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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.

Sugar Intolerance?
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23 posts in this topic

I finally found the common link between all of the accidental glutenings and inflammation flare-ups I've had this past month... Sugar. That first time was set off by Hansen's soda. The second time I thought CC was to blame, but I think it was the banana bread mix itself and the Udi's muffin I ate that morning. Number 3, just last weekend, I had a "sugar-free" Jello with my sweetened rice cereal.

I spent last week at home (missed five days of classes, two tests and at least 10 hours of work-study) bouncing around between ERs for fluids, my primary doctor and finally a GI. Blood was run twice by two different labs (normal), ultrasound of the gallbladder and liver (normal), upper endoscopy (minor inflammation of the stomach lining, waiting on biopsy results from the intestine). My primary and the GI agree that maybe I didn't get rid of all the gluten and/or have other intolerances or maybe it's not gluten at all and we're missing something else.

Last week I stuck with foods like applesauce (natural, no sugar added), mashed potatoes, chicken breast and some white rice and felt a little better every day. I also started taking bentyl (initially for the D, but now to help settle any/all intestinal spasms) and went back to the Prilosec (20 mg 2x/day). I felt pretty good this weekend and got back to school. I took my pills last night with a couple big swallows of Sierra Mist and woke up with some more inflammation, but little pain. Was able to focus while working through a swamp of homework, made it through four hours of classes today and sat for a test I missed last week. I was hungry all day and tried to focus on the protein.

But the nagging pain I woke up with kept building and now I'm a little nauseous, upper-abdominal cramping, foggy and the start of a headache. So I went back through everything I ate today and found quite a bit more sugar in foods I never thought to check: Udi's bread, Deli Select turkey (I had to take it out of the original package to fit it into my mini-fridge, didn't realize it was honey flavored), Uncle Ben's garden vegetable rice, more turkey and, the last straw, peanut butter.

So I sorted out all my food: absolutely 100% sugar-free on one shelf, sugar on the other shelf whether it's the first or 15th ingredient. Now I'm down to a couple boxes of Minute Rice, rice cakes, rice pasta, quinoa, applesauce, apple juice, tomato paste, raisins and some salt. I have some fruit in the fridge and some roast beef. Just made plans with my roommate to hit the farmer's market tomorrow. But what the heck do I do now? I work, I have class; I can't carry a bowl of rice or a plain rice cake with me everywhere I go. And I have trouble with raw veggies and I have a tiny fridge (no freezer box) which I share with my roommate so there's limited room for leftovers or pre-cooked meals. My lit prof suggested I take a cue from Thoreau and live off of air. If only it were that easy.

Sorry for the long post, but it was a long week and a really long month and I just want to eat!

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I'm new to all this too. Its not easy. Coming to terms with a gluten free diet is hard enough. Let alone the possibility of other intollerances. *bangs head*.

Personally I'd not want to cut something out unless I was certain it were an issue. Sugar of course is a huge thing to try and avoid. If i suspected something, id likely eat more of it for a week and monitor how i feel, then the following week, cut it out 100%, and finally reintroduce it. At least then, you'll have a better idea whether sugar is an issue or not.

Then again, as you have class, maybe total elimination for a week is a slightly faster route. But what if you were due to feel better next week anyway? And you avoid sugar unnecessarily for the rest of your life?

I wish i had a full time nutritionalist working for me, its not easy.

Hope you figure out whether or not sugar is an issue. If it turned out sugar was an issue for me, I think id be screwed. It's hard enough as it is.

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Thank you for your reply Maverick. I'm cutting it out 100% this week and replacing it with whole food since that's really what I need to recover from the last month anyway. I may allow some minor slips; just not 5 in one day like yesterday. I do have a four day midterm break coming up next week and I'm going up to the cabin. Restaurants on the North Shore of Superior are ripe for experimentation :) Of course, I'll be carrying a stock of Pepto, Immodium, Prilosec, Bentyl, Tylenol and whatever else I find... just in case.

I am hoping I only got this reaction because I didn't allow my stomach enough time to heal. I didn't think I had much damage in the first place, but when school's in session, if it's labeled gluten-free I eat it. I needed to drop some of the junk food anyway; this will be a good kick in the pants to overhaul my diet.

