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

New Member- Supplements


Robyn G

Recommended Posts

Robyn G Newbie

Hello. I am new to this forum and have been on a gluten free diet for 28 years. Thank you to whoever started this. It is a great idea. Even after being on the gluten free diet for so long, I still have digestive challenges a lot of the time and seem to be continually working on finding the correct balance for myself. I just today made an appt with a Naturopath of Functional Medicine and I will see if he can assist me. Where I am looking for input is with supplements. I recently discovered that taking L-Glutamine and Copper really helped my digestive process and that info came from Dr Lorna Vanderhagues Heathy Immunity book in the Celiac Disease section. I wonder what other nutrients people are taking because I feel I must be missing something. My biggest challlenge is that if I contract a cold/respiratory virus, I get really really sick. I take so many quality products for my immune system but still, if I am not ultra careful, I can contract a virus and if I do, it's a doozer. Maybe I am missing some element or mineral that would make my immunty better.

Thanks,

Robyn


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

If fatigue is a problem for you, you might want to discuss L-carnitine with your doctor.

A recent study was published showing that it helps with fatigue in adults with Celiac Disease.

Dig Liver Dis. 2007 Oct;39(10):922-8. Epub 2007 Aug 10. Links

L-Carnitine in the treatment of fatigue in adult celiac disease patients: a pilot study.Ciacci C, Peluso G, Iannoni E, Siniscalchi M, Iovino P, Rispo A, Tortora R, Bucci C, Zingone F, Margarucci S, Calvani M.

Gastrointestinal Unit, Department of Clinical and Experimental Medicine, University Federico II, Naples, Italy. ciacci@unina.it

BACKGROUND: Fatigue is common in celiac disease. L-Carnitine blood levels are low in untreated celiac disease. L-Carnitine therapy was shown to improve muscular fatigue in several diseases. AIM: To evaluate the effect of L-carnitine treatment in fatigue in adult celiac patients. METHODS: Randomised double-blind versus placebo parallel study. Thirty celiac disease patients received 2 g daily, 180 days (L-carnitine group) and 30 were assigned to the placebo group (P group). The patients underwent clinical investigation and questionnaires (Scott-Huskisson Visual Analogue Scale for Asthenia, Verbal Scale for Asthenia, Zung Depression Scale, SF-36 Health Status Survey, EuroQoL). OCTN2 levels, the specific carnitine transporter, were detected in intestinal tissue. RESULTS: Fatigue measured by Scott-Huskisson Visual Analogue Scale for Asthenia was significantly reduced in the L-carnitine group compared with the placebo group (p=0.0021). OCTN2 was decreased in celiac patients when compared to normal subjects (-134.67% in jejunum), and increased after diet in both celiac disease treatments. The other scales used did not show any significant difference between the two celiac disease treatment groups. CONCLUSION: L-Carnitine therapy is safe and effective in ameliorating fatigue in celiac disease. Since L-carnitine is involved in muscle energy production its decreased absorption due to OCTN2 reduction might explain muscular symptoms in celiac disease patients. The diet-induced OCTN2 increase, improving carnitine absorption, might explain the L-carnitine treatment efficacy.

TestyTommy Rookie

Hi Robyn,

Are you taking any supplements besides the l-glutamine and copper?

For immunity/cold prevention, I've found that nothing works better than good old vitamin C. I take 2 grams per day, 1 g. with breakfast and 1g. dinner. It's also one of the most inexpensive supplements out there, but it pays to get a premium product: look for one that is buffered and sustained release. It is also good to get one that includes bioflavonoids. I use "C-1000" from NOW Products, and I recommend it.

tarnalberry Community Regular

a good source of calcium, magnesium, and vit D3 is important (with a 2:1 ratio of Ca to Mg), as well as a B vit (like a B-50) and a good multi (with or without iron, depending on whether you tend to have enough, or not enough, and whether or not you're a frequent blood donor). regular exercise, ironically enough, at a moderate intensity, has been show to boost the immune system as well.

GlutenWrangler Contributor

You should be taking Probiotics. I recommend Natren Healthy Trinity. Great stuff.

Robyn G Newbie

Thank you all for your input in supplements. I am taking most of those. I take a lot of really high quality supplements and they all make a difference for sure. I think the biggest factor may be routine. I find that if I can have a dietary and otherwise routine, including exercise, I seem to feel quite well and if it goes out the window then my system seems to get stressed and vulnerable. I know that the bowel and respiratory systems are closely linked and so maybe it is the upset in routine that throws my bowel and then my lungs into a state. I do take pro-biotics from Young Living and have also taken others. I never seem to notice much difference with any them. What would I notice? I take about 1000 mgs of Calcium Ascorbate a day om my morning smoothie. I guess I could take more. I'm not sure where to get L-Carnitine and how would my doctor know. Can they test for the levels of this?

Thanks again!

happygirl Collaborator

Carnitine can be measured through bloodwork. Large lab companies, like Quest Diagnostics, can do it. It is not a prescription drug, so you could get it at a vitamin store, etc.


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



Celiac.com Sponsor (A8-M):



Ken70 Apprentice
Hello. I am new to this forum and have been on a gluten free diet for 28 years. Thank you to whoever started this. It is a great idea. Even after being on the gluten free diet for so long, I still have digestive challenges a lot of the time and seem to be continually working on finding the correct balance for myself. I just today made an appt with a Naturopath of Functional Medicine and I will see if he can assist me. Where I am looking for input is with supplements. I recently discovered that taking L-Glutamine and Copper really helped my digestive process and that info came from Dr Lorna Vanderhagues Heathy Immunity book in the Celiac Disease section. I wonder what other nutrients people are taking because I feel I must be missing something. My biggest challlenge is that if I contract a cold/respiratory virus, I get really really sick. I take so many quality products for my immune system but still, if I am not ultra careful, I can contract a virus and if I do, it's a doozer. Maybe I am missing some element or mineral that would make my immunty better.

Thanks,

Robyn

I'm working with a functional medicine doctor myself. I haven't received the test kits yet but they should arrive today. More than likely that approach will tell you what else you might need. I can't wait to figure out the rest of my story. Keep in mind that each of us are different so taking supplements that work for someone else may or may not work for you. That's why I am consulting with the FM doctor. I'm tired of guessing. Let us know how your tests go. I think it's a fascinating approach

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
      133,327
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • 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.