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

Any Advice On Starting gluten-free Please?


Deb O (UK)

Recommended Posts

Sara-UK Rookie

Managed to get access to most of the ones I wanted - I'll look at his ref list.

You've scared me now! I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!

Maybe I'll wait and see what the lady at the testing place says first!

Sara


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



Celiac.com Sponsor (A8-M):



gfp Enthusiast
Managed to get access to most of the ones I wanted - I'll look at his ref list.

You've scared me now! I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!

Maybe I'll wait and see what the lady at the testing place says first!

Sara

Sorry, didn't mean to scare you ... it's just I know a few people have emailed him and got no response or a terse one. Then again they were not geographically close or in a field he would find interesting.

That being said it's not uncommon. I can think of quite a few of my old prof's who would be exactly the same if a member of the general public wrote to them.

I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!
You wrote up your thesis :D

I was just really trying to say don't come across as chatty but perhaps pique his interest with something you do know about.. this is just a guess, I don't know the guy, Ive just read a lot of his papers but from what other's have said he is the sort who's first response would be "did you read the paper?"

Either way, read up on the refs and some of the general papers. He has some Lancet articles which are anti-biopsy as a effective screeing and accuracy of serology suites etc. you should read these IMHO before seeing the lady at the testing place on the grounds you are probably as well qualified if not more so than her.

Another site has an excellent collection of papers all categorised but unfortunately its down right now and has been for a couple of weeks. I wish I'd copied all the refs before this happened!

celiac disease is one of those things you are going to have to do the work. Short of getting an appt with Hallamshire finding a good Dr. in the UK willing to support current research is hard.

I once had an online argument with TV Dr. Hilary Jones.

One specific area I adressed was neuropathy and depression. He dismissed both saying there was no evidence.

I posted the evidence (quite a few papers of the type you have printed) and he just refused to respond and locked the thread.

I don't know what the official answer is for GP's.. but I suspect it is one of those subjects they are expected to tow a line with; like the triple vaccine. Basically we don't care what your opinion is this is what we have been told to follow.

If you find the Lancet articles you can also see the letters to the editor from the moths afterwards (This is largely why I believe Hadjivassiliou is non-communiciative. Many of the letters are reminicent of the letters paid for by glaxo-welcome over the articles by Marshal and Warren on h. pylori..

They range from personal attacks on his qualifications to social life.... many simply criticise his research saying everything buty a biospsy is less than useless and NON of them provide any scientific arguament against it.

He is in direct opposition with CUK over practically everything CUK stand for from the 200ppm limit to biopsy testing to CUK's firm bview that celiac disease is limited to the gut and has no other manifestations.

Given your qualifications I am sure you can read the papers and come to your own conclusions. Indeed many intellegent but unqualified in terms of academic qualifications have doen the same.

The problem is unless you see a good MD you are likely to come up against the official position. Unfortunately Dr's don't hear much about celiac disease anyway and when they do its the deliberate misleading by CUK. It doesn't mean they won't change view but you need to go in fully armed with the papers and if needs be contradict the GP on grounds you are better qualified than they are.

Other than this happy reading :D

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.