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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Mitzi

Hot Stomach

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Greetings,

I am the mother of a newly diagnosed 15 year old daughter. We have learned mountains of information over the past almost three weeks. This site is the most helpful of all. The doctors who diagnosed her admittingly know very little compared to those who live it.

My daughter has always and continues to complain of a "hot" feeling in her stomach which is also accompanied ocassionally by a "sharp ache". Does anyone relate? Any help?

The other major problem is insomnia. Best solutions? We're using melatonin (6 m). Has helped alot but last night was awake until 5:30 a.m.

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If she can take Pepto Bismal liquid give that a try for the stomach issues. As far as the insomnia goes it could be part of her 'glutened' symptoms or it could be that since she is early in the diet she may be experiencing withdrawl and that could be a component of it. Since she is newly diagnosed she may also be anxious bout dealing with this at the start of a new school year. I would talk to her doctor and see if they have any suggestions. Sometimes a short, as needed, course of a sleep aid might help or even an antihistamine. Make sure that you let the doctor know she is taking the melatonin. Any meds she takes and supplements do need to be checked to be sure they are gluten free of course. It does take some time to heal and things can be difficult in the beginning. I hope she is feeling better soon.

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Greetings,

I am the mother of a newly diagnosed 15 year old daughter. We have learned mountains of information over the past almost three weeks. This site is the most helpful of all. The doctors who diagnosed her admittingly know very little compared to those who live it.

My daughter has always and continues to complain of a "hot" feeling in her stomach which is also accompanied ocassionally by a "sharp ache". Does anyone relate? Any help?

The other major problem is insomnia. Best solutions? We're using melatonin (6 m). Has helped alot but last night was awake until 5:30 a.m.

As far as I know, that's just called indigestion. Possible causes, per the Mayo Clinic: http://www.mayoclinic.com/health/indigesti...DSECTION=causes

Many celiacs have trouble with dairy; might be something to think about.

Indigestion (and insomnia) can be caused by anxiety. Celiac disease leads to vitamin B12 malabsorption, which in turn leads to anxiety. Sublingual B12 supplements can help.

Hope she's feeling better soon. Welcome to the board.

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As far as I know, that's just called indigestion. Possible causes, per the Mayo Clinic: http://www.mayoclinic.com/health/indigesti...DSECTION=causes

Many celiacs have trouble with dairy; might be something to think about.

Indigestion (and insomnia) can be caused by anxiety. Celiac disease leads to vitamin B12 malabsorption, which in turn leads to anxiety. Sublingual B12 supplements can help.

Hope she's feeling better soon. Welcome to the board.

Thanks to both of you for the reply and suggestions. In the past we've tried the pepto bismol without out much success. I think it's time to try it again.

I did get a once a day vitamin from the whole foods store that is guaranteed to be gluten free. She plays volleyball and has 3 -4 hour workouts per day which worries me with the absorbtion issues and keeping up with these workouts. Can she take additional b12 along with this multi-vitamin and do you have a brand name you recommend? I would ask the doctor who diagnosed her but he told me insomnia was not related at all to celiac and told me to see her general physician. The general physician treated her for acid-reflux for 6 months until I insisted we see a gi specialist.

The nutritionist at the whole food store also recommended probiotics to help heal the digestive track. Any opinions on this product?

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Thanks to both of you for the reply and suggestions. In the past we've tried the pepto bismol without out much success. I think it's time to try it again.

I did get a once a day vitamin from the whole foods store that is guaranteed to be gluten free. She plays volleyball and has 3 -4 hour workouts per day which worries me with the absorbtion issues and keeping up with these workouts. Can she take additional b12 along with this multi-vitamin and do you have a brand name you recommend? I would ask the doctor who diagnosed her but he told me insomnia was not related at all to celiac and told me to see her general physician. The general physician treated her for acid-reflux for 6 months until I insisted we see a gi specialist.

The nutritionist at the whole food store also recommended probiotics to help heal the digestive track. Any opinions on this product?

