Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 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?
0

15 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,348
    • Total Posts
      917,422
  • Topics

  • Posts

    • Testing After Celiac Disease if IgA deficient
      I am also IgA deficient. My doc took more blood and looked at 2-3 other markers in the blood work , transglutinase, and 2 others. My biopsy showed blunted cilia in sm intestine, but my IgA was low. He suspected Celiac due to cilia so ordered other blood tests. I also presented atypically, burny stomach and reflux...and very little else.
    • Testing After Celiac Disease if IgA deficient
      If you have Celiac Disease, and you are IgA deficient, what do they check on your labs to make sure you are not being "glutened"?
    • Weird Reaction
      Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is. I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.
    • Weird Reaction
      Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since. Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago) Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how. But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios. It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining.  It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid. Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though. Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases. I do feel better in having found these forums though.  
    • Daughter with celiac- need test result help
      You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.     Sounds like you're doing everything right though. Sometimes it just takes time. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,484
    • Most Online
      1,763

    Newest Member
    KKJ
    Joined