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

Negative Blood Test, Bummed I Still Have No Answer

Jake'sMom87

Recommended Posts

Jake'sMom87 Newbie
Jake'sMom87
Posted

So I have been to so many doctors and specialists and have had no answers to my 2 years of symptoms. I had the celiac panel done yesterday and results were negative all the way around. I will post later when I have access to them, but they were definitely negative from what I saw. It's so frustrating I was honestly hoping I had celiac so I would have an answer to my problems. Just want to say thank you to everyone for taking the time to help me and I wish you all the best!

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

Celiac.com Sponsor (A8-M):


w8in4dave Community Regular
w8in4dave
Posted

Well I wouldn't give up on it!! Alot of people have a negative 1st. It is very frustrating!! but that doesn't mean you don't have Celiac just means you tested negative. 

cyclinglady Grand Master
cyclinglady
Posted

Did you get your thyroid re-tested?  A few weeks ago, your TSH was near a 5.  That's too high even if it's within range.  Plus, you mentioned anxiety and eye pain.  I think you said that one eye was popping.  You should get a thyroid antibodies test.  It's possible to fluctuate between hyper and hypo.  I should know, it happened to me this past year and it drove my doctor nuts!  Finally, it's settled down.  

 

Don't give up.  You may have a gluten intolerance instead of Celiac.  That's what my husband has.  He's been gluten free.  Never tested.  Just went gluten-free as recommended by my allergist and his GP.  Took a year to get used to the diet, and now he's healthy and happy.  He never get tested -- why bother?  Gluten makes him sick!  

 

Good luck to you!

GFinDC Veteran
GFinDC
Posted

You might be one of the people who has symptoms but fails tests.  The article linked talks about people with celiac like symptoms but they don't pass the standard tests.  There are more of them than the people who do pass the tests.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Cara in Boston Enthusiast
Cara in Boston
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

deb-rn Contributor
deb-rn
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

I see my Dr today.  I felt so much better when I was off gluten.  I know I have to keep eating it until I'm blood tested, at least!  The thought of putting that in my mouth makes me not want to eat!!  Which is saying a LOT for me!  I don't care if I get a diagnosis or not, but IF he wants to test me, then I have to continue to eat it.  Now I realize what my "mystery illness" has been all these years!  Until recently, it was a minor annoyance!  The brain fog has been killing me lately.  I'm hoping my Insomnia will get better too!  I'm not afraid of the diagnosis.... instead very happy to know why I have felt the way I do for so long!  I have gained weight, which isn't the norm, but my body doesn't really react normally to ANYTHING anyway!  I see this as a chance to feel great and a challenge for my cooking skills.  Husband and I can both cook, so we will just slightly modify what we do.  We have a garden and that helps!

 

Good Luck to you!

 

Debbie

DazzlingCreations Newbie
DazzlingCreations
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

 Hi Cara in Boston, I'm new here and I see you talk about the "gluten-free diet" could you reply with a link to where I could find that specific gluten-free diet. Thank you.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

 Hi Cara in Boston, I'm new here and I see you talk about the "gluten-free diet" could you reply with a link to where I could find that specific gluten-free diet. Thank you.

 

 

Kind of an odd question on a forum that is all about the gluten free diet for people with Celiac Disease or Non-Celiac gluten Intolerance.

 

Eating gluten free is a medical diet, it isn't meant for weight loss.  If you think you have Celiac disease, you should get tested before going gluten free.

 

You might find this link helpful.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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. Flash1970
      - Flash1970 commented on Scott Adams's article in Additional Concerns
      1

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

      He should have gotten millions. How much is your life worth?
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      @cristiana, I react the same way. Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies. We have opioid receptors throughout our...
    3. knitty kitty
      0

      About Celiac Remission

    4. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748
    Maggie1349
    Newest Member
    Maggie1349
    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

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • 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.