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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have to assume your son was tested for Eosinophilic Gastrointestinal Disorders (EGID). The doctor would have to order the testing from the pathologist on the samples from the endoscopy. The number of eosinophils (white blood cells usually reserved for fighting parasites ~ as there is a small spear like part of the cell to attack foreign bodies) My daughter was diagnosed with both Celiac and Eosinophilic Esophagitis (EE) and the symptoms are very similar. (but my daughter definitely was vomiting up to 5 times a day) Gluten can be a "trigger" for EE. Part of the treatment is to go on an elimination diet to determine what the triggers are. The elimination diet is the "usual suspects"/ top 8 allergens (which you are already doing gluten free and dairy free) and peas. If the "triggers" are not discovered, the patient usually ends up on a feeding tube. Look through your testing results/reports. If you have any scoping pictures, what are the notations?
Keep a food journal. Include your activities to find a possible airborne allergen, like horse back riding. If you are trying a new food, like the soy milk, small amounts~ in pure form~ for 3 days as a challenge. Keep note of your reactions, symptoms, and B.M.s. I don't really have much faith in allergy testing, but it may be something for you to consider.
If you are having excessive bruising with no explanation from deficiencies, please go back in for further testing. Or at least further explanation of the values of the test results. As an example (some what bogus because I can't remember the true numbers) vitamin B12- patient result 500- normal range 500 ~ 1500. Celiac savvy doctor gave a vitamin B12 shot as a result of test result in the normal range but, low.
Did you get your thyroid tested for Hashimoto's thyroiditis? It is harder to get diagnosed as some of the test results come back in "normal" ranges, if the doctor did not order the tests for the auto immune disease. I was diagnosed with Hashimoto's before going gluten free. I did have to adjust the medication level to a lower dose, as my get was absorbing better. None of us are real doctors so please get your medication levels evaluated by your doctor and do not start any supplements without medical guidance. I also suggest you get you vitamin and mineral levels tested. Celiacs can be deficient in so many nutrients. i.e. Vitamin B 12 deficiency can have anxiety as a symptom. Most "silent" Celiacs get diagnosed from severe anemia. Most of the gluten free food substitutions are not vitamin and nutrient fortified like the gluten counterparts you were eating. Discuss with your doctor about a gluten free vitamin supplement. The bold type is part of the new system bugs. I couldn't get it to turn off after an accidental bump.
Dried figs ~ serving size is about 4 figs 1/4 of a cup, 110 calories, 0 fat, cholesterol, sodium 240 mg potassium, 26grams total carbs 5 grams of fiber, SUGARS 20 grams The higher amount of potassium with 6% of daily value magnesium with fiber can have a laxative effect. I'm not sure if that will be able to work with your diet.
I should also add that eosinophilic disorders can be anywhere along the GI tract. Eosinophilic Gastro intestinal Disorders (EGID) As I watched my daughter suffer before diagnoses, "D" is also a symptom for Eosinphilic Esophagitis. I hope recovery is going well. Were any Schatzi rings, furrowing, or eosinophils found during the scope?
Gluten and the top 8 allergens are the more complex protein chains for the body to break down and digest. If the body is already stressed, these foods are possibly just adding more stress to the system.
It is not fully understood why a gluten free diet is helping many individuals with auto immune diseases (even some mental disorders).
Can you start looking into more homeopathic remedies? Any research on medical marijuana?, such as the oil that can have the chemical compound removed that causes the "high" ?
I know someone using it for the joint pain from cancer treatment. It seems to be working well for the joint pain and with chemo therapy the tumors have been shrinking. Just an idea to discuss with your doctor.
If gluten is suspected to be a trigger for Eosinophilic Esophagitis, one week prior exposure might give a positive result. Once acitivated, Eosinophils can remain active for 12 days destroying normal tissue. Samples will have to be tested specifically for eosinophils with red dye by a pathologist. Most cases of EE are diagnosed during late summer early fall because airborne allergies also play a part in EE.
Please discuss this with the doctor if this is what the gluten challenge was for. (As adults require a higher count of eosinophils for diagnoses than children do and there was very limited gluten exposure.)
I just want to reassure you moms.
My daughter was diagnosed with "probable" Celiac when she was 16 months old. (She was too sick for the endoscopy, One positive on the Celiac panel, positive for both DQ2 and DQ8 genes) She went gluten free and her health improved and she was growing.
The fall she was turning 6 everything went bad. It seemed like glutening symptoms but worse. She was getting pretty tiny again and was still wearing stretchy 2T shorts under her uniform romper. She was diagnosed with Eosinophilic Esoophagitis and was put on an elimination diet for all top 8 allergens including peas. She wouldn't drink the amino formula. I don't know if you can really understand the panic of trying to feed her enough calories and nutritients let alone, but keep her growing too.
As soon as she healed, she was growing again! She is 12 years old and taller than me. In fact she is 5' 4" (average adult female height)
Just focus on a healthy gluten free diet and let your child bloom into their body.
The general thinking: People can have a gene associated with Celiac. DQ2 and DQ8 are the most recognized Celiac genes. (Not the only genes associated with Celiac.)
Something has to "trigger" the immune system to start attacking healthy tissue. Any illness, or stress can be a possible trigger. EBV has been mentioned by quite a few posters here. But honestly, you can make yourself crazy trying to figure out what triggered Celiac. If you have it, you have it and it would be more proactive to concentrate on a healthy gluten free diet.
By the way, your dad should be tested (at least if he is anemic) . Men can be "silent Celiac" (not really having stomach upset symptoms, but still suffering vitamin defiencies). Female hormones tend to make symptoms worse.
There is an add on the side bar explaining the gluten free cheerios. The oats are sifted to separate wheat, rye, and barley out. The finished product has then been tested to be labeled gluten free.
I will try them. I do have some problems digesting oats, because I have not been eating them for YEARS.