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

Is This Unreasonable?


Tasha2004

Recommended Posts

Tasha2004 Contributor

My Mom (80) has been showing signs of accidentally ingesting or coming in contact with wheat/gluten.

The primary care doc didnt believe me when I said they could do a Gliadin IgA or IgG to test for this.

Mom informed me today, she had a round of (refrectory?) sprue several years ago, and needed steroids to clear it up.

I sent the primary care a nice kind letter (even though I am angry) and some articles from here. Also another letter from the Celiac association saying they even run this test on Celiacs at their conventions, so asking for one is no big deal.

The primary sent my Mom to a gastro. Every gastro around here is booked until Fall.

I asked the gastros office, who has a referral and knows my Mom is truly Celiac, to please have the gastro call the primary doctor and discuss running the blood test. They wont do it, they wont even ask her. "your mom is a new patient and we cant do anything unless the primary asks us." I informed them, the primary doesnt get it, and they rudely told me to take my Mom to the ER. Yes, the ER wants us there on a non-emergency when the local ER's cannot handle patients right now.

I am so ticked.

I am a diabetic, with other conditions. I am a huge advocate for my own health and belong to a goodly few support groups. Even my doctors will run a ttg or IgA on me because I showed an elevated IgA and nothing else. They know I know what I am talking about.

I believe these doctors often refuse to talk on the level with the patients (or in my case, the patient's caregiver.) I feel for you all if you have trouble getting help. I really do.

I dont think I was at all out of line asking the Gastro's office to help me out. You know the Gastro would instantly understand the situation, but obviously they cannot be bothered until October.

sheesh.


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

How obnoxious! And who told her she had a "round" of refractory sprue? It was my understanding is that refractory was like, forever. You have to be on steroids forever, right?

Quack. Is there any way to get her to another doctor, perhaps yours?

Tasha2004 Contributor

Chelsea: OOps, sorry I spelled refractory sprue wrong.

No, about 17 years ago my Mom had a round of what I called refractory sprue. I found an aricle on this web site on it, and they said they often had to comb through the patient's diet and often ended up putting on a short round of steroids. That is what happened to my Mom then, and that may be what happened this time.

Mom said it took her a long time to get over it, and she was pretty darn sick. She isnt that ill this time, but it would be nice to have the blood test so we can see if something has crept in again.

You all have such a huge list of things to watch out for, and an 80 yr old can easily (as can anyone) make a mistake and get hidden additives or gluten.

tiredofdoctors Enthusiast

I think that really stinks. I have just had the same type of experience with the neurosurgeon. What a pain in the neck.

I can't believe that you have to wait three months for your mother to see the GI doc. That is not acceptable. Ask to get on a cancellation list . . . then call every day to see if there are any cancellations that day. You'd be surprised when you become a thorn in their hiney how fast your mother gets in . . . . . it works pretty well. Some offices just don't care, but some just want you to stop calling!

Tasha2004 Contributor

Lynne: My Mom had the blood draw for the test or tests yesterday. I wasnt able to go with her, so I dont know which ones they ordered, I think probably IgA.

I must have convinced the doctor when I sent her four pages of documents.

Mom is feeling much much better, so it may have been some incident of eating something that wasnt right.

Thanks for writing!

  • 2 weeks later...
tiredofdoctors Enthusiast

Tasha - I am so glad. It is SO frustrating when you can't get past the front desk, then when you DO, you have difficulty with the doctor listening to you with more than half an ear. Please keep me informed about your mom's condition . . . . I'd like to know about her test results, if that's not intrusive.

Tasha2004 Contributor
Tasha - I am so glad. It is SO frustrating when you can't get past the front desk, then when you DO, you have difficulty with the doctor listening to you with more than half an ear. Please keep me informed about your mom's condition . . . . I'd like to know about her test results, if that's not intrusive.

