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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Excessive Constant Hunger?
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Does anyone with celiac disease remember if they had Chonic or excessive hunger before diagnosis when they were eating gluten? Also what is the signifignance of low Siga? Is Secretory IgA important or no?

I had very low Siga 11 (400-800) Does this make my gut leaky to the point where I would not absorb food causing my weight loss as well?

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I was always hungry, but it really ramped up for awhile after I went gluten-free. Thankfully it has reduced more towards normal now. I think it is the malabsorption which causes both the weight loss and hunger. However, not every Celiac loses weight while eating gluten. The symptoms vary widely from person to person, which is one of the main reasons why Celiac is so unrecognized.

I've never heard anything about "Siga" before, so I haven't any idea. What test showed that? Maybe someone else knows, and will chime in.

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I had extreme need to eat before gluten-free, someone I worked with commented that it seemed I really needed to eat at certain times to keep going I was also very thirsty at times and had changes in my vision. I chalked it up to being on my feet all day at a demanding job and having too many personal challenges and knew that my health was generally not good and I wasn't taking care of myself like I should... Looking back, I know now that for me those were signs of diabetes. Fast forward a couple of years and after going gluten-free and I was still more tired on a regular basis than I wanted to be(although huge difference from before) and was losing too much weight all of a sudden(it didn't seem all that sudden to me at the time, it kind of snuck up on me, but now I realize it was in a short time frame). I requested testing and came out with a clear diagnosis of diabetes.

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I had extreme need to eat before gluten-free, someone I worked with commented that it seemed I really needed to eat at certain times to keep going I was also very thirsty at times and had changes in my vision. I chalked it up to being on my feet all day at a demanding job and having too many personal challenges and knew that my health was generally not good and I wasn't taking care of myself like I should... Looking back, I know now that for me those were signs of diabetes. Fast forward a couple of years and after going gluten-free and I was still more tired on a regular basis than I wanted to be(although huge difference from before) and was losing too much weight all of a sudden(it didn't seem all that sudden to me at the time, it kind of snuck up on me, but now I realize it was in a short time frame). I requested testing and came out with a clear diagnosis of diabetes.

Which test confirmed your diabetes?

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Which test confirmed your diabetes?

I requested a glucose tolerance test(Gtt). I am a believer that this is one area where the more data the better. A fasting blood sugar, which many doctors watch and go by, really means very little(mine was completely normal on the testing day but other tests revealed significant blood sugar regulation problems). Any one-time blood sugar check really doesn't mean much. Now, I know that an A1C can be useful too. That is a measure of average blood sugar over the few months prior to the test. When you have gtt done, they give you pure glucose to drink and take blood several times over the coarse of a certain amount of time to see how your body reponds to it. It can range from two hours to five depending on your symptoms and what your doctor wants to rule out. There are a number of blood sugar regulation problems. And, I am told now that they can also measure your how much insulin you body puts out at different times. I was not aware of that and it was not done with me but my blood sugar was measured at regular intervals and that gave a clear enough picture of what was going on for me. As I mentioned, there are several types of blood sugar regulation problems-3 recognized types of diabetes, each with unique characteristics, all with high blood sugars and then there are some types of problems with low blood sugars as well. Here is good resource that I hope will help answer any questions you may have. http://bloodsugar101.com/ Some of these things can be very manageable and even cureable for some but this is one area where knowledge is power and it's better to know, catch it early and manage it, than to let it go, if it is a problem.

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I requested a glucose tolerance test(Gtt). I am a believer that this is one area where the more data the better. A fasting blood sugar, which many doctors watch and go by, really means very little(mine was completely normal on the testing day but other tests revealed significant blood sugar regulation problems). Any one-time blood sugar check really doesn't mean much. Now, I know that an A1C can be useful too. That is a measure of average blood sugar over the few months prior to the test. When you have gtt done, they give you pure glucose to drink and take blood several times over the coarse of a certain amount of time to see how your body reponds to it. It can range from two hours to five depending on your symptoms and what your doctor wants to rule out. There are a number of blood sugar regulation problems. And, I am told now that they can also measure your how much insulin you body puts out at different times. I was not aware of that and it was not done with me but my blood sugar was measured at regular intervals and that gave a clear enough picture of what was going on for me. As I mentioned, there are several types of blood sugar regulation problems-3 recognized types of diabetes, each with unique characteristics, all with high blood sugars and then there are some types of problems with low blood sugars as well. Here is good resource that I hope will help answer any questions you may have. http://bloodsugar101.com/ Some of these things can be very manageable and even cureable for some but this is one area where knowledge is power and it's better to know, catch it early and manage it, than to let it go, if it is a problem.

