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 tried a ketogenic diet last week, and while I did seem to feel a bit more mentally "there", I felt pretty bad otherwise. Especially my heart. It felt like it was beating really forcefully. Not necessarily fast or slow, just a very hard pounding feeling all day long. I also felt feverish and could not sleep at all. Every time I make one symptom better it just seems to make another worse. Getting the following tomorrow:
Insulin, C-Peptide, Cortisol, ACTH, Aldosterone
Just shooting in the dark, but I have to keep trying. Going to ask my GP for a head and abdominal scan next time I see him.
I work at an office with my own desk. I have my own break room with my own refrigerator and microwave. I don't share anything with the other employees. I don't take any supplements. I've been taking a look again at reactive hypoglycemia because my symptoms seem to match pretty well. I've been taking my blood sugar 15 times a day and so far my average is 79, which is inside the normal values of 70-100 so I don't know if that helps. I have noticed that I seem to feel better when it is around 100 though. But that only happens for a short while right after eating, and only if I eat something with carbs. Then, within a few minutes of hitting that level it pluges right back down to the high 70's.
Even though it isn't really indicated by my blood sugar level, I'm going to order some blood tests for Monday. Insulin, C-peptide, am cortisol and acth. Maybe I'll get lucky and something will point to an insulinoma that produces just enough to make me feel bad or a pituitary/adrenal problem.
About 9 months after I started feeling bad I went on a restricted diet where I was absolutely 100% sure everything I ate was gluten, egg, soy, bean and dairy free. I prepared only raw ingredients and I only ate things which I had overseen from purchase to stomach. This lasted about 3 months. During this time I did not experience a lessening of any of my symptoms. I am very fastidious about everything being gluten free and I rarely eat out. I personally read the ingredients on everything that is prepared for me, even if I don't do the preparing. I am almost 100% certain that my symptoms are due to something else other than gluten. I did not take any supplements that could have been glutening me, and the only other thing I put in my mouth is my toothbrush. I've been using crest for years. I even switched to colgate and aquafresh to see if that would make a difference.
This is so frustrating. My 82 year old grandfather has more independence than I do. He is well enough to take out his camper by himself and go camping for a weekend alone. I don't feel well enough to go to the store alone.
Just on the random chance this would help anyone, I always seem to feel the worst at the same time of day. Every day around 4:30 I start feeling worse. My finger tips shrivel, and I start having trouble breathing. This lasts until about 8:00 pm at which time it gets a bit better. On a scale of 1 to 10, 1 being the lowest, I would say I feel about a 5 out of 10 for all other hours of the day and a 1 out of 10 from 4:30 to 8. I have thought that the 4:30 feeling bad time could be a correlation to the food I eat at lunch, but I've varied my diet and it doesn't matter. It could be a result of just food itself, but I'm not sure what condition would cause me to react so badly to food several hours later that isn't related to allergies.
I feel bad enough that I would gladly give everything I own for one week of feeling well.
I originally discovered I had celiac disease after reading about it on the internet in 2006. My main symptoms were brain fog, myscle twitches, cloudy urine, and severe constipation. For 4 years I felt fantastic. It was like a miracle and I was so happy to have my life back. Fast forward to 2010.
I start noticing that I'm becoming more constipated again. Then my urine becomes cloudy again. By this, I mean that when it hits the bowl, I can see tiny particles in the urine spreading out through the bowl. When I'm healthy, the mixture looks more homogenous and I can't identify particles. Next I start getting anxiety attacks and really bad brain fog. Now I've been getting worse and worse. I have all of these symptoms and more. My fingertips constantly look shriveled and I think I'm losing some of my sense of smell. I'm thirsty all of the time. One of my eyelids is swollen or just droopy all the time. I have brain fog almost all of the time, and I have to plan my sentences out before I start talking, otherwise I have to throw in several "uh..." pauses into them. The most crippling problems are the anxiety and the brain fog.
I was a highly intelligent person. I've become an idiot. It is breaking my heart because I have to be told how to do something several times before I catch on for even simple tasks. I'm a poor shadow of what I once was. I used to be into thrill seeking (scuba, skydiving, etc) and now I feel so bad I'm scared to even go to the store by myself.
If anyone has any ideas, I'll gladly listen. I've done so much testing and I never find out anything. I had an upper endo and coloscopy. Nothing found, no sign of celiac. Just a few red patches that looked like irritation. Doc said not a big deal. I got tested for delayed food sensitivities and eliminated all of the positive ones for two months and I didn't feel any better. Tested high for pinto beans, egg, milk, soy, red #40, and white fish. Then, I thought for sure it was hypothyroid since my symptoms match up so well, but my tsh is constantly at 3.0 and my free t4 is at the upper end of the range. My free t3 is mid range or higher. No thyroid antibodies. No big problems indicated there. I've had my cortisol tested and it was fine, albeit on the lower end of normal for the noon and afternoon readings. B12 seems good (upper 600's). No big red flags on my blood tests. Vitamind D is a bit low, but too much vitamin d makes my heart feel funny. My vitamin D 1,25 (calcitriol) always seems high. It does not have a reference interval so I can't be sure, but I've read that 1,25 is high in inflammatory diseases. Ferritin is just a bit high, cholesterol a tad high. Testosterone normal. No candida antibodies. I've tested my blood sugar and it's almost always at 89. A handful of times (out of maybe 50 tests) it was in the 120's and one time at 130. Nothing too alarming. Lowest I've seen it was 70. My A1C was right in the healthy range. Ruled out parathyroid disease.