Jump to content

  • 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):

For Goodness Sake

Mummyto3

Recommended Posts

Mummyto3 Contributor
Mummyto3
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Sounds like they just gave you the results of the other tests, twice.

Write down what you want to say when they call or you call for the results. Ask if they can send them to you, or email, or you can pick up a copy - whatever works for you. Write this down so you don't forget. Get a Copy even if they are positive.

Ask them to read you the name of the test, the test result (number) & the range it falls into. Like Test ABC is 220 the range for positive is >150. Write on your paper ahead of time - Test name: ____ Result: ______ Range: ____________

Do at least 5 of these lines.

Ask if any other tests were ordered but not back yet. Sometimes one page is still sitting on the doctor's desk to be read.

No matter what the results, ask what you should do next. Even if negative, insist that you are still "sick" and what is our next step.

Get a big piece of paper & write all these things down & leave a space to put the answer. IF its results from 2 of you, 2 pages. Tell the nurse to slow down (nicely) you are a bit confused with all the numbers & letters.

Good luck. The Celiac tests can take longer because not every lab can run them & some only run them once a week on Tuesday.

JenHarris Apprentice
JenHarris
Posted

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Just remember, you can have pretty much all of the outward symptoms of Coeliac (except for DH) and be gluten intolerant/sensitive. Me and my son both have symptoms and I'm going to go through my second round of testing later this year because according to my new doctor, the testing I had two months ago wasn't done right and therefore can't be deemed conclusive, so I encourage you to make sure they are doing the right testing on you. And you might see if they will do genetic testing as well.

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I assume it was in my genes for my daughter to get it, don't know if I'm right. I say it's from me because of family history of bowel problems. I rang today to check what was actually tested, thats when I found out they weren't back. I did consider asking for a copy :)

thanks for advice x

Mummyto3 Contributor
Mummyto3
Posted
  • Author

I spoke to a dr today and she said mine and hubbys test were neg but it doesn't exclude that we don't have coeliac. My levels were 0.3 and his just over 1. She said to ask more about it when my daughter has her biopsy tomorrow. I have the symptoms so not sure now... I don't think I'd bother with a biopsy, I may just go gluten free and see if I feel any better.

Archived

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

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

  • Member Statistics

    • Total Members
      134,119
    • Most Online (within 30 mins)
      10,442
    coeliacmamma
    Newest Member
    coeliacmamma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      New diagnosis

      By Russ H · Posted

      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      Test interpretations

      By Ginarwebb · Posted

      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
    • coeliacmamma
      New diagnosis

      By coeliacmamma · Posted

      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
×
×
  • Create New...