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How To Approach Dr About Testing


Staceyshoe

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Staceyshoe Apprentice

I would really like to get a blood panel for celiac done on my oldest. He odes have "the" celiac gene and has had some type of digestive issues all his life. His symptoms now are fairly mild and he does not have the stereotypical diarrhea. I emailed the pediatrician asking for a celiac panel on him since there is a family history. (I didn't mention that he has already had genetic testing and carries the gene.) He wrote back that he feels the test is unnecessary unless he's having symptoms and that we should have an office visit if he is having symptoms. I am the type of person who consults a dr as a last resort, not someone who runs to them for every little thing. But when I need their help, I want them to treat me a patient who doesn't come for every little thing.

How should I approach him? Should I bring in the genetic results? Should I try to educate him about some celiacs being aymptomatic, or would that alienate him? Should I print off something from an AMA-type website (if so, what?)? Should I just tell him that it would put my mind at ease to rule out celiac and just to please run the test regardless of symptoms?

Please help! Ds is on gluten now, so I'd like to get the bloodwork over with and then do a gluten-free trial. How do you get dr cooperation?


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kareng Grand Master

Try giving him this:

Open Original Shared Link

When an individual is diagnosed with celiac disease, the entire family learns that they must be tested for the condition, for they are now at risk. First degree relatives (parent, child, sibling) have a 1 in 22 chance of developing celiac disease in their lifetimes; in second degree relatives, (aunt, uncle, cousin, grandparent) the risk is 1 in 39. A simple genetic test can determine if further screening is needed or completely rule out the possibility of developing the disease. If the genetic test shows positive for celiac disease, the individual should have antibody screening regularly to help determine if the disease is active.

  • 3 weeks later...
scarlettbama Newbie

Thank you sooooooooooooo much for posting this. I am having blood work done tomorrow, and today I took my list into the GP's office.

Nurse came out stating that she saw no need for any gluten-related testing of any sort, plus, their office did not have that capability. BUT, a lab nearby *would be* able to perform the test if I could justify the reason.

Well, I have my reasons, I won't go into here. Inflammation is SUCH an issue for me, and several doctors have said they believe I have the gluten allergy/gene.

Can't wait to take this with me tomorrow.

Much thanks for the ammo. Love this forum !!!

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    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
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      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
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