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

Family Members Should Be Tested

Rikki Tikki

Recommended Posts

Rikki Tikki Explorer
Rikki Tikki
Posted

I just had an interesting thing happen. My mom had been sick for several months, weight loss, no energy etc. While I was at the doctor with her I asked that she be tested for celiac. The doctor said he didn't have much faith in the blood test etc. I asked that he test it anyway, as you can guess her numbers were off the chart as positive for celiac.

I had always thought I got it from my dad because he seemed to have many stomach problems. He died several years ago and so there was no way to have him tested.

I was so worried that she had cancer it came as quite a relief to me. She didn't take it quite so well, she shook her fist at me! I laughed and gently reminded her that celiac was genetic so I got it from her and then she said I was the one that asked him to check her for it!

It appears she is going to be fine and I am so relieved.

Thought I should post this in case it would help anyone else.

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

I am also just starting to realize how important it is to get all family members tested. Since I've been diagnosed my grandmother found out she had celiac, just from being screened because I have it, she has had symptoms but the doctors have never thought to test her. My brother is highly suspected to have it as well since he is quite sick right now, he was just tested yesterday. And my aunt (grandmother's daughter) probably has it as well, since she has had problems her whole life and has been told that she has a wheat allergy, we are going to encourage her to get tested as well.

skoki-mom Explorer
skoki-mom
Posted

This is how I was diagnosed. My sister was symptomatic and got tested. I got tested because I'm her sister and found out I have it too. I never would have been tested otherwise because I don't have any symptoms. I just go to show that even family members who do not have ANY symptoms should be screened. I don't think it's necessary to rush out and do it, I just asked for the test at my annual physical.

bluelotus Contributor
bluelotus
Posted

I have plenty of family memebers that should be tested, but don't consider themselves as candidates or are in denial b/c they fear the change in their eating habits. It really gets to me at times, but I guess that is what family members are supposed to do - get to you

Guest DanceswithWolves
Guest DanceswithWolves
Posted
I have plenty of family memebers that should be tested, but don't consider themselves as candidates or are in denial b/c they fear the change in their eating habits.  It really gets to me at times, but I guess that is what family members are supposed to do - get to you

<{POST_SNAPBACK}>

I asked my mother to get tested and she said she would ask her doctor at her next appointment in October. She said if it will "ease my mind" she would do it. :)

Wandering Hermit Contributor
Wandering Hermit
Posted

My kids had a checkup at the same clinic whgere I was dxd. We asked their doc about having them tested. He said, no. Not necessary.

Doctors. :angry:

Rachel--24 Collaborator
Rachel--24
Posted
My kids had a checkup at the same clinic whgere I was dxd. We asked their doc about having them tested. He said, no. Not necessary.

<{POST_SNAPBACK}>

Why would they refuse to test the kids if you were dx'd there? I thought that they would automatically agree that any family member should be tested?????? <_<

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

Celiac.com Sponsor (A8-M):


Merika Contributor
Merika
Posted

Wandering,

Your doc is wrong. Your kids should be tested, assuming they are over age 2 or 3 (no point if asymptomatic under this age, as false negatives are common). EVERY first degree relative should be tested. Next time you're there, *insist* he test them. :)

Merika

Guest DanceswithWolves
Guest DanceswithWolves
Posted
Wandering,

Your doc is wrong. Your kids should be tested, assuming they are over age 2 or 3 (no point if asymptomatic under this age, as false negatives are common). EVERY first degree relative should be tested. Next time you're there, *insist* he test them. :)

Merika

<{POST_SNAPBACK}>

I don't understand what's with these doctors?

Is it the fact that they all want us to stay sick? They diagnose us all as having IBS and then throw some pills at us.

I can't wait to hear what excuses they come up with I go back on Tuesday for my results. :angry:

Wandering Hermit Contributor
Wandering Hermit
Posted

The kids' doctor said - "they don't show any symptoms, they don't need to be tested."

