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 spent the first two months after my diagnosis using black pepper and baking soda that "could contain traces of wheat". I felt like a complete idiot when I discovered it, after thinking I was being so careful reading lables... and wondering why I was still having setbacks. I already had those in my cabinet, and never thought to look at them.
I just dreamed last night that I was frosting several huge chocolate cakes, then I accidentaly licked my fingers, and then panicked, lol. I have, in reality, had a few moments where I came very close to just popping something in my mouth without thinking about it. The other day I almost bit into a piece of regular pasta to see if it was done. Duh!
Hmm, that's true, his uncle just had a clot recently, and he was getting tested for lupus, I hadn't thought of that. Thanks for the advice, I will check out different AI disorders.
My father had the blood celiac test done, and it came back negative, apparently. He also has bone spurs and degeneration in his spine. He has a huge amount of crazy symptoms and decades of serious health problems. I've discussed it quite a bit with my parents, and I do think he suspects he could have it, but I can;t see him being very willing to make the lifestyle and diet changes to get better. I will bring up the idea of looking into other AI diseases with him as well. Thanks again!
I feel like the kid from the Sixth Sense, "I see celiac people".
But seriously... I was just diagnosed through biopsy in June, and have been gluten-free ever since. My symptoms are improving, and I'm doing okay.
However, I now have concerns that my husband could also be celiac. He's having quite a few health problems. I really just wanted to see if other people had these particular illnesses, and were diagnosed w/ celiac.
So, he had multiple, large blood clots in both his lungs (pulmonary embolisms) late last year. The doctors said many looked "old", and that new ones had been building on top. We were very lucky to have discovered it in time. We never found an answer, why he got these, he had not traveled, he had not had a physical trauma, nor genetic issues.
We've been to the ER with him about 7 times in the past year, with odd symptoms, arm and leg numbness, chest pain, shortness of breath. CAT scans show that his clots have not returned, thank goodness. After many, many tests, they discovered he has some stenosis, degeneration and bone spurs in his spine, in at least two seperate pairs of vertabrae. It helps explain many of his symptoms... but I have to wonder why all the illnesses are suddenly popping up. He just turned 40 years old.
He also is often tired, naps a lot, joint pain... but he works a lot and is a tall big man...
I have seen people discussing bone degeneration and blood clots, are these somewhat common celiac issues... or am I just putting together puzzle pieces that don't belong?
He's been very supportive to me as I have been learning, and changing my life due to celiac. When I have bought up the possibility that he could have it as well, he shrugs it off. I am also about 99% sure my father is celiac, with good reason, he has fibromyalgia and is a textbook celiac case. I think my husband just believes I am seeing it everywhere now.
I am amazed at how I discover new things every time I come to this forum! Someone mentioned dry heels and elbows, that are now getting softer. I never attributed that to celiac, but yes, mine are softer now too. I always had a lot of trouble with my heels, and now they are fine. Amazing what gluten can do to your body.
I went gluten-free after my diagnosis in late June, so I'm still fairly new, but I have had some changes.
what changed for you after you went gluten free?
- For a long, long time, I have had this constant pain in my left heel. I though I had possibly broken it, but after going gluten-free, it went away. It comes back whenever I have accidently been glutened, and sticks around for awhile. I had other joint pain all over, and an awful bout with sciatica. Those are mostly gone. I had horribly "D", and that went away to some extent, and is improving month by month, as I get better at discovering the hidden gluten I was still getting. (For example, my black pepper and other spices could have had traces) I have only had one or two migranes total since going gluten-free, after having them at least once or twice a month, sometimes more. My brain is much less foggy and I'm generally in a better mood.
Did you have more energy?
- In general, yes. For the first few months, I was still exhausted almost constantly, and would only occasionally have a "good day". For the past three weeks, I have finally seen my energy coming back, bit by bit. I still have bad days, but they are less now.
lose weight? gain weight?
Last time I checked, I had lost about 15 - 20lbs.
healthier skin and hair?
My hair has been falling out, a lot, I'm hoping that will improve soon. My skin has a healthier look to it now. I always looked sickly and pale when I was at my worst. When I have gotten glutened, I look terrible.
more regular bowel movements?
Yes, after going gluten-free, I had "normal" bowel movements for the first time in months. Again, good days and bad days.
get rid of depression?
Yes, much improved.
any bloating? How long did it take to see changes?
Overall, getting better. Good days/bad days.
What symptoms have not gone away?
