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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Feel Better When I Just Don't Eat
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I know it's terrible. But everything I eat makes me feel sick or worsens other symptoms. Everything. Plain boiled chicken, bananas, cooked carrots...I've had a really simple, unprocessed diet for awhile and it doesn't seem to have helped anything. But when I don't eat or I eat very, very little I have so much less pain. Even my fibromyalgia feels better! I have had a stabbing LRQ pain for five years that no one has been able to diagnose that flares up when I am active or sometimes just at random, and it fades to basically nothing when my stomach is really empty most of the day. I was actually able to jog for five minutes yesterday, which sounds like nothing but it's a huge step up from having to stop after 20 seconds from stabbing pains. I just feel lighter and that constant stomach pressure I didn't even realize was there disappears for awhile.

 

No one has been able to diagnose my stomach issues, and when they can't figure it out they just send me away with no answers or suggestions of things to try. My celiac tests all came back negative, but I am still completely gluten-free, including avoiding CC which has helped somewhat but not enough to allow me to function normally. None of my doctors have listened to me, and I can't get a referral to see another one for a little while still. I feel like I'm in limbo.

 

I know this is no good. I just don't really know what to do about it.

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Lower right quadrant could be your colon.

 

Have you tried a probiotic?

 

Keep in mind some food triggers can cause damage for 12 days, before healing process time.  I think it is in your best interest to keep a food journal.

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Lower right quadrant could be your colon.

 

Have you tried a probiotic?

 

Keep in mind some food triggers can cause damage for 12 days, before healing process time.  I think it is in your best interest to keep a food journal.

 

Yeah I've tried several probiotics over the past few years, but I never noticed any difference from them. I had a colonoscopy/endoscopy and a full abdominal and pelvic CT in December and January and they couldn't find anything really wrong with me apart from mild gastritis.

 

I will try the food journal, but it seems like it's a pretty consistent discomfort that occurs no matter what I eat, if I eat. I've done everything from Standard American Diet to vegetarian to gluten-free raw to FODMAP-free to SCD to living off chicken and bananas, and it's always been there. I can't think of many foods that would carry through all of those, yet it seems to be specifically related to eating! It's very confusing.

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I feel the same way, but I have Gastroparesis so the softer/less food I eat, the better I feel. I didn't see you say anything about bloating, nausea or constipation though. I does also give me stomach pain and leg cramps if I can't go to the bathroom. I hope you can get an answer!

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I feel the same way, but I have Gastroparesis so the softer/less food I eat, the better I feel. I didn't see you say anything about bloating, nausea or constipation though. I does also give me stomach pain and leg cramps if I can't go to the bathroom. I hope you can get an answer!

 

Yes, I struggle a lot with nausea and constipation and mild bloating, I probably should have mentioned that from the get go! The nausea is a new one for me, it only started happening when I developed the gastritis (December), but the constipation has been lifelong with occasional periods of regularity and the bloating goes back a few years. Thank you for your reply!

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Oh how I can relate to this!  When I was 15 or 16 I wound up getting anorexia because I refused to eat or even drink anything with calories in it.  I was super sick to my stomach from both ends.  Simply could not keep anything in me and it hurt so badly to throw up.  I vowed to do anything to stop that.  No meds helped.  Not that I could keep them in me.  My mom resorted to having me use suppositories but even those didn't help.

 

I remember being sooo weak and thristy.  The Dr. told my mom to give me whatever I wanted because I had lost so much weight.  I had gotten down to 85 pounds at almost 5' 7" and I was underweight to start with.  I wanted grape juice.  Purple grape juice. I'll never forget chugging down that huge glass of cold juice.  How good it tasted!  But then?  I didn't even make it to the bathroom.  Keeled over in the hallway with projectile vomiting.  I'll also never forget all the screaming that my mom did when she had to clean it up.  Somehow she managed to get the stains out of the carpet.  But to this day I can not have any sort of grape anything.