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Since sugar seems to be your problem, you may want to take a look at fructose malabsorption. Just google it and you will get a ton of hits. Apple sauce and apple juice whether sweetened or not would send me over the edge. Also tomato paste would have too much fructose for me. The two main sugar malabsorption offenders are fructose malabsorption and lactose intolerance. Both worth checking out. Hope you feel better soon!

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Since sugar seems to be your problem, you may want to take a look at fructose malabsorption. Just google it and you will get a ton of hits. Apple sauce and apple juice whether sweetened or not would send me over the edge. Also tomato paste would have too much fructose for me. The two main sugar malabsorption offenders are fructose malabsorption and lactose intolerance. Both worth checking out. Hope you feel better soon!

I've wondered about this for myself. Can't have ANY fruit. Extremely limited on breads and pastas....should probably omit entirely. I eat whole foods as much as possible, but when I do splurge on something processed, it can only have 2 or 3g of sugar per serving.

Nuts are a good take-a-long snack.

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I've wondered about this for myself. Can't have ANY fruit. Extremely limited on breads and pastas....should probably omit entirely. I eat whole foods as much as possible, but when I do splurge on something processed, it can only have 2 or 3g of sugar per serving.

Nuts are a good take-a-long snack.

For the bread I have to be extremely careful with ingredients. If it contains fruit juice, applesauce, honey, inulin, agave, chickory or molasses, I can't do it. Plain ol' cane sugar not made from beets is fine. Udi, kinnickinic, and a local bakery are the only ones that I can tolerate. Rice Pasta is not a problem but a ton of tomato sauce on top would be. I always treat tomato like a fruit. If you are not lactose intolerant, fettucini alfredo is a safe bet with fm and I make an awesome sauce if you want the recipe.

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Fructose malabsorption is looking like a definite possibility. I had one small box of raisins today (that's just a palm full!) and my stomach has hurt all afternoon. All the fructose lists I've seen label bananas as safe, but I'm having trouble with those too. I think I'll be living off of rice this week. And maybe a rice cake here and there to liven things up.

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Fructose malabsorption is looking like a definite possibility. I had one small box of raisins today (that's just a palm full!) and my stomach has hurt all afternoon. All the fructose lists I've seen label bananas as safe, but I'm having trouble with those too. I think I'll be living off of rice this week. And maybe a rice cake here and there to liven things up.

The more ripe the banana the better. I wait for it to have light spots and can eat half of a medium banana everyday....I share with hubby. Other Fructmals say they can have them only every other day. Dried fruit will always have more fructose. Some can get away with a few dried cranberries in a salad but I usually just stay away from all dried fruit. Rice cakes are a good bet. If you like peanut butter or sunbutter a natural brand with sugar vs. corn syrup could liven them up for you.

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The more ripe the banana the better. I wait for it to have light spots and can eat half of a medium banana everyday....I share with hubby. Other Fructmals say they can have them only every other day. Dried fruit will always have more fructose. Some can get away with a few dried cranberries in a salad but I usually just stay away from all dried fruit. Rice cakes are a good bet. If you like peanut butter or sunbutter a natural brand with sugar vs. corn syrup could liven them up for you.

I have fructose problems too, and was definitely thinking of that reading your description.

I had a banana the other day for the first time in ages, and I had unusually bad gas a while after, sorry if TMI. Looking at the literature the most recent testing found bananas are ok, but some others have found they are a problem, so I am treating them as suspect for me. I also like to eat them just ripe, which is not a good idea for the fructose.

If it is a fructose problem you don't have to avoid all sugars, just excess or free fructose. There is a lot of information out there to help you work out how to test if it is FM. From personal experience I also get highly irritable if I have too much regular sugar, but I don't get any gut symptoms except from fructose and FODMAPS.

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I have fructose problems too, and was definitely thinking of that reading your description.

I had a banana the other day for the first time in ages, and I had unusually bad gas a while after, sorry if TMI. Looking at the literature the most recent testing found bananas are ok, but some others have found they are a problem, so I am treating them as suspect for me. I also like to eat them just ripe, which is not a good idea for the fructose.

If it is a fructose problem you don't have to avoid all sugars, just excess or free fructose. There is a lot of information out there to help you work out how to test if it is FM. From personal experience I also get highly irritable if I have too much regular sugar, but I don't get any gut symptoms except from fructose and FODMAPS.

