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 Positive, Biopsy Negative-Now What

rose-thorn98

Recommended Posts

rose-thorn98 Rookie
rose-thorn98
Posted

I had the following test positve:

TISSUE TRANSGLUTAMINASE IGA 1.38 (normal range below .90)

Just got biopsy back, was negative. My main symptom is neuropathy, some stomach issues. Dr. said try gluten-free anyway to see if it helps with my neuropathy. Just feel so confused. I really wanted a firm diagnosis! This was the only test I had positive when they were looking for the cause of my neuropathy. Feeling so defeated right now.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Don't be upset. Gluten neuropathy will not necessarily give a positive intestinal biopsy. Your immune system is attacking your nervous system, not your intestine. Based on the TTG-IgA, your doctor is giving really sensible advice. The firm diagnosis comes from trying the diet very strictly for a few months and seeing if the neuropathy improves. You want to be strict, as many people around here who have neuropathy are really sensitive to small amounts of gluten. Did your doctor also suggest taking some B vitamins or test for deficiencies? A lot of celiacs and gluten-intolerant folks are B12 deficient, which can cause nerve damage.

SGWhiskers Collaborator
SGWhiskers
Posted

As one of the neuro celiacs here, I'll second Skylark's response. I didn't believe how strict I needed to be, but once I got rid of all cross contamination, my neuro symptoms started to improve.

Emilushka Contributor
Emilushka
Posted

That's the same way I was. You can't expect every test to be positive - they're imperfect, and that's why there are so many tests that they run. If only one was enough, they'd run only one.

Welcome to the Celiac Club! You've got a firm diagnosis. Time to go gluten-free.

cassP Contributor
cassP
Posted

dont be discouraged- so many of us did not have a clear and obvious test result.. A lot of celiacs and people with gluten intolerance get neuropathy.. And i THINK its a side effect from a B12 deficiency which many gluten intolerants suffer from. You should get your B12 levels checked and ask for your results.. My sis in law was within range but ONLY by a FEW points- and she had the neuropathy.

I also think u should just go gluten free- clearly from the ttg- your body makes antibodies to gluten. iMHO, its only a matter of time till the gluten starts damaging your SI or any other organ for that matter.

mushroom Proficient
mushroom
Posted

Sometimes we have to live in the grey - there is no black or white. Your decision should be made on what makes you feel better, not on what any test shows.

Skylark Collaborator
Skylark
Posted

dont be discouraged- so many of us did not have a clear and obvious test result.. A lot of celiacs and people with gluten intolerance get neuropathy.. And i THINK its a side effect from a B12 deficiency which many gluten intolerants suffer from. You should get your B12 levels checked and ask for your results.. My sis in law was within range but ONLY by a FEW points- and she had the neuropathy.

I also think u should just go gluten free- clearly from the ttg- your body makes antibodies to gluten. iMHO, its only a matter of time till the gluten starts damaging your SI or any other organ for that matter.

It is not only B12 problems, although I agree that that B12 and other B vitamins can a big issue for celiacs with neurological problems. The celiac autoimmunity can attack the nervous system as well as the gut. (It can attack skin too, causing DH.) That's why the intestinal biopsy may not be positive. Some folks with only neuro symptoms don't have anti-TTG either. Instead researchers have found anti-gliadin and autoantibodies against nervous system proteins.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,564
    • Most Online (within 30 mins)
      7,748
    larrybrinkley
    Newest Member
    larrybrinkley
    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

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
×
×
  • 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.