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

Do I Need A Dr.

MICHAELENE48

By MICHAELENE48
in Doctors

Recommended Posts

MICHAELENE48 Newbie
MICHAELENE48
Posted

I WAS JUST DIGISNOSED WITH FAMILY DR. I THINK I'VE HAD THIS FOR YEARS THE FAMILY DOC. IS SENDING ME TO A GASTOR DR. THEY ACT LIKE THIS IS NOTHING IT HAS ME WORRIED SHOULD I BE :(

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

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

It is and it isn't. If you really do then you are going to make some lifestyle changes and they will be for the better. You did not list any symptoms that led your DR to believe you have celiac. For me I was forced to live a much healthier lifestyle and my life is drastically better now than it was over a year ago. This disease is not the end of the world and not as difficult to maintain as it first appears. We need more info about why the doctor suspects celiac. It is very rare to even find a doctor that even knows what it is.

MICHAELENE48 Newbie
MICHAELENE48
Posted
  • Author

I HAVE BEEN VERY ANEMIC FOR YEARS MY CALCIUM LEVELS ARE LOW AS WELL THEY DID THE BLOOD WORK AND I WAS VERY POSITIVE I HAVE HAD IBS AND FIBROMYALGIA FOR YEARS MY THYROID IS SCREWED UP ALSO SI I'M A MESS :rolleyes:

ianm Apprentice
ianm
Posted

Sounds like you got lucky and found a good doctor. All of the problems you listed are related to celiac. Read everything on this website to learn all you can. Ask as many questions as you can think of. We are here to help. This is the first step to a MUCH better life.

MICHAELENE48 Newbie
MICHAELENE48
Posted
  • Author

THE GASTRO DR. ACTS LIKE THIS IS NO BIG DEAL JUST GO ON A DIET IF YOU WANT OR NOT THATS ABOUT IT HE SAID HE NEVER HEARD OF SOMEONE WITH CELIAC HAVEING CANCER I HEARD 1 IN 15 CAN GET CANCER THATS SCARY TO ME :(

celiac3270 Collaborator
celiac3270
Posted

You're correct.....cancer is often associated with intestinal cancer. Your doctor is entirely wrong to think that there is no connection, cause there's a very strong one. I'm not sure the exact statistic, but your chances are greatly increased if you're a celiac not adhering to the gluten-free diet.

Welcome to the board :D

MICHAELENE48 Newbie
MICHAELENE48
Posted
  • Author

MY FATHER DIED OF INTESTANAUL CANCER SO IT WORRIES ME I THINK HE HAD CELIAC HE WAS DEBETIC AND LACTOS INTOLARANT :unsure:

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Its a good thing they found this now. If you do not follow the diet you will be at increased risks but not if you adhere to the diet. Also you mentioned your dad was diabetic? That also is linked with celiac. The only thing you really need to be concerned about is following the diet...this site is great for support and info. Good luck :D

ianm Apprentice
ianm
Posted

Just before I went gluten-free I was on the verge of full blown type II diabetes. Now there is no diabetes anywhere in sight for me. Diabetes, lactose intolerance and intestinal cancer are all signs of celiac. Since celiac is a genetic disease it is a good bet your dad had it too. Following the diet is not hard and is actually fun. I now eat foods that I would never have tried otherwise. Buckwheat has become a real favorite.

Rikki Tikki Explorer
Rikki Tikki
Posted

oh Ianm, I think great minds think alike! I have been sick the last couple of months with something other than celiac, but I had your signature going through my head yesterday at work and then saw it on your post today. Made me smile.

Michaelene: I think you need to get a new doctor, some of them just don't know much about it. I remember when the GI doctor told me, his exact words were "you will know more about it in a year than I ever will" I was like what? That was the end of it, I was on my own with a GP that does not have another patient with it. So, for the most part I am on my own. Watch your labels and you will learn a lot on the board here.

:D Welcome

ianm Apprentice
ianm
Posted

I completely agree with that Sally.

chelly1 Apprentice
chelly1
Posted

I know exactlly how you feel when my son was diagnosed i had never even heared of celiac disease and just hearing the word disease was enough to put any one over the edge. I was totally in over my head but not only that I had to look like I knew what I was doing for my sons sake and also make it look like there was nothing to it and every thing was fine. I didn't even know where to start and over 5 years later I am still learning but then so is my son, I am lucky that he was so young I suppose because he knows no different. We had 1 appointment at the hospital and we have never seen a dietician even to this day. But I will say this thank god for this sight and the lovley people on it after struggling on my own for so long at last there are people who understand and know what your talking about... now your on this sight you won't go wrong

Archived

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

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

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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.
×
×
  • 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.