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Having Immediate Family Tested

Duhlina

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Duhlina Apprentice
Duhlina
Posted

My mom had a doctor's appointment yesterday and she asked about being tested for Celiac since I have a positive diagnosis now. The doctor ran down the list of symptoms and she said no, she didn't have any of those that he mentioned and he told her he WOULD NOT test her for it then!

I honestly think it came from my dad's side of the family but my mom's sister has CLASSIC celiac symptoms and I've been begging her to get tested and she won't. Of course my dad won't either.....and he feels like crap and already had lymphoma a few years ago, among other symptoms.

Why does this have to be so difficult? *I* wouldn't have been tested either had *I* not INSISTED on it!

Anyone else encountering these obstacles?

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Metoo Enthusiast
Metoo
Posted

My mom had a doctor's appointment yesterday and she asked about being tested for Celiac since I have a positive diagnosis now. The doctor ran down the list of symptoms and she said no, she didn't have any of those that he mentioned and he told her he WOULD NOT test her for it then!

I honestly think it came from my dad's side of the family but my mom's sister has CLASSIC celiac symptoms and I've been begging her to get tested and she won't. Of course my dad won't either.....and he feels like crap and already had lymphoma a few years ago, among other symptoms.

Why does this have to be so difficult? *I* wouldn't have been tested either had *I* not INSISTED on it!

Anyone else encountering these obstacles?

When I went in...the doctor said "I am GLAD you mentioned your abdominal pain, because if you hadn't I couldn't have tested you"...regardless of whether you have family members or not, apparently for the insurance to pay for it, she HAD to have one symptoms that fits for her to test for it.

kareng Grand Master
kareng
Posted

My son's got tested using "family history" as the reason.

If your mom really wants to be tested, she could get some info from the different Celiac Centers' websites and show that to the doc.

Roda Rising Star
Roda
Posted

Our pediatrician refused to order the blood tests on my boys after I was diagnosed. He flat out said no because in his opinion they were fine. I was furious. Fortunately or unfortunately my kids were seeing an allergist/immunologist at the time also. I called explained the situation and they were more than accomidating. They asked me where I wanted the lab slip faxed to. All was well with getting the orders and he ordered a "celiac panel." The stupid lab didn't recognize any test as a "panel" so the defaulted and only tested one. I learned the hard way that every test has to be writtain out exactly or it won't get done. Anyway, two years after mom was diagnosed my youngest son was diagnosed...hmm

Tom2 Rookie
Tom2
Posted

My Mother was finally scoped and diagnosed over 30 years ago after suffering a long time. I only wish the doctors had told her that celiac was hereditary and to have her children checked. Instead, my 2 brothers, sister and myself have all SUFFERED last several years with very serious health problems with symptoms all different than moms but all related to celiac.

Youngest brother, sister and myself unable to work because of celiac and other brother close to medical disability. Y-brother and myself gluten free 1 year and getting better, but ALL of this suffering could have been avoided if the doctors had been better educated, more concerned and less constrained.

psawyer Proficient
psawyer
Posted

The doctor ran down the list of symptoms and she said no, she didn't have any of those that he mentioned and he told her he WOULD NOT test her for it then!

Anyone else encountering these obstacles?

Perhaps between now and her next appointment, mom could "develop" serious diarrhea and bloating. Hard to prove, but that would make the shoe fit.

Reba32 Rookie
Reba32
Posted

it would be nice if family history would make it an automatic necessary test for first gen family members, but it isn't, so we have to keep pushing. Both doctors and first gen family members! My sister has classic symptoms (fatigue, brain fog, vitamin deficiency, etc) but she refuses to get tested, and both her children have classic symptoms, (digestion problems, behavioral problems, growth problems, migraines, etc) and she won't get them tested either. Why? Because it would make life very inconvenient to have to be gluten free, and her children are such picky eaters (her experience, they eat fine for me when their parents aren't around!) she wouldn't be able to get them to eat anything :blink: Drives me nucking futz!

