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

Just Had Appt With Dietician


tiredofdoctors

Recommended Posts

ms-sillyak-screwed Enthusiast

Lynn -- glad you had good luck!

I have a thought. I wish some how we could get a copy of Dangerous Grains & The Palio Diet to the health care community. I don't have an answer how to get them to read the book(S). But next time I have the need to go, I'll ask if they read either book.


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



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I gave both my neuro docs handouts of things that I had downloaded with regard to Celiac affecting solely the brain (since that's my problem). I sat there while I made them read it! I gave it to them, then started pointing out things that I wanted them to specifically see. I also wrote down Peter Green's book -- and told them that it was a worthwhile read for them. My one doc actually got it! I've gotten to the point that I'm pretty hard-headed at the doctor. If I'm going to pay the kind of money that I have to pay for a 10 minute appointment, by golly they're going to at least pay attention to what I have to say!

ms-sillyak-screwed Enthusiast

Thank you Lynne!

tiredofdoctors Enthusiast

You're welcome -- we HAVE to educate these physicians. I'm sure that mine now think that I'm a B*****, but I just don't care. Ignorance is not bliss when you are a physician. I guess, regardless of what it takes, mine are going to become informed. I will not allow them to continue to keep stabbing in the dark. This is my LIFE they're talking about -- not just some sports game or a new car they're looking at. They're going to put as much effort into researching my disease as they do researching the newest car they're going to purchase!!! It did make my one neuro get off his butt and do the genetic testing that I needed! I told him that my father was willing to use his frequent flyer miles to send me to England to participate in their research projects. Evidently that was a little threatening to him, so he said, "haven't we dont genetic testing on you???" I told him that he hadn't even done the HLA DQ2 & 8. He said, "I'm sorry, I thought that we had done a full genetic work-up." Yeah, right. At any rate, it got the ball rolling. I guess if you're a squeaky wheel, you really do get the grease!

trinity Newbie

Hello,

The dietician I spoke with knew less than I did ( I was so frustrated) and I had to research it all for myself. I'm glad you had a good experience. Did your dietician say anything about chewing gum? What about splenda? I can't seem to find anything on these and celiac.

I was diagnosed last May. Hope to hear from you.

Thanks,

Trinity

tiredofdoctors Enthusiast

I have ordered a new list, it's an entire book -- it will have all the chewing gums, etc. which are gluten-free. I know that Splenda is gluten-free. Am considering purchasing the Clan Thompson list (you can get it for your PC, handheld, or both, and it has upgrades 3x/year) I'll check the lists I have right now, and let you know about the chewing gum. I know I've bought some, so I obviously have SOME listed!!!!! Talk to you soon . . . Lynne

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
×
×
  • 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.