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

Doctors?


blueshift

Recommended Posts

blueshift Apprentice

I don't quite understand why someone should go to the doctor for diagnosis. Every time I went to them I got nothing but shrugs and " irritable bowel syndrome" like everyone else here..When I threw all my symptoms at them, they just called it "normal" and a part of getting old..Besides, I passed my physicals, didn't I?

By knowing that my niece was diagnosed with it...that another niece has had 7 spontaneous abortions, along with gut problems in siblings, myself, etc..I couldn't fathom going back to them with anything to do with my gullet..

The symptoms are fading fast..Isn't that enough? The test involves taking some into my body and I will not tolerate my bowel obstructing again like it has daily for the last 56 years..I feel better than ever and will not tolerate eating that poison again.


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Yea...those types of doctors aren't the ones you want to go to. I go to a doctor because he can monitor the medical aspect of this much, much better than I can and because my doctor is EXTREMELY knowledgeable about celiac disease... (part of the Celiac Disease Center at Columbia University).

But go with your gut! :lol: (no pun initially intended, but then I thought it was funny)

If you feel good without gluten, then that's reason enough to stay gluten-free.

ianm Apprentice

I don't have an official diagnosis and doctors were of absolutely no help to me. I am healthier at 37 than I was at 17 and that is all that matters.

plantime Contributor

If you accept the diagnosis your body is giving you, you don't need a doctor's. I am glad you are feeling so much better!

skbird Contributor

I'm not officially diagnosed, either. I did tell my doctor I was feeling better after going gluten-free for two weeks and asked if I could have tests and he said that actually, seeing a change on a diet is as good a diagnosis as any other - keep it up for 6 months and reevaluate. At that time I did the EnteroLab test and found some answers to how I have been feeling so that is good enough for me. I haven't gone back in to see my doctor since I went gluten-free but have been thinking of going in to discuss this with him. I have been trying to decide if it's worth paying for the appointment to get his stamp of approval or not, and I'm just not sure that's the case. I'll probably go in eventually.

Stephanie

marycubs Rookie

Hi -

I also was disappointed in the way two of my doctors were so quick to label it IBS and then just say 'deal with it'. As my health got worse I investigated the web and self diagnosed myself and did find a GI that knew of the disease and did a biopsy to confirm.

I've decided to try to educate people I know about celiac disease. (I've labeled myself the Ambassador of celiac disease) :P I sent an email to my primary doctor informing him of the diagnosis and my disappointment that it wasn't found earlier. I also told him that celiac disease is more common than originally thought of and I hope that as he sees patients in the future that he will remember celiac disease as a possible diagnosis.

He responded positively - said that he is open to his patients 'teaching' him. I know many doctors may not be open to our feedback - but I feel that if all of us with celiac disease make the effort to educate the health care professionals, our families and friends, than over time people will become more aware of this disease.

Mary

lovegrov Collaborator

Mine is a mixed tale. I got DH while I was in my 20s and although my doctor tried and tried to get me to go gluten-free, he also never told me about the celiac link. None of my doctors did. All I knew was that dapsone took care of the DH. I wish I had known more earlier.

However, when I DID suddenly get very ill from celiac, my GI did quickly find the reason and he told me to go gluten-free for the rest of my life. None of this stuff about going gluten-free for a while and then trying to eat gluten again. In addition, doctors for ALL of my first-degree relatives readily agreed to test them. My father, who had no obvious symptoms other than DH, was positive on everything.

richard


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



Celiac.com Sponsor (A8-M):



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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

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

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748

    AngieMcK24
    Newest Member
    AngieMcK24
    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

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.