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 Test Negative


Dreamer80

Recommended Posts

Dreamer80 Newbie

So I just called to get the results of my bloodwork and was told my celiac test was negative. My doctor also tested my thyroid and vitamin levels, I was told all that was normal too. I am really bummed. :( I honestly thought I'd finally figured out what was wrong with me. I do have a question - I am seriously considering doing the Enterolab testing just to see if it is a food allergy of some kind. Would this tell me if I am gluten sensitive? And if it is just gluten-sensitivity and not Celiacs would that be why my vitamin levels are fine? I guess it's back to square one for me. :( I know it's not all in my head, and one day I'm gonna figure this thing out.


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



Celiac.com Sponsor (A8-M):



reardenstone Newbie

So I just called to get the results of my bloodwork and was told my celiac test was negative. My doctor also tested my thyroid and vitamin levels, I was told all that was normal too. I am really bummed. :( I honestly thought I'd finally figured out what was wrong with me. I do have a question - I am seriously considering doing the Enterolab testing just to see if it is a food allergy of some kind. Would this tell me if I am gluten sensitive? And if it is just gluten-sensitivity and not Celiacs would that be why my vitamin levels are fine? I guess it's back to square one for me. :( I know it's not all in my head, and one day I'm gonna figure this thing out.

Were you eating gluten free before the test? I thought I read somewhere that if you get tested, make sure you eat some gluten first.

eatmeat4good Enthusiast

You probably DID figure it out..it's just that the tests have not caught up with all of us yet. They are not very reliable. You certainly can still have Celiac and have tested negative. There are many here with the same situation. They just decide to go gluten free. If you give it a good strict try for several months you will know. The tests are inconsistent, but gluten elimination followed by challenge is 100% effective. Don't be bummed. You just have to try the diet if the tests don't tell you anything. You could also have Gluten Intolerance and it is every bit as miserable as Celiac and there are no tests for it.

Bubba's Mom Enthusiast

My tests came back in the normal range. An endoscope was ordered the same time as the blood draw. I was lucky that I had the scope because it showed I had severe villi damage. If we had stopped after getting the blood tests I wouldn't be DXed.

In some cases an endoscope can be done and not find any damage. It can lie outside of the range of the scope because the small intestine is long.

Soo..testing can be tricky. You could also have gluten intollerance, which tests can't seem to pick up. My best advice would be to eliminate all traces of gluten from your diet and see how you feel. Then, try eating a bit and see if you get a bad reaction. If you do..you have your answer.

Best wishes to you. I hope you're able to figure this out. :(

Skylark Collaborator

So I just called to get the results of my bloodwork and was told my celiac test was negative. My doctor also tested my thyroid and vitamin levels, I was told all that was normal too. I am really bummed. :( I honestly thought I'd finally figured out what was wrong with me. I do have a question - I am seriously considering doing the Enterolab testing just to see if it is a food allergy of some kind. Would this tell me if I am gluten sensitive? And if it is just gluten-sensitivity and not Celiacs would that be why my vitamin levels are fine? I guess it's back to square one for me. :( I know it's not all in my head, and one day I'm gonna figure this thing out.

Yes, it could be gluten intolerance. There is no reliable test for gluten intolerance other than trying the diet. Don't waste money on Enterolab. It's better spent on a new cutting board, toaster, and some gluten-free goodies to try out the diet. At first, go gluten-free and dairy-free because many, many gluten intolerant people also have trouble with dairy. Also keep an eye on soy. Try it for a couple months and see how you feel.

sreese68 Enthusiast

I wouldn't bother with the expense of Enterolab. Go gluten free for two months, then try it and see how your body reacts. (Make sure you eliminate all possibilities of cross contamination in your home and avoid eating out, so you're truly gluten free.) If you suspect other foods, this is a good time to eliminate them also. Oh, before you go gluten-free, you may want to eat that favorite cake/bread/meal one last time just in case gluten is your problem. I wish I had done that.

Oh, my bloodwork was negative, too. Definite reaction to gluten challenge. My doctor diagnosed me with celiac based on symptoms and reaction to gluten.

Archived

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

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,014
    • Most Online (within 30 mins)
      7,748

    ben jones
    Newest Member
    ben jones
    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
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.