 

My mom finally sent me back to school after two weeks of being out.  I was weak and feeble.  The only thing I'd had with any calories whatever was chicken broth.  Mainly I was having water, tea and Tab.  I don't think they'd come out with Diet Coke yet.  I figured, my stomach was settled and that was that.  I knew what anorexia was but I didn't see it relating to me.  I never had thought I was fat.  Heck, I was too thin to start with.  I just saw this as a way of keeping my stomach settled.

 

And then in biology class, we had to take our vital signs and type our blood.  I tried taking my BP and it registerd as 10/0.  I knew how to take BP.  We had a cuff at home.  I called Mr. Cook (the teacher) over.  He tried taking it and joked to me that I should be dead!

 

Then I tried to prick my finger to check my blood type.  I didn't want to do it and the lancets we had in those days were like little knives.  I remember staring at the lancet and then it all sort of became a dream.  Apparently I fainted, knocking over this boy that I had a crush on, on the way down.  Then I came to on the cold tile floor, staring up at Mr. Cook.  I didn't recognize where I was and thought that I was home sleeping in my bed.  I said, "Mr. Cook!  What are you doing in my bedroom?"  Of course everyone laughed and I never lived that down.  Most everyone wrote something in my yearbook about it.  But quickly they all became concerned.  He brought his wheeled chair over and he had two girls wheel me outside for some air.  Meanwhile he called my mom and told her to get me to the hospital.

 

She didn't take me to the hospital which was right across the street.  In those days, it was more common to take even emergencies to the Dr.  And that's what she did.  He prescribed something to pep up my appetite and it certainly did.  I began immediately eating like a pig and my weight shot up to 145 which is a perfectly normal number but I felt very fat at that size after having been so thin for so many years.  And that, I think was the start of my weight problems.

 

Oddly enough, no cause was ever found for my stomach issues.  And they seemed to go away for the most part as quickly as they had come.  For my entire life I have had issues though.  If not vomiting then the big D.  I didn't learn of my food intolerances until I was in my 40's.  I'm 53 now.  And now I know that I have gastroparesis.  So the stomach problems continue.

 

I have rambled on and am afraid that I have no real answers for you.  But I can tell you what sorts of things I do eat when my stomach is bad.  And mostly that would be white rice.  I used to put it in chicken broth but I am intolerant to that now and I don't much like beef or vegetable broth with rice in it.  So just plain rice with some salt and pepper.  Sometimes I will eat nothing but that for a couple of days.  Then I will move on to potatoes.  Either a plain baked potato minus the skin and with a little salt or instant mashed.  I make these only with water, salt and pepper.  Not very tasty but can be filling and will usually stay in me.  Plain applesauce is another thing that helps.  Bananas probably would work but I don't really like them and they're not the best thing for a diabetic to eat.  And before I knew of my chicken intolerance, I would eat a small amount of chicken breast.

 

Now I will use turkey.  White meat turkey.  Just a little, chopped finely.  I will put it in a purchased gluten-free gravy or make my own using a little sweet rice flour and turkey gravy.  I will serve this over mashed potatoes or some pasta.  Then if that stays in me, I will move on to similar but made with ground beef.  And from there I will add a bit of onion.  Then I might try pasta with red sauce. 

 

As you can see, my diet can often be quite boring and not the best nutritionally.  I have to take a lot of supplements.  But the other night, my stomach was so dicey I couldn't even manage the supplements.

 

If you can handle a sweet drink, you might try regular Ginger Ale.  Sip small amounts.  That can help.  Otherwise you could make ginger tea.  You might even be able to purchase this in bags.  Not sure.  I either use the powdered ginger from my cupboard, in boiling water and strained, or if I can get some, a little piece of fresh ginger, boiled in water.  But the taste can be quite strong.  A little honey can make it more palatable if you like honey and can handle it.  Hope you feel better soon!

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Eclara if you have all the issues I mentioned, you may want to ask a Dr for a gastric emptying test. Having Gastroparesis can cause all the issues I mentioned, and so can food sensitivities. Try reading about symptoms of Gastroparesis. I avoid gluten and still try to eat easy to digest foods. If you eat soft foods for a couple days and feel better, that's at least something. A difficult to digest food- high protein, high fiber, even high fat- (meats are tough for me but everyone is unique) can slow me down for a couple of days and make me feel like I have the flu or something. A Dr told me to take 500mg of Magnesium daily for constipation and that has helped big time! In fact I may need to lower the amount. lol Just make sure you don't rely on unhealthy carbs as easy to digest foods or it will create even more issues (diabetes!).

