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.
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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
His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......
With his bloods coming back that high there is no chance he is not celiac. The gene test is not diagnostic. There are rare cases of celiacs that don't have one of the two most common genes. You may want to go ahead and get the biopsy done if you are choosing to do one. Some doctors will diagnose based on relief of symptoms and decrease in antibodies after the diet has been strictly followed. Do keep in mind that intestinal damage can be patchy and be missed. He will need the diet even if the biopsy is negative. Do keep him on gluten until the biopsy is done then take him gluten free. You don't have to wait on the results. Good to hear that you are planning on testing your daughter and don't forget testing on yourself and their father if it hasn't already been done.
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 ☺️
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:
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:
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.
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
Funny you should ask about Lectins because I am currently recovering from a recent run in with some pinto beans. After reading soaking longer than overnight helps break down those Lectins, I soaked them for twenty-four hours Then I cooked the spots off them! And still, they have wreaked havoc in my tummy. Ugh!
So while recuperating, I did some research. While cooking can break down some of the lectins, the only way to get rid of them completely is to cook them in a pressure cooker.
I was surprised to find that Lectins are histamine releasers! Lectins make Mast cells release all their histamine. Aha!
The red wine and balsamic vinegars and the bottled lemon juice are all high in Sulfites. Sulfites are histamine releasers, too. Apple cider vinegar is lower in Sulfites.
Lectins stimulate the autoimmune system:
More on Lectins and autoimmune diseases:
And for Enis' affinity for chocolate nibs...(as well as my own)...
Chocolate is a source of copper. Copper deficiency causes neuropathy.
My neuropathy has gotten worse recently and my chocolate cravings have increased. Hmmmm......
More info on copper
So...I'm wondering if I've neglected taking copper along with my calcium and magnesium. I'm starting supplementing this week.
Is copper in any of your protein powders, Enis?
I hope this helps.