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Celtic Queen Explorer
Celtic Queen
Posted
When I went in...the doctor said "I am GLAD you mentioned your abdominal pain, because if you hadn't I couldn't have tested you"...regardless of whether you have family members or not, apparently for the insurance to pay for it, she HAD to have one symptoms that fits for her to test for it.

I wanted to get tested because of my serious sinus problems. My GP said, "And of course because of your GI symptoms also. If I don't put down GI symptoms, insurance won't pay for it." I had some GI symptoms but they were minor, compared to the other things. But I suddenly developed some so that I could get tested. ;)

navigator Apprentice
navigator
Posted

I was really shocked by this thread. I've had a completely different experience. I live in Scotland and when my adult daughter was diagnosed she was advised that it would be a good idea if I was tested. Foolishly I didn't at the time as I didn't think that I had it. I know, I know - I could kick myself now. Anyway, eventually got tested and experienced absolutely no resistance to my request. My GP strongly urged that all immediate family members get tested- and that was before my results came back. I don't understand what the issue is when it's a simple blood test. It's not as if it's a complicated procedure requiring hospitalisation.

I agree with psawyer. If that's what it takes to get your Mum tested she should do it.

Takala Enthusiast
Takala
Posted

It's a bit bass ackwards here in The American Colonies with the comprehension of your parents could have donated to you your genetic material.

Both my parents are deceased, and both had symptoms that could have been easily seen as celiac- related in retrospect, especially with my one parent passing away before the age of 50. Going back to what I can find of my grandparents, there were also signs that both grandmothers had health problems, altho I only knew the maternal one. In spite of my filling out many, many medical questionnaires about (extended) family history and auto immune type diseases..... the medical establishment here hasn't seen fit to acknowledge that there is a pattern here. Neither have I ever heard of any relative getting inspired to be tested, or do a gluten free diet trial. "their lives," can't force them. :blink:

I have neurological symptoms and arthritis and bone/spinal problems from gluten, have been scanned to show I had brain lesions, plus had a lot of other problems like kidney issues and asthma, so you'd think that my (mysterious) recovery would at least pique somebody's curiosity. What? not skinny and running to the bathroom constantly must be fibro here take a pepcid for that reflux - kai thnx bai !

lovegrov Collaborator
lovegrov
Posted

Ten years ago all my first-degree relatives got tested without trouble, but things with insurance have changed since then.

richard

Meatballman Rookie
Meatballman
Posted

Its amazing how ignorant doctors can be.After years of symptoms.I took matters In my own hands did some research and all indications led to Celiac.When i approached my G.P. and asked for testing he laughed.I was 220 pounds he said I couldn't possibly have it I would be thin as a rail.He prescribed me Prilosec and went home and found a new G.P.He too thought I was a loon but at least he was willing to order a Celiac panel.Two weeks latter he calls me out of the blue and states "I dont know what to make of this but your results are positive for celiac".Off to the G.I. specialist I went and low and behold positive biopsy also.Be your own health advocate its in your best interest.They are Doctors not Gods.Sorry about the rambling but It makes me sick when a doctor looks at someone and because they look healthy they make assumptions.Thank God they dont do this with cancer patients or do they?Hope we never have to find out.

mushroom Proficient
mushroom
Posted

Thank God they dont do this with cancer patients or do they?Hope we never have to find out.

Hah! My mom complained for years of pain in her side. Her GP told her it was radiating from her back. She died of ovarian cancer just 4 months after diagnosis. My best friend complained of pressure in her abdomen for years. No reason was found. She is dead of ovarian cancer because it had metastasized before diagnosis. :angry:.

Meatballman Rookie
Meatballman
Posted

Hah! My mom complained for years of pain in her side. Her GP told her it was radiating from her back. She died of ovarian cancer just 4 months after diagnosis. My best friend complained of pressure in her abdomen for years. No reason was found. She is dead of ovarian cancer because it had metastasized before diagnosis. :angry:.

Thats horrible.Sorry.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

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      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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