Idiot. We're gonna change doctors.

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

I know what you all mean about doctor's! I had asked my brother to be tested, he went to the doctor who told him, "why would you want to go on that awful diet if your not having any symptoms?" My thought was that it may save him years of damage to his body. But, what do I know, I am just a social worker! :angry:

bluelotus Contributor
bluelotus
Posted

I hate doctors.......enough said. All a bunch of idiots. I come from a biological science background and understand how difficult it is - too many variables. Forget the "It isn't rocket science" saying and replace that with biological science. People are not the same - everyone's body is different as well as their environment. For doctors to make gross generalizations and assumptions is generic, bad science, and bad medicine. They can't get over their egos or think outside the box long enough to realize this. I understand that generalizations aid in memory, etc., but OMG!! Enough studpidity already, docs!!!

skoki-mom Explorer
skoki-mom
Posted

I guess I have been really lucky because my GP has been great about this since the start. She didn't think I had celiac disease when I asked for the first test (neither did I), but agreed it was probably a reasonable request given my sis has celiac disease. When it came back +, she told me straight up that she didn't really know what to advise someone like me because she had never before had anyone come back with + positive test results but not have any symptoms. So, she consulted a GI, and I know she has spoken with him about me on at least 3 occasions and has been great about getting back to me with information and stuff. She agreed the kids should be tested and not only did we do an anti-endomysial, she suggested we do the transglutimase as well since dual results would be more conclusive and it would avoid having to poke the kids twice. My GI has been great as well, and told me he would consult me to a pediatric GI if my kids came back +. Luckily, my girls tested negative on both screens so I don't have to worry about that. At any rate, I feel really lucky that I have been given great care to this point and treated respectfully by the doctors I'm working with.

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

Well said bobcat girl! I like your spunk.....

Lori, I am glad you have had good luck, too many of us have had rotton luck regarding this it's nice to hear positive stories!

Dittenheim Newbie
Dittenheim
Posted

Regarding diagnosis of Celiac:

I run the education programs for a major genealogical society. Just coincidentally I had a program at the society on Saturday featuring Thomas Shawker, an MD who discussed DNA & genealogy, including genetic testing and the benefits of tracing your family's health history.

One of the hereditary diseases he discussed was celiac. I asked him lots of questions. Apparently it is a recessive disease - you need to get the genetic defect from BOTH parents in order to develop it. Because full siblings get their genetic make-up from the same two parents if both parents are carriers they have a fifty-fifty chance of having celiac. Even those who don't actually develop the disease are probably carriers. The children of carriers will only get it if the other parent is also a carrier. However, because they get half their genes from the carrier - they also may be carriers.

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

That's really useful information, thank-you!

Merika Contributor
Merika
Posted
One of the hereditary diseases he discussed was celiac. I asked him lots of questions. Apparently it is a recessive disease - you need to get the genetic defect from BOTH parents in order to develop it. Because full siblings get their genetic make-up from the same two parents if both parents are carriers they have a fifty-fifty chance of having celiac. Even those who don't actually develop the disease are probably carriers. The children of carriers will only get it if the other parent is also a carrier. However, because they get half their genes from the carrier - they also may be carriers.

<{POST_SNAPBACK}>

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Merika

Dittenheim Newbie
Dittenheim
Posted

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Merika

I don't have a link to this. I got the information during Q&A after the lecture.

Dr. Shawker works for the National Institutes of Health in Bethsheda, MD and they are currently doing a study on Celiac. You may want to take a look at their website: Open Original Shared Link

I found another site Open Original Shared Link

which discusses the familial odds of developing Celiac, but doesn't specifically mention recessive or dominant tendencies.

I'm going to see if I can get Dr. Shawker to write something for our forum.

Dittenheim Newbie
Dittenheim
Posted

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Here's something which discusses the recessive tendency of Celiac: Open Original Shared Link

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.