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

Need Some Encouragement!

Tarantula44

Recommended Posts

Tarantula44 Apprentice
Tarantula44
Posted

Hi, I'm so thankful for this site and the amount I've learned from you all since joining! I have had some negative blood tests but positive for total SIgA and thyroid antibodies. No biopsy, but celiac runs in family and my dr thinks I may have it. I agreed to do the strict gluten and dairy free diet. I started one month ago today and have noticed some improvements so far... Way better digestion, sinus inflammation has gone down, chronic swollen glands have gone down. But I am still having tons of symptoms, especially migraines, bladder pain, fatigue. Over the past two weeks the headaches have been everyday, and the bladder pain has been really bad at times, also my fatigue and head fog are off the charts horrible. I'm wondering if even after a month on the diet if I can still be having detox symptoms. That's what it feels like it is, I just thought this part would be over sooner. My dr also has me on homeopathic detox drops for my liver and kidneys as I have a mild fatty liver (not from alcohol/drugs). I also have been doing green smoothies with fresh greens daily too, I suppose all this might be too much for my system to handle. Can anyone give any insight as to how long detox can last from going gluten/dairy free and what are some things you can do to relieve the awfulness of it? Also how long it takes to start feeling better from the fatigue and headaches etc? Thank you! T

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

Celiac.com Sponsor (A8-M):


kathrynk Rookie
kathrynk
Posted

Hi, I'm so thankful for this site and the amount I've learned from you all since joining! I have had some negative blood tests but positive for total SIgA and thyroid antibodies. No biopsy, but celiac runs in family and my dr thinks I may have it. I agreed to do the strict gluten and dairy free diet. I started one month ago today and have noticed some improvements so far... Way better digestion, sinus inflammation has gone down, chronic swollen glands have gone down. But I am still having tons of symptoms, especially migraines, bladder pain, fatigue. Over the past two weeks the headaches have been everyday, and the bladder pain has been really bad at times, also my fatigue and head fog are off the charts horrible. I'm wondering if even after a month on the diet if I can still be having detox symptoms. That's what it feels like it is, I just thought this part would be over sooner. My dr also has me on homeopathic detox drops for my liver and kidneys as I have a mild fatty liver (not from alcohol/drugs). I also have been doing green smoothies with fresh greens daily too, I suppose all this might be too much for my system to handle. Can anyone give any insight as to how long detox can last from going gluten/dairy free and what are some things you can do to relieve the awfulness of it? Also how long it takes to start feeling better from the fatigue and headaches etc? Thank you! T

Hi there T, I am in the same boat (off gluten for 2 weeks now) Just finally heard today my bloodwork was negative. Because I have been off gluten, I am not going to pursue further testing. The severe gas pains, bloating, and cramping has stopped. I have lost a few pounds, and the swelling in my face has gone down. IIf I do not have celiacs, I have an obvious intolerance plus several other autoimmune diseases. However, I still get some headaches as well, and I am still fatigued. What detox drops do you take? My ND has me on UNDA numbers biotherapeutic drainage). I haven't noticed that they are helping much-but who knows when it is in conjunction with dietary changes. What are you putting in the smoothie? Have you considered cutting out dairy as well? I cut out both gluten and dairy. I had a little dairy yesterday and ended up with D all morning. I realized that both are affecting me!

Tarantula44 Apprentice
Tarantula44
Posted
  • Author

Hi there T, I am in the same boat (off gluten for 2 weeks now) Just finally heard today my bloodwork was negative. Because I have been off gluten, I am not going to pursue further testing. The severe gas pains, bloating, and cramping has stopped. I have lost a few pounds, and the swelling in my face has gone down. IIf I do not have celiacs, I have an obvious intolerance plus several other autoimmune diseases. However, I still get some headaches as well, and I am still fatigued. What detox drops do you take? My ND has me on UNDA numbers biotherapeutic drainage). I haven't noticed that they are helping much-but who knows when it is in conjunction with dietary changes. What are you putting in the smoothie? Have you considered cutting out dairy as well? I cut out both gluten and dairy. I had a little dairy yesterday and ended up with D all morning. I realized that both are affecting me!

Hi Kathryn,

From reading this forum and other articles it seems lots of folks have negative blood tests but can still be positive. The testing sounds kinda nutz and not so reliable, I think many have realized that they feel better off gluten and so they should stick to that. I am off dairy as well, I eliminated that along with the gluten. I am on the UNDA drops as well! 2, 20, 243. I started them 3 weeks ago, and am just starting to notice these detox symptoms. Today was one of the worst days I think I've ever had! The fatigue and muscle and bone pain are pretty horrific. I guess it's nice to know something is working if this is detox. I've been doing green smoothies every morning, they consist of leafy greens (spinach, kale or chard) and fruit and water: Open Original Shared Link I think I may be over doing it. I am going to take a break from the smoothies for now, until these symptoms reside a bit. Thanks for your reply, so glad you're feeling better and good luck with the rest. t.

kathrynk Rookie
kathrynk
Posted

Hi Kathryn,

From reading this forum and other articles it seems lots of folks have negative blood tests but can still be positive. The testing sounds kinda nutz and not so reliable, I think many have realized that they feel better off gluten and so they should stick to that. I am off dairy as well, I eliminated that along with the gluten. I am on the UNDA drops as well! 2, 20, 243. I started them 3 weeks ago, and am just starting to notice these detox symptoms. Today was one of the worst days I think I've ever had! The fatigue and muscle and bone pain are pretty horrific. I guess it's nice to know something is working if this is detox. I've been doing green smoothies every morning, they consist of leafy greens (spinach, kale or chard) and fruit and water: Open Original Shared Link I think I may be over doing it. I am going to take a break from the smoothies for now, until these symptoms reside a bit. Thanks for your reply, so glad you're feeling better and good luck with the rest. t.

I am on UNDA numbers 1, 20, and 243... You mentioned thyroid antibodies...did you get a dx of hashimotos? The reason I'm asking is because cruciferous (SP?) veggies are not good for thyroid function (kale, broccoli, cauliflower) Also...I have read that the risk of getting a false negative is much higher for people with hashimotos...I will see if I can dig up where I read that. Probably on here...these people have been an amazing resource and wealth of knowledge!

Tarantula44 Apprentice
Tarantula44
Posted
  • Author

Oh wow! That is really interested about the false neg with Hashi's. My doc didn't diagnose me with Hashis I guess because my hormone levels were fine. I do have many symptoms though, intolerance to cold, hair is falling out, but she said lots of those symptoms can be interchangeable with adrenal issues which I do have primarily, she tested my cortisol levels and they are a little under where they should be. She also said many people have thyroid antibodies and she sort of brushed it off. That is another question of mine tho, should I be concerned about it? I've heard so many times, on this forum and in clinical studies that thyroid issues resolve on gluten-free diet. So I guess I'm just going to see if it all gets better before getting cconcerened about anything. If you find that study please post it. Seems like we're in a similar situation. I also have reynauds, I saw that in your sig. K

Celtic Queen Explorer
Celtic Queen
Posted

Could you have an intolerance to any other kinds of foods. Lots of people on here have issues with corn, soy, nightshade vegetables, msg, etc. You might look into an elimination diet to see if you can find an underlying issue.

I was reading a book last night that said healing times can vary greatly from person to person. A lot of it can depend on your age and how much damage has been done to your intestine.

Also, could you be getting cross contaminated somehow? That gluten is very sneaky :P

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.