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

Assistance with raised levels

LouisaM
 Share

Recommended Posts

LouisaM Rookie
LouisaM
Posted

Hello, I’m a 20 year old female who has had celiac disease for 10 years.

my levels have been below 15 for 9 years.  Recently they were raised to 44 and I’m very worried.

i did holiday in late January and had two meals prepared for me by hotel staff.  I had no symptoms of gluten-free cross contamination.  However, could these meals have raised my levels that high?  I have also started on the contraceptive pill for menstrual pain relief.  Can the hormone change affect my levels?  I’m very concerned and worried.  Can someone please help?   Thank you 🙏 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @LouisaM!

Taking Thiamine supplements helps with menstrual pain and irregularities.  Other vitamins like Riboflavin B2, Pyridoxine B6 and Niacin B3, and Vitamin D work with Thiamine and helped improve symptoms.

Even on a gluten free diet, Celiac people can develop nutritional deficiencies.  Discuss nutritional supplementation with your doctor and nutritionist.

References:

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

The Effects of Vitamin B1 on Ameliorating the Premenstrual Syndrome Symptoms

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825494/

The Effect of Micronutrients on Pain Management of Primary Dysmenorrhea: a Systematic Review and Meta‐Analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7146731/

Menstrual cycle symptoms are associated with nutrient intake: Results from network analysis from an online surve

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10350787/

Hope this helps!  

Scott Adams Grand Master
Scott Adams
Posted

It is possible that the meals you ate were cross-contaminated, and since you were on vacation perhaps you also ate at more restaurants than usual, which is also the most common source of gluten cross-contamination.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

  • 1 month later...
LouisaM Rookie
LouisaM
Posted
  • Author

Hi Scott,

thought I’d share my new blood test results to see if you could provide more feedback.

Upon diagnosis over 10 years ago my IgG level was 250!  After going gluten-free, it dropped to 29 within 3 years.  Fast forward to now, it has raised to 44 in my February test and is now 45 in my test from late April.  I’m concerned why it has raised?  Is this level concerning for long term health?

thank you for your help. 
louisa

RMJ Mentor
RMJ
Posted

Have all of your tests been run by the same lab? What are the normal ranges and are they the same for all of the results?

The units used to report celiac antibody results are not standardized.  Even though I’ve had tests ordered through the same health system for twelve years the normal ranges have been  0 to 19, then 0 to 3 and now 0 to 4.99. My results (now that I’m gluten free) are always at the top of each of the normal range, for example 18, 3 and 4.9.

LouisaM Rookie
LouisaM
Posted
  • Author

Hi Scott,

thought I’d share my new blood test results to see if you could provide more feedback.

Upon diagnosis over 10 years ago my IgG level was 250!  After going gluten-free, it dropped to 29 within 3 years.  Fast forward to now, it has raised to 44 in my February test and is now 45 in my test from late April.  I’m concerned why it has raised?  Is this level concerning for long term health?

thank you for your help. 
louisa

LouisaM Rookie
LouisaM
Posted
  • Author

Hi RMJ,

thanks for your response.

yes, the range has been the same across the labs however it’s my personal level that has gone from 29 to 45.  Still not sure why?  Is reactive celiac common or could it be some other inflammation?  I’m just not sure why my level is creeping up after being consistently low for over 7 years.

 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

LouisaM Rookie
LouisaM
Posted
  • Author

Thank you Scott!  You are always so helpful and I value your advice. 
 

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,566
    • Most Online (within 30 mins)
      7,748
    Alisha Moose
    Newest Member
    Alisha Moose
    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
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • 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 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/
×
×
  • 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.