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Eoe And Celiac?
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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!!!

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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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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.

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

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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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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.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_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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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. 

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    • Hi Anns and welcome   Do you think that I am on the right course to see if I possibly have Celiac?   Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing.   Can this develope later in life ( I'm 46)?   Yes, I think its most common discovered later rather than sooner.   I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis.  All the best  
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    • So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results.  This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to  Hematology.  I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity.   The Hematology Dr also recommend an upper GI.  Do you think that I am on the right course to see if I possibly have Celiac?  Can this develope later in life ( I'm 46)?  I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   ANN
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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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