Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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. cristiana
      - cristiana commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      The first symptoms I had of coeliac disease were migraines. I think your doctor needs to test you for coeliac disease. The fact you are having migraines at night is interesting, but I never used to drink enough and my headaches were worse when I woke up in the morning. Dehydration was also a big cause for me.
    2. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      I'll ask the same question that knitty kitty asked? On what basis did your Dr arrive at the conclusion that you have gluten intolerance? But let's be clear about terminology because the terms "gluten intolerance" and "gluten sensitivity" are typically used interchangeably out there in the wild and both are used indiscriminately to speak of two different...
    3. Brandy969
      - Brandy969 replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      24

      What should I do with these test results?

      Thank you! I didn’t know this!
    4. Debado
      - Debado commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      Interesting....my Dr says since migranes are my only symptom she says I have gluten intolerance. I have stopped eating gluten. However, it seems to sneak in from time to time. Example: I ate canned mushrooms! Never thought canned mushrooms could have gluten, but they did. I had a migrane for 3 nights straight. Or I eat out, I think I am getting gluten free...
    5. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      What medicine did they give you for migraines? Does it help much? I also suffer from migraines and am on one med for prevention and another for relief after onset. Many times, my headaches start during the night when I'm sleeping but not always. Have you cut back on gluten consumption of late? As knitty kitty explained, you must have been eating generous...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,797
    • Most Online (within 30 mins)
      7,748
    PatrickJ
    Newest Member
    PatrickJ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Brandy969
      What should I do with these test results?

      By Brandy969 · Posted

      Thank you! I didn’t know this! 
    • knitty kitty
      Night time migranes

      By knitty kitty · Posted

      Welcome to the forum, @Debado, Migraines at night can be caused by high levels of histamine.  Histamine Intolerance can cause physical symptoms like migraines. Foods contain histamine.  Our bodies make histamine, an important neurotransmitter.  Our bodies naturally produce more histamine at night as part of our circadian rhythm, our sleep-wake cycles.   Some foods like gluten and nuts contain high histamine themselves or trigger our bodies to produce more histamine.  A low histamine diet is helpful, cutting out high histamine foods and histamine-release triggering foods.   Our bodies can breakdown a certain amount of histamine, but sometimes our bodies cannot keep up with the amount of histamine needing to be broken down, and can be overwhelmed by the amount of histamine resulting in Histamine Intolerance and health problems like migraines.   Vitamins C, B12, Pyridoxine B6 and thiamin B1 help lower histamine levels.  Our bodies use these vitamins to make an enzyme DOA (diamond oxidase) that breaks down histamine.  DAO from beef or pork kidney is an over-the-counter supplement that can be taken.   Riboflavin B2 is very helpful for relieving migraines.   Have you been diagnosed with Celiac Disease or suspect you have it?   Happy Holidays!
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      @ABP2025, Have you thought about having a DNA test to check for known Celiac genes?    I do hope you will make sure that you are getting sufficient gluten to provoke an autoimmune response strong enough that the antibodies can be measured in the blood.  See article below. Celiac disease affects the absorption of nutrients,  including vitamins and minerals.  Your symptoms may be associated with thiamine deficiency.   Migraines and peripheral neuropathy, phimosis (yes, even this), and white spots on the brain are seen in thiamine deficiency.  Celiac disease disrupts the absorption of all the essential nutrients, but thiamine can be quickly depleted, in as little as three days.  Thiamine deficiency can occur even if blood tests show normal levels.  Thiamine deficiency can affect antibody production.      
    • Debado
      Night time migranes

      By Debado · Posted

      Anybody ever heard of getting a migrane from gluten and coconut oil ONLY at night?   If I consume gluten or coconut oil, even in the morning,  I will get a migrane. But not until half way thru the night. I don't get this. Why at night? Why not right after I eat?
    • trents
      What should I do with these test results?

      By trents · Posted

      Early on,  DQ2 and DQ8 were the primary genes that have been connected to the potential to develop celiac genes but more recent genetic research suggests there may be more.
×
×
  • Create New...