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Eoe And Celiac?

eoe eosinophlic esophagitis autoimmune disease

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7 replies to this topic

#1 moosemalibu

 
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Posted 19 March 2014 - 09:45 AM

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!!!


  • 0

Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

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#2 mommida

 
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Posted 19 March 2014 - 11:01 AM

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!


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#3 moosemalibu

 
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Posted 19 March 2014 - 11:22 AM

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.


  • 0

Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

Celiac.com - Celiac Disease Board Moderator


#4 mommida

 
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Posted 19 March 2014 - 12:38 PM

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.


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Michigan

#5 KCG91

 
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Posted 19 March 2014 - 03:27 PM

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


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Katie

 

Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


#6 moosemalibu

 
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Posted 19 March 2014 - 03:38 PM

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.


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Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

Celiac.com - Celiac Disease Board Moderator


#7 IrishHeart

 
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Posted 19 March 2014 - 03:57 PM

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?

 

http://www.curecelia...SymptomList.pdf

 

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


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 moosemalibu

 
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Posted 19 March 2014 - 06:07 PM

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. 


  • 0

Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

Celiac.com - Celiac Disease Board Moderator






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