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

Sensitivity level means...??


pschwab

Recommended Posts

pschwab Enthusiast

My son was diagnosed with celiac a little over a year ago. Our whole house is gluten free, and we rarely go out to eat. He is in preschool and they are very careful with him. As best I can tell he has not been glutened since he went gluten free. My question is about sensitivity levels. I read this forum often and sometimes see comments like, "I'm very sensitive so what affects me might not trigger others". If he's not showing outward signs of being glutened, I'm wondering if he's doing an excellent job staying away from cross contamination or if he is being cross contaminated and we don't know. Also if he's not showing signs of being glutened, could he still be doing unknown damage to his intestines? We are super careful with him but he's three and puts toys in his mouth that I fear neighborhood kids might have touched with "gluten hands." We require anyone entering the house to wash immediately but with three siblings there are lots of kids in and out daily. When he was diagnosed his ttg levels were 300, 6 months later they were 71, a year later they were 26. He will be tested again next February. I'm just anxious since he's in such critical growing years. Any insight would be great. Thanks!


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



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

Sounds like he's doing great! Why not have the doctor test the levels now so you can see how he's doing?

 

  • 3 weeks later...
CeliacMommaX2 Enthusiast

We were stressed about this as well with our daughter.  It ended up taking 2+ years to get her to "negative" TTG levels (which then came up again at 2.5 years).  We also live in a gluten-free household and never go out to eat.  Because she started growing again, the doctors are not concerned. But as a mother, I'm always worried about it!  Just do your best and I'm sure he will continue to heal.  I've been told the younger a child is diagnosed, the more fully they are able to heal.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,927
    • Most Online (within 30 mins)
      7,748

    Heathercb
    Newest Member
    Heathercb
    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

    • Shining My Light
      @knitty kitty I had an injury from assuming I could do work outs at the gym like I did in my 20s 😏. it didn’t work in my favor. My orthopedic doctor told me to go on 50,000IU /per week for 4-6 weeks for a boost and then do a maintenance. I took 2 and got nervous to take any more, it seemed so high to me. About 7  months later I had a blood test revealing that my Vit D levels are lower than normal. I started taking vit D supplements-4000IU./a day now. (the natural garden of life ones) I had a friend whose levels were low and she was having a mental breakdown.  My B12 levels were right in the middle of the range.     
    • knitty kitty
      @Ginger38, Have you been checked for nutritional deficiencies, besides iron?   Celiac disease causes inflammation which results in nutritional deficiencies.   Iron needs Thiamine and the other B vitamins to make new red blood cells.   Iodine and thiamine deficiencies affect the thyroid.  The thyroid is one organ that uses lots of thiamine.   Vitamin D deficiency leads to hormonal problems, including menstrual problems.  Vitamin D needs Thiamine to activate it.   Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine.  Consumption of any  foods high in carbohydrates can cause a drop in thiamine.  This is called high calorie malnutrition. Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies.  There's eight B vitamins that all work together in concert.  They are water soluble.  They can be hard to absorb by inflamed intestines.  Vitamin A can improve acne. I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C.  Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares. Replenishing your vitamin and mineral stores will help heal and feel better faster.  Talk to your nutritionist and doctor about supplementing. Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines. @Alibu and I were just discussing diagnosis without obvious villus damage here.   This study followed people who showed no or little villi damage at first....they accrued more damage over time. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/
    • Ginger38
      Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise.  I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 
    • knitty kitty
      @Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation." They used 100 mg of thiamine three times a day.  They don't say which kind of thiamine was used.  Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO.  Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.   The old "gold standard" diagnosis is changing.  It must be confusing for doctors as well.  I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves. Keep us posted on your progress!   P.S. here's another link.... https://pubmed.ncbi.nlm.nih.gov/39642136/
    • Alibu
      @knitty kitty I see, thank you!!  Yes, basically the biopsy just said "normal villous architecture."  It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac.  It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy, so how does this system make any sense?? I have had an A1c and it's normal.  I do know that I have insulin resistance, however, so there's that. Wow, thank you for all this information!!!  I have a lot of reading to do!
×
×
  • Create New...