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I get diarrhea about 6 hours later. At this point, now that I've healed for a year, I only get one or two rounds of diarrhea. Then I have constipation (no stool for about a day or two, normal transit time, then very hard stool for a few days after that). The day or two after the glutening I experience low mood: depression and anxiety, that lasts for the duration of the constipation. I also experience brain fog and difficulty with concentration and memory, also for about a week. It's severe enough to impinge on my progress at work.
1. Yes. I remember the most depressed time of my life was on a student exchange trip to Italy, where I ate nothing but pasta and dairy. I was so miserable. I was also miserable traveling to Ireland where we ate lots of soda bread. I thought that I just didn't do well without a lot of veggies in my diet (so I went vegetarian for a time, but was unhappy without meat). I knew I wanted to eat mostly meat and veggies, but I could never figure out how to make that happen; my family ate out at restaurants a lot when I was a kid. I also remember as a teen I had what I called "the mystery disease" where I would sometimes have bouts of diarrhea, which would then clear up when I had my period. I could never figure out what triggered it. Looking back, it's embarrassing that I didn't ever think to get tested for celiac disease, and so didn't get diagnosed until age 29.
2. Yes. I was definitely never into breads and such. I liked cookies, but never cakes, breads, muffins, etc. Even as a kid I preferred veggies and meat, not crackers, pastries, breads, etc. I read a magazine article about the paleo diet when I was 16 and thought it looked great (but back then it was too extreme, eat elk, kind of stuff).
Has anyone tried one of the Ethiopian restaurants or creperies? A number of them claim to have gluten-free injera and crepes, respectively, but I can't figure out if any of them manage to be celiac-safe.
There was another question about this in 2008, but I figured I'd start a new one since that one didn't have any replies and is 4 years old.
I just got back from a trip to Big Bear, CA, and I had some good experiences there.
I ate at Cowboy Express and didn't get sick. I ate the crab legs because it was the safest thing I could think of. They normally don't offer it for lunch, but when I called ahead they told me I could get stuff off their dinner menu, especially if I told them what I wanted ahead of time, so they could get things like baked potatoes (that aren't prepped until dinner) ready to go. On the phone, I was handed off to the manager right away, and both the waitress and the manager knew what celiac disease is. When we got there, the waitress was considerate, and the manager came by to make sure we were happy. There were a couple of downsides, though. When we got to our table there were crumbs on it, so I had to ask them to wipe down the table. And when I got my plate of crab legs, a (breaded) french fry had falled on the plate somehow, getting crumbs on the plate. Since the crabs are in their shells, I figured it was ok, and the manager happened to come by so I asked for a new plate. I didn't get sick, and they were very considerate about the whole thing, so I would definitely eat there again.
Another place I liked was the Tea & Coffee Exchange (right where the 18 turns, at the Village). They offer coconut milk, which made me very happy as I'm dairy intolerant and like to avoid soy milk. I drank there twice and didn't get sick (whereas I get sick at Starbucks). They also had gluten-free cookies from Alternative Baking Company. I am not sure how safe that brand is, but I used to love their regular cookies before I was diagnosed. So if you're able to eat them, you can find them at Tea & Coffee Exchange (at least as of now, June 2012).
Lastly, I wanted to mention that my group ate at Nottinghams and the waitstaff were cool with me bringing my own food to eat.
Hopefully this review is helpful to anyone interested in going to Big Bear. Even though there aren't many places to eat out, there are plenty of grocery stores in town, so I found it very manageable.
I was losing my memory and ability to think. It got to the point where I couldn't read things I needed to read for work. This was still going on 10 months of eating gluten free. Then I started taking methyl-cobalamin (B12), folate, and some other B vitamins (along with the vitamin D I was already taking) and then the brain fog slowly started to lift. It's still not all the way back yet, but I'm completely functional now. I don't know if it was just time (> 10 months on a gluten free diet) or whether I was deficient in B-12 and folate.