I hope this helps!

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Eclara if you have all the issues I mentioned, you may want to ask a Dr for a gastric emptying test. Having Gastroparesis can cause all the issues I mentioned, and so can food sensitivities. Try reading about symptoms of Gastroparesis. I avoid gluten and still try to eat easy to digest foods. If you eat soft foods for a couple days and feel better, that's at least something. A difficult to digest food- high protein, high fiber, even high fat- (meats are tough for me but everyone is unique) can slow me down for a couple of days and make me feel like I have the flu or something. A Dr told me to take 500mg of Magnesium daily for constipation and that has helped big time! In fact I may need to lower the amount. lol Just make sure you don't rely on unhealthy carbs as easy to digest foods or it will create even more issues (diabetes!).

I hope this helps!

I have gastroparesis too.  When mine flares up, I mainly just eat plain white rice with only salt and pepper.  Maybe just a touch of olive oil to keep it from sticking to the pan.  Maybe some unsweetened applesauce.  I am now intolerant to chicken but that used to be an option.  So was chicken broth.

 

But if it is gastritis, it is important not to eat hot or cold foods.  I did not know this when daughter had gastritis and I made it worse by giving her hot chicken broth.  Food and drinks should be just barely warm or cold.  If cooked, then let them cool down quite a bit.  If refreigerated, let them sit out for a bit.  Extreme temps will cause more pain.

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Yah I'm not sure if this is relevant to your problem at all, but I had a similar problem that had been escalating and it turned out to be my gallbladder. I was in horrible pain whether I ate or not, nausea (vomitted 9hrs straight one time), weakness. I got to a point where eating was more painful than not eating so I would barely eat. Once I found out my gallbladder was the problem and I was passing stones almost constantly I was able to change my diet and it helped. Gallbladder is gone now and I'm soo much better. 

 

I still have a whole new host of problems mainly which I feel are Celiac related, but I've yet to be diagnosed.

 

Good luck. And be brave.

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Interesting switch up for me.  I would say the OP has described my life to a T.  Always careful about what I eat and I try to never overeat, because that causes pain and more bloating.  I swear I can feel that food moving through my system most meals.  Had my gall bladder taken out about 2 years ago.  Had tests done to see if it was an emptying problem too.

 

Got some type of stomach bug and vomitted liquids all last saturday.  During the past week every time my stomach was empty, I still felt like I was going to vomit.  That's a quite the switch!

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Lower right quadrant could be your colon.

 

Have you tried a probiotic?

 

Keep in mind some food triggers can cause damage for 12 days, before healing process time.  I think it is in your best interest to keep a food journal.

 

I know it's terrible. But everything I eat makes me feel sick or worsens other symptoms. Everything. Plain boiled chicken, bananas, cooked carrots...I've had a really simple, unprocessed diet for awhile and it doesn't seem to have helped anything. But when I don't eat or I eat very, very little I have so much less pain. Even my fibromyalgia feels better! I have had a stabbing LRQ pain for five years that no one has been able to diagnose that flares up when I am active or sometimes just at random, and it fades to basically nothing when my stomach is really empty most of the day. I was actually able to jog for five minutes yesterday, which sounds like nothing but it's a huge step up from having to stop after 20 seconds from stabbing pains. I just feel lighter and that constant stomach pressure I didn't even realize was there disappears for awhile.

 

No one has been able to diagnose my stomach issues, and when they can't figure it out they just send me away with no answers or suggestions of things to try. My celiac tests all came back negative, but I am still completely gluten-free, including avoiding CC which has helped somewhat but not enough to allow me to function normally. None of my doctors have listened to me, and I can't get a referral to see another one for a little while still. I feel like I'm in limbo.

 

I know this is no good. I just don't really know what to do about it.

Ever been tested for Cystic Fibrosis? I have both Celiacs and CF and it's not just an illness diagnosed in children.

