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Could it be caeliac?

Karaokequeen
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Karaokequeen Newbie
Karaokequeen
Posted

So 10 weeks ago i had really bad headaches and sinus pain. I have had 2 lots of antibiotics and also am having physio for neck pain that nurse said might be causing headaches. I had bloods to check diabetes etc and vits and they said low vitamin D so i have been taking daily vitamin D tablets. 

I have been feeling tired and run down for these 10 weeks. Lately i have been feeling full / clogged up after certain foods. I just had some breaded chicken and i felt i couldnt eat anymore as it was clogged in throat like a hoover that gets blocked.  I went to a restaurant with friends and had the same issue after my bread starter. Like i needed a gallon of water to wash it down. I have always had IBS issues - i poo probs 2 times a week and my stomach hurts when i need to go. 

I have been to hospital today as was having tingling fingers numb hands and pains in arms but they have done an xray, bloods, heart check and vant find anything. I had a MRI last week. My partner seems to think i just make stuff up as i seem to always have something wrong but to be honest i feel like they just dont know whats wrong and i just want an answer really. I came home from a meal out with friends as i got panicky, i spent 4 hours today in a n e - like i would waste my time if i didnt honestly feel crap. 

I have come across caeliac and have blood test booked for it next week as i havent changed diet but am not sure my symptoms match up. Has anyone had the same thing?

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Ennis-TX Grand Master
Ennis-TX
Posted

First this response is from my own opinions and observations and I am not a doctor.
I presented with random GI issues most my life and various little things I never knew were realated and took for granted. Like you I was constipated going once or if twice a week sometimes over 7 days.

The constipation and the tingling needle skin feeling I chock up to magnesium deficiency from my damaged intestines not absorbing it...heck most Americans are low in magnesium from some studies. Magnesium Citrate called Calm from Natural Vitality can help til you heal. Dose it to tolerance with a scale, up your dose 2 grams a day taking it in the morning (I like it in a warm glass water or tea), when you get loose stools later in the day the next day lower the dose 2 grams so you should have comfortable BMs.

Numbness, Tingling can also be from various B-vitamins being low as the damaged intestines prevent absorption along with celiac often needing higher doses, or from gluten ataxia (I developed this) where you immune system attacks the nervous system in response to gluten.

 

Karaokequeen Newbie
Karaokequeen
Posted
  • Author

Thanks for your reply. 

Would the B vitamins and magnesium show up on a blood test? I was under the impression they checked for vitamin defenciences hence the vitamin D being low. 

I should have also mentioned excessive gas but from my mouth and the top end. I see many symptoms saying about gas but more from the bottom end. 

 

Did you bowel movements increase when you started being gluten free?

BuddhaBar Collaborator
BuddhaBar
Posted

You have a lot of the same symptoms I had. I thought I was multi-sick. That I had tons of issues, but it turned out it was only one. The thing about Celiac disease is that it can affect almost anything in your body and a lot of the symptoms are also symptoms of other diseases. My experience is that a lot of doctors are not really good detectives. They just examine "THAT" symptom you have and if they don't find anything then you don't have anything and then they just let you go. 
Nobody should ever accept an IBS diagnosis unless everything else has been ruled out. IBS is just a shut-up-you-annoying-patient-diagnosis. 

Karaokequeen Newbie
Karaokequeen
Posted
  • Author

I totally agree, luckily i am seeing the same nurse (advanced practioner) and she seems to be on the ball with getting answers for me and helping a diagnosis. She has sent me for lots of tests for things and i see her to discuss results and things. She never makes me feel unimportant and i really like that. 

The 6 weeks of eaten gluten are awful when it seems to cause so many issues. I know its 4 days till my blood test it just seems so far away and then if thats negative i feel like well whats wrong with me... 

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    • 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.
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