I'm about 11 months since diagnosis and eating gluten-free, and I feel like I'm just now getting less fatigued. About a month ago I started supplementing with vitamins D and Bs (especially folate and methylcobalamin), and I feel that has made a huge difference.
The B and D vitamins are common deficiencies. Vitamin D deficiency is found in about 40% of healthy people (defined as less than 20 ng/mL, though I've also heard that even above 20 ng/mL is still too low, and we should shoot for a level of about 40-60 ng/mL). Celiacs will likely have even greater incidence of vitamin D deficiency, on account of poor nutritional uptake, especially for fat-soluble vitamins (according to my gastroenterologist), and the lack of vitamin D from dairy for those of us who can't tolerate casein.
Deficiencies in the B vitamins can be tricky. Most doctors test blood serum levels, which basically only tells you how much you're getting in your diet. Few doctors test values from red blood cells: a better measure of how much you actually have in your cells. According to the Framingham Offspring study, 55% of people are low to deficient in B12. If your uptake is poor, or if you're a poor methylator (hetero- or homozygous for the less-active allele of the MTHFR gene), then you'll have a difficult time getting it from your food and/or converting it to the active, methylated form (for both folate and cobalamin).
So, I'm not sure if it just takes some of us celiacs a long time to heal, or if the key for me was the vitamin supplementation, but it seems like it couldn't hurt to either press your doctor for more/better tests of nutrient deficiencies, or even, to try a week or two of supplementing with the methylated forms of B9 and B12, folate and methylcobalamin, as well as vitamin D, and see how you feel.
I'm sorry to read that so many of you are having the same problems. At least we know that we're not alone, and maybe we can compile a list of avenues to try, based on our collective experiences.
I saw an allergist today (and the allergist has been talking with my gastroenterologist to try to figure out what's going wrong with me). They think most likely the lingering brain fog and fatigue stems from under-treated asthma. I have an albuterol inhaler but I don't always take it. They want me to take fluticasone proprionate (a corticosteroid) inhaler and nose spray regularly for a few months to reduce inflammation in the lungs and sinuses and see if that helps clear things up. Maybe I have some self-perpetuating inflammation that I just need to clear up.
Here's my list of things I've tried, am currently trying, or will try in the future if the current things don't pan out.
Some other things that I've tried and ruled out:
blood sugar regulation problems/hypoglycemia/pre-diabetes hypothyroid/hashimoto's thyroiditis other (true) food allergies (I could still have food intolerances, but nothing they can test for) nutrient deficiencies/anemia (except I haven't had B vitamins tested) cortisol regulation issues/adrenal fatigue trace gluten still in my diet
Things I'm currently testing:
under-treated asthma estrodiol/progesterone ratio (I have a home test kit for hormone levels insufficient vitamin D (I'm supplementing and expect to reach good blood levels in a couple more months)
Things I haven't (yet) tested:
B vitamin deficiencies Other infections (e.g. SIBO, parasites, etc) Fructose malabsorption and other gut irritants
I'll report back if anything pans out, but hopefully this list helps give others ideas for avenues to explore.
I am sensitive to below 10 ppm. I reliably have diarrhea from Lindt 85% and Chocolove dark chocolate. I can have Endangered Species chocolate and Trader Joe's chocolate chips (NOT their pound plus) without getting sick. I also do fine with Taza (the local boston chocolate that is less processed).
Skylark and Golden Girl, have either of you figured out what was causing the brain fog, lack of concentration, fatigue, and mood disturbances?
I've been gluten free for 10 months, since my diagnosis, and while my IBS-style symptoms have improved dramatically, I am still suffering from brain fog, difficulty concentrating, general fatigue, and irritability. My inability to concentrate is interfering with my ability to do my job at work. I just met with my gastroenterologist who wants to do a colonoscopy to check for lymphocytic colitis, and I'm going to meet with an allergist next week to see if there are any other food intolerances I'm missing. I did an elimination diet for a few months, but didn't notice any non-gluten food intolerances when I added foods back in one at a time, but I was pretty focused on the glutening symptoms, so maybe I just missed it.
I'd love to hear if anyone with these issues has figured it out.