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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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I been gluten free for since October. Every single day my stomach still hurts after eating. Could it possibly be anxiety? I can feel (internally, not with my hands) that when I lay down the bloating is right on top of my stomach so I'm guessing that's my intestines. I had a negative blood test, a positive endoscopy, and genetic testing came back that's I do carry the genes for celiac. If it's celiac than why isn't my gluten free diet working?? I am not getting cross contaminated I shop at whole foods and I specifically buy only products that's are specially made gluten free. Right now I just ate a gluten free bagel and my intestines feel like someone rubbed them with sandpaper and i feel like there is a giant ball slowly inflating. I look like in freaking pregnant half the time. I accepted this crap but I'm getting very angry with why i can't feel better. I can't live my life like this anymore. I don't know what else to do my doctor just tells me to stay on the gluten free diet. I can't work and i don't even think you can go on disability for this... I have to support my son i can't have my fianc

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And I apologize with the bad grammar I'm writing on a phone.

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I been gluten free for since October. Every single day my stomach still hurts after eating. Could it possibly be anxiety? I can feel (internally, not with my hands) that when I lay down the bloating is right on top of my stomach so I'm guessing that's my intestines. I had a negative blood test, a positive endoscopy, and genetic testing came back that's I do carry the genes for celiac. If it's celiac than why isn't my gluten free diet working?? I am not getting cross contaminated I shop at whole foods and I specifically buy only products that's are specially made gluten free. Right now I just ate a gluten free bagel and my intestines feel like someone rubbed them with sandpaper and i feel like there is a giant ball slowly inflating. I look like in freaking pregnant half the time. I accepted this crap but I'm getting very angry with why i can't feel better. I can't live my life like this anymore. I don't know what else to do my doctor just tells me to stay on the gluten free diet. I can't work and i don't even think you can go on disability for this... I have to support my son i can't have my fianc

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Is it possible that you also have another allergy/intolerance as well? Are you still eating dairy? Try cutting dairy out and see how you feel - that's often a common problem for Celiacs as well...

In the meantime - hugs! I know it's a crappy feeling and I hope you find a solution quickly!

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Hi, Heidi. I'm sorry to hear that you are still sick and so frustrated. I totally agree with Melissa to try cutting out dairy. The other thing that comes to mind is fructose malabsorption. You might look into that if cutting out dairy doesn't help.

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Thanks guys. I been making homemade chicken and rice soup and I seem to feel better the next day. But anything other than rice and steamed vegetables and salad seem to make me feel horrible. I know I can't tolerate soy and dairy that well or eggs. Can people be intolerant to sugar? Candy and sweets make me feel really bad too.

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Thanks guys. I been making homemade chicken and rice soup and I seem to feel better the next day. But anything other than rice and steamed vegetables and salad seem to make me feel horrible. I know I can't tolerate soy and dairy that well or eggs. Can people be intolerant to sugar? Candy and sweets make me feel really bad too.

Absolutely!! Omg, eating sugars messes me up so bad, just as bad as gluten does! Its hard bc I have Such a sweet tooth, but I can't tolerate any of them. Well that's not true - I can eat what diabetics eat sweetener-wise, and do well. (well I could until I developed issues with corn and learned that my go-to sweetener fructose is derived from that and now messes me up!) I've been off sugar for 25 years and getting off it changed my life. Seriously. Try investigating diabetic-approved sweets and see if you feel differently. If not, eliminate it entirely.

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If you can't eat sugar well, you really, really, really need to look into fructose malabsorption. Chicken and rice soup is very low fructose if you use white rice. So are most steamed veggies and salad greens.

The Wikipedia article on fructose malaborption isn't too bad.

http://en.wikipedia.org/wiki/Fructose_malabsorption

This site is by a woman with fructose malabsorption who set up a wiki for reference.

http://hedra.pbworks.com/w/page/11325076/FrontPage

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If you can't eat sugar well, you really, really, really need to look into fructose malabsorption. Chicken and rice soup is very low fructose if you use white rice. So are most steamed veggies and salad greens.