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Keep in mind some food triggers can cause damage for 12 days, before healing process time.  I think it is in your best interest to keep a food journal.

Good to know!

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Thank you all for the replies! I will definitely mention gastroparesis and cystic fibrosis when I visit the doctor next, but I'm not sure the symptoms fit me quite right after reading about them. I'm thinking now that a lot of my problems are actually coming from the gastritis which is refusing to heal. I've been on Prilosec for 5 weeks now. For some reason, the gastritis hates foods high in fat and really wants me to eat things full of carbs, but the only things I seem to be able to eat are higher in fat. My stomach has not tolerated grains or potatoes since I did the gluten challenge in December and the only fruit it will tolerate is bananas. I have been eating 3-4 bananas a day and squash on occasion to try to get some carbs in but it's just not cutting it. I am literally eating only bananas, lean chicken and turkey, cooked spinach, small servings of avocado, occasional squash, carrots and a handful of nuts when I feel like I'm dying. My stomach is generally at least manageable when I eat only this, but as soon as I try to add in anything else the pain flares back up. I have lost 10 pounds and I'm constantly exhausted, and I'm feeling very depressed and lost. I don't know what to do, my gastro brushed me off last time I went in and my GP has told me to rely on the Prilosec for now. I can't get in to see another gastro without a referral from my GP, who will just tell me to wait it out. My mom is all caught up in the idea of doing the celiac gene and food reactivity tests from Enterolab, but I'm not sure what that will even help at this point because I'm already avoiding gluten like the plague and I'm not sure what else I could possibly be reacting to with such a small selection of food, if I'm reacting to anything at all. I just wish I knew why the gastritis isn't healing.

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pepto and digestive enzymes??

Thank you all for the replies! I will definitely mention gastroparesis and cystic fibrosis when I visit the doctor next, but I'm not sure the symptoms fit me quite right after reading about them. I'm thinking now that a lot of my problems are actually coming from the gastritis which is refusing to heal. I've been on Prilosec for 5 weeks now. For some reason, the gastritis hates foods high in fat and really wants me to eat things full of carbs, but the only things I seem to be able to eat are higher in fat. My stomach has not tolerated grains or potatoes since I did the gluten challenge in December and the only fruit it will tolerate is bananas. I have been eating 3-4 bananas a day and squash on occasion to try to get some carbs in but it's just not cutting it. I am literally eating only bananas, lean chicken and turkey, cooked spinach, small servings of avocado, occasional squash, carrots and a handful of nuts when I feel like I'm dying. My stomach is generally at least manageable when I eat only this, but as soon as I try to add in anything else the pain flares back up. I have lost 10 pounds and I'm constantly exhausted, and I'm feeling very depressed and lost. I don't know what to do, my gastro brushed me off last time I went in and my GP has told me to rely on the Prilosec for now. I can't get in to see another gastro without a referral from my GP, who will just tell me to wait it out. My mom is all caught up in the idea of doing the celiac gene and food reactivity tests from Enterolab, but I'm not sure what that will even help at this point because I'm already avoiding gluten like the plague and I'm not sure what else I could possibly be reacting to with such a small selection of food, if I'm reacting to anything at all. I just wish I knew why the gastritis isn't healing.

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Thank you all for the replies! I will definitely mention gastroparesis and cystic fibrosis when I visit the doctor next, but I'm not sure the symptoms fit me quite right after reading about them. I'm thinking now that a lot of my problems are actually coming from the gastritis which is refusing to heal. I've been on Prilosec for 5 weeks now. For some reason, the gastritis hates foods high in fat and really wants me to eat things full of carbs, but the only things I seem to be able to eat are higher in fat. My stomach has not tolerated grains or potatoes since I did the gluten challenge in December and the only fruit it will tolerate is bananas. I have been eating 3-4 bananas a day and squash on occasion to try to get some carbs in but it's just not cutting it. I am literally eating only bananas, lean chicken and turkey, cooked spinach, small servings of avocado, occasional squash, carrots and a handful of nuts when I feel like I'm dying. My stomach is generally at least manageable when I eat only this, but as soon as I try to add in anything else the pain flares back up. I have lost 10 pounds and I'm constantly exhausted, and I'm feeling very depressed and lost. I don't know what to do, my gastro brushed me off last time I went in and my GP has told me to rely on the Prilosec for now. I can't get in to see another gastro without a referral from my GP, who will just tell me to wait it out. My mom is all caught up in the idea of doing the celiac gene and food reactivity tests from Enterolab, but I'm not sure what that will even help at this point because I'm already avoiding gluten like the plague and I'm not sure what else I could possibly be reacting to with such a small selection of food, if I'm reacting to anything at all. I just wish I knew why the gastritis isn't healing.

