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

Initial Appointment With Gi Specialist Dr Tomorrow

Meg123

Recommended Posts

Meg123 Explorer
Meg123
Posted

Hello Again

I've been spending a lot of time in here over the past couple of months, I've become a bit fixated trying to work out whether or not to expect to see a positive biopsy or not. Too much googling, read too many study's etc on the chance of false positive ttg in the bloods vs the negative gene test. I'm reading a lot of varying results. Sending myself crazy.

I phoned the lab to see if I could get any info on which genes I actually did have, (since the report only said that I didn't have DQ2 or DQ8) ie after reading in here I see lots of members have DQ1. But they wouldn't give me any info :( , telling me I had to go through a Dr. <_<:rolleyes:

Anyway, I have stayed on the gluten even though I crumbled after three weeks, but just not hammered myself as much. I have my first initial appointment tomorrow with the specialist GI Dr. I'm in the process of writing down my symptoms so I don't forget. I was just wondering if anyone has any advice for me. I seem to have an awful tendancy to rub Doctors up the wrong way somehow :unsure: this is all costing more than we can afford and I just don't want to stuff it up, and have him refuse to biopsy me. We're not in a position to go and get 2nd or 3rd opinions.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I hope the doctor is helpful for you. If he does agree to biopsy do keep in mind that can be a false negative so do a gluten free trial after the test. You don't need to wait on the results.

If you were gluten free for a bit and it helped make sure to stress that. If you are doing a challenge and you have kept a symptom journal do bring that with you.

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

Meg123 Explorer
Meg123
Posted
  • Author

......

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

:angry: thats so frusterating. It's annoying enough when DH does that <_< , but when you are paying someone a LOT of money to care and listen to what you say regarding your health, which was why you were there, :angry::angry::angry:

Archived

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

Go to topic listing

  • 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
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their...
    2. Trish G
      - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease? Thanks!!!
    3. kpf
      - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease: fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches n...
    4. knitty kitty
      0

      Gastrointestinal Beriberi

    5. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags

      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency. Your symptoms seem really familiar. Malabsorption is a real thing that happens with Celiac. A multivitamin is not going to prevent nor correct nutritional deficiencies. Doctors do not recognize nutritional deficiency symptoms. Gastrointestinal Beriberi is not recognized...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748
    jlcvt
    Newest Member
    jlcvt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Fiber Supplement

      By trents · Posted

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      Basic metabolic panel results - more flags

      By knitty kitty · Posted

      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.