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 Our Content
    eNewsletter
    Donate

Saw Specialist 2nd Time


num1habsfan

Recommended Posts

num1habsfan Rising Star

Not sure if any of u remember but in February I had a endoscopy, and by some chance I got no call or letter to come back so went to my family doc. My family doc said nothing showed in results. Here's the crazy thing...

Last month I got a letter from the specialist saying I didn't show up to my May 14th appointment, so I had my follow up on Thurs. (Aug.23rd). There was plenty of interesting things that went on..

1. My family doc LIED TO ME!!! There was 2 things that were shown on the endoscopy results. I have a minor hiatus hernia, not bad enough to need treatment but enough to cause heartburn (and those mystery chest pains I never knew what they were!!). Also, it was refractory sprue he tested for (not Celiac) and because that didn't show up, this specialist actually BELIEVES ME that it's not Celiac-related causing my pains!

2. He gave me a prescription for something that he says is stronger than greatly Buscopan and should give me some pain relief

3. He's going to get a copy of my tests from Calgary, I explained I went there and my family doc told him to only test for Celiac even though the specialist agreed to test for Crohn's etc.

4. On Sept. 13th I go back for an ultrasound and small bowel follow through. If he's not satisfied with those results, he'd like to do a colonoscopy. :blink:

5. I had to get bloodwork done: CBC, CREAT, LYTE4, FER, UREA, CRPH, and under "other" he wrote Fe saturation

....Thats the whole story. I know it may not seem like a big deal but this is soooo overwhelming for me. In the last 15 months this will be 8 major tests, what person would even imagine having to do all that??? This is going to make university so much harder, too :(

If you have advice or whatever, please reply. I'm in need of some words and thoughts, even if it's not positive

~ Lisa ~


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



Celiac.com Sponsor (A8-M):



Acersma Rookie

I too have a hiatal hernia. Even minor ones are a major pain. I deal w/ a lot of chest pain. It feels like when I am bloating it pushes my lungs and everything into my chest and I get shortness of breath and of course the horrible reflux and heartburn. My advice for that is to wait 3 hours to lie down after all meals. Elevate yourself in bed either by elevating the mattress or your pillows. And no chewing of pills or of gum. Makes more acid which you don't need and eat very blandly for a while. hope something here was helpful.

Jody

elye Community Regular

Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

num1habsfan Rising Star
Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

Nope, not diabetic (yet).

But everything else is more than enough already. I give this guy credit for trying to find what's wrong and believing it could be Crohn's, but just hate the non-stop testing :(

~ Lisa ~

elye Community Regular

Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

num1habsfan Rising Star
Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

Yup very true!! But these 1 1/2 years of being undiagnosed is more than enough, these tests SUCK obviously but I don't want to say no in case my some chance they actualy find the answer to whats wrong and whats making me worse :huh:

~ Lisa ~

elye Community Regular

Lisa, I've got a question for you that I've wondered about: what's the difference between celiac sprue and refractory sprue?


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Elye, refractory sprue is where a person with celiac for some reason or other doesn't heal while they are gluten free. With some people the villi just never grow back even though they are gluten free.

Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

num1habsfan Rising Star
Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

Paulina, thanks for explaining what that is for me to Elye. It's one of those things that you know what it is and how it affects, but don't know how to put it into words really, eh??

Also thanks for your wishes, I can use all the strength possible, my friends have been amazing so far (the true ones anyways!). You people are all what keeps me going.

~ Lisa ~

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

    2. - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

    3. - junell posted a topic in Related Issues & Disorders
      1

      Help!

    4. - cristiana replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

    5. - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,647
    • Most Online (within 30 mins)
      7,748

    Priscilla mc
    Newest Member
    Priscilla mc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
×
×
  • Create New...