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 was diagnosed with celiac disease nearly 5 mos. ago, and have been oily d free for a month or two.
I, too, have begun taking Sertraline / Zoloft, but since I was changing from another medication, I started at a higher dose to replace the dosage of the previous medicine. I have been on the Sertraline for a month.
Recently, I have been in a lot of back / neck pain and a lot of stress in getting my son off to college and going back to my teaching career after the summer off. Also, my curriculum has changed and I have 3 new course preparations this year.
Is it possible that the pain / stress could cause the oily d to recur? I am at my wit's end!!
Has anyone with dermatitis herpetiformis tried Terrasil? I am suffering horribly from some skin problem that I think is associated with my Celiac Disease, but I really don't know what it is because I can't get any of my doctors to examine it. They just suggest that I hand it off to someone else
Sorry, but I must vent a little bit! I have unresponsive doctors whose only advise is to adopt a gluten free lifestyle and see another specialist for my symptoms. They ALL obviously think that I am too stupid or something on that order to understand what that means, because that is all they can offer in the way of relief.
Immediately upon getting my diagnosis, I did and continue to follow a gluten free lifestyle. I do not cheat; I try very hard to make sure that my family/ I do not cross contaminate any surfaces or food that I come in contact with.
I really don't know what to do at this point. I have screamed and cried and cursed and fumed at the lack of care from the doctors that I have loved and admired over the years.
Please respond! I need some support and don't feel that I am getting any from my doctors, i.e. allergist, gastroenterologist, endocrinologist, general practiticioner, dermatologist...
Also, please forgive my pity party, but I feel so lost and alone. (I even hate that I admitted that!)
I turned 50 on my last birthday and was diagnosed 4 mos.later. That was nearly 3 mos. ago. I believe that I've had celiac disease most of my life. Because of food sensitivities, I have always watched for what set my digestive symptoms off and have mostly voluntarily and without much thought cut those things from my diet. I, too, believe that I probably have much damage, especially since my symptoms have improved but not as much as I had hoped. I recently had a battery of blood tests performed by endocrinologist, but he didn't do many of the tests I thought he should. He didn't check my vitamin k levels and treated me as though I were an idiot when I asked him about it. I bleed very profusely and have broken capillaries all over my legs, arms, and torso. Although my hemoglobin and hematocrit were normal, my red blood cells were low. Also, my vitamin b-12 and folate were low as was free thyroxine. Can someone please give some advice?
I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.
In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)
I really don't know what to do or whom to see. I am ready to get well.
I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.
How do you "steer clear of anything mad in a shared facility"? My husband and 2 sons do not have celiac disease and have no desire to share my gluten free lifestyle. I keep my food separate from theirs and try to make most of our shared food things that all of us can enjoy. I can sometimes trick them with gluten free pasta, but they refuse to give up their breads and other gluten-filled foods. I am already struggling with my symptoms and all the stress of managing them; I do not think I could also manage the stress of fighting with them over their food.
Your symptoms are so much like mine! I have only recently been diagnosed and have only been gluten free for a little over 2 months. While my gi problems have improved, the others have not. I just had my first blood work done yesterday. I am wondering if some of these symptoms will be from thyroid problems. I am so sick and tired of being sick and tired!!
I am truly sorry for all of you who have lost a loved one--whether before or after learning of your celiac diagnosis! I know that this is a part of life, but celiac disease surely doesn't make it any easier. I recently lost my grandmother on the heels of being diagnosed with celiac disease. I have a big family that gathered at my mother's home for several days of mourning, etc. We live in a small southern town where friends and church members take lots of food etc. as offerings. My sister and I took care of the kitchen and the food. Although I didn't eat anything that I knew had gluten, I may have been cross contaminated. Also, since I don't know much yet, I wonder whether I was glutened from simply handling the food and the dirty dishes. Any thoughts???
Although I have only recently been diagnosed with celiac disease, I have had symptoms since I was a little girl, and I am 50 years old now. Although there have been more serious and hard to deal with symptoms through the years, I have battled with my weight on and off for many years! I have been both skinny and overweight, often with no real explanation why my weight has fluctuated other than my crazy bathroom experiences. However, I did manage to maintain a normally healthy to low weight for most of my adult. Despite this, in the past five years or so, I have gained at least 30 pounds and have been unable to lose it no matter what. I have had a hysterectomy and two more bladder surgeries, so I really believe that changes in my hormonal health have led to a lot of my problems. Please let me know if you have experiences / ideas/ etc. that might help me understand myself!!
In addition to gi symptoms, I've also had the tingling symptoms on and off for over 30 years, and I'm ONLY 50 (just recently turned 50). lol Anyway, I was told many things like: "You just have a nervous stomach." "You've obviously just cut the circulation off in your..." Back???? "You just ate something bad!!" etc.
Isn't it interesting that when dr's (and I'm sure teachers, which is what I am) get so defensive when challenged with problems we can't fix????
I hope your blood work is much improved on your next appointment! What just kills me is that even with a definitive celiac diagnosis by both blood work and endoscopy that my dr. didn't suggest any other tests or anything. He even diagnosed dermatitis herpetiformis but refused to prescribe Dapsone or give any other advice. He told me I could see a dermatologist or a dietician if I felt that I needed to??? I now plan to get an appt. with an internist (maybe??) for the vitamin / mineral tests.
You and I are in the same boat. I was diagnosed in late February. Immediately went totally gluten free with only a few suspected cross-contaminations. My symptoms immediately were alleviated but have come back with a vengeance. I now look 6 mos. pregnant rather than just 5 mos. The rash has spread and worsened, and the bathroom problems are back. I have toyed with eliminating lactose; however, I only use about 3 T. of skim milk in my decaffeinated coffee daily. Like you, I am going back to whole naturally gluten free foods. Please keep me up to date on your progress--maybe I can learn from your experiences. I surely hope you get better soon (and me, too)!
I am fairly new to the forum as well as to celiac disease. I live in middle GA and am equidistant among Columbus, Macon, and Americus. I need a good doctor who specializes in managing celiac disease cases. So far, I have found none of these. If you know of a good doctor who can help me, please respond. I really need help!