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

Gluten Challenged And Puzzled!


Gwen B

Recommended Posts

Gwen B Rookie

Can anyone relate?

Am I gluten intolerant or not. I am so puzzled.

Here's my story. It's a bit long but if you want the short version, scroll down to the bottom

I'm not sure when it all started. A couple of years ago I decided to eat healthier. I was doing more exercise and eating better but I seemed to be putting on weight and instead of feeling better after all the excercise I seemed to be tired all the time and sometimes faint and dizzy. I decided to follow the South Beach diet, at least the last stage of it, so, light on bread and carbs generally. I lost ten pounds and felt more energetic but the occasional dizziness still plagued me. Also the occasional stomache aches and loose stools/D became went from being intermittant rare events to more regular occurances - say two or three times one month and then nothing for a couple of months.

I slacked off the exercise the following year as I seemed to be tired so often. Then in the fall I increased my excercise (bikram yoga) to see if getting really fit again would make me feel better again. I got fitter but was often exausted, so I checked in with my doctor and had bloodwork done which revealed that I was low but not deficient on B12. I also had the tissue transglutaminase test and checked for thyroid problem proved negative. I had asked for this since I knew that my mother had chosed to go gluten-free after years of digestive issues and anemia and responded positively. My grandmother has DH and has been gluten-free for 35 years. They both also have low thyroid.

The B12 did give me a huge boost in energy but gradually over the past year the stomache aches and loose bowels became more frequent and in September/October I realised that I had as many bad days as good days per week and was feeling tired all the time again. Sometimes it is as if my arms and legs are heavy and I just can't seem to find the energy to move. I also felt dizzy and faint often and even a little depressed but I thought that was because of the tiredness.

Anyway, after another bad night I decided to try going gluten-free to see if things improved. I had several social comittments coming up and didn't want to be sick over the holiday season. The stomache aches stopped for the first couple of weeks and I felt better, with more energy. Perhaps psychsymatic effect of feeling 'in control'. :D

Then back came the gas and nausea and stomache ache. So through mum's advice and looking up on this forum I went lactose free. This made me better except for a weird gut feeling. I finally tracked that down to cassein in soy cheese/rice cheese. The only times I had a relapse of the stomache ache was when I'd eaten out, once when I did I also had a very bad hive attack and so after a little reluctance (more gas!!) I gave up soy too,and eggs, just to be safe.

I had just two inexplicable episodes of the Return of the Dreaded SA. Must be CC. I thought. I'm still tired a lot of the time. My bloodwork from November saw all normal results although I think my Hb (is that iron levels) was quite low 12.4 when 12 is deemed anemic and 16 high. I take multivits, B12, Thyroid Support med (that was normal too 2.57) enzymes, probioitic tabs and still feel low on energy and but not as down as I was before going gluten-free.

All through this my family have gone along with this amiably enough. They think I'm a bit crazy, so do my friends. 'Surely I can't be that sensitive' and 'shouldn't you see a dr?'. My Dr says my blood is all normal therfore I'm OK and there are no more tests to do. My Hubby doesn't want me to do Enterolab because of the cost.

It was driving me insane, so yesterday I decided to do the gluten challenge. I ate two slices of hot bread and felt sure I would be in agony again last night.

I wasn't. Some hours after I had eaten the bread. My stomach felt gassy and I burped a lot and still am this morning but nothing else! :huh:

Now I don't know what to do. Help please! <_<:blink:

Sorry this is such a saga.

Short Version.

gluten-free since Nov 1st 2007 also CF, Soy and Egg free. Gluten Challenged yesterday (2slices bread) and now just a little gas, bloating and burping! :huh: Any experience?


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



Celiac.com Sponsor (A8-M):



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.

    5. - 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.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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.