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

Recommended Posts

MICHAELENE48 Newbie

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

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

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

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

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

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

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

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

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

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

I completely agree with that Sally.

chelly1 Apprentice

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.

  • 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 SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.