• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Eoe And Celiac?
0

8 posts in this topic

Recommended Posts

moosemalibu    48

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!!!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


mommida    158

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!

Share this post


Link to post
Share on other sites
moosemalibu    48

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.

Share this post


Link to post
Share on other sites
mommida    158

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.

Share this post


Link to post
Share on other sites
KCG91    17

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

Share this post


Link to post
Share on other sites
Ads by Google:


moosemalibu    48

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.

Share this post


Link to post
Share on other sites
IrishHeart    1,634

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

Share this post


Link to post
Share on other sites


Ads by Google:


moosemalibu    48

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. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,913
    • Total Posts
      938,655
  • Member Statistics

    • Total Members
      65,838
    • Most Online
      3,093

    Newest Member
    Teresa Love
    Joined
  • Popular Now

  • Topics

  • Posts

    • Take the opportunity to get healthy!    Nuts, seeds, fruits, take these as snacks on your drive. I personally love almonds and pumpkin seeds. Or bananas and blueberries. Or if you need protein there's lots of gluten free protein bars at gas stations. I like to pack hard boiled eggs too.  One thing I do for long trips is I make sort of a granola/protein bar at home and take it with me.    1 cup oats 3 eggs two spoonfuls of peanut butter some cinnamon and a banana.   mash it all together and bake it like a cake for about 20 minutes. Chop em up into little bars and bag em for your trip. just get creative and try new things! 
    • I totally understand.    Ive noticed the same thing when I started really ramping up my fitness program.    To start, cut out the 30 day challenges. If your serious about fitness, you will incorporate it as a normal entity of life. We already have compromised immune systems so putting sudden outbursts (or challenges) of stress on it will only make you more susceptible to pathogens and ultimately, get you sick.    Take a week, only stretch, light cardio, very light strength training, and lots of rest. Next week, add a little more. Show your body that you can handle it, but do it push it by any means. This new training regime is forever, it's your lifestyle. Take it easy, and play it smart. Slowly add more intense training over time... slowly. Get to a point where you feel your nutrition and fitness needs are being satisfied, and you're productively making differences.   i personally work out 3-4 days a week. But if I go too hard, I get sick. Then I get frustrated that I can't exercise, I work out anyway, and get even more sick. It's just not smart. So I stopped that. I have respect for my immune system and its limits. I took it very slow, and increased my intensity over time. Now I'm at that golden point in my life where everything is balanced. Progress (in terms of personal aesthetics for myself and my interests) is slow, but it's progress. And it's a hell of a lot better than the go hard and get sick cycle.   Best of luck to you friend! I'm sure you will find your way! Learn your body. Know that you are strong, you are powerful, you just have to play it smart. 
    • Yes^, usually if you tell them about celiac, they know. Almost all nurses know what celiac is. If not, tell them what you can and can't consume. There is no such thing as gluten in IV. They always have fruits and juices at hospitals, you can ask for those. Staff in an ER, will always be very kind and helpful, as long as you are kind and respectful to them. I've noticed nurses are just about the best people in the world if you let them know how serious you are about something. As for medications, ask the physician or doctor what the medication is. See if it's diluted with anything. If either of you are unsure, look up the medication online before you take it. You can almost always find an answer. Besides, nowadays it's extremely rare to find gluten in prescribed medication because of how strict pharmaceutical companies have become on allergies and intolerances. 
    • A ketogenic diet is good if you are trying to lose weight, lower insulin levels, fight diabetes, lower blood sugar, etc. . But I'm 20 years old, 5'9 165lbs, that's not healthy for me. I am extremely active and need carbohydrates. In fact I definitely need more because I am lower than 12% body fat for sure. Also, if I remember, ketoacidocis is practically what the ketogenic diet induces, which isn't a normal body function. it's practically tricking your body to think it's starving, which for some, is a good thing. Not for all. It's like taking cold showers, they're good because they can boost and improve muscle recovery, but it does so by putting stress on your nervous system. Our bodies can handle being put into shock, they can bring out helpful chemicals in our bodies, yet they're not necessarily healthy. Yet, if you truly believe this is improving the way you live then who am I to tell you it's wrong.      And yes, I am still playing the game of trying to find the golden number of hours on sleep. I read about sleep cycles and I'm going to try to make it either 6 or 7.5 on the dot.    Nightsky, what carbs would I eat? Am I allowed any type of rice if I'm grain free? I eat lots of potatoes but sometimes I feel it's too much. I cook all the time and eat about 90% whole foods  with the exception of peanut butter and ground beef. 
    • I pretty much do all of that with the exception of parchment paper. I tried telling them about the loose flower and they look at me like I'm being some controlling a**hole. I'm too poor to afford extra paper towels and parchment paper. I can't seem to get them to understand how serious it is. I don't want to ruin everyone's day because of my disease. I can't use the ice machine because they put their hands in it, and when I tell them to be careful they forget. They've used my pans and silverware so I just end up giving them my pans and buying new ones. I am just going to accept that the next x-amount of years are just going to suck and there's nothing I can do. I just feel like I am being treated unfairly by the world. I  steal from grocery stores because I feel like they're robbing me with extremely expensive prices on food that I can eat. I have no shame whatsoever taking things when I can.  It sucks and there's just about nothing I can do. I am going to accept it, work hard in school and finally have my own gluten free household.  Im starting to get sick of free food being everywhere, and I can't have anything. My work always buys everyone lunch or dinner. And I can never eat anything because there's no safe local restaurants. I don't care about eating the food, I have no desire to eat gluten food at all, I just feel like everyone around me gets paid extra (in food because we're poor college students) and I'm left out, starving, eating canned tuna and canned beans. Can I at least get a raise since I can't eat the food?? And don't get me started on the socials. Last time, my work had Olive Garden, and everyone was running around with breadsticks trying to shake my hand. Probably washed my hands about a hundred times and still got sick that night.   PS I just kissed a girl the other night who definitely drank a beer so I'm dying from that as of now. (She lied about drinking beer). I know, I'm a mess.    So like I said you are all very kind and helpful, I will take your advice and do my best to minimize my ingestion of gluten (I feel like I'm starting to become neurotic because of it). And I will continue to accept the suck, with the dream of one day being completely isolated from everyone where I can live in gluten free peace. I'm just physically not meant to be a normal human being.  
  • Upcoming Events