The Wikipedia article on fructose malaborption isn't too bad.

http://en.wikipedia.org/wiki/Fructose_malabsorption

This site is by a woman with fructose malabsorption who set up a wiki for reference.

http://hedra.pbworks.com/w/page/11325076/FrontPage

I find fructose malabsorption very interesting, but it's different from what I have in that fructose was a go-to for me for many years to avoid glucose and other sugars. It's just with my recent corn issues that I can no longer tolerate it, as it's corn-derived. I post this so that the OP understands that there are a couple different types of sugar intolerances, one where you avoid fructose, the other where fructose is fine as it causes a slower rise in blood sugar levels (which is along the lines of what diabetics require from sweeteners). There are a host of foods I avoid due to their glycemic impact but it's too lengthy to go into here. If you discover in the end that your sugar issues align with what I've described, please do message me and I can send you the whole diet (the other foods will also make you feel lousy too). Good luck :)

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Good point! I'm kind of like you. I crave refined sugar badly, eat too much, end up tired and woozy. I don't think I'm as sensitive because I'm fine with fruit, honey, dates, and other unrefined sugars in reasonable amounts. My mom has fructose malabsorption and gets pain and bloating from fructose. It's pretty funny because I'm reaching for honey for my coffee and she always has a jar of dextrose. :lol:

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That's interesting I'll have to look into that. I can't tolerate popcorn, tortillas, raw corn, without getting a severe case of indigestion and flatulence and nausea. When i drink soda, same way. I was ok before but now lately, I'm extremely sensitive to everything! And i get scared because i don't know which symptoms are normal for celiac and which ones aren't. I have no one to really ask. I'm the only one in my family whose been diagnosed with it. I believe my mom and brother could possibly have it because my mom, most of my life, has had alot of my symptoms now that i look back. But she refuses to believe it's possible. So I'm kind of left in the dark here. Sometimes i just feel like staring in the dark. What if its not even celiac disease. How the crap do you tell? Negative blood work, there was something positive in my endoscopy (said a raises number of something indicating that there is possible celiac disease) and the genetic said positive for the celiac genes. But then it also said anyone could have those genes! Even normal people walking around who don't have it. I never get a clear answer :[ and i spent all that stinkin money getting tests done to get such an unclear answer.

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I was very sick when I was finally diagnosed. I was regularly not making it to the bathroom. I couldn't leave the house without fear of a huge embarrassment. I couldn't work. I couldn't take care of my kids properly. At first I felt so much better just eliminating cereal and bread I was elated. Then I realized how much harder it was. I eliminated all the other things and found that I was still reacting to gluten free foods which most of the people who post on this forum don't react to. I couldn't figure out what was going on, and I was still quite sick.

Finally my GI doc told me that some celiacs react to smaller amounts of gluten than others. Some can't even tolerate the tiny amounts allowed into gluten free foods. They are better off eating a diet consisting of produce and meats, a whole foods diet. Not one purchased at the Whole Foods store, but one that doesn't come out of a package or jar. That was the beginning of returning to better health for me. I'm doing better now than I was in my teens.

I am careful about keeping a food journal and only adding one new food per week. Still, sometimes a previously safe food will become unsafe due to some change made by the suppliers, and then it is very hard to figure out what. I have to do careful elimination/challenge diets of everything in my diet, hoping that I guess the right thing before I get too sick.

Your problems could be one of the other things referred to above, or something else, but you should consider super sensitivity to low levels of gluten too. It is pretty easy to find out. For a couple of weeks eat only produce and unprocessed meat. Keep away from produce grown on straw like mushrooms. If that improves things, then you may have to look into very low level cc more carefully.

I hope you figure out what is causing your continued problems. I know how frustrating it can be to remain sick and not have the answers you need to get better.

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That's interesting I'll have to look into that. I can't tolerate popcorn, tortillas, raw corn, without getting a severe case of indigestion and flatulence and nausea. When i drink soda, same way.

