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      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 Celiac.com's FREE weekly eNewsletter   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
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grgygrrl

EoE AND Celiac, or EoE Or Celiac?

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Do EoE and celiac disease generally come in tandem?  Does having one necessarily mean having the other? Had an EGD today expecting to have an entirely different outcome.  A short history: Lap Band placed 10 yrs ago with a weight loss of 173-ish lbs. Am a 47 y/o F experiencing uncontrolled vomiting, several times a day, and abnormal, unwanted continued weight loss. Too thin IMO, at 133. Experience random and lengthy bouts of burning (scalding,  really)  mouth syndrome (which I believe is a diagnosis recognized only by those experiencing it, and has not an official diagnosis of anything... yet). At the urging of my children and my parents alike, all of whom see me wasting away before their very eyes, and concerned for my well-being (if not my life),  I began looking for answers. Assuming my answer would sound something like this... "let's remove your lap band immediately". Problem solved.  Not so.  Lap and in perfect condition and placement, and not the cause of any restriction whatsoever, as all fluid was removed 3 yrs ago. Food from over 12 hours previously ingested was still hanging out in the lower portion of my esophagus.  Dr. susoects a high concentration of eosinophils and EoE and/or celiac disease is also suspected.  4 samples have been sent for biopsy.  I knew nothing of either of these two diseases until 2 hours ago, and I am, at best, confused.  Lots of info to digest. Should I begin eliminating wheat, dairy, eggs... Etc. prior to biopsy results? Or wait for Dr. orders? History of Grave's (mom), and Hashimoto's (sister). I've had asthma and chronic bronchitis and pneumonia since childhood. Any  and all info/help/suggestions are more than welcome. Also, feel free to let me know if I'm way off base and prematurely/overly concerned.  I'd be ok with that too, as I tend to overthink things.   

Thanks! 

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Hello and welcome :)

You've found a good site for advice and support. 

Google suggests there is a link between EoE and Celiac, but at the moment that seems to be as much as anyone knows:

https://www.emaxhealth.com/12410/celiac-disease-increases-risk-eosinophilic-esophagitis

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-96

Although it's not true that having one means you have the other. 

You may want to read this thread for the experiences and ideas of others here who have experienced Burning Mouth Syndrome:

https://www.celiac.com/gluten-free/topic/106704-burning-sensation-in-mouth/

There were lots more gluten and BMS articles, so if a direct link hasn't been made, there's food for thought there along with some interesting thoughts on B and Iron deficiencies and possible additional food intolerances.

2 hours ago, grgygrrl said:

Should I begin eliminating wheat, dairy, eggs... Etc. prior to biopsy results?

No please don't. If the biopsy is inconclusive they may want a second one or further blood tests (you don't mention if they already did these?). Once you eliminate gluten from your diet these tests are inaccurate. That's not to say you shouldn't trial the diet, just make sure with your doctor you only do so once tests are complete. I'd add that even if you test negative you have nothing to lose from trialling a gluten free diet and as someone who did test negative I highly recommend you do, but only once testing is done!

In the meantime, start a food diary. Log what you eat, when, and how you feel. Just short notes but make it a habit and try to capture everything you put in your mouth.  Build a record that you can use to find patterns. Maybe a trigger for the BMS will become apparent over time.

Best of luck :)

 

 

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Hi, 

My 24 year old was diagnosed with Celiac Disease just about 4 years ago. She began having a hard time swallowing food and experiencing lots of acid so she had an Endoscopy last year and was positive for EoE. She had another allergy test done just after and found out she is also allergic to yeast. So we add that to her list of things she can’t eat along with shrimp and sesame seeds. We found a great allergist since she has asthma and horrible sinus allergies who was able to work with her GI doctor. Together they have her on a few different medications that seem to be really helping. She still has some dairy, like cheese on her tacos, but not much and stays away from yeast almost entirely. So being a Celiac definitely intertwines with other health issues. Keeping a food diary will be a big help in pin pointing what triggers your EoE. 

Once you get a final diagnosis there are wonderful people on this forum to help guide you through this wonderful journey of living with Celiac Disease.  

Good luck ☺️

Edited by Zodi1993
Sensitive matter not wanting to share on social media
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IT could be many things, I find I have a gastric dumping issue with some meals, I know some food intolerance I have will trigger it. I know If I do not start my day with a big glass of hot liquid and magnesium and have it before a meal, that meal will sit it my stomach till it makes me sick and vomit it up 4-6 hours later. I know for me meats do not digest. they just sit in my stomach til I vomit them back up. Animal fats and certain oils do not digest same thing. just float in my stomach til I puke them up when they start going rancid in my stomach 4-6 hours later.