She just got the results. They did either an IgA or IgG, I dont know which and Mom couldnt find her paper. It was negative. I hope that doesnt make the doctor feel like she ordered the test for no reason. I hope she knows now what to do for the next person.

Mom is doing much better, but feels she truly did eat something wrong somewhere along the line. Thanks for asking!


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



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I'm glad your mom is Okay, but wouldn't it be nice to have some answers? Don't want to say, "Sorry your mom isn't sick", but I was hopeful that the doctor would have delved into this with a little more zeal. Good luck to you . . . and take care of you . . . . Lynne

Tasha2004 Contributor

OH, she does have that visit with her new gastro, in October. So she will get further help, and maybe they can discuss it together.

It could be the gluten was totally out of her system before the blood test too.

I'm teaching a class to my fibromyalgia support group this week on being proactive and self management.

Hee hee, got some practice in already.

tiredofdoctors Enthusiast

That was funny!!!!! Good luck . . . . I'd still pester the heck out of the GI doc's office! Sometimes, it's just a matter of principal. :lol:

ravenwoodglass Mentor
She just got the results. They did either an IgA or IgG, I dont know which and Mom couldnt find her paper. It was negative. I hope that doesnt make the doctor feel like she ordered the test for no reason. I hope she knows now what to do for the next person.

Mom is doing much better, but feels she truly did eat something wrong somewhere along the line. Thanks for asking!

Please make sure she trys the diet anyway. I was tested and relying on blood work cost me many years of misery because of false negative results.

Tasha2004 Contributor

Mom's been on the Celiac diet for over 20 years! But thanks.

Yes, it is scary. Before she was diagnosed she went down to about 65 pounds.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Opinions on my test results/symptoms

    2. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      5

      Vaccines

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

      Opinions on my test results/symptoms

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      5

      Vaccines

    5. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      5

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,841
    • Most Online (within 30 mins)
      7,748

    Alejandra Narciso
    Newest Member
    Alejandra Narciso
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      PS -  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. You mentioned that your bowel movements may be a bit more regular, so this could be another indication of NCGS.    
    • Scott Adams
      You did not mention your age, but depending on how old you are it makes a big difference on how important it is to get a flu vaccine. 
    • Scott Adams
      Your situation is not straightforward, so it’s understandable why you’re seeking clarity. Your elevated thyroid peroxidase antibodies (TPOs) and thyroglobulin levels suggest autoimmune thyroid involvement, possibly Hashimoto’s thyroiditis, even though your thyroid function currently appears normal. The link between autoimmune thyroid disease and celiac disease is well-documented, but your celiac panel results are inconclusive, with only the deamidated gliadin IgA elevated. As you doctor correctly mentioned, this could indicate non-celiac gluten sensitivity (NCGS) rather than celiac disease, especially since you lack classic GI symptoms. However, the absence of improvement after four months gluten-free is notable. While some non-GI symptoms like fatigue and brain fog can take longer to resolve, the lack of progress raises questions about whether gluten is the primary driver of your symptoms. It might be worth revisiting the possibility of a biopsy (after a gluten challenge) to rule out celiac definitively, or exploring other potential contributors, such as nutrient deficiencies, other autoimmune conditions, or even dysautonomia, given your temperature regulation and energy issues. Have you had your thyroid levels retested since going gluten-free? If not, I would do that before resuming a regular gluten diet. It would be interesting to see if there has been any normalization in those levels while on a gluten-free diet.
    • Dawn Meyers
      Yes no gluten in my diet. I get so sick that I have to go to the ER for fluids and medicine. I was diagnosed in 2017 but was told I probably have had it my whole life. (Went to Mayo in 2019 to confirm diagnoses and address all other autommune issues ect.) Also intolerance to sugar alcohols and chicory root. Try to eat clean and stay away from processes foods. 
    • trents
      Dawn, are you diligent with the gluten free diet? When were you diagnosed with celiac disease?
×
×
  • Create New...