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

Sorting Glutening From Lingering Detox?


GypsyGirl

Recommended Posts

GypsyGirl Rookie

Okay, so I've now been gluten-free for about 6 or 7 weeks (sorry, don't have my calendar in front of me :)).

The first three weeks, I went through lots of detox symptoms, but also felt amazingly BETTER underneath and was very hopeful. Lots of symptoms I have suffered my whole life went away (and even things I didn't realize were "symptoms" but thought were just unavoidable aspects of life!) Then at the 3 week mark I got full out glutened. Not sure how, but I think it was either CC on my napkin or my rice, OR getting hit in the face with a puff off my dog's gluten food when closing the container (we're now transitioning him to a very low-gluten formula). Anyhow, that attack one started with stomach gurgling and itching legs, then progressed to evil cramps and D and then many days of being almost too sore in my intestines to walk.

That FINALLY settled down for a few days, then I had a week of what I first thought was a cold, but wasn't. Sore achy muscles, really stiff, stomach slightly bloated, some itching. That lasted a few days, then finally seemed to settle down and I had a few what I would describe as "gluten-free" days. Now as of last night, stomach is messed up again and my legs are itching (the itching went away for the first time in decades on my first three weeks off of gluten, I have scars on my legs from the previously unexplainable itching/blisters).

So, my question here is how much is it possible the symptom flare-ups are still part of the detox process and how much of it means I'm getting CC'd despite my best efforts??

I am still in a mixed household, but we've divided counters, cooking utensils, pots, cabinets, food storage containers, etc. I wash my hands a zillion times a day and wear disposable gloves (and sometimes a dust mask) whenever prepared anything gluten. I don't bake gluten foods, so no flying flour, just breads and snacks for my husband and son. We've lowered their consumption a lot (using Udi bread for Kidlet's sandwiches, and Corn Chex for his cereal, etc.), but there is still gluten in the house. I don't kiss either of my boys until they've washed up and brushed their teeth.

I've checked all my lip balm and lotion, and I use a very pure natural soap and wash my hair with baking soda or salt and condition with vinegar. My supplements are gluten free and I don't take any medication save Tylenol (for migraines) and I checked that this form of it is gluten-free.

I haven't tried eating out yet, though I did have lunch AT Fuddrucker's one day with the family, but brought my own food and only drank water. I seemed to do fine with that, it was during my "healthier" days and I was fine for a couple of days afterward.

Is it possible I'm really still getting enough gluten to be flaring up symptoms so often??

We're set to take our first trip to DisneyWorld at the end of November, and although I've heard really good things about DW's restaurants being very accomodating and careful, I'm rather terrified that I seem to be turning out to be hypersensitive and this could go very badly.:(

Help?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The symptoms you are describing don't sound like detox they sound like CC. Perhaps from the dog food, if you pet him or he licks you there is the possibility that you are getting CC'd that way. You feed him gluten he licks himself and transfers the gluten to his fur and then you pet him.

Hopefully your diet is pretty much whole foods with little processed. Do be aware that some stuff may be gluten free by ingredients but have a risk of heavy CC from the plants where they are made. Not all companies disclose shared lines. Frito Lay is one example.

It sounds like you have done a good job of dividing up the house. Have you gotten your own condiments, butter, nut butters etc? Double dipping by others can be a CC source.

SGWhiskers Collaborator

I agree with Raven. It sounds like CC to me. You are probably more sensitive than you could imagine. You will be OK at Disney as long as you keep your senses about you. I've eaten there with food allergies and am planning on going back soon with the celiac diagnosis and they are excellent at talking with you and doing everything right. Just speak up. I don't trust the quick serve places as much, but with research, I had good allergy experiences last time at the selected quick serve locations.

Double check the soaps and makeup. Even Though they are natural, they could contain gluten. I find that the more natural the product, the more likely it is to have gluten. Tocepherol acetate/Vitamin E is a possible source of gluten, however can be made from soy and be safe.

Are you still using the old cutting boards? How about the can openers? Are hubby and the boys wiping crumby hands on the kitchen towels you use to dry your pots? Is the dishwasher working well enough? Is hubby allowed to cook with gluten flours? Those have to go for sure. did you replace your can opener? Bottle opener? plastic and wooden spoons. Ugh. There is so much.

I'm insanely careful and apparently insanely sensitive. My hidden sources of gluten: hand soap, wet wipes, a plume of bird food dust, split peas that must have been processed on a shared line, Tostido's that must have come off the line shortly after a gluten item (every other time they have been fine), a hay/stray ride, A rye cracker crumb flung into my eyeball, kissing my nieces 2x, not confirming the gluten status of a product that looked safe 2x, my old blush, Hubby's spagetti preparations next to my spagetti preparations on the stove at the same time, Restaraunts 50% of attempts to eat out, biting my nails even when I thought they were clean, the grocery store on Saturday and Sunday (it is the bakery), several pizzas opened at once while I was in the room. My friend thinks it is because the pizzas are coated with flour on the bottom and she thinks it gets airborne when everyone takes a slice. I don't know on that.

Keep comparing yourself to those good days and you will find the culprit. In the beginning, I had a running list of suspects that I narrowed down over time. It gets easier and you will feel better for longer and longer stretches. Be proud of the weeks you feel good and finding this disease.

GypsyGirl Rookie

Raven and SGWhiskers, thank you both for the support and advice. I think you're right, it must be CC. But I'm still having to really struggle to figure out HOW. I do have separate hand towelsk, condiments, etc.. My husband doesn't bake with flour and we clean any "glutened" area well and are careful about dishes, dishwasher, etc.

SGWhiskers - wow, that's a horrible list of your past glutenings. Sound like your ultra sensitive. I may end up with a similar list by the end of the year... <_<

Still, no way but forward, right? :)

I'm trying very hard to assure all soaps, face soaps, hand soaps, etc., are gluten free, but it's sometimes difficult to tell from the labelling. Is there a good list of gluten free soaps and cosmetics somewhere?

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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    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. - 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.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.