I find digestive enzymes are a MUST. I take 2-4 times the suggested dosing, and even extra bromine with heavy protein meals.

There is another issue where some people have weak stomach acid there for the stomach does not digest food nor dump it. If you have this issue then betaine hcl will help this. For me it was not my acid but a enzyme issue.

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On 10/17/2017 at 9:00 PM, grgygrrl said:

Do EoE and celiac disease generally come in tandem?  Does having one necessarily mean having the other? Had an EGD today expecting to have an entirely different outcome.  A short history: Lap Band placed 10 yrs ago with a weight loss of 173-ish lbs. Am a 47 y/o F experiencing uncontrolled vomiting, several times a day, and abnormal, unwanted continued weight loss. Too thin IMO, at 133. Experience random and lengthy bouts of burning (scalding,  really)  mouth syndrome (which I believe is a diagnosis recognized only by those experiencing it, and has not an official diagnosis of anything... yet). At the urging of my children and my parents alike, all of whom see me wasting away before their very eyes, and concerned for my well-being (if not my life),  I began looking for answers. Assuming my answer would sound something like this... "let's remove your lap band immediately". Problem solved.  Not so.  Lap and in perfect condition and placement, and not the cause of any restriction whatsoever, as all fluid was removed 3 yrs ago. Food from over 12 hours previously ingested was still hanging out in the lower portion of my esophagus.  Dr. susoects a high concentration of eosinophils and EoE and/or celiac disease is also suspected.  4 samples have been sent for biopsy.  I knew nothing of either of these two diseases until 2 hours ago, and I am, at best, confused.  Lots of info to digest. Should I begin eliminating wheat, dairy, eggs... Etc. prior to biopsy results? Or wait for Dr. orders? History of Grave's (mom), and Hashimoto's (sister). I've had asthma and chronic bronchitis and pneumonia since childhood. Any  and all info/help/suggestions are more than welcome. Also, feel free to let me know if I'm way off base and prematurely/overly concerned.  I'd be ok with that too, as I tend to overthink things.   

Thanks! 

I myself also have EOE and Celiac. Before my diagnoses I was getting bread and meat stuck in my esophogus. It wouldn’t pass. It got so bad when I ate a ribeye. It sat in the esophogus for 4 hours. Eventually I was able to vomit it up. It was followed by blood. I then went for a biopsy a month later and was diagnosed.

I cut out most of the gluten out of my diet. But I also had to go see an allergy doctor and I have a soy and nut allergy. He explained that the restriction in the esophogus is a delayed reaction to either the soy, gluten, or nuts. So I try to avoid those foods as much as possible. I carry an epi pen with me when I go out to eat. 

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grygygrrl,

On 10/17/2017 at 11:00 PM, grgygrrl said:

Do EoE and celiac disease generally come in tandem?

EoE as I understand it is a realitively newer diagnosis terminology.

anything medical "itis" is inflamation so EoE might of been called esophagitis or an inlammed esophagus 20+ years ago but is EoE is now a distinct diagnosis.

Knitty Kitty first posted this research link but it stuck with me.

https://www.ncbi.nlm.nih.gov/pubmed/2084620

try taking B-3 presumably because it is the cause of Pellagra.  People who had an inflammed esophagus (itis) got better from treating it with vitamin b-3. though they didn't mention the vitamin by name in the abstract.  If it the first signs of Pellagra (EoE) then taking Niacianamide will help it.

here is the full abstract.

Nutr Cancer. 1990;14(3-4):233-8.

Pathological effects of pellagra on the esophagus.

Segal I1, Hale M, Demetriou A, Mohamed AE.

Author information

Abstract

This study determined the pathological effects of niacin/tryptophan deficiency on the esophagus. Nine patients with severe clinical pellagra and 31 age- and sex-matched controls were assessed. All pellagrins had an esophagitis varying from severe to mild. The esophagitis improved in five patients following six to seven days of vitamin therapy. The relationship between vitamin deficiencies and esophageal cancer is discussed.

PMID:

2084620

DOI:

10.1080/01635589009514098

[Indexed for MEDLINE]

I have a friend who had EoE and Iron Deficiency Anemia and they are now better from both the EoE and their Iron deficiency Anemia . . .but haven't stopped the PPI's they where taking for the EoE yet afraid of what the doctor might say. . . but I think I might have convinced them to give it a try to cycle off of them soon.  They (PPI's) can be hard to stop once started because they have a strong rebound effect.

see chris kresser's article on this topic.

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

***this is not medical advice but I Hope it is  helpful.

posterboy,

 

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