Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Just Had Appt With Dietician

tiredofdoctors

By tiredofdoctors
in Doctors

Recommended Posts

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tiredofdoctors Enthusiast
tiredofdoctors
  • Author
Posted

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!

Link to comment
Share on other sites
ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Thank you Lynne!

Link to comment
Share on other sites
tiredofdoctors Enthusiast
tiredofdoctors
  • Author
Posted

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!

Link to comment
Share on other sites
trinity Newbie
trinity
Posted

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

Link to comment
Share on other sites
tiredofdoctors Enthusiast
tiredofdoctors
  • Author
Posted

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

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748
    Nicole K
    Newest Member
    Nicole K
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      50 YO Male Recently Diagnosed with Celiac Disease

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
×
×
  • Create New...