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

Blood Tests Negative?


jaycee30

Recommended Posts

jaycee30 Apprentice

I wnet in last week and had blood drawn to be tested for gluten intolerance/celiac. The nurse called me back yesterday and told me that the tests were negative.

I am wondering if my diet could just be so low in gluten on a general basis, that the blood tests are wrong?

I am quite allergic to eggs (white and yolks). Last year I had two bad reactions; heart palpitation, low BP, flushing and then extreme pallor, etc. after eating meals that contained eggs. So I went to an allergist, who pulled blood and tested me for 35 common foods (whear, soy, corn, pork, chicken, beef, MSG, eggs, milk, etc.) The eggs came back positive, the rest negative. Since then, I have not touched an egg product of any kind. I eat no prepared foods, no instant foods, no gravy mixes, no breads, pasta, pastry, muffins, etc. My diet consists of food I prepare myself with some type of meat or fish, potatos or rice and a wide variety of veggies and fruit. My general rule of thumb when reading ingredients, is if there are more than 4, I don't eat it.............

Once a week, I would indulge in pizza from Sam's Club (their crust has no egg product) and once every two months or so, dinner at a mexican restaurant that is willing to prepare my food with no spice mixes, etc.

I've found that within about 8 hours after eating tortillas with my dinner out or pizza, I bloat, constipate, have belly pain, feel a hearbeat in my belly and get sore and itchy right around my belly button. Someone at a NEW allergist office mentioned gluten and I started looking around (right here as a matter of fact) and then asked to be tested.

With so little gluten in my diet on a day to day basis, is it possible that the blood test is wrong? Could I be "gluten intolerant" and its not finding it? I've had several tests for my stomach issues and all is normal there.

Thanks for your time,

Jen


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Yes, that could be an issue. As could the exact tests the doctor ran. And even then, you may not have enough intestinal damage for a blood test to register positive. When my blood tests came back inconclusive (I had been gluten-free for two weeks), my doctor suggested continuing on the gluten-free diet for a few more weeks (as I had seen an improvement in my symptoms) and then doing a gluten challenge (eat a bunch of gluten), and see how it goes. That gave me my answer!

celiac3270 Collaborator

First off, your diet could be so low-gluten already that the tests messed it up. More likely, however, you're just one of those common celiacs who get negative blood results and postive biopsies.

flagbabyds Collaborator

Probably because you are only eating gluten like once or twice a month indicates your low blood results, try the strictly gluten-free diet and see if you feel better.

Guest barbara3675

I have replied on another post today about this, but yours is appropriate too. I just got back a negative result to one test, but the doctor didn't tell me which test he was doing. I ate gluten up to and through the day of the test/waiting until the day after the test to begin the gluten-free diet. I really do say that I am feeling much better, but I still have a tender tummy. If I am understanding right, it can take some time for that to correct itself and on top of that, I have fibromyalgia and hurt most of the time anyway. I have to learn to discern between the kinds of pain I am feeling and just where it is coming from I guess. I have a granddaugher who is six that has had celiac disease, a definite diagnosis, since she was one year old. I know how to lead the gluten free life and have decided to give it a whirl and see if the "tummy tenders" will go away. My internal problems are constipation with the tendancy to develop uncontrollable diarreah in a heartbeat, very embarrasing. I did read in a celiac book that this goes along with the disease. Barbara

gf4life Enthusiast

Jen,

I also had negative blood tests, and my normal daily diet was pretty low in gluten. I wondered if that might have messed with my results. Also, I have never been able to get qany of my doctors to check my serum IgA level. There are an estimated 10% of Celiacs who are IgA deficient and those people would generally have false negative results. If your doctors dodn't test your serum IgA, then that might be something to ask for. I did eventually get a biopsy done, but only after going gluten free and then back on gluten again. My biopsy was aslo negative.

Now most people would just drop it after negative blood and biopsy, but there was no disputing the fact that I was horribly ill while consuming gluten and so much better while gluten free. I eventually had the stool and gene tests done at Enterolab and both those were positive for gluten sensitivity (and casein sensitivity) and I carry one of the main genes for Celiac Disease, and another that causes gluten intolerance. I also had my three kids tested with Enterolab after their blood tests came back IgG gliadin positive only, negative on everything else. We never had biopsies done on the kids, not worth putting then through that when we already had our answers from the Enterolab tests and their improvement of symptoms on the diet.

I really think doctors should put more faith into the diet as a test. Most doctors will tell you that the diet is just too hard to follow 100%. My kids doctor told me there was no way I would be able to keep the kids on the diet! I disagree. It has been pretty easy to stick to it, and the kids are so much healthier now that they choose to keep themselves very strick on the diet.

Have you tried the gluten-free diet? Do your symptoms improve while gluten-free?

You could check into Enterolab Open Original Shared Link

God bless,

Mariann

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,136
    • Most Online (within 30 mins)
      7,748

    Jamy
    Newest Member
    Jamy
    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

    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • 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.