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Although mi tests have come negative so far (I was gluten free for months before getting tested and still missing some tests) , I was extremely hungry at all times... I would eat and two hours later I felt like eating the whole fridge! A few weeks after being gluten-free and a few days after starting on the vitamins and minerals my dr and nutritionist put me in to help me with my osteoporosis (they suspect caused by celiac as I am only 28 y/old) I stopped feeling hungry! I mean, I eat what is reasonable, don't get bad cravings, and I am starting to feel like the "old me". I have lost almost 20 pounds since then.

The nutritionist thinks it was my body trying to get what it needed to keep working and since everytime I ate it still couldn't get what it needed so badly, it kept asking for more and more in a desperate attempt to provide my system all the nutrients. They tink once the body slowly started gaining back its ability to absorb the nutrients and we started the vitamins it went like..... ohhhh finally!!! and it stopped asking for those amounts of food :)

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I'm still new to this I was officially diagnosed last Tues but had known my test results for about 6 wks. 2 weeks ago I went ahead and stared my new gluten-free lifestyle when I realized I did not need the biopsy to confirm that I needed to give up gluten. I can honestly say that I could get up from the table after eating a normal meal and be eating out of the refrigerator while I was cleaning up. I never felt full. After two weeks being gluten-free I have lost 6 lbs and actually had to remind myself today to eat lunch (I could never figure out those people who forgot to eat, I mean I never stopped thinking about food, I woke up hungry and went to bed hungry) I don't know if this will last but it really feels great to not be starving all the time. Hope you find the same after you've been off gluten a while.

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I'm still new to this I was officially diagnosed last Tues but had known my test results for about 6 wks. 2 weeks ago I went ahead and stared my new gluten-free lifestyle when I realized I did not need the biopsy to confirm that I needed to give up gluten. I can honestly say that I could get up from the table after eating a normal meal and be eating out of the refrigerator while I was cleaning up. I never felt full. After two weeks being gluten-free I have lost 6 lbs and actually had to remind myself today to eat lunch (I could never figure out those people who forgot to eat, I mean I never stopped thinking about food, I woke up hungry and went to bed hungry) I don't know if this will last but it really feels great to not be starving all the time. Hope you find the same after you've been off gluten a while.

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I can totally relate to that! I never understood how people could just forget they had to eat as I was thinking of food 24 - 7!!! But, honestly, the best thing you can do is ind a good nutritionist that can help you balance your nutrition as we tend to eat just a few things when we go gluten-free because we don't know too many options. With our bodies being deprived for so long of all the vitamins and minerals we need, trust me the best thing you can do is start balancing your diet so you can nourish your body as the healing process in your intestines takes place and you can get the nutrition you need.

Please, ask your doctor for a Bone density scan. Just make sure your bones are healthy and if not (as in my case), they will probably start you on treatment to try reverse damage to your bones. This is one of Celiac's complications and it is not good being old and having osteoporosis, you can imagine how it is being young and having it.

Last, but not least, it won't do any harm if you get some very good vitamin and mineral complex and start taking them. Best wishes for you and trust me, there are very yummy foods and goodies that are gluten-free. Some of them taste so good you won't even notice they are gluten-free!!!

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I can totally relate to that! I never understood how people could just forget they had to eat as I was thinking of food 24 - 7!!! But, honestly, the best thing you can do is ind a good nutritionist that can help you balance your nutrition as we tend to eat just a few things when we go gluten-free because we don't know too many options. With our bodies being deprived for so long of all the vitamins and minerals we need, trust me the best thing you can do is start balancing your diet so you can nourish your body as the healing process in your intestines takes place and you can get the nutrition you need.

