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

Nervous, Nervous, Nervous!


penguin

Recommended Posts

penguin Community Regular

Why am I so nervous about an effin' doctors appt? This is a new GI doc, the last one I saw two years ago was a total toolbox. :rolleyes: I don't like dentists for the same reason, one (ok two) bad apples in the bunch ruined the whole business of apples.

Apparently this one knows something about celiac, but I'm afraid he'll think I'm nuts! Of course, I have a doctor that actually diagnosed me celiac, but she didn't order an endo or anything. I have this big long list of symptoms and stuff, as much for me as for him, since I tend to forget things at dr appts. I'm going togive it to him along with copies of records from Dr. GI Toolbox and my most recent bloodwork. Here's what it says (sorry for yucky details):

As a child:

 GI workup around age 7, everything normal, stomachaches attributed to stress from siblings going to college

 Vomiting in the middle of the night (about every month)

As an adult:

 Mononucleosis summer 2002, sick for two months

 Beginning the following fall, diarrhea almost daily to present

 On-and-off anemia, elevated platelets

 Fall 2003- pyloric spasms start (ranging from weekly to every few months), no cause found after upper GI, ultrasound, and EGD

 Small ulcer found during EGD, attributed to heavy NSAID use. Treated with 60 day course of nexium. Didn’t effect spasms or diarrhea.

 Avoided oranges, tomatoes, and other acidic foods. Spasms happened anyway.

 Several h.pylori blood tests negative (taken about once a year)

 Spasm symptoms: moderate/severe abdominal pain, nausea, vomiting

 Spasms formerly treated with hydrocodone, levsinex, now treated with bentyl and phenergan

 Diagnosed with IBS, told to eat more whole grains. Didn’t help, made diarrhea worse.

 Celiac Panel in 1/06 – Only IgG comes out positive

 Gluten-free for four months, had some improvements

 Dr. Bartos makes Celiac diagnosis 2/24/06 after 3 weeks gluten-free

 Allergy testing 3/06, no food allergies

 Back on gluten 5/19/06

 Currently taking daily: Prilosec, Kariva. As needed: Bentyl, phenergan

 Other symptoms (GI or Otherwise):

o Heartburn

o Flu-like muscle aches (no fever)

o Facial numbness

o Lack of concentration (Spaced-out feeling)

o Feeling of intoxication

o Mouth sores (painful white patches)

o Foul gas

o Foul stools

o Lightly colored stools (from bright/pale yellow to orange)

o Loose stools (often bulky)

o Mucus in the stools

o Passing undigested food (especially vegetables and fruits, cooked or raw)

o Problems drinking milk, but cheeses and yogurt ok

o Tingling in hands and toes

o Tingling in the scalp (feels like my hair is falling out?)

o Lower abdominal cramping

o Charley horses (hereditary, have them at least once a week)

o Fatigue

o Gas and bloating

Um...anything else I should include? Am I nuts? I'm flipping out!


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



Celiac.com Sponsor (A8-M):



Matilda Enthusiast

..

Felidae Enthusiast

I know what you mean about having one bad doctor or dentist and then you always worry that the new ones will be bad too. Pretty comprehensive and I agree with Matilda add how the gluten challenge affected you.

Good luck with your appointment.

jerseyangel Proficient

Chelsea--Sounds like you are well prepared for your appt. I completely understand why you are nervous, but try to keep an open mind where the doctor is concerned. (I can't believe I actually said that!!) But really. I hope that it goes well and that he's not a toolbox :D I'll be anxious to hear what he has to say--

flagbabyds Collaborator

thats a really long list!

i think that you are well enough prepared.

TCA Contributor

I love being prepared. You sound like you're ready! Good luck!

penguin Community Regular

I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I won't eat because I can't get over the fact that I've gained 16 lbs since May 19th! Very few of my clothes fit me. I haven't weighed this much since high school. Why on Earth would someone gain weight that fast? :unsure:

That's like, 5 lbs a week?!

I don't know what to do...


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



Celiac.com Sponsor (A8-M):



Guest nini

good luck, definitely mention how going back on gluten has affected you. This is VERY important.

also, right before my dx, I gaine about 30 pounds in a matter of WEEKS... yep... was a very sick puppy... so while 5 pounds in a week seems a lot, it isn't as bad as it could be! I was literally gaining 10 pounds a week... keep us posted!

jerseyangel Proficient
I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I know that feeling so well...hopefully in an hour or two, you'll feel relieved and have some answers. It's gonna be ok :)

fanny Apprentice

Good luck and stay strong.

I'm having my second endoscope next month and I nervous about that I hope that my villi are healing.

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 Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    2. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    3. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    4. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    5. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • 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.