I like my bananas a little on the green side. I have noticed in the past that if I eat a more than one of those a day or just one big one I feel a little bloated later on. I have been eating them regardless this week, just because I need the nutrients. I went to the cafeteria this morning to grab some more fruit and found a couple that were just starting to get the brown spots. I'm eating one right now in my buckwheat and quinoa hot cereal (Bob's Red Mill is growing on me, but I can't eat it plain... What it really needs is brown sugar!) and so far so good.

Those of you who stick with whole foods: What do you eat on a regular basis? Any nutrients you focus on? 90% of the food I keep stocked in my dorm is high sugar/fructose. Most of my usual gluten-accident-recovery foods are included in that 90%. This week I have mainly been eating rice, rice cakes, Bob's buckwheat hot cereal (I know it's not the safest option out there, but I needed something more substantial) with a little quinoa mixed in, some lunch meat (Oscar Mayer Deli Fresh) and bananas. I picked up some carrots and green beans yesterday which I plan to steam later and have around to add to my rice.

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I like my bananas a little on the green side. I have noticed in the past that if I eat a more than one of those a day or just one big one I feel a little bloated later on. I have been eating them regardless this week, just because I need the nutrients. I went to the cafeteria this morning to grab some more fruit and found a couple that were just starting to get the brown spots. I'm eating one right now in my buckwheat and quinoa hot cereal (Bob's Red Mill is growing on me, but I can't eat it plain... What it really needs is brown sugar!) and so far so good.

Those of you who stick with whole foods: What do you eat on a regular basis? Any nutrients you focus on? 90% of the food I keep stocked in my dorm is high sugar/fructose. Most of my usual gluten-accident-recovery foods are included in that 90%. This week I have mainly been eating rice, rice cakes, Bob's buckwheat hot cereal (I know it's not the safest option out there, but I needed something more substantial) with a little quinoa mixed in, some lunch meat (Oscar Mayer Deli Fresh) and bananas. I picked up some carrots and green beans yesterday which I plan to steam later and have around to add to my rice.

I also like green ends on my bananas..seeme like the sugar in the riper ones turns to acid for me. My Dr. had me try (no fructose diet) not seemed to be my problem. Hope you find a longer list of food you can eat soon.

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gh_soph brought up FODMAPs which may be a good diet for you over the next couple of weeks, then slowly add back foods one at a time to see what will set you off.

http://www.healthhype.com/fodmap-diet-foods-to-avoid-in-ibs-bowel-disorders-with-bloating-and-gas.html

This link give a good description FODMAPs

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If it is a fructose problem you don't have to avoid all sugars, just excess or free fructose.

I seem to have issues with all sugars, best I can tell. I really need to keep a very detailed food journal, but in order to figure it out, would have to try foods that I've been avoiding. UGH! :(

Those of you who stick with whole foods: What do you eat on a regular basis?

Meats, chicken, fish, tuna, beans, nuts, eggs, cheese, veggies,(although I avoid the higher sugar- containing carrots, peas)I make my own chicken soup with green beans and broccoli stalks (better than celery, IMO), which I will eat for lunch for days.

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I seem to have issues with all sugars, best I can tell. I really need to keep a very detailed food journal, but in order to figure it out, would have to try foods that I've been avoiding. UGH! :(

Meats, chicken, fish, tuna, beans, nuts, eggs, cheese, veggies,(although I avoid the higher sugar- containing carrots, peas)I make my own chicken soup with green beans and broccoli stalks (better than celery, IMO), which I will eat for lunch for days.

I'm like you, carrots and peas have too much fructose for me. I can't stand peas so no biggie there but I do miss carrots.

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I always forget that carrots are high in sugar! :angry: They are the easiest, most accessible vegetable for me. I don't usually have a problem with them so I guess I'll just have to test that out tonight. Next time I'm at the store I have to pick up some eggs. I can tell I need the protein and fat and they'll liven up my rice and veggies. I've been holding out on anything that requires a stove or oven (our dorm lounge stove is horrible), but it's time to suck it up and cook.

Thank you all for your help!!

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Have you tried SCD? Specific Carbohydrate Diet. It worked like a miracle from God for me. I wish the same for you. If you look it up and read the book... Breaking the Vicious Cycle it will make much more sense what is happening to your body and it may help. It can not hurt you and if you try it for a month you will know if it will work.

