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
Although I have tested positive for celiac I have continued searching why I have been the only family member affected. I have two 2nd cousins which are on a gluten free diet because of celiac symptoms and have been successful. What I have found is "IgA Deficiency." If you are deficient in this antibody this can alter your celiac test results. Certainly something to check in to. My recommendation: if you have a doctor that is not searching for answers keep looking for a doctor who will. Took me a while to find a doctor but has been worth the search!!!
I sailed on Carnival Destiny in April!!! Best vacation EVER!!! And dare to say the best vacation for someone on a gluten free diet. Had a great time, staff were attentive and if you have a gluten free diet - you become VERY SPECIAL!!! I did eat at the buffet and just watched what I ate. Each area has different foods and plenty of each. I had no issues at all.
The dining room dining - was excellent!! There is no way to describe how they cater to you. You eat in the same dining hall (the one assigned to you) each night and I even reqeusted the same waiter (Daniel from El Salvador - we loved loved loved him). I was also assigned a lady to deal with my menu. After the first night I would plan my meals for the next day. You can eat all three meals in the dining hall!!! The 2nd night I ordered a meal and then a backup meal just to make sure the chef could prepare that meal gluten free. When the waiter brought me my food they brought both meals!!! Gives you an idea of why I can 10 pounds on the cruise!!!
The last day on the ship they set a man (eating alone) at our table what was also celiac. Gave me a chance to chat with him which was really nice.
Because we do not experience symptoms, this make the entire process more difficult. I suggest working closely with a GI doctor and being re-tested to see if the antibodies are back in the "normal" range. I found this to be comforting information. I have also found that as my system heals I have even less reaction that when I was first diagnosed.
I have one additional suggestion. Cleansing the system and then starting a regimen may be recommended. Cleansing the system allows anything you are taking to work better and not playing the "catch up" game.
Using an enema to clean out the bowels may be needed before you begin taking something else. You can use something over the counter of simple water and soap.
I take miralax daily. If I have a good bm day then I remain on the same dosage. If I have constipation I will double and even triple the dose for the day (suggested by my doctor). I have to pay attention to my body but it is working!!!
I just love this board. What other group of people can you share such intimate information with!!! LOL
Hey, just wanted to put in my two cents worth. It took me months to find doctors that would work with me. When one acted like they didn't have a clue or didn't take me seriously - I found another one. In the end what I did find was a GI doctor that would work with me and a Chiropractor that got me back to where I needed to be.
I have had vitamin levels check to see which areas were low, bone scan, re-check celiac to see if I am with in normal range, and take supplements as needed. I am also your age and wasn't willing to take my health lightly. For the first time in 1 1/2 years I finally feel better. Because your immune system is low you are more likely to "catch" things. But there is end in sight - it is just being deligent to find what works for you.
The reason I sought medical help (then diagnosed with celiac) was my back issues. My neck was severly out of range, 8 vertebra out of alignment and a twisted pelvis. With the help of my wonderful Chiropractor (like doctors not all of them are the same) who was knowledge of celiac and works right with me to get me to the best health possible.
My story is similar to yours, but I didn't even have the GI symptoms. I was having problems but nothing related to the GI track (later found out it was back related not celiac). After a biospy I was diagnosed with celiac. It turned my world upside down. It took me a few months to feel comfortable with my gluten free diet, now I can't imagine life any other way. I to loved my breads and pastas. I loved them so much I choose not to replace them but rather do without them. The only breads I use is the "Bob Mills cornbread" (to die for) and "Pamela's Baking Mix" for pancakes. I have been on the gluten free diet for a year now and I don't even give it too much though - comes naturally.
Since I do not have GI symptoms on small amounts of gluten I chose to be re-tested every 6 months to see if my numbers were decreasing. My last results a few weeks ago show that my celiac is "normal." Basically that means I have adhered to the diet and there is no longer damage. All my vitamin levels are normal range and no bone loss (had bone scan). My focus now is to stay healthy. Not just avoid a little cancer but to feel great each and every day.
So don't focus on what you can't have, but look forward to this new challenge. Sounds like you have a knowledgable doctor and you need to stay the doctor for continued guidance!!!
Over time I have been able to realize the difference. Sad part is, this is trial and error for everyone. You will learn what your body is telling you. My actual lessons came from getting gluten (accidentially) and learning how my system reacts. If I get a larger amount of gluten I have D within 30 minutes for about 30 minutes and then all symptoms are gone. If I get trace amounts of gluten I do not react at all.
I think it is totally your right to choose what level you can live with. Does it really matter if you are gluten intolerant or celiac? If you can tell not having gluten works for you, don't worry about the rest. I'm sure dealing with other sensitivities makes the process even more difficult. I can only encourage you to continue the fight for your health!!!
I can relate to you with the lack of GI symptoms. I have the constipation as well.
As for your Mother!!! I know you want what is best for her, but she gets to make those decisions. Tell her you love her and would like to see her get tested, but leave the rest to her. Be there for her!!! I have family members that will not listen to me and all I can do is educate them on the facts. The rest is up to them!!!
Since being diagnosed 7 months ago I felt like I was left to fend for myself. My GI doctor refused to monitor me or do periodic testing (which I felt I needed because I don't react to small amounts of gluten). I was sent to a dietitian which didn't have a clue!!! I felt alone and felt like there should be professionials to guide me.
This site provided my knowledge. I have read books, this site routinely, etc. But I still wanted a "professional." I found a new GI doctor and he is absolutely wonderful. Not only does he listen to me but is willing to work with me. He is very knowledgable about celiac and even a speaker at the Celiac Meeting tonite!!! I also found a chiropractor that was knowledgable about celiac. Now I feel like I'm armed to protect my health!!!
I went thru numerous doctors before I found someone to work with me. If you feel you need additional "professional" help, keep looking until you find what you want - it is worth it!!!
I haven't figured out if not having outward symptoms is a blessing or a curse. I guess it is all in how you look at it.
I do not have a reaction with small amounts of gluten. I do get mild symptoms with larger amounts. I had to find a new GI doctor who would actually run the blood test ever so often. The first GI doctor just told me all I had to do was follow a gluten-free diet and I was fine. Of course she doesn't have a clue what that entails.
My new GI doctor was totally confused to why the first doctor would not work with me. He is concerned enough that he sent me for blood test (no results just yet) and a bone density test. I'm sure part of that was due to my age and not knowing how long I have had celiac.
I would suggest finding a doctor to run test as needed.
I think all of us can say we've been there to some degree. You can't change what has already happened, BUT you can change the present and the future. Make peace with the past and know that today is your new beginning. You can start making postive memories right this minute. Don't waste another minute all the bad stuff, focus everything you have on what you can change and make it happen. Do "1" postive thing today and make a difference in your life as well as someone else's.