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

Frustrated, Just Need To Vent.

dark-angel-warriore

Recommended Posts

dark-angel-warriore Newbie
dark-angel-warriore
Posted

So I posted about a month ago regarding positive blood work, various symptons, and my fear of going through the endoscopy.

 

SOOO, I got it done last monday (a week and a half ago).

Everything went well, I thought I was asleep, but apparently I just don't remember being awake.

 

Anyways, I had a pleasant experience at the hospital, no complications. Though they sent me home about 10min after I regained concsiouness, without explaining anything to me.

I did not think to ask about how it went.

 

4 days after the Endoscopy, I get a call from the surgeon's office saying that the surgon would like to see me to discuss the procedure that was done, and that they would give me the soonest appointment (today, so less than a week after the phone call).

 

Because I am confused about what the surgeon would want to talk to me about, I called my family doctor (who ordered the endoscopy), to see if she had received the results.

Apparently she received the results last week, just put it in my file without contacting me, and closed it.

So the "nice" secretary told me " it is your reponsability to book an appointment to discuss test results".

It would be nice if I even knew the results were in!!!!!!!!

She said that my doctor "PROBABLY" put the results in the file without saying anything because it did not show anything important.

 

 

We wern't looking for anything "important" we were looking to confirm if it is Celiac.

 

So now they are giving me an appointment in a month, because they need to leave room for emergency appointments.

 

How is anyone supposed to appreciate doctors if they do things like that ?

 

Now I am confused as to why I am even taking time off of work and losing pay to go see the surgeon, and then losing pay AGAIN to go see my general doctor who does not seem that concerned.

 

I have been "gluten free" (My boyfriend forgets and always cooks gluten products along with my gluten free products (on the BBQ, on serving plates, etc...) and I have been feeling worse than I did 2 weeks ago.

 

I know I should just wait until the appointment with the surgeon tonight, since he probably also has the biopsy results himself

 

but I just wanted to say "grrrr"

 

*end rant*

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

This makes some sense to me.  The Family doc would have received the results but not necessarily do anything with them.  He would think that the surgeon/GI doc would explain them to you.  And it sounds like the surgeon has set you up an appointment to discuss this.  After that visit is over, you may just want to cancel the Family doc appt.

 

Even if they told you something right after the procedure, you wouldn't remember it.  Anesthesia does that to you.  He would want to get the pathology results back first before telling you if you have Celiac.  I suppose, if he had seen a tumor or something obvious and dangerous, he would have told the person accompanying you to the procedure.

 

Get copies of the procedure report and the pathology report and blood tests while you are there.

dark-angel-warriore Newbie
dark-angel-warriore
Posted
  • Author

This makes some sense to me.  The Family doc would have received the results but not necessarily do anything with them.  He would think that the surgeon/GI doc would explain them to you.  And it sounds like the surgeon has set you up an appointment to discuss this.  After that visit is over, you may just want to cancel the Family doc appt.

 

Even if they told you something right after the procedure, you wouldn't remember it.  Anesthesia does that to you.  He would want to get the pathology results back first before telling you if you have Celiac.  I suppose, if he had seen a tumor or something obvious and dangerous, he would have told the person accompanying you to the procedure.

 

Get copies of the procedure report and the pathology report and blood tests while you are there.

I had written a long text but I will keep it to : I disgaree.

 

The surgeon is NOT a G/I, I have no idea if he will have the results since the test was ordered by my family doctor and not the surgeon itself.

 

Waiting a month and a half to get confirmation of tests results does not seem right to me. If it was a diagnostic test perhaps, but we were doing nothing but confirm, I am not sure what I need to "discuss" with her, if it is not important.

kareng Grand Master
kareng
Posted

I had written a long text but I will keep it to : I disgaree.

 

The surgeon is NOT a G/I, I have no idea if he will have the results since the test was ordered by my family doctor and not the surgeon itself.

 

Waiting a month and a half to get confirmation of tests results does not seem right to me. If it was a diagnostic test perhaps, but we were doing nothing but confirm, I am not sure what I need to "discuss" with her, if it is not important.

 

 

I'm sorry. I missed something.  The "surgeon" wants to discuss your results 11 days after the procedure? It can take 3-10 days to get the pathology report back.  Not sure why a "surgeon" did an endo but maybe you are in a different country and that is how it works?  Usually, an endo is a diagnostic test used to "officially" diagnose Celiac Disease.

 

Was just trying to help you understand the process because medical procedures can seem silly sometimes.  But I don't feel like fighting with you, so good luck.  I hope eating gluten-free makes you feel better.

notme Experienced
notme
Posted

my g.i. did my endoscopy - so i guess she is a g.i. surgeon?  i see you are in canada, so i don't know how that all works with the different doctors.  i got my results pretty quick, (she told me AND made sure she told my husband in case i didn't remember lolz)  and the office called with the pathology results so i requested copies of everything at that time.  

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.