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
Prior to diagnosis, I had this exact symptom...along with many others. It would feel like someone was stabbing me in between my ribcage. The only thing that would even provide some relief was a heating pad and as much pressure I could manage on the exact spot. I did end up in the ER once. The GI cocktail did nothing for me. They called it gastritis. Within three days of going gluten-free, the pain was gone.
I was starving for about a month after going gluten-free. I think your body has essentially been starving for so long that when that is no longer the case, it just wants you to eat and eat. It does settle down after being gluten-free for awhile.
I'm still eating skittles as a food group I think it is a normal thing for our bodies to crave the things it is used to and needs. Personally, I'm hoping that once the B12 kicks in I will no longer eat them so often. I know that my body wants them for energy and sugar is always a quick energy thing...of course, the crash comes later.
First of all, you will not get better until you eliminate gluten completely. I found that when I went back on gluten for testing (per doctors orders) that my body got mad at me and went a little crazy and I ended up in the ER twice before I decided that I didn't care about the testing anymore. Second, even when you eliminate gluten completely, it takes the body some time to heal. As that is happening, you may go through gluten withdrawal, craving fats (in my case), and even having some really rough days. You definitely don't want to add dehydrated to that mix so make sure you are at least drinking enough fluids. After I eliminated gluten completely, within a few days, my appetite came back and I was starving Also, at the very least, you need to be taking a good multivitamin and probably add in some B12 and folate. When your body is not absorbing nutrients from food, these levels are low. My initial bloodwork before going gluten free, my levels were normal. Two months later, several were low so it takes time for the bloodwork to reflect what is going on in your body. If results are low normal, it doesn't take much to push them off the low end, especially if you aren't eating anything.
Thank you for your input. The only meds I take are synthroid and birth control bills. I know that I can't take vitamins within 2 hours of the synthroid, but the synthroid shouldn't effect the vitamin levels.
What is the difference between Methylcobalamin and the B12 that starts with a C? I didn't know which to get in the store. In your opinion, are there any brands that are better than others?
How soon should I expect to see a difference in my energy level?
I recently received the results from some bloodwork. I had the bloodwork taken because I have been exhausted and have had some peripheral neuropathy. I need some help interpreting the results as the doctor was less than helpful.
There were also a few borderline things from the metabolic panel:
Protein, Total 7.0 (6.0-8.4)
Albumin 4.0 (3.5-5.0)
Calcium, Total 8.5 (8.5-10.5)
The only advice the doctor gave me was to take iron, B12, and zinc. He didn't even tell me the amounts or how long to take it or anything. Can any of you shed some light on what kind of supplementation I should be doing and what dosages. I know that you aren't doctors, but maybe your doctor was more helpful than mine
I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.
Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?
I understand your frustration and everyone has that moment where they freak out at never eating gluten again. I definitely went through that. If you can't wrap your mind around the all or nothing thing, then create a plan where you eliminate more and more until it is gone. Ideally you want to stop consuming it immediately, but it is better to take a month to get there than to give up on it entirely. Corn tortillas are usually ok; you do have to be careful with what you put in them (seasonings in particular). I have found that for us, we simply just eat out less. I didn't plan it, but it has just happened. Olive Garden has a gluten-free menu if you are seeking Italian and have one near you. PF Changs is also really wonderful. The biggest thing is for you not to be starving when you go. Always grab a piece of fruit or something else before you go. That bread will be much less tempting if you aren't starving. I just try to picture all gluten foods with a picture of poison on it and I remind myself that it hurts my body when I consume it. Those two things help keep me from cheating...and paying for it dearly. I always have food with me in case I get stuck somewhere or am running late. I always have a gluten-free stash of some kind on me at all times.
It must be very shocking to hear that diagnosis. Make sure that you are not making your decision in a moment of panic rather than really thinking it through. First, there are people who simply ignore the diagnosis and go on with their lives; however, know that your body is still being damaged in some way if you continue to consume gluten. You may not see the signs for months or years or even decades, but the damage will be accumulating. Second, there are people on here who have no symptoms at all and still avoid it. You have symptoms even if you are not connecting the dots. Fibro and thyroid disease can be brought on by consuming gluten. Obviously, you have to have the genetic component, but your body is telling you that it doesn't like it. Third, there are so many gluten-free products available these days that it is very manageable. You would be surprised at the restaurants that have a gluten-free menu. Bread is a weakness of mine so when I know that I will be going out to eat, I usually pack my own. Most restaurants are very happy to heat it up for me in a clean pan in the oven.
