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

Doctor Visit, Finally A Good Doctor


JaneWhoLovesRain

Recommended Posts

JaneWhoLovesRain Enthusiast

I finally has my appt with the GI doctor this week. I made the appt in November right after I found I tested positive for the gene and this was the first available so it's been a wait!

He couldn't have been nicer, I don't think I have ever had a doctor who sat there and took the time to patiently listen and ask questions as if he had all the time in the world. He even looked with interest as the pictures of my rash, which is the total opposite of what my pcp did. I was impressed!!

He feels the likelihood of me having celiac is 80-85%, or maybe he said 90%, but it's up there. The only thing that didn't fit was the fact that the rash was BEHIND my knees, rather than in the FRONT, but all the other rash spots fit, elbows, shoulders, hips, neck, symmetrical, etc as did other gi symptoms and my vertigo/off balance issues. And thank God, he said the pictures do not look like scabies. He sent me for blood work - I'm not sure what, I assume the basic celiac stuff, but I trust him enough so that I did not have to write it down and come back google to be sure it is what it needs to be. He wanted to take it even though I have been gluten-free for some time, he said he has seen blood work come back positive when people have been gluten-free so maybe mine will. And I did do some gluten experimenting over the Christmas holidays so maybe the blood will show something. In any event, he told me no more experimenting, no more gluten, none. He also wants me to have an endoscopy and colonoscopy (been 7-8 years since the last). Not looking forward to either of these. Meanwhile, I have to have a breast biospy in the beginning of Feb and that is more or less taking front seat to the celiac stuff. He was even nice about that and told me that certainly takes precedence and the scopes can wait and to be sure and let him know what it shows, and good luck, etc. I was diagnosed with bc almost 10 years ago, very tiny and early, now something else has shown up and I am more than a little anxious about this.

All in all, it was an excellent appt and I am glad someone finally listened to me and believed me instead of blowing me off.

Jane


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



Celiac.com Sponsor (A8-M):



jlaw Apprentice

That's great Jane. So nice to hear a positive report! Keep us updated, anxiety over up coming tests is really not my strong point, I can understand your nervousness. Best of luck.

IrishHeart Veteran

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.

mushroom Proficient

A doctor who listens :wub: How great to find someone like that. So glad for you.

JaneWhoLovesRain Enthusiast

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.

Yes, IrishHeart, that is who I saw. Thank you for giving me his name. I can see why you like him so much. Too bad there aren't more doctors like him.

Jane

IrishHeart Veteran

I told you! He's the man. :wub:

I have sent 8 people to him. & 6 were celiacs. One had ulcerative colitis, one "possible celiac" ---but certainly

NCGI.

I am so glad you finally decided to go. He is one of a kind.

He " gets it". They are very good about giving you the lab test results in that office. Ask Michelle to print them off and take them with you when you go back for your return visit.

You are in GREAT hands now.

Best wishes with your breast biopsy. I, too, have been down this road.

My thoughts are with you.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

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

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

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.