Hmmm, it definitely sounds like corn could be an issue for you, and thats a common one. Is the soda you drink sweetened with high fructose corn syrup? Like I said before it's common to have a number of sensitivities come to light once you remove gluten, I don't know why. Just last night I had another a-ha moment when I realized I'm having problems with onions! I'd thought I was having digestive issues because I was eating a lot of beans - I figured it was normal to be gassy if you're eating a lot of them - but when hubby prepared the same beans without onions (he just forgot to add them as he usually does!) I didn't have any problems. It was the onions all along and I had no idea. I've been suffering for 2 months for no reason! So we basically have to be detectives and sometimes along the way the answers just come when you least expect it. Hope you have some more a-ha moments of your own soon :).

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It looks like you *might* have an additional intolerance? The corn sounds like a likely one? If sweets bother you, the fructose might be something to consider too?

I wonder about the fructose malabsorption too, for myself. In reading the link I found a few foods that I've had bad reactions to.

I also wanted to mention..if you have damage in your intestine you may react badly to the hard to digest alternate grains? Your mention of eating a bagel and not feeling good could be that..or what did you have ON the bagel?

Some of this is so tricky to figure out, and some of the reactions are just because you need to do some healing. Are you keeping a food journal? It can help sort things out.

I completely understand your frustration!

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Hmmm, it definitely sounds like corn could be an issue for you, and thats a common one. Is the soda you drink sweetened with high fructose corn syrup? Like I said before it's common to have a number of sensitivities come to light once you remove gluten, I don't know why. Just last night I had another a-ha moment when I realized I'm having problems with onions! I'd thought I was having digestive issues because I was eating a lot of beans - I figured it was normal to be gassy if you're eating a lot of them - but when hubby prepared the same beans without onions (he just forgot to add the. As he usually does!) I didn't have any problems. It was the onions all along and I had no idea. I've been suffering for 2 months for no reason! So we basically have to be detectives and sometimes along the way the answers just come when you least expect it. Hope you have some more a-ha moments of your own soon :).

AHA! Onions. Another piece to the puzzle? :o

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Not sure if anyone mentioned this, but you may ask to have your stomach acid levels checked. This was happening to me ALL the time. And since you seem to feel better when you only have a salad or something else very low protein, it could be that your acid levels are too low (a very common problem for those with celiac). Once I started taking a HCl supplement with meals (I eat mostly protein and veggies anyway, so I take it with every meal), I noticed an amazing difference. I'm not sure why most traditional doctors tell everyone that it must be HIGH stomach acid causing their symptoms - they will tell you to take prilosec or whatever without even doing any testing. For some, that is the problem. But for others, like me, it was the opposite. The symptoms are almost identical. I did a google search on low stomach acid vs. high stomach acid - came across some great information. Hope you feel better soon!

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AHA! Onions. Another piece to the puzzle? :o

My mom who has the fructose malabsorption reacts terribly to onions. They have a fructose polymer called fructans in them.

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I don't do too good with onions either. I'm on prilosec for too much stomach acid and I been addicted to pepto Bismol and it backs me up terribly and it feels horrible. I think it's alot of things. What about leaky gut? Could that be an issue with me as well? Alot of the time probiitics send me running to the bathroom and I usually thought that it's just cleaning me out until I read that to be a symptom of leaky gut as well. I actually have alot of those symptoms but I don't know how to fix it. I have to wait for new insurance to go back to the doctor.

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AHA! Onions. Another piece to the puzzle? :o

Yes! You'd think at this stage it wouldn't surprise me but it's always the foods you least suspect, isn't it. I have to research what's related to onions and make sure there aren't other things lurking...

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Hmmm, I don't know anything about leaky gut. Anyone else?

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I don't do too good with onions either. I'm on prilosec for too much stomach acid and I been addicted to pepto Bismol and it backs me up terribly and it feels horrible. I think it's alot of things. What about leaky gut? Could that be an issue with me as well? Alot of the time probiitics send me running to the bathroom and I usually thought that it's just cleaning me out until I read that to be a symptom of leaky gut as well. I actually have alot of those symptoms but I don't know how to fix it. I have to wait for new insurance to go back to the doctor.

