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 Testing...

Pandoranitemare

Recommended Posts

Pandoranitemare Apprentice
Pandoranitemare
Posted

I recently visited my parents and their diet is extremely high in gluten. I am still eating gluten, as I am waiting on getting my blood test results and don't want to stop in case I need further investigation, but after 2 days with them I felt even worse than usual, which I think was due to consuming even more gluten than I normally would. My whole body felt bruised, and my skin was hypersensitive as if I had sunburn, but with no redness or rashes, and even my normal fatigue was totally overwhelming!

My mum was tested a while back for celiac (blood test) it was negative. However, she continued to have symptoms such as bloating, gas etc and I just found out both her and my father have been suffering from severely itchy rashes, mainly on the lower leg area which comes and goes with no obvious cause, and has proven stubborn to treat, other thsn subsiding and reoccurring of its own accord.

Sadly my mum now has a cancerous stomach ulcer which is terminal (apparently it is in a very unusual place for an ulcer, according to the doctors, which makes me wonder).

When my mum mentioned the rashes, I tried to suggest that it may be linked to gluten, combined with the other symptoms she had - but she is convinced that as she had a negative test it can't be, and will not even entertain the idea. I know she has a lot to deal with, but she mentioned a few times how bloated she was, and is now blaming the cancer, but she did have the symptoms before it, and whilst she feels she does not want another problem, I think if it is gluten then at least it is one she can solve and make her time more comfortable.

Also my maternal grandmother had a lot of problems with diverticulitis, so there is a lot of family history with stomach issues.

If my test comes back positive, I know I will not convince her to get retested, and I am dreading the idea of suggesting testing to my brother, as I can't imagine it will go down well (he is very stubborn and 'loves' his food!) He has recently gone on a diet as he is substantially overweight....if I threw this at him, and he thought he would maybe have to cut even more food he enjoyed, well to be honest I just don't think he would even get tested.

Then I have a daughter in the middle of GCSEs. I don't really want to dump that on her just now. She is at that age where she wants to go out with her friends and eat pizza and be like everyone else, not have to be different if it turns out she is affected.

I know I am jumping the gun a bit, but I can't imagine the doctor wanting to see me about the test results is going to be 'good' news, since I was told if it was clear they would not contact me at all....The wait is killing me, and my brain is working overtime thinking of the things I may have to deal with.

Sorry for spinning out a bit, but insomnia strikes and so does the dreaded case of the 'what if's'...

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

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

If its in the family then I would personally get the kids tested. Obviously you can't make the adults get tested. I know how you feel - I am sure my brother is coeliac as well - and one of his kids has symptoms that could be coeliac, but he will have none of it.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I can recognize Celiac symptoms in several family members. They refuse to be tested..they don't want to know! :o

If someone would have given me a "heads up" about gluten I would have not hesitated to find out if it was the cause of my problems. I just can't understand the logic of people burrying their heads in the sand?

beebs Enthusiast
beebs
Posted

It might depend on the severity, honestly- if I wasn't scared of eating gluten, even though I know I have a problem with it - I doubt I'd be very strict with the diet. Sounds bad and illogical, but I think some people may just be a bit self destructive ( I know I am).

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      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:...
    3. Scott Adams
      0

      Homemade Gluten-Free Egg Drop Soup

    4. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

      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...
    5. lalan45
      - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,841
    • Most Online (within 30 mins)
      7,748
    angelaggagne
    Newest Member
    angelaggagne
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      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.  
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      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—
    • lalan45
      Am I nuts?

      By lalan45 · Posted

      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
×
×
  • 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.