Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Introduction & Start of Journey

Guest
 Share

Recommended Posts

Guest
Guest
Posted

Hi there. I am a 59 yo colon cancer survivor - had chemo in 2020 and was just released from my oncologist's care a few weeks ago. The day of my release my annual blood tests showed that I was iron deficient anemic. (I get blood sugar and cholesterol checked by pcp every 6 months, but blood counts/platelets/hemoglobin is done annually by oncologist.) My pcp sent in a request for a stat colonoscopy to look for a leak in my GI system. Colonoscopy and endoscopy were both fine. Next week I'm doing a capsule endoscope. Gastro said he sent tissue for biopsy - I had just presumed that there were polyps again until I read the report he sent my pcp that said they were looking for celiacs. Looking at the list of symptoms, I have a lot of them. The neuropathy in my fingers and toes which I experienced during chemo had disappeared, but now its back. The arthritis in my fingers is flaring worse than ever (and its rare for it to flare when its 80 some degrees outside). My friend who had celiacs asked if I had a particular blood test yet - and I'm guessing they'll wait until the capsule results to do that. In the meantime I'm reading and getting ready. From what I've read so far, even if I don't have celiacs I think a reduction in gluten intake would do me some good.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum community @Arletta!

The blood tests for celiac disease check for certain antibodies produced by the inflammation that gluten ingestion causes in the lining of the small bowel of those who have the disease. Normally, the blood antibody testing comes before the endoscopy/biopsy but in your case the order was understandably reversed since they were doing the endoscopy for other reasons as well. What you need to know is that you should not cut back on gluten consumption before the blood draw to check for celiac antibodies. Doing so will likely reduce inflammation and thus reduce antibody levels and could result in false negatives. If anything, you should increase your consumption of wheat products in the meantime.

There are several antibody tests that can be performed when checking for celiac disease. The most popular one ordered by physicians is the tTG-IGA. Try talking your physician into ordering a more complete celiac panel, however, which would include total IGA, tTG-IGA, DGP-IGA and DGP-IGG. It's very important that the physician order the "total IGA" test as if total IGA is low it can result in falsely negative results in the tTG-IGA. Anemia can also give false negatives for the tTG-IGA. The tTG-IGA is the considered the chief antibody test for celiac disease. 

Here is a primer outlining the blood tests that can be run for celiac disease: 

 

Guest
Guest
Posted

Thanks @trents. My friend mentioned the tTG-IGA test. As far as cutting back - my opinion during this is that I'm going to enjoy the gluten while I still can! Thanks for the feedback.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. knitty kitty
      - knitty kitty replied to AnneBSunflower's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      mystery gluten?

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too. I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's. So antibodies aren't necessarily due to gluten ingestion. https://pubmed.ncbi.nlm.nih.gov/31149170/ Take a B Complex supplement and Benfotiamine...
    2. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      @Rejoicephd, Would you consider adding a B Complex to your supplements? I was taking a multivitamin and still became deficient. There's a question as to how well multivitamins dissolve in the digestive system. I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery...
    3. knitty kitty
      - knitty kitty replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      almost a year in recovery - so many questions about to give up

      @kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies...
    4. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    5. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,652
    • Most Online (within 30 mins)
      7,748
    Bama
    Newest Member
    Bama
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      mystery gluten?

      By knitty kitty · Posted

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too.  I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's.  So antibodies aren't necessarily due to gluten ingestion.   https://pubmed.ncbi.nlm.nih.gov/31149170/   Take a B Complex supplement and Benfotiamine, a form of thiamine shown to promote intestinal healing, and Vitamin C.  This study found a higher rate of thiamine and Vitamin C deficiencies in people with Hashimoto's.   https://pubmed.ncbi.nlm.nih.gov/37278003/   Try cutting back on the amount of iodine in your diet.  Iodine, even in small amounts, can stimulate the thyroid which in turn stimulates the immune system which increases antibody production.   Dairy and eggs are high in iodine.  Switch from iodized salt to Pink Himalayan salt.   https://pubmed.ncbi.nlm.nih.gov/9703374/   Supplement with Selenium, a mineral that helps the thyroid function and calms the immune response in the thyroid.   https://pubmed.ncbi.nlm.nih.gov/37033262/ Hope this helps!  Keep us posted on your progress!
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
×
×
  • Create New...