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

moosemalibu

Recommended Posts

moosemalibu Collaborator

No one besides me has been checked or diagnosed with Celiac's Disease. My mother has hypothyroid (poorly managed-not sure if it's Hashi or not) and EoE (eosinophilic esophagitis) also poorly managed. She has had to have her esophagus dilated 3x now. It is ridiculous that the only therapy that they have offered is steroids and acid reflux medication. I *finally* convinced her to get tested for Celiac Disease (I have told everyone in my immediate family to be screened). She has an appointment with her gastroenterologist next Tuesday.  I told her to request a Celiac Panel to check her antibodies. Hopefully we can get to the root of this issue. She has had other signalments of celiac disease as well including: headaches, hair loss, skin rashes, extreme fatigue, nerve issues, weight gain/bloat, constipation.

 

If it is not gluten that is her trigger, I sincerely hope she starts a dietary elimination trial starting with dairy products.

 

Is there anything else I need to tell her or have her request of her doctor next week? Also - unless her doctor specifically tells her to stop eating gluten she won't.. and she won't listen to me. She is stubborn stubborn stubborn!!!


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

My daughter was diagnosed with EoE years after the Celiac diagnoses.  There is now a proven connection between Celiac and EoE.  (in fact all new cases of EE are supposed to be screened for Celiac)

 

As for EoE management, patients should try an elimination diet.  (Usually all top 8 allergens and peas~ the usual suspects first)  Brands of food that might be helpful through this Cherrybrook Farms, Namaste, and Enjoy Life. 

 

This took about a year to go through in my household.  (6 year old stayed on this diet she can too! )

 

I have to run, but feel free to PM me or ask any questions about dealing with Celiac and EE!

moosemalibu Collaborator

My daughter was diagnosed with EoE years after the Celiac diagnoses.  There is now a proven connection between Celiac and EoE.  (in fact all new cases of EE are supposed to be screened for Celiac)

 

As for EoE management, patients should try an elimination diet.  (Usually all top 8 allergens and peas~ the usual suspects first)  Brands of food that might be helpful through this Cherrybrook Farms, Namaste, and Enjoy Life. 

 

This took about a year to go through in my household.  (6 year old stayed on this diet she can too! )

 

I have to run, but feel free to PM me or ask any questions about dealing with Celiac and EE!

 

 

Thank you for your reply! I am curious - how did you start the elimination diet? All major allergens eliminated at once and then added back in after how long? I assume you would do one addition or removal at a time.

mommida Enthusiast

Removed all at once.  A follow up endoscopy when she was feeling better.  A challenge in simplest form about a teaspoon's amount for 3 days (wait 12 days)

 

I do want you to know she does not take steroids or Prevacid for treatment, she just avoids foods that were eliminated.  She has problems late summer / early fall showing an airborne allergen connection.

KCG91 Enthusiast

Well done for persuading her to get tested! Want to have a word with mine next??

moosemalibu Collaborator

Well done for persuading her to get tested! Want to have a word with mine next??

haha It only took 6 months! Keep working on your mom.

IrishHeart Veteran

Your mom's doctor is the one to appeal to to get her to stop the madness.. ;)

 

Let's look at the facts:

 

Celiac is hereditary. You got the gene from someone. (check!)

Celiac centers list people who should be tested as (1) those with thyroid disease.  (check!)

(2) those with immediate family members with celiac (check!)

EE  is listed as a celiac symptom. (check!)

All her symptoms are celiac-related. (check!)

 

If she is like my family members, she is just burying her head in the sand.

 

My Mom was the only one who went gluten-free after my DX....she read the info I sent and that was it. She is 87 and feels fantastic.

 

You did all you could. honey....it's up to your Mom now. 

 

Print out this list and give it to her for her doctor?

 

Open Original Shared Link

 

Who should be tested for celiac disease?

Those who fall into the following categories should be tested for celiac disease:

  • Children older than 3 and adults who are 1st-degree relatives of someone with celiac disease
  • Persistent miscarriages or infertility
  • Type I Diabetes Mellitus
  • Autoimmune Thyroid Disease
  • Irritable Bowel Syndrome (IBS)
  • Asthma
  • Multiple Sclerosis
  • Primary Biliary Cirrhosis
  • Down Syndrome
  • Turner Syndrome
  • William’s Syndrome
  • Hashimoto’s Syndrome
  • Graves Disease

There are many other symptoms that could indicate the presence of celiac disease, including persistent gastrointestinal symptoms, bone density problems, dental enamel hypoplasia, fatigue and others


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

Thank you Irish. I know I have done all I can but it's my mom!! I can't give up on her. I'm hoping we get answers for her. Thanks for your kind words. I already gave her an email full of things from University of Chicago to take to her doctor. I think she's finally ready... but if the doctor doesn't back the research up I am going to rip her a new one! Her colleague was the one that diagnosed me so I hope she and him can communicate, too. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748

    kyle68j
    Newest Member
    kyle68j
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...