I personally found the Enterolab testing very helpful.  Most of my problems improved after going gluten free, however I was still left with some diarrhea problems.  I went back to a very simple basic diet based on rice, grass-fed beef and bananas, but the problem persisted.  I finally did Enterolab testing which showed an intolerance to rice--one of my go-to foods.  The last day I ate rice, March 11, 2011, I used four Immodium.  I have had a total of four Immodium in the two years since.  I just wish they could test for more things than they do.

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Thank you all for the replies! I will definitely mention gastroparesis and cystic fibrosis when I visit the doctor next, but I'm not sure the symptoms fit me quite right after reading about them. I'm thinking now that a lot of my problems are actually coming from the gastritis which is refusing to heal. I've been on Prilosec for 5 weeks now. For some reason, the gastritis hates foods high in fat and really wants me to eat things full of carbs, but the only things I seem to be able to eat are higher in fat. My stomach has not tolerated grains or potatoes since I did the gluten challenge in December and the only fruit it will tolerate is bananas. I have been eating 3-4 bananas a day and squash on occasion to try to get some carbs in but it's just not cutting it. I am literally eating only bananas, lean chicken and turkey, cooked spinach, small servings of avocado, occasional squash, carrots and a handful of nuts when I feel like I'm dying. My stomach is generally at least manageable when I eat only this, but as soon as I try to add in anything else the pain flares back up. I have lost 10 pounds and I'm constantly exhausted, and I'm feeling very depressed and lost. I don't know what to do, my gastro brushed me off last time I went in and my GP has told me to rely on the Prilosec for now. I can't get in to see another gastro without a referral from my GP, who will just tell me to wait it out. My mom is all caught up in the idea of doing the celiac gene and food reactivity tests from Enterolab, but I'm not sure what that will even help at this point because I'm already avoiding gluten like the plague and I'm not sure what else I could possibly be reacting to with such a small selection of food, if I'm reacting to anything at all. I just wish I knew why the gastritis isn't healing.

Ask for a SIBO test.   It will check to see if you have a bacterial overgrowth.  Sibo can make you react badly to a lot of foods.  A HIDA scan might be a good idea too?  It will test to see if your gallbladder releases the bile and enzymes you need to digest your food.  If you are taking an acid blocker it can stall the release of bile too, which can cause or aggrivate some of your symptoms.

 

Are you keeping a food log?  By listing what you eat including which seasonings you may be able to figure out other food intolerances.  Some seasonings like seasoning salt contain paprika which can irritate gastritis.  They may contain cornstarch too, which can bother some people.  Avoid MSG.  Write down any symptoms you get. Be mindful of how the main allergens effect you.  You could have intolerances, which aren't full blown allergies.. but enough to give you reactions.   By keeping a record you will have a way of seeing if there is a pattern or connection between various symptoms and foods, which can be tricky to figure out since many food reactions are delayed.

Try eating a few blueberries.  They help heal gastritis.  You could cook an apple with some blueberries and have applesauce, try a bit of sweet potato because they are very nutrient dense.  Please stay away from artifial sweeteners too. 

 

Take a good probiotic.  It helps digest your food and helps your body use the nutrients in the foods you eat.  It helps balance out the "flora" in your gut too.  Don't expect drastic changes from the probiotic.  They tend to work slowly.

Make bone broth to eat.  By slowly simmering a chicken in water with a small amount of vinegar(1 teaspoon) the gelatin from the bones and cartilege will come out, but doesn't taste sour.  This helps heal the gut.

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