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
Hi Ninja. Thanks for responding. I was taking them with meals. The bottle said to take one with each meal. I decided to try not take any for about 36 hours and then try again. I felt better, but when I tried one more I felt crappy again. I think I'll hold off on them until I have some time at home. That way if I don't feel well I won't have to go anywhere. Hopefully when I try again the nausea won't stick around for long.
I was wondering if I could get some advice/information about these. I was passing some really bad smelling gas so I decided to try some digestive enzymes. I got a brand that's gluten/dairy/soy and corn free (all the "frees" I need). My gas went away, but now I'm sick as a dog. I'm so nauseated I don't want to eat anything. I've read that the enzymes can cause nausea, but this seems extreme. Did anyone else go through this? If so, how long did you feel sick? Any feedback would be greatly appreciated.
Hi Pegleg84. You and I are not so far neighbours. I'm in Kitchener.
I went out to eat for the first time since I first learned about Celiac, which would be about 10 months. I haven't been officially diagnosed yet and need to tell my gastro doc that I'm Celiac next week. Should be interesting. (He didn't do a full Celiac panel and I only had mild villous atrophy so he didn't want to say Celiac. He wanted me to go gluten free for 3 months and see how I was. When I said I wasn't where I wanted to be after three months he said to make it another 6 months. So that's my appointment next week.)
Anyway I went to a restaurant in Chinatown called Hibiscus. They are completely gluten free and vegetarian. I'm not veg, but my daughter has decided to go veg. They were able to accomodate all my problems, gluten/dairy/soy and corn. It was great. I felt like a human again. It was nice to be out socializing, living my life. Ok, it was with a bunch of 16 year olds, but it was still nice. We had a great day in Chinatown and then the ROM for the dinosaur exhibit.
The next day I was back in Toronto. My husband and I were in the north part of town so we stopped by Goodbye Gluten. I had a nice lunch and got some good cabbage rolls for dinner. Also had some amazing biscotti. Then we went to the Canada Blooms show and had a great day.
It was just nice to know that I have these options. Having so many intolerances, I've been afraid to go out anywhere. Parking in downtown TO is a nightmare and carrying food for an entire day gets heavy. So knowing that with a little research and faith there is a way to live life again, is nice.
As for the "wuss" of missing work, don't worry about it. I had to quit my job because I couldn't walk anymore. Didn't know that was all related to Celiac though. It took another 2 years to find that out.
Mushroom were your sublinguals hydroxycobalmin? That form of b12 is known to cause acne. Also methylcobalamin is very sensitive to light and heat. Both (or each) will break down methyl to hydroxy rather quickly. All b12 supplements should be kept below 20C (about 70F) and out of light.
From what I understand those reactions are usually from the preservatives used in the shots.
Pegleg84 thank you so much for this. I've finally accepted that I can't have soy anymore, but I love stirfrys. My daughter has decided she's vegetarian now, so stir frys were my go to meal. I'd do tofu for her and meat for her dad and I. I was wondering how this was going to work. I'm going to look for the coconut aminos today.
Amen to that! I can deal with giving up milk, yogurt, and ice-cream, but cheese?!? That one is so difficult. And sorry to all you vegans out there, but that vegan cheese is NOT the same.
That certainly sounds like a casein issue. I get all of that, minus the sour milk taste, when I have dairy. I just don't have dairy anymore. There are all kinds of milk alternatives on the market now, so I really don't miss it. Cheese on the other hand....
As for my morning coffee I use a coconut creamer. It's specially designed for coffee. It doesn't taste like coconut. There are soy versions also. I can't do soy, so that's why I use the coconut one.
nvsmom beat me to it. I too had ITP and only got an enlarged spleen then. I used to get really sick when my platelets were low. I would start with a tickly throat and then 3 hours later have a fever of 104F, without fail! If she's fighting something that is even mono-esque ask what her platelet count was/is at.
I can't say that my spleen gets enlarged now after a glutening as I don't have one. I definitely get inflammation in other areas when glutened though.
Oh boy do I know about casein intolerance. I gave up dairy about 2 months after gluten. That was in the summer. Over the holidays I mistakenly had some real cheese. I thought the gluten free pasta dish I bought had the vegan cheese. Well I didn't react too badly so I had cheese again the next day, then the next. Christmas I had trifle with mascarpone cheese and whipping cream. (I made it, so I know it was gluten free) By then my gums were inflamed, I was bumping into things again, constant headaches, tinnitus worsened, slurring my words, tingling in my hands worsened, I couldn't sleep and my skin became really itchy. So for me, I'd say it's pretty much like a glutening. It took over 2 weeks to recover. I'm too afraid to try sheep or goat cheese. Maybe after I've had time to forget how bad I felt.
I'm dairy free as well as gluten free. Over the holidays I had cheese and cream. My gums became incredibly inflamed (among a myriad of other problems). It took several days to calm down. Maybe you're having a problem with casein as well?
98 for a platelet count is low, but it's not dangerously low. I had ITP as a kid and my platelets were usually in the teens. NOT FUN!! Anyway, this could all be related to the b12 deficiency you were talking about. I know your blood serum level is over 2000 but that doesn't really mean anything. It's the amount of b12 (both active and nonactive) floating around in your blood. So I want to ask, what type of b12 were you taking? If it was cyanocobalamin it has to be converted to methylcobalamin and/or adenosylcobalamin for our bodies to use it. If your body is unable to convert the b12 it will float around in your blood and do nothing until it is excreted. If you were taking supplements right before testing it will raise your serum level too.
Also you absolutely MUST take folate (methyltetrahydrofolate is best) for b12 to work. They go hand in hand. Avoid folic or folinic acid as they have to be converted to 5-L MTHF for our bodies to use it.
B12 deficiencies can cause the brain fog, dizzy spells and fatigue. So can thyroid issues. You mentioned that these lessened after taking armour (which I'm assuming is the thyroid drug) but came back again. Your thyroid may have leveled out, but the b12 deficiency may still be there.
If b12 is the issue, with serum levels that high you would have what is called a "functional deficiency." Just make sure your supplement is a METHYLcobalamin sublingual. You want to hold that in your mouth for as long as possible, not chew it or slurp it down. And don't forget the MTHF folate. Good luck.
Owlmuse, I don't know when they want to treat your thyroid, but if you have a little time you could try l-carnitine. It's an amino acid and been shown to help with hyperthyroidism. http://www.ncbi.nlm.nih.gov/pubmed/15591013
Good luck. I hope the docs can figure out something less drastic for you.