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

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.

  • 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. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Accuracy of testing concerns

    2. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    3. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

    4. - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    5. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

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

    • Total Members
      133,237
    • Most Online (within 30 mins)
      7,748

    Nancy MacManus
    Newest Member
    Nancy MacManus
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
    • trents
      Welcome to celiac.com, @Teaganwhowantsanexpltion! Joint pain is a well-established symptom of celiac disease. But joint pain may also be caused by other medical problems such as rheumatoid arthritis, chronic fatigue syndrome, etc. Make sure you share these concerns with your physician so that he or she can initiate testing or make referrals to specialists. As someone with celiac disease it is very important that you be consistent with the gluten free diet.
×
×
  • 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.