Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Having Immediate Family Tested

Duhlina

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.