My B12 is the Earthfare house brand, but unless you live in the Carolinas this won't be very helpful. Any health food store should be able to help you. You just need a sublingual (ie, put it under the tongue and let it dissolve) tablet that's gluten free. She can take additional B12 no problem; there are no known side effects of too much B12. http://www.merck.com/mmpe/sec01/ch004/ch004i.html (4th paragraph; they suggest not taking large doses over the long run)

I know next to nothing about probiotics. Here's a thread that started 5 years ago, but somewhere around post 8 it gets up to this year and also gets more useful: http://www.celiac.com/gluten-free/index.php?showtopic=3137 If she's not giving up dairy, I like the suggestion from the last post just to eat a lot of yogurt. If she is giving up dairy, make sure she's getting sufficient calcium and magnesium. (BELIEVE me; I'm off dairy and still trying to get the supplements right.)

I think ravenwoodglass knows a lot more about both of these topics, so hopefully she'll be back to reply again shortly.

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YES! I know that hot feeling! This is how i used to feel when i was in my first few months or when i get glutened. I think it has something to do with dehydration caused by the villi damage or something. I remember reading that water is also absorbed in the small intestines so it can be effected. Anyways she is not alone with this feeling and it did go away :-)

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Hi-

I just joined celiac.com expressly to answer your post!!

When I was 5-years old, I too complained of a "hot tummy" to my parents. They were never able to get a better description from me, and frankly, at this point, I have no recollection of how a hot stomach feels.

It was my mom, not the doctors, who first suspected celiac disease. This was the mid-seventies and there were ABSOLUTELY NO gluten-free foods that tasted good (or at least, none that my mom we willing to buy or try). I remember not being able to eat any treats or goodies for 6 months. My mom tried to reintroduce gluten on my birthday and gave me birthday cake, but I immediately regressed and started to complain of a hot stomach again. Six months later, she tried again, and I was able to eat gluten and have been eating it ever since. (About 10 years ago, I had my blood tested and an endoscopy, and there were apparently no signs of celiac disease; just a high IgG). I really don't get it, because my symptoms were so extreme at age 5.

I now have a 5-year old daughter, and she seemed to be developing the same symptoms I had and so we took her off gluten. A couple of months later, she started developing similar symptoms even without gluten - cramping and diarrhea -- and we found out she is lactose intolerant. After taking her off lactose, she seemed much better, so we reintroduced gluten. There were no dramatic consequences, but about a week later, she started complain of a "hot tummy" and started to have diarrhea again (no cramping this time).

Our gatroenterologist told us to wait a couple of months while she keeps eating gluten, and then they'll try the blood panel and if necessary, the endoscopy.

(I have to admit that when I was eating gluten-free with her, my stomach felt better as well)

Oh, and the dr. had never heard of the hot stomach symptom!

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Hi there! I am considering myself self-diagnosed and still very new to the Gluten-free diet, but completely know this feeling. Does your daughter have constipation?

I have had chronic constipation for about 3 years and the hot feeling, for me, is when I am very "backed up" and it extends to my lower back. Very awful and uncomfortable and just painful.....

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Hi-

I just joined celiac.com expressly to answer your post!!

When I was 5-years old, I too complained of a "hot tummy" to my parents. They were never able to get a better description from me, and frankly, at this point, I have no recollection of how a hot stomach feels.

It was my mom, not the doctors, who first suspected celiac disease. This was the mid-seventies and there were ABSOLUTELY NO gluten-free foods that tasted good (or at least, none that my mom we willing to buy or try). I remember not being able to eat any treats or goodies for 6 months. My mom tried to reintroduce gluten on my birthday and gave me birthday cake, but I immediately regressed and started to complain of a hot stomach again. Six months later, she tried again, and I was able to eat gluten and have been eating it ever since. (About 10 years ago, I had my blood tested and an endoscopy, and there were apparently no signs of celiac disease; just a high IgG). I really don't get it, because my symptoms were so extreme at age 5.

I now have a 5-year old daughter, and she seemed to be developing the same symptoms I had and so we took her off gluten. A couple of months later, she started developing similar symptoms even without gluten - cramping and diarrhea -- and we found out she is lactose intolerant. After taking her off lactose, she seemed much better, so we reintroduced gluten. There were no dramatic consequences, but about a week later, she started complain of a "hot tummy" and started to have diarrhea again (no cramping this time).

