluten free.
I was fully on my own after my diagnosis. My doctor knew enough to do the blood tests,
but couldn’t give me any information about my disease or even what gluten was
beyond telling me that I would have to “give up bread, pasta and stuff like
that”. That was the extent of my doctor’s
medical advice and treatment for my Celiac Disease. I always recommend to anyone newly diagnosed
that they consult a dietitian about putting together a game plan for learning
how to be gluten free. Meeting with a
dietitian will also help you go gluten free in a healthier way, avoiding many
pitfalls that too often the newly diagnosed fall into. By pitfalls I mean, seeking out gluten free
alternatives to the “junk” food you’ve grown to enjoy and indulge in. Fresh, naturally gluten free foods are much
healthier for you. And, in the
beginning, for however long it may take (everyone is different) your body will
be in healing mode. You want to eat
foods that will be gentle on your system and aid in healing.
Finding a local support system is
also vital to helping you adjust to your new reality. Many dietitians may know of area Celiac
support groups. It helps in so many ways
to get plugged into a group of other people who are going through a similar
journey to your own. I had been living
gluten free for over two years when I accidentally stumbled onto our local Celiac
Support Group. I searched the internet
for a group when I was first diagnosed, but I never found anything. It was not well advertised. Eventually, after losing one and then another
group facilitator and sponsor, last year I became the facilitator and sponsor
of the group, myself. Being able to
share my experiences and listen to other people talk about theirs makes me feel
less isolated and gives me hope, a sounding board, a place to exchange ideas
and recipes, to talk about gluten free products we’ve found that are good – or bad,
etc. The people in my group have become
very dear friends. I know that, when no
one else understands what I am going through, these people do. There are also some great online Celiac and
gluten free communities that can be very helpful.
To learn more about Celiac
Disease, living gluten free and learning healthier living, here are some good sites and a blog that I recommend:
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