In good health,

Kelly

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Have you tried SCD? Specific Carbohydrate Diet. It worked like a miracle from God for me. I wish the same for you. If you look it up and read the book... Breaking the Vicious Cycle it will make much more sense what is happening to your body and it may help. It can not hurt you and if you try it for a month you will know if it will work.

In good health,

Kelly

I've come across the SCD a few times when researching. It is tempting. I'm hoping to see a nutritionist over my winter break and plan to ask about it. Right now I'm just sticking with a bland diet based around rice, potatoes, chicken, turkey and eggs with some fruit, some veggies and occasionally Udi's bread when I can get my hands on it. I have 'episodes' where I feel horrible for reasons not revealed by my food diary. I'm working with a GI who is testing for Crohn's (upper endoscopy and 2 MRIs inconclusive, awaiting pill cam results). I would like to see a nutritionist sooner but I've already missed so much class for those episodes and GI tests that I'm now obligated to deal with it for the rest of the semester. It seems manageable but another episode is hanging like a anvil over my head.

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I'm having trouble finding a sugar that I can tolerate. I am very sensitive. I react more to some brands than others. I don't have trouble with fruit. Try a whole foods diet. Maybe it's the cc in the sugar containing products that is getting to you.

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If it's sugar you're trying to avoid simply go for the paleo diet. Most forms of the paleo diet have you down below 100g of carbs per day, I'm personally at around 20-30g of carbs per day (rough estimate) mainly only coming from mustard family vegetables, citrus, tomatoes, herbs and coconut milk. Read up a lot about it first however, it's not just as simple as going to your local walmart and buying more meats. Technically the first step would be to stop buying any animal products from walmart again! Unhealthy animals make unhealthy muscles and fats.

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If it's sugar you're trying to avoid simply go for the paleo diet. Most forms of the paleo diet have you down below 100g of carbs per day, I'm personally at around 20-30g of carbs per day (rough estimate) mainly only coming from mustard family vegetables, citrus, tomatoes, herbs and coconut milk. Read up a lot about it first however, it's not just as simple as going to your local walmart and buying more meats. Technically the first step would be to stop buying any animal products from walmart again! Unhealthy animals make unhealthy muscles and fats.

I have read about that one. It was in one of the Celiac books I looked at. I've been planning to try it; just wanted to do some experimentation first. Obviously the experimenting isn't panning out... time to look more closely at paleo.

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When I first found out I had Celiac I followed my diet completly, looking up online everything before I ate it if it was safe. I lost weight, kept it off, felt better. Since Thanksgiving(and I ate a gluten free meal) and I am having the symptoms all over again..Hard to breathe, stomach cramping, pains in stomach..Looking at EVERYTHING closer before eating them, I started eating more salads. "Can it be I cant eat salads now?", I made gluten free cookies with a recipe I found from a gluten free chef..major problems. So now, after reading these posts, I realize I will have to look up the fructose malabsorption you are talking about..Not thinking carrots/sugar can be the culprit..my salad mix has carrots in it! This is going to be a new learning experience for me, or should I say re-learning..I love Hershey candy..How can I "fix" my chocolate craving now?

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I noticed that after starting the diet I would still get sick and couldnt work, move, etc. I thought that my blood sugar was low so I would eat something sugary only to crash horribly after a while. I decided to stop eating refined sugars ( gummy bears, which I'm extremely addicted to, stopped putting sugar in my coffee) and instantly felt a lot better. Also I stopped breaking out in my face. You need to stick to complex carbs that give you a lot of energy and stay away from unnatural sugars. The good thing about the gluten-free diet is that it forces you to eat very healthily.

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I've wondered about this for myself. Can't have ANY fruit. Extremely limited on breads and pastas....should probably omit entirely. I eat whole foods as much as possible, but when I do splurge on something processed, it can only have 2 or 3g of sugar per serving.

Nuts are a good take-a-long snack.

Quoting myself here because things have gotten worse in the past year. Currently I am not able to eat ANY form of sugar. No rice or rice flours, corn or corn flours. Not one speck of sugar in any form. However....probably not the healthiest thing but my only self-indulgence these days....I CAN eat sugar free chocolate.

I have been to an allergist this past year and it seems I have no allergies. Next step is an alternative medicine doctor. Not covered under insurance so I've been putting it off.

I am really healthy otherwise, and actually a little nervous that if I solved the sugar problem I would uncontrollably gain weight again.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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