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

Already Seeing Improvements


Roda

Recommended Posts

Roda Rising Star

My oldest son who is 10.5 years old has had repeated blood work for celiac that is negative. He had a scope/biopsy last month that was negative also. Based on his past history and current issues of reccurent gas/bloating, abdominal pain, slow/stalled growth, and irregularity/constipation, we have decided to give gluten free a try for a good three months.

First week I noticed him becoming more moody. However he has IgE allergies and does allergy shots for these. When his allergy load is high he is moody as well. So it's hard to tell if that is related or not. He also had some issues with insomnia. Insomnia has resolved and the moodiness is better but still there some due to allergies. The biggest thing I have noticed is that he is having more regular bowel movements as he has stated that he is going a lot more. He also hasn't complained of any gas/bloating recently either. It wasn't abnormal for him to go up to four days before going to the bathroom. I haven't changed anything except removing gluten. He has a follow up appointment with the GI on Sept. 15th. I know he won't get a diagnosis of celiac but I'm leaning on the possibility that he is non celiac gluten intolerent. Now lets hope he takes off growing like my 6 year old has.


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



Celiac.com Sponsor (A8-M):



carecare Enthusiast

Best of luck! Yes, I hope he takes off growing too. My 11 yr old almost 12 :) had a "weak" positive as the pediatrician put it...and wants us to see the ped. gastro. Anyway, I decided to remove gluten immediately and he too has seen improvement...3 wks into it and he's muscle pain free. I did notice changes in his bowels too...as I think he was going more. He told me at first he was "having issues" in the bathroom. I am thinking that his body is trying to regulate and figure out these changes placed upon it. I think he's doing great though...I even notice his face looks so much healthier. No more dark circles under the eyes!!

I know everyone worries about that "diagnosis" for school. That if you don't get the diagnosis then there could be issues with school. I wonder though ...why wouldn't a dr label a child as gluten intolerant if celiac isn't 100% confirmed. If the family knows gluten was an issue....I'm thinking then I would hope a doctor would send a note to the school saying said child needs to remain on a gluten free diet and accomidations must be taken for him. Why is it that it's always just "we need that diagnosis of celiac."...when why couldn't it also just be "gluten intolerant" in cases that the child hasn't been officially diagnosed with celiac. Hmmm....

Roda Rising Star

I don't know either. Technically speaking my youngest son doesn't have a diagnosis as of yet, going to get though(he had a positive tTg and resounding response to the diet and horrible 3 day gluten challenge), and his allergist wrote a note to the school of the need to be on the diet. The school took it very seriouslly and I have not had any issues. As for my oldest I have nothing and didn't say anything to the school as of yet. He is in 5th grade so I think for now he can manage alright. I'll be discussing things when he goes back to the GI. He and I talked about it yesterday. He is already looking forward to Dec. so he can eat pizza. I asked him what he would do if he had negative effects when he went back to eating gluten even with all his testing negative. He did ponder awhile and said it would be hard but could commit even without a diagnosis. I told him that it might suck now to give up things he enjoys, but worth it in the end to not have belly aches, to maybe grow some and lower the risk of further issues down the road. Knowledge is power. I'm hoping I see some improvement in his allergies, but not too hopeful on that front.

Roda Rising Star

Well, we went to our follow up appointment. He has had a 2lb weight gain since around the end of July when we seen her last! I find that utterly amazing since he barely gains maybe 2-4lbs in a whole year. Actually he hasen't gained any at all this year till this. Usually for him when he does gain weight he also grows taller. I'm so hopeful! Is it possible to see improvements just after three weeks? The doc also thought his color looked better, more pink. We will be following up in Jan. after his gluten challenge to review how things go. She leaning on that he is gluten intolerent. There was one thing I disagreed with her is that she wanted to find out his "tolerence" to see if he was able to have a cheat once and a while.(She didn't advocate this for the diagnosed celiac) I told her that it was all or nothing!! I mentioned this to my husband and he even agreed with me. This is so helping me realize that I made the right decision.

  • 3 months later...
Roda Rising Star

Well, it had been 3.5 months, almost 4, since my oldest son went gluten free. Here are some of the improvements we have seen: weight gain of around 6 lbs., slowly starting to grow in height, increase in shoe size, bowel movements regular going at least every day to every other day and no more stomach aches/bloating/constipation.

So at the beginning of this I told him that we would reintroduce gluten after Christmas. Well, we did, and suprisingly he didn't get a horrible reaction. I do believe he had some symptoms, but were mild. Things he did experience were stomach ache, headache and some moodiness(not sure if gluten or just lack of sleep). He ate a total of 6 doughnut holes, three doughnuts, some bread sticks, 1/2 pizza, and some granola bars. This was over the course of several days.

I asked him what he would like to do today because school is starting back tomorrow. He told me he is probably going to stay gluten free.

I don't believe the 6+ lb weight gain is a coincidence at all. Some could argue that it was just his time to take off, but I don't think so. I just thought I would share an update...

salexander421 Enthusiast

So glad to hear everything is going well with your son!

Archived

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

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.