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Blood Test

totosamnat

By totosamnat
in Doctors

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totosamnat Rookie
totosamnat
Posted

What should I do? My doctor is refusing to preform the blood tests for celiac disease. I have many of the symptoms (no time to list them) and my dad, grandpa, uncle and multiple cousins have celiac. Help? My mom is telling me not to start the diet before I get tested, but if i'm not going to be tested, I can't last with the symptoms anymore. Advice?

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GeoffCJ Enthusiast
GeoffCJ
Posted

Is getting a new doctor an option?

Phyllis28 Apprentice
Phyllis28
Posted

If you want to get tested, one option is to find a new doctor, if possible. One way to do this is to contact the celiac support group and ask them for recommendations.

Another option is to speak with your mom about not getting tested at all and simply going gluten free.

lizard00 Enthusiast
lizard00
Posted

I would second the finding a new doctor option. What is his reasoning for not testing you? Seems that with so many in your family already dx'ed he would want to test you.

Ursa Major Collaborator
Ursa Major
Posted

Have your mom come with you to a doctor's appointment and DEMAND celiac disease testing for you! You have the symptoms, and others in your family have celiac disease, including your dad. Any doctor worth anything would test you with your genetic background.

If he still refuses, you need to see a new doctor.

jerseyangel Proficient
jerseyangel
Posted

It sounds to me like this doctor knows very little about Celiac Disease.

My Gastroenterologist mentions at every visit (and wrote on my test results once!) I need to have my family members tested. With your symptoms and family history, it should be a given that you are tested.

If he still won't do it, you should really find another doctor. :)

ThatlldoGyp Rookie
ThatlldoGyp
Posted

Hi, I had the same issue. I almost got into a yelling match with my former Dr. about getting tested. She wanted to do a work up for IBS and Crohn's first, because, "going gluten-free is an expensive and life changing diagnosis". Well, I felt so bad I was ready for a life change, and it is not like the other two possibilites were not going to change my life either!! So, I stayed as calm as I could and stated that I was not asking for an invasive procedure, or expensive testing. I just wanted 2 little blood tests done. She could order them or I would find someone else to be my Doctor. I also stated if she didn't order the tests, I would like for her nurse to go ahead and start making copies of my medical file as I was changing Dr.'s that day. Note, I was ready to walk that day, so be prepared if he says no! (note, this was after having tested for thyroiditis, being told it was "normal periomenopause", being accused of having an eating disorder, being told I need prozac and therapy, pill seeking behavior (I didn't want or ask for any! Where did that come from?), the usual run-around nightmare we go through).

Well, I did get the tests and 4 days later I got a call (from her nurse, not her) to let me know that not only was I positive, but my tTg was off the charts! I am hoping it was a humbling experience for her! So,my best advice? Go in with your mom, two people stating a case are better than one. Plus he might think twice before dismissing you again. But honestly, I would seriously consider just changing Doctors. Another thought, have an article or 2 about celiac ready for him, sometimes documentation helps persuade them.

Just so you know, I did go ahead and switch to a more celiac savvy Dr. after my testing just because I just didn't want to fight for every aspect of my healthcare. My new Dr. is in the same bldg as my GI and they communicate often.

I think sometimes Dr.'s forget that the D in MD stands for "Doctor" NOT "Deity" and get so caught up in staying in charge of everything/ being right that they forget the 4 most important things about practicing their art: to LISTEN , LEARN, INVESTIGATE and REFER!

P.S. If your doc can't or won't say, "I don't know" about anything, RUN!

Wow, looking at the shorter answers, I'm guessing I still have some "baggage" about mis-diagnosis and fighting to get the tests! lol! btw, it was my husband who figured it out, not my Doctor. I'm sure that didn't help with her ego issues either!

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sissyjane Newbie
sissyjane
Posted
What should I do? My doctor is refusing to preform the blood tests for celiac disease. I have many of the symptoms (no time to list them) and my dad, grandpa, uncle and multiple cousins have celiac. Help? My mom is telling me not to start the diet before I get tested, but if i'm not going to be tested, I can't last with the symptoms anymore. Advice?

Print out the symptom check list from this link Open Original Shared Link

and ask to have it tested "just to rule it out". I went to my appointment yesterday and didn't even have to use the information I had printed out. I asked to be tested, and my doctor said "lets do a Celiac Panel".

So the blood has been drawn, and I'm waiting for results.

Good luck to you, and if that doesn't work, I think I'd be looking for a different doctor that listens to your concerns.

dawnhulio Newbie
dawnhulio
Posted

From my recent experience I say you need to INSIST upon the testing. Point out the facts (familial diagnoses), symptoms, etc.

I have ran into the same thing with a few docs; thankfully we moved from our rural area to a metropolitan area. Switched docs, found one who was familiar with my situation (I already have autoimmune related diseases: Type 1 Diabetes, Graves' Disease, and vitiligo.) When I explained that I wanted the screening just to be sure, he looked at me as if I were smoking illegal substances. I was told that the only reason celiac would even be considered was because of rampant diarrhea and weight loss. I had to counter back with the fact that it's more common than once believed, and that my own research into the relationship between having other autoimmune related disorders and celiac put me at even higher risk... so how could it hurt?

He ordered the blood panels on the spot. Pulled last Monday, awaiting results. I don't care if it comes back positive or negative, just knowing yes / no is all I need. Tell your doc it's important to you, and if he has a few minutes, he should pull up Open Original Shared Link. There is a tab dedicated to medical professionals that explains the common misconception that celiac disease is 'rare.' Good luck! ;)

nikky Contributor
nikky
Posted

did you know you can get self testing kits? you can get them from chemists, they are just simple finger prick tests, if it comes back positive then your doctor will have to listen

or you could try switching doctors

your mother is correct about waiting before you switch the diet, if you dont then it could mess up the test results

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