Ultimately, it is your decision, but just think it through. I encourage you to give the gluten-free diet a chance for a few months before deciding. Just pretend it is a regular diet. You may be surprised at the symptoms that are related and the ones you didn't even realize you had that will go away or improve. I will tell you from personal experience that your thyroid levels will improve on a gluten-free diet and become much more stable.
We are here to help by answering questions and giving you encouragement if you decide to try the diet. As far as your boyfriend goes, he will learn how to handle the difficult ordering process in restaurants. I find it helpful to call ahead of time during non-peak hours to explain my needs. That way I don't have to take the time in front of my friends to go through it all. Being vegetarian, salads are usually ok without croutons (or bring your own). Just watch out for the salad dressings as some of them contain gluten. I know that you feel like you can't do this. Trust me--we all feel the same way at diagnosis. You can do this and it becomes easier to everyday. You learn what you can eat, you find restaurants that you go to all the time where you know what is safe, and you meet some wonderful people who help you along the way to not only cope, but to thrive gluten-free. Is it easy? Not always. Do we sometimes get sad and mad? Definitely. Do all of us feel better without gluten? Absolutely. You can do it.
You also need to remember that damage in the small intestine can be splotchy so, even if multiple biopsies are taken, it can be missed. I say that you need to base it on how you feel because testing is still so unreliable. I know that it is frustrating, but trust your instincts.
I can tell you from recent experience, it does get better. For me it took about six weeks for things to calm down. There is definitely some withdrawal symptoms which sometimes feel worse than just eating gluten. If you stick it out, it will go away. Hang in there, take each day as it comes. Your body has a lot of healing to do.
In some ways, you can have issues from the diet alone and it is usually from lack of fiber. A lot of the gluten-filled products are enriched while the gluten-free versions are not. The other consideration is dairy. I was still having D after going gluten-free and I tracked it down to a dairy intolerance. Having a milk intolerance is actually very common for the newly diagnosed because the damage in the small intestine also hinders the body's ability to break down milk. I would try to eliminate dairy for a week and see if it improves. Some people are able to add milk back into the diet after some healing takes place; others cannot. If it is not dairy, you may need to look for some alternate source of fiber. You could also look for other food intolerances like corn, soy, etc. The best thing to do as someone mentioned was to start with a whole foods diet and then add things in slowly to see what you can tolerate. Keeping a food journal is a pain, but it really helps to notice a pattern.
Thanks for all of the advice and sharing my misery It is nice to know that I am not the only one dealing with all of this. Starting Monday (because I have to grocery shop tomorrow first ), I am commited to a minimum of 2 weeks on a whole foods diet. Part of my energy issue is that I am craving sweets because my body is still malabsorbing fats. I think all the sugar I have consumed is tanking my energy levels. I have also purchased a new gluten-free shampoo, conditioner, body wash, face cream, and makeup. This better work I figure I can either spend the money on new products or buy stock in benadryl A whole foods diet can only help with the healing so I am going to try. I will probably be back here whining by tuesday from sugar withdrawal
I'm only a month and a half into this journey. I just wanted you to know that I felt exactly like you are describing when I eliminated gluten. It didn't help that because I was malabsorbing fat that my body craved it...and not the good kind. I will second the Snickers. They did help me get through that time. I will tell you that it does get better. I'm just now starting to feel like my appetite is leveling on and the cravings are lessening. Now if only I can eliminate sugar I'm starting a whole foods only eating plan on Monday to try to see what other intolerances I have. I expect to go through the withdrawals all over again. It completely stinks, but it is worth it. Hang in there. Take it one day at a time and don't beat yourself up. This is a learning process and your body goes crazy trying to process all the changes and begin to heal.
Another option would be to find out the name of the person or place catering it and speak with them directly. You can ask how things are prepared ahead of time. This way your friend doesn't have to worry about handling it. I have a friend with celiac disease and the one time we went to a wedding together, the caterer even made her a special plate and brought it right out of the kitchen covered. I would still bring food as a backup, but I do that on a daily basis I'm paranoid of getting hungry and cheating...and regretting it.