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Well,thats It Then....results Are In!

Twiggy

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Twiggy Rookie
Twiggy
Posted

After nagative endomysil blood tests and negative gastroscopy results the doctor has diagnosed me as gluten intolerant.She advised me that like ceoliac patients i should avoid gluten like the plague.She admited that test results are not always accurate and said that if i wanted to repeat the test i would have to reintroduce gluten into my diet for the next 6 months.There is no way! i would rather boil my own head than eat gluten ever again.So betwean us we decided that if i was going to go gluten free there was no need for further testing as the treatment would just involve what i am already doing anyway.I think i may just accept this and get on with my gluten free life,i cant be bothered persuing a label for my condition,i am just happy i am rid of those horrid symptoms.The reason for this post is to ask all of you more clued up folks if you think i made the right decision?? please respond,i feel your input will calm my thoughs :)

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Rudi Newbie
Rudi
Posted
After nagative endomysil blood tests and negative gastroscopy results the doctor has diagnosed me as gluten intolerant.She advised me that like ceoliac patients i should avoid gluten like the plague.She admited that test results are not always accurate and said that if i wanted to repeat the test i would have to reintroduce gluten into my diet for the next 6 months.There is no way! i would rather boil my own head than eat gluten ever again.So betwean us we decided that if i was going to go gluten free there was no need for further testing as the treatment would just involve what i am already doing anyway.I think i may just accept this and get on with my gluten free life,i cant be bothered persuing a label for my condition,i am just happy i am rid of those horrid symptoms.The reason for this post is to ask all of you more clued up folks if you think i made the right decision?? please respond,i feel your input will calm my thoughs :)

Hi Twiggy,

My wife had a blood test and endoscopy done recently and the results were negative for celia disease. She has the same symptoms of many people here on this forum and two weeks ago, she decided to go GLUTEN FREE, even though we don't have difinitive answers as to what is causing her symptoms. Its frustrating not getting any answers, however she has been feeling better since she went gluten free and is afraid to even try anything with gluten for fear that her symptoms will return. I think you made the right decision, the diet is not harmful and in many respects better for you. Welcome to the post, there are many people here who are very knowledgeable and have great advice...they have certainly helped me and my wife. Good luck! :)

Twiggy Rookie
Twiggy
Posted
  • Author

Thanks Rudi,i have to admit i share your wife's fear of gluten containing foods.I cant bear the smell of bread and the smell of cooking pasta either,maybe its a defence mechanism to keep me safe.Nothing tastes as good as i feel since ive stopped eating gluten (6 weeks ago) so i dont feel like i am missing out on anything.I do find it comforting though that if go out to eat and accidently get glutened, the worst i will suffer is a couple of days of gasto probs but its not actually a danger to my long term health like coeliac Desease sufferers.I agree also that the diet is more healthy than a gluten one as it limits processed food and i am a big believer that they cause cancer.Hope your wife continues to feel better too.x

ranger Enthusiast
ranger
Posted

I think you are doing the right thing. Many on this forum tested negative But gluten still made them sick. As they say, the proof is in the pudding, and my pudding is thickened with cornstarch. Glad you're feeling better.

lizard00 Enthusiast
lizard00
Posted

If gluten makes you sick, then avoiding it is the right thing to do. After one week of being gluten-free, I realized I was scared of gluten, too. I went gluten-free and haven't looked back. I tested negative, too, but my doc is pretty convinced I have celiac and has diagnosed me as such. But you are right, it doesn't really matter if you have the label or not; the treatment is the same.

I hope you continue to feel better!!! :)

Twiggy Rookie
Twiggy
Posted
  • Author

Thanks guy's i appreciate your replies :)

mommida Enthusiast
mommida
Posted

I never had Celiac officially diagnosed for myself. I have heard people with official diagnoses have had to pay higher life insurance premiums or had problems with "pre-existing" conditions medical coverage.

If gluten free makes you feel better, that is enough of an answer.

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Twiggy Rookie
Twiggy
Posted
  • Author

I am actually amazed at the ammount of people who say to me ''oh i cant tolerate bread either'' it just goes to show how many people are affected even in a slight way by gluten :angry:

Twiggy Rookie
Twiggy
Posted
  • Author

Dratt! I accidently glutened myself on tuesday and ive been payiong the price for the last 2 days......my tummy sounds like a cauldren.....ouch.My family need gass masks <_<

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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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