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

Why Do I Have To Educate My Doctors?!


wmramsel

Recommended Posts

wmramsel Explorer

AAAAARRRRRRGGGHHHH!!  *Sigh*  I had to get that out.  Still waiting on the immunofluorescence studies of the suspected DH- I explain to the derm's office that if it comes back positive we don't have to do the scope.....

 

She says, "Well don't you think they need to go ahead and do the scope to see what is going on?"

 

 

NO.  No, I don't.  The scope is diagnostic, it doesn't alter treatment!  I proceed to explain that we aren't trying to "find out what is gong on" if we already know what is going on by the positive DH.  That we aren't trying to determine treatment with the scope- there is NO treatment, just a gluten-free diet.  I am not going to put my daughter through a scope if I.don't.have.to.  And who are you to question my judgement for my daughter on something you have proven to me before you don't know anything about????  If the DH comes back positive, we know what Celiac disease does- we don't need to scope her intestines to "see what is going on."  We already KNOW what is going on.  The blood work for the CBC and Anemia is going to tell us "what is going on."

 

**breathe**

 

Off to google immunofluorescence studies.....


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

It's hard. BTDT.  I was the one who had to push for an Endo to truly examine thyroid issues after 2 years of elevated tTG's after going gluten-free.  Once on thyroid meds, his next tTG's were (finally) normal. 

 

3 GI's wouldn't listen to me about the "little bit off" TSH levels being more than a "little" off since changes have been made to that scale and they little was WAY off. 

 

 

It sticks. I try and remind myself that a good Dr. isn't one who knows everything but one who is willing to LISTEN to you as a parent and consumer to help determine the best options.

 

Hang in there. It's a bumpy road for sure but hopefully you'll have your answers very shortly!

Greebo115 Rookie

I feel your frustration....bearing in mind I am stiil mind-fogged after a cc issue.....I would like to suggest that you donate your "spare" endo to the person at the derm's office, so that she can "see what's going on"!

wmramsel Explorer

It's hard. BTDT.  I was the one who had to push for an Endo to truly examine thyroid issues after 2 years of elevated tTG's after going gluten-free.  Once on thyroid meds, his next tTG's were (finally) normal. 

 

3 GI's wouldn't listen to me about the "little bit off" TSH levels being more than a "little" off since changes have been made to that scale and they little was WAY off. 

 

 

It sticks. I try and remind myself that a good Dr. isn't one who knows everything but one who is willing to LISTEN to you as a parent and consumer to help determine the best options.

 

Hang in there. It's a bumpy road for sure but hopefully you'll have your answers very shortly!

 

BTDT?

 

I am trying to remember that they have been good about listening to me and then trying to find out the best way to do things.  The comments people make get under my skin right now.  I KNOW that I'm being sensitive to it, which is why I come over here and post it where people will understand what we are trying to do, and why the comments agitate me.  I just LOVE (note the sarcasm) how people think they can second guess/question what I feel is the best course of action for my daughter.  Grrrrrr.....

 

 

 

Hehe, Greebo, I'll suggest that to her next time.....

justa Newbie

disregard.

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.