Please, ask your doctor for a Bone density scan. Just make sure your bones are healthy and if not (as in my case), they will probably start you on treatment to try reverse damage to your bones. This is one of Celiac's complications and it is not good being old and having osteoporosis, you can imagine how it is being young and having it.

Last, but not least, it won't do any harm if you get some very good vitamin and mineral complex and start taking them. Best wishes for you and trust me, there are very yummy foods and goodies that are gluten-free. Some of them taste so good you won't even notice they are gluten-free!!!

Worst part of this being that I can't for the life of me understand why my vitamin D is still high normal, my Folate was extremely high, my B-12 was fine and I show no mineral imbalances. Can one have celiac and still absorb certain nutrients?

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Yes my appetite was excessive for quite awhile. When I went gluten free 3 weeks ago it got way worse and I was starving and eating all day long for 2 weeks. Now week 3 I've been very hungry, but eating about every 3 hours or so. When I get hungry, it comes on strong and I need to eat NOW. I don't leave the house without food because I know I'll get weak and not feel too good if I can't find something right away.

I've had undiagnosed celiac symptoms my whole life but never had a weight problem. I wasn't too thin and I wasn't overweight. Then when I became hypothyroid I started to gain weight. Shortly after I got diagnosed with thyroid problems I got pregnant. I've had 2 kids in 4 years and weight has been a struggle.

Funny enough, since going gluten free I've been eating like a horse but I am pretty much maintaining my weight. I would like to be losing, but I know that right now I have to heal and not put caloric restrictions on my poor beat up system.

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Yes my appetite was excessive for quite awhile. When I went gluten free 3 weeks ago it got way worse and I was starving and eating all day long for 2 weeks. Now week 3 I've been very hungry, but eating about every 3 hours or so. When I get hungry, it comes on strong and I need to eat NOW. I don't leave the house without food because I know I'll get weak and not feel too good if I can't find something right away.

I've had undiagnosed celiac symptoms my whole life but never had a weight problem. I wasn't too thin and I wasn't overweight. Then when I became hypothyroid I started to gain weight. Shortly after I got diagnosed with thyroid problems I got pregnant. I've had 2 kids in 4 years and weight has been a struggle.

Funny enough, since going gluten free I've been eating like a horse but I am pretty much maintaining my weight. I would like to be losing, but I know that right now I have to heal and not put caloric restrictions on my poor beat up system.

I thought the same but my nutritionist helped me understand that you really don't need a high calorie intake, you just need to make sure you are giving your body the NUTRIENTS it needs. You can be eating a lot of "empty" calories and still not be nourishing your body. In my case we made sure I was eating a certain amount o calories because I am an athlete currently training for the ultimate endurance race- Ironman triathlon. But we really focused on providing my body the calcium, vitamins and minerals it needs to recuperate. It seems your body is desperately trying to meet its nutritional needs by keeping you hungry at all times and if this is true, it won't give you a break until you provide what it needs, no matter how much you eat.

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The variety in celiacs never ceases to amaze me. LOL.. I have always been underweight and low apetite. Even as a child I would skip meals bc I just didn't like to eat. Since going back on the gluten free I'm hungry every 3 hrs and eating a lot more and gaining weight. :D

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The variety in celiacs never ceases to amaze me. LOL.. I have always been underweight and low apetite. Even as a child I would skip meals bc I just didn't like to eat. Since going back on the gluten free I'm hungry every 3 hrs and eating a lot more and gaining weight. :D

LOL... in your case, i guess that is good! In my case... I was always very very thin but then it all started and in the last 5 years I gained 50 pounds, didn't have any energy to work out (I always loved being active), I just could not get myself to train, no matter how hard I tried :( It was very frustrating knowing exactly what I had to do to loose the weight and simply NOT being able to control my ...well, not appetite, HUNGER! and not being able to train for more than coupple days in a row due to lack of energy.

I am glad to see that you are being able to eat ....finally :P

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