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

Any Thoughts?

Becky6

Recommended Posts

Becky6 Enthusiast
Becky6
Posted

My daughter has been dairy free since July and gluten-free for almost 2 months now. Now clearly she is doing way better gluten-free! Her runny nose and sinus infection are gone and it had been there for over a year and no meds helped! Her bm's have improved but are not totally better. That is where my question comes in: She used to have 10 watery running down her legs bms a day before going dairy free. Then they went to 2-3 a day blowouts but not watery. Now off of gluten she will go 1-2 days w/o a bm and we had a few solid ones here and there. But they are still loose but def have more texture to them and are more thick than they were. But they will still go up her back and up to her belly button some days. I am wondering if she is still healing or if she could be getting gluten some where (I don't think she is but you never know!) or could she need to be casein free too? I know if she gets any ounce of lactose she is a disaster! Thanks!!

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

Celiac.com Sponsor (A8-M):


2Boys4Me Enthusiast
2Boys4Me
Posted

Hmm. I'm not really sure, since my son was almost six when he was diagnosed, and pretty much asymptomatic.

I do know that there are a couple of good Gluten-free Casein-free websites out there that may have more info, but I'm not sure if they have forums or not. Just google Gluten-free Casein-free diet and see what happens. One might be called Gluten-free Casein-free Utah, and I can't remember the other one. I am sure that a Mom with a child who was diagnosed younger than mine will come along soon to help you.

mommida Enthusiast
mommida
Posted

I think your daughter could definately still be healing but, check all of your hygeine products again. Do you have pets? Make sure pet food is out of reach. Playdough?

Ursa Major Collaborator
Ursa Major
Posted

I would take casein out of her diet and see what happens. That could definitely be the problem.

Guest nini
Guest nini
Posted

she may still be getting some gluten, ck vitamins too, food preparation surfaces, or it may be that she needs to be casein free too, or again, could be that she's still just healing... honestly I wish I had a better answer for you. trial and error may be your best friend right now...

I'm thinking... thinking... nope, got nothin...

sorry, brain not working tonight

taweavmo3 Enthusiast
taweavmo3
Posted

First I would double check everything she eats, bathes with and plays with. I've had to do this several times just to help me eliminate the source of problems. I've even re-called companies to double check, re-check my lists, etc.

If everything checks out okay, then my guess would be that she is still healing. Emmie's stools took a while before they were what I would call normal. Some days, they would seem normal, then she would have one that was similar to pre-gluten-free days. I always worried it was gluten, but I think it just took quite some time for her to heal. Things are still improving for us in the poo dept. and it's been nearly nine months. Glad to hear your daughter is headed in the right direction....hope she just keeps getting better and better!

Archived

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

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


  • Member Statistics

    • Total Members
      129,936
    • Most Online (within 30 mins)
      7,748
    JHutchins
    Newest Member
    JHutchins
    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

    • trents
      Virus, celiac disease or both?

      By trents · Posted

      Early guidelines from years ago concerning D3 supplementation was unduly conservative. There was fear of toxicity in over-supplementing because D3 is a fat soluble vitamin and not a water soluble vitamin. More recent studies have shown we can supplement safely at considerably higher levels for extended periods. But yes, 50,000 IU would not be safe over an extended period of time. That much is a kick start dose.
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @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
      Confused About Results

      By knitty kitty · Posted

      @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
      Confused About Results

      By Ginger38 · Posted

      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
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By knitty kitty · Posted

      @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/
×
×
  • Create New...