Still very tired a lot of days, it's still hard for me to exert myself too much, or my body will tremble. I still get my symptoms now and then,... but it's all getting more tolerable. I'm trying to be patient and allow my body to heal.
Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
- I'm not far enough out to determine that yet. I do have PCOS, (Polycycstic Ovarian Syndrome) which a lot of other celiac women seem to have as well, and insulin sensitivity. I developed severe carpal tunnel in both hands, at a pretty early age. I have had surgery on one, the other needs it as well. My body has been put through a lot, and my weight has gone up and down numerous times.
My doc was sure it was my gallbladder making me ill, but all testing came back showing it was okay. I was so frustrated at that point, I almost wanted them to take the darn thing, in hopes I'd feel better. Thankfully he referred me to the GI doc next, who discovered the celiac.
Hi, just thought I would formally introduce myself. I've been posting for a short while.
I've had mysterious illnesses much of my life. I've had lifelong struggles with migranes, stomach problems, insomnia, fatigue, depression, panic attacks and anxiety. I would occasionally pass out. My weight has gone up and down numerous times, and my menstrual cycle was irregular to the point of going years with none. I would sometimes have strange outbreaks, like hives, swollen eyes and lips, terrible mouth sores, or odd skin eruptions all over my hands. Many of these things I just accepted as quirks. I wasn't encouraged to go to the doctor, and I learned to just "be tough".
Soon after I married to my husband of 13 years, we tried to conceive, with no luck. About 2 years in, I was diagnosed with PCOS (Polycystic Ovarian Syndrome). I latched onto that as an answer to many of my issues. With a lot of time (4 years) and effort, diet changes, weight loss and some meds, I was able to conceive twins, and give birth succesfully. I then miscarried twice, and finally had my third child, four years after my twins.
After a few very stressful years, and the birth of my third child, I began to struggle more. I could not lose weight no matter what I did. I would work out for an hour a day with no results. Then, my husband got very, very ill, late last year. He was in the hospital for a week, then out briefly and back in. Not long afterwards, my health started to decline, very rapidly. I believe the stress kicked my celiac into high gear.
I became fatigued to the point of having to drag myself out of bed each morning, and spending much of the day on the couch. My weight ballooned, even though I didn't eat much, and had no appetite. I always looked pale and swollen. I didn't have a regular BM for months on end, they were all loose, and quite often bloody. I had shooting and dull pains in my abdomen. My sciatica occasionally acted up, my joints ached and I had constant pain in the heels of my feet. I could not shake my low grade depression, despite being on meds. Anytime I tried to exercise, my hands and knees would tremble. I woke up one morning shaking all over, unable to get out of bed at first.
I went to my PCP about the pains in my abdomen, and other concerns and he thought it was gallbladder. After several tests with no results, I was sent to a GI, had a endoscopy and colonoscopy, and was finally diagnosed with celiac and gastritis, atthe age of 35.
I've been gluten free since late June, and have seen improvement in some ways, and still struggling with others. Still very fatigued, taking supplements, and getting additional blood tests within the next day or two. I've lost about 16 lbs thus far, which is nice, but I'm most concerned with healing. I'm really grateful to have found this forum, and discover so many other people "like me". Congrats if you made it through my ramble.
LOL, well if you can't vent on a celiac board, where can you vent, right?
One reason I struggled so long was because I was raised in a big family, not much money, and going to the doc was discouraged. I still feel guilt when having to go for expensive testing.
I fully expected my mother to be difficult with my diagnoses. (I'm a grown woman, but she and my father live close by) I was pleasantly suprised at how supportive she has been, and how hard she has tried to learn.... after some intial "Well, you can have a little gluten, right? That won't hurt you.". She is now wondering if she has celiac or some gluten intolerance, because of some GI issues.
However, it was a long, long road to get to a good place with our relationship in general, and I got plenty of grief over my health issues in the past. So, I'm sympathtic to your struggle! Best of luck to you.
I thought I was crazy. All the illnesses and symptoms I have over my life, I honestly has to ask myself if I was "faking" or somehow doing it to myself.
My father has numerous health issues, fibromyalgia being the most prominent. I myself think he has celiac. After my diagnoses, he got a blood test, but apparently it was negative. I know that isn't completely conclusive, but he is so set in his ways with a terrible diet, I dont think he'll change.
Now that I have really been struggling with heightened celiac symptoms, especially the aches and pains and fatigue, I understand him more as well.