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, But Still Suspect Celiac

Myrna

Recommended Posts

Myrna Newbie
Myrna
Posted

Hi I'm new here and still learning about Celiac. I've been lurking and this forum seems great with info.

I had an appendix operation on New Years and I haven't been feeling well since though mostly since February. It all TMI kind of stuff. At first I thought it was stress or lactose intolerance, but it's continued on. I'm 32 and never had been sick before all this. I used to pride myself on how resilient I am to illness.

Here are my symptoms (sorry if it's a bit gross):

more frequent BMs

sometimes an unsettled stomach

floating, soft, sticky stool (like it sticks to the bowl and is messy)

color change in the stool, it's some times paler sometimes not, but not like it used to be in color.

diarrhea sometimes

gassy

more fatigued

In the past month things seem to be progressively worse after my marathon was over:

I'm not feeling well in the morning, though better in the afternoon, making me not want to eat. (believe me I'm an eater normally) I've lost a few pounds.

My stomach seems more unsettled especially w/my morning runs

I've noticed my runs have become slower and difficult to do. Some of this might be heat related, but I've run harder/farther in worse weather. Now just 4 miles is difficult to reach.

I'm always exhausted. Really exhausted!

I did go to the doctor after I fainted a few weeks ago. I learned that I have reactive hypoglycemia. Now, I've been very good about eating every 2 hours like she said, even if I don't feel like it bec of my stomach issues. She suspected celiac and had me tested along with my gluclose test.

I tested negative to celiac.

After the reading I had done on celiac, I wasn't convinced. So I've done a mini experiment with diet. I ate a lot of gluten filled foods on purpose. I was very sick that day and the morning after. Then I went gluten free for 5 days with 1 slip-up that I know of. I've noticed a difference, though I don't feel fully all better. My BMs were less frequent, no diarrhea, and much less gas and bloating. Also my running is a little better with less or no stomach upset. I'm going to add gluten back tomorrow and see what happens.

I am seeing my regular doctor this week and a GI doctor in a month or so. In prep for my upcoming doctor visits, I want to be prepared and have a few questions:

I've read here that blood tests can be inaccurate. I was wondering how often does that happen?

Is there something more I should ask my doctor for, ie tests?

I know it's a mini experiment, but I wonder if it's enough to bring to my doctor attention?

Does anyone know if there is there something besides celiac that would have similar symptoms?

Is there any connection between celiac and reactive hypoglycemia? I'm thinking it's because I haven't wanted to eat, that is why my blood sugar has been off and I fainted. But I'm curious if there is any other connection.

Thanks in advance and sorry for this post for being long!

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

Welcome!

Did you get your iron/Ferritin checked? Runners often become anemic.

Did they test total IgA to see if you were deficient (and if you are) therefore making the Celiac panel useless???

You would need IgG testing then.

You could still have Celiac with a negative blood test. There are many who have neg. blood/pos. biopsy and visa versa. But you will need to STAY ON GLUTEN for the biopsy to be accurate (and even then it can be patchy damage and they might not catch it).

You could also just be gluten intolerant.

Either way, the cure is the same: A strict Gluten Free diet

You can push for a biopsy and see if your villa are damaged.

You can pay Enterolab for genetic testing and stool testing.

You can just do the diet and see.

It depends on whether you a. want to get well no matter what or b. need an official diagnosis to make you comply to the diet.

happygirl Collaborator
happygirl
Posted

What blood tests did your doctor run for Celiac?

Myrna Newbie
Myrna
Posted
  • Author

Thanks ShayFL for the reply!

My doctor only said she was testing for Celiac, but gave no specifics, and I had no idea at the time of what the tests were until I came here. So I doubt she checked total IgA to see if I was deficient. I never went off gluten before the test, but was eating less in general. Also I'm back on gluten after my mini 5day test, just in case I want to be tested again. So far I'm little sick.

I never got my iron checked. I will ask.

I will ask about the biopsy. I wasn't sure if they never did it after a negative blood test.

Maybe I'm gluten intolerant. Does it look like it has the same symptoms without the damage? I'll have to investigate more on that.

I've heard of Enterolab through here, and I'm not sure what they are exatly. Are they a celiac specialist lab my doctor can outsource tests or do I have to approach them myself?

I really would like a diagnoses for a few reasons: 1. Some family members just might not understand without a concrete test result. 2. I like to be reassured what it is for my own sake. 3. I would like to start a family in the future and if I do have celiac, I would like a diagnoses for my future children's sake.

ShayFL Enthusiast
ShayFL
Posted

You can contact Enerolab directly. I did the genetic tests about 4 months ago.

I tell my family that I have the genes for gluten sensitivity and that my doctor recommended gluten-free diet. I did Enterolab on my own. I just have a supportive doctor. But my family dont personally speak with my physician. I could tell them whatever I want to make them understand. I am not going to photocopy my records to show my family just so they believe me.

Ask your doctor for a copy of ALL of your lab records. It is your legal right. Then come back in here and let us know what they tested.

happygirl Collaborator
happygirl
Posted

You can have genetic testing for Celiac, ordered by your doctor, through an in-network lab for your insurance, so that you don't have to pay out of pocket.

ShayFL Enthusiast
ShayFL
Posted

If your doctor will do that...then great! Most wont with a neg blood test. But in NEVER hurts to ask.

I have become my own doctor. My physician is just an adjunct to my own care of myself.

And Enterolab tests more than genetics. They test fecal for antibodies to gluten/egg/soy/dairy.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted
Open Original Shared Link info about testing that you can take with you to your doctor for genetic testing.
Myrna Newbie
Myrna
Posted
  • Author

Thanks so much for the info! I don't know what my doctor will say to all this. Really, I barely know my doctor, since I never had been sick before all this, the last time I saw her was 4 years ago just to meet her for the first time and get a basic physical. My appointment is Friday, now I will relate all and ask to see the test results!

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

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

      Positive biopsy

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

      Fruits & Veggies

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

      Positive biopsy

      @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...
    5. Scott Adams
      0

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

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,030
    • Most Online (within 30 mins)
      7,748
    Virgini Brewsaugh
    Newest Member
    Virgini Brewsaugh
    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
      Positive biopsy

      By knitty kitty · Posted

      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
      Fruits & Veggies

      By knitty kitty · Posted

      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
      Positive biopsy

      By knitty kitty · Posted

      @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
      Positive biopsy

      By trents · Posted

      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
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.