Heidi,

Somebody above mentioned checking into LOW stomach acid. I would seriously check into this. I was on prilosec, nexium, tums, etc. for years. And even after going gluten-free/CF/SF it didn't completely clear up. Turns on my problem has been low stomach acid. And I had big clues years before but I'd never heard of such a thing. Now I take HCL with digestive enzymes with my meals, and I haven't had to touch pepto, tums, or any of the other things in over two years.

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Hi, so sorry you're not feeling better! I've read so much, though, about people starting the gluten-free diet and then finding out that other things are reacting badly for them. Some people can't handle the gluten-free replacement foods like bread, pasta and bagels-- it's just too much starchy weirdness for your body to recognize that it's different from wheat.

One explanation I've seen, is that your body is so inflamed and wrecked up, that you just need a break from everything it has become sensitive to, to give it a chance to heal. The one really good "elimination" diet is also called "rare foods" or "caveman" diet, and it says basically you are better off eating things your body is not used to ( and therefore has not developed a sensitivity to) for 1-3 months. That way it has time to settle down and heal. Then you keep a food diary and add the foods back in, one at a time, and watch for your reactions to it. That way you can tell exactly what it is that bothers you, other than gluten.

It sucks to have such a limited diet for 3 months, but on the other hand, it's ONLY 3 months, compared to misery for the rest of your life.

Also, once your body has calmed down, often you can start tolerating things again that used to bother you before. You might be able to handle corn, dairy, etc. after a year or two.

Here's a link to that elimination diet article: http://www.drcranton.com/elimination_diet.htm

Hope you feel better soon!

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Thanks Avalon

that's a great piece of advice. I will definitely try that! And the low stomach acid I will ask my doctor. Its confusing because I have acid and a sore throat when u wake up sometimes. Wouldn't that mean I have too much acid?

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Its confusing because I have acid and a sore throat when u wake up sometimes. Wouldn't that mean I have too much acid?

Not necessarily. Here is a link to one article. According to some other things I've read scattered around, low HCL can cause a condition where the sphincter at the top of the stomach can loosen up, causing the regurgitation of stomach acid. At one point I had started waking up sometimes choking on my own stomach acid after I would inhale it while sleeping. Terrified me every time. However, what I would suggest would be to try some enzymes (stopping the prilosec during the trial obviously) and see how you feel. If it appears to help, next time you visit a doctor, bring this up along with your experiment and ask to be tested for Hypochlorhydria. I have a specific brand that I've found works well for me, and if you like I'll post the link. I prefer this specific brand because I've never experienced any cross-contamination issues for gluten, and it also contains some other digestive enzymes.

On a related note though, don't take more than the recommended supplement amount as too much stomach acid can (obviously) cause damage.

"According to Jonathan Wright, MD, another cause of heartburn can be too little stomach acid. This may seem to be a paradox, but based on the clinical experience of a few doctors such as Dr. Wright, supplementing with betaine HCl (a compound that contains hydrochloric acid) often relieves the symptoms of heartburn and improves digestion, at least in people who have hypochlorhydria (low stomach acid). The amount of betaine HCl used varies with the size of the meal and with the amount of protein ingested. Typical amounts recommended by doctors range from 600 to 2,400 mg per meal. Use of betaine HCl should be monitored by a healthcare practitioner and should be considered only for indigestion sufferers who have been diagnosed with hypochlorhydria." (http://www.evitamins.com/encyclopedia/assets/health-condition/indigestion-heartburn-and-low-stomach-acidity/vitamins-and-supplements)

"Hypochlorhydria arises when the stomach is unable to produce hydrochloric acid (stomach acid). It is a greatly overlooked cause of problems - to the extent that in the UK at least nobody is testing or looking for it. It is especially common in those with ME/CFS/FM, and is known to be associated with childhood asthma." Dr. Sarah Myhill, MD. (http://www.prohealth.com/library/showarticle.cfm?libid=13388)

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Did your stomach ever have spasms? I've woken up with my stomach lurching like I'm throwing up but I'm not. Or I have woken up swallowing a little bit of vomit. Its horrible

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