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
Where can I buy gluten-free stuff?
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I'm sorry you're feeling poorly. As I read the good advice you already got and your message, I was wondering a couple of things.
1. You mention your very strict schedule that keeps you on track but it says eating decently well but it doesn't say cooking. If you are eating out a lot, that is clearly a place where you could be getting cross contaminated.
2. Do you have a roommate? Maybe he/she is not aware of some of your issues (cooking with flour in the house etc)
3. How do you live on only 6 hours of sleep per night? Maybe for a couple of nights that's enough, but generally speaking people need more sleep than that. Maybe long term sleep deprivation is playing into some of your illness?
Thank you everyone for your replies.
ravenwoodglass: Your advice was helpful I’ll try to avoid items like this which have so many unnecessary and artificial ingredients – they make me feel out of control. A food and symptom diary is a great idea - especially when trying out new brands of foods.
artistsl: Thanks for the tip – I don’t live in the US/UK unfortunately so I won’t be able to purchase this specific brand of kefir. However, I agree that it’s a good idea to try and find another brand which isn’t full of additives. It won’t be a problem.. I’m NCGS as well and I’m very familiar with brain fog and dizziness.. very unpleasant. As for the locust bean gum, I’ll definitely try to avoid it. I don’t think I have an issue with dairy but know that many celiacs/ncgs people do so it’s a good suggestion.
cyclinglady: No, I don’t have an intolerance to corn in general.. but maybe I do have some kind of intolerance to the glucose fructose syrup.. it’s a very artificial and processed ingredient and this is not the first time I’ve found myself reacting in a bad way to an item that includes it.
Jmg: Yes, the unflavoured ones would be safer, I think. I’m almost sure my reaction wasn’t to dairy as such but to one (or more) of the additives. The reason is that I’ve been eating lots of dairy products since I went off gluten and have been ok. The pattern is this (I guess): if it’s a normal dairy product such as a yogurt made of milk/cream + yogurt cultures (+ fruit + sugar), it’s ok. And unflavoured milk and all kinds of ‘real’ cheese are fine, too: mozzarella, cheddar, cottage cheese etc. Once a yogurt/kefir or another milk product includes additives or unnatural ingredients, there seems to be a problem.
You’re right - there are other possible sources of cc.. I try to think about them one by one because it really gets very confusing when there are many possible sources of a glutening/cc.. it’s almost like an investigation. It’s a very good point though, thanks
Feeneyja: Thanks for the suggestion. As I said, for now I’ll probably assume I’m not dairy intolerant but will definitely be wary of it and bear it in mind because many of you guys have pointed it out.
I’m sorry you’re not feeling well and sympathize with the lack of answers. It’s not usually normal to have reduced WBC, no. If I had reduced WBC I would want to make sure it’s not a rheumatoid autoimmune condition, so I might get an ANA and a urinalysis.
Are you taking any medications? Do you have a rash? Family history of autoimmunity?
On the other hand, the joint pain - how active are you every day? With me, though I am older, I find that if I don’t use my muscles, I will feel pain eventually. I know we tend to report what we’ve been eating on these boards, but I also think how much we move is important.
I guess I would be most concerned about the WBC and the shortness of breath. The SOB could be anxiety, but the anxiety could be physiologically based. Or it could be something else. Is there a breakdown of your white blood cells by type?
One of my daughters is milk intolerant. She had a history of mucus and phlegm and I didn't connect it right away. One day while drinking kefir she got a weird sensation in her throat and almost threw up. That happened twice. We cut milk and it has never happened again. The mucus is gone as well as an eye twitch/tick she developed.
So, it may be the casein in milk.
Interesting- thank you for sharing. I saw my ND yesterday and she also suggested that after having been completely cleaned out for my procedures, my body could be trying to adjust. She is having me take a rest from the strong probiotics I was taking, and I'm focusing on eating foods that are more gentle (I tend to eat a lot of raw, very fibrous foods).