Our gatroenterologist told us to wait a couple of months while she keeps eating gluten, and then they'll try the blood panel and if necessary, the endoscopy.

(I have to admit that when I was eating gluten-free with her, my stomach felt better as well)

Oh, and the dr. had never heard of the hot stomach symptom!

I think your doctor is giving you good advice about keeping her on gluten and then testing. I also think it would be a good idea for you to get tested at the same time. Kids do not outgrow celiac but it can take a long time for the symptoms to reappear. Do keep in mind that there are pretty high rates of false negatives for both blood and biopsy so a gluten free trial is needed for a couple of months after all testing is done on you both. It is a good idea for you to eliminate dairy also when you do the trial and IMHO staying away from a lot of soy is also a good idea. After you are both feeling better you can add the soy and dairy in, one at a time, for a week or two and see if you react. Also gluten issues can show up as more than gut issues so headaches, joint and body pain, difficulty in concentration or mood issues can also be an indication that you are reacting. When you go gluten free at first you may also have to deal with a bit of withdrawl which can make us moody, sleepy, or have trouble sleeping etc. If you have withdrawl bear with it as it is a sign that going gluten free is what your body needs. It will pass. Use the next couple months to read as much as you can here and ask any questions you need to.

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I think your doctor is giving you good advice about keeping her on gluten and then testing. I also think it would be a good idea for you to get tested at the same time. Kids do not outgrow celiac but it can take a long time for the symptoms to reappear. Do keep in mind that there are pretty high rates of false negatives for both blood and biopsy so a gluten free trial is needed for a couple of months after all testing is done on you both. It is a good idea for you to eliminate dairy also when you do the trial and IMHO staying away from a lot of soy is also a good idea. After you are both feeling better you can add the soy and dairy in, one at a time, for a week or two and see if you react. Also gluten issues can show up as more than gut issues so headaches, joint and body pain, difficulty in concentration or mood issues can also be an indication that you are reacting. When you go gluten free at first you may also have to deal with a bit of withdrawl which can make us moody, sleepy, or have trouble sleeping etc. If you have withdrawl bear with it as it is a sign that going gluten free is what your body needs. It will pass. Use the next couple months to read as much as you can here and ask any questions you need to.

Thanks for your answer. After chidhood, I never suffered any symptoms of celiac disease (but I used to have terrible headaches up until 20 or so). I developed a tremor when I turned 30, and after a neurological workup revealed nothing, I decided to go back and get tested for celiac. Nothing! I do think I'll get tested again after our 2-month gluten fest (daughter is ecstatic and trying to hide any signs of diarrhea so that she doesn't have to go back to a gluten-free diet).

I think the elimination diet is a great idea; the only problem is that without a diagnosis of celiac, it becomes too easy to slide back into occasionally eating gluten, since it seems to be in everything. And without the diagnosis, I feel overly demanding with family and friends who invite me to dinner and who then either have to make something special for me, or watch as I disdain their food for my own. The diagnosis would make my behavior less neurotic-seeming.

I'm torn between wanting my child to have a firm diagnosis of something we can "fix," and wanting the tests to come back negative so that she can experience the joys of bakery breads, pasta, etc. etc.

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Yes, I get the hot stomach symptom as well. NOt all the time but fairly regularly. I've only been gluten free for 6 months and I'm taking a long time to improve. So I'm not sure if the attacks of hot stomach are a result of getting glutened or just another dip in my rollercoaster ride of recovery

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I'm torn between wanting my child to have a firm diagnosis of something we can "fix," and wanting the tests to come back negative so that she can experience the joys of bakery breads, pasta, etc. etc.

She can still have the 'joy' of fresh baked bread and pizza doughs along with pasta and cake and cookies, etc. etc. if she has to be gluten free. There are some really good gluten free mixes and ready made stuff available now. I was diagnosed 8 years ago and to say the stuff I could find was nasty was an understatement. But now with companies like the Grainless Baker, Gluten Free Pantry, Kinninickinnick and even Betty Crocker making some good mixes and ready mades there are hoards of gluten free stuff available that is really good.

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Before I went gluten free my stomach was

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