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Those With Gluten Intolerance, Especially Severe..

beebs

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beebs Enthusiast
beebs
Posted

Hi guys,

Can those who have gluten intolerance please tell me your symptoms -I am trying to work out the difference as I am undiagnosed and am probably going to remain that way (not by choice).

So I am trying to work out which is more likely.

Thank you!!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Although I am officially diagnosed celiac some doctors would consider me gluten intolerant because I don't show up in blood tests and don't have one of the two most common associated genes (in the US anyway they are considered celiac genes in other countries).

My symptoms were very severe and well advanced by diagnosis and are in my sig. Personally I consider GI, GS and celiac all the same thing.

beebs Enthusiast
beebs
Posted
  • Author

Although I believe that if you have gluten intolerance as opposed to Celiac you are at no higher risk of other autoimmune diseases, is that true?

ravenwoodglass Mentor
ravenwoodglass
Posted

Although I believe that if you have gluten intolerance as opposed to Celiac you are at no higher risk of other autoimmune diseases, is that true?

I don't think enough is really known about GI or Celiac to say for sure one way or another.

beebs Enthusiast
beebs
Posted
  • Author

Ok, thanks :)

Apparently there is an interesting study on GI that has come out of Melbourne, Aust - our Paed GI recommended I read it, but I have forgotten his name. I'll link it if I can find it!

Roda Rising Star
Roda
Posted

My oldest son is not celiac (negative blood work 4 times and negative biopsy). He had major constipation issues since birth and dropped on the growth curve by the time he was 12 months old significantly. At one point he was on miralax for appx. 1.5 years. We just thought he was going to be small. He stayed pretty consistant at the 25th percentile but then he started to drop again at age three. He is 10 (will be 11 in Feb.) and is one of the smallest boys in his class. After my youngest son was diagnosed with celiac and went gluten free last Nov. (he really has been growing like a weed since), my oldest son's slow growth became really apparent. My 6 almost 7 years old is really gaining on his brother. The most recent complaints for him were almost daily stomach pains, gas and bloating. He still didn't have a BM only about every 3-4 days. I put him gluten free the end of August and things I have seen improvement in are: he has gained 5 pounds, his feet grew(they hadn't grown in over a year), he is starting to grow in height as some of his jeans are starting to get short, no more daily stomach pains/bloating/gas, his color has improved, and he is regular for the first time in his life going at least every to every other day.

Di2011 Enthusiast
Di2011
Posted

The article is likely to be associated with medical professional Bob Anderson. He is one of our leading celiac/gluten researchers.

Open Original Shared Link

Highly recommend all GI/celiacs read about his work.

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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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