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

Questions For Son's Doctor

redheadheather

By redheadheather
in Doctors

Recommended Posts

redheadheather Explorer
redheadheather
Posted

I am meeting w/my son's doctor (or, group of doctors since it's an HMO - he's not really assigned just one doctor). I am just wondering if you guys could provide some questions for me to ask them. I'm going to talk to them about their testing (why they only did two tests (IGG/IGA) and not the full "celiac panel" - if/when they will be re-testing for levels... what else they should test for (someone suggested iron levels) etc. They are not very helpful/accomodating at this point so any questions I can give them up front today will definately help (they treat me like they are patting me on the head like I'm a child - UGH)

anyway - I know this is kind of a hard question to answer - there are so many questions I could ask - but I can't think of alot so any help would be appreciated.

THANKS!!

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

Celiac.com Sponsor (A8-M):


skoki-mom Explorer
skoki-mom
Posted

I asked my GI about re-testing antibody levels. He didn't think there was much point, as antibody levels are not a good indicator of the extent of the disease. He said unless the go way up, they really don't tell you much. Like, if my antibody count dropped by half, for instance, it would not mean I had experienced 50% healing. I am probably getting scoped again in Feb or so just to see what's going on.

Sorry I can't be more helpful, but that is what I know at this point about following bloodwork.

Jnkmnky Collaborator
Jnkmnky
Posted

they are patting me on the head like I'm a child - UGH)

Heather- That makes me sick. Hopefully, it makes you mad. You won't get any help from any dr who knows nothing about celiac disease then compounds his lack of knowledge with arrogance. I don't know what to suggest except blood work to look for difficencies * I can't spell that*. My son was low in all minerals they checked for, all vitamins, and iron. Across the board - low. They suggested I triple his iron pills (which I did NOT because it seemed that would cause additional problems). He ate meat with every meal for a couple of weeks along with ONE iron pill. He was fine, in my opinion, a few weeks later. Maybe you could print out a bunch of basic info about celiac disease and bring it with you to the appt. Even put it in a nice folder to show you've bothered to take the time when they haven't. When they say something with an air of absolute knowledge and you know they're wrong, you can whip out your information and it will be more than your word against their's.

Archived

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

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


  • Member Statistics

    • Total Members
      127,522
    • Most Online (within 30 mins)
      7,748
    Lils
    Newest Member
    Lils
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Hi again - I received the biopsy results but haven't had follow up appointment with Dr. yet.  Wondering if you could comment on this: "Duodenum, random, Biopsy (Cold Forceps): MILD VILLOUS BLUNTING WITH PROMINENT INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH SPRUE (MARSH TYPE 3A). See Comment. Negative for Infectious Organisms, Dysplasia or Malignancy. COMMENT: While characteristic, the histologic findings are not diagnostic for gluten-sensitive enteropathy / celiac disease. A number of additional entities can enter into the differential diagnosis of celiac disease based on the histologic features, including tropical sprue, bacterial overgrowth / stasis, unclassified sprue, specific food allergies, many drugs including NSAIDs, olmesartan and immune checkpoint inhibitors, and a wide range of autoimmune diseases including adult-onset autoimmune enteropathy, diabetes, thyroiditis, lupus and multiple sclerosis and occasionally common variable immune deficiency. History of drug take, celiac serologies, HLA-DQ status and response to a gluten-free diet might be a key for a definitive diagnosis" They say "consistent with Sprue (Marsh Type 3A)" and then comment that the findings are not diagnostic for celiac disease.  I thought Marsh type 3 was conclusive (and I know that 3A is the best outcome as it relates to intestinal damage). Is this just normal caveat language or am I missing something?  I had appt scheduled for tomorrow but Dr. is sick and now rescheduled to over a week from now.  Appreciate any insight you can offer in the mean time.  Thanks!!
    • Sicilygirl
      Enegy level extremely low

      By Sicilygirl · Posted

      Hello Scott, I did lose weight at the beginning of diagnosis and I know that it will take time to put on the weight I did lose. I think I have no appetite because this has been a roller coaster of emotions and a Big change on my body and its out of whack mentally and pysically. I think I am just depressed to be honest.  
    • trents
      How long can symptoms take to appear?

      By trents · Posted

      It's easy to forget that it's not only the concentration of gluten in a given food item that's significant but also the total amount of gluten we consume over a period of time. This thing and that thing may meet the gluten-free requirement of not exceeding 20 ppm but if we eat enough of those things in a reasonably short amount of time it can have a cumulative effect because our bodies aren't given enough time to clear the gluten we have already consumed. Just curious. Did you know the fries were wheat breaded when you ate them?
    • SamClaire
      How long can symptoms take to appear?

      By SamClaire · Posted

      Hi! I try to steer clear of dairy and I cut out oats at the same time I did gluten products. It may be that something I had recently that was labeled as gluten-free contained oats. I am just so confused as to why I didn’t react when I know I ate wheat flour (breaded fries) but then reacted to something else 9 days later. Maybe you’re right and that it was the accumulation of things. 
    • trents
      How long can symptoms take to appear?

      By trents · Posted

      Welcome to the forum, @SamClaire! I am reasonably sure that after 9 days any danger of a single gluten exposure reaction would have been long gone. If in fact the reaction you are speaking of is due to gluten, it is more likely a cumulative effect of small amounts of gluten having crept into your diet over time. Perhaps some food product you have been using that was once gluten free is no more. Companies can and do change their formulations over time so it may be wise to take inventory of what is in your cupboard and what your are purchasing and check closely the ingredient labels and the allergen statements. It is also possible that the reaction you mention is caused by something else that resembles a gluten reaction. Are you still consuming oats and dairy?
×
×
  • Create New...