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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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rgarton

My Stomach Is An Evil Dictator And Need Putting In Line, Anyone Wanna Help?

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Hello guys,

I haven't been on here fr a very long time now, but your always here and ready to help so i'm asking for help.

I've been strictly gluten free for a year and a half since my diagnosis. I also cut out all dairy, soya, tomatoes and peppers. I'm a vegan by proxy. I havent eaten meat since i was 4.

Most mornings I wake up, and within 10 mintues I have bad lower stomach cramps and urgency to go t the bathroom.... Were getting to the TMI bit and i apologise. Its usually a dark brown (I take iron) and i don't know how else to put it but it is like the consistency of soft ice cream, or a cowpat, now formed except a few pieces and so soft but not watery. Its horrible to be blunt.

Some mornings i don't have to go at all, which is delightful, and usually after I've eaten white rice with peas and brocolli the night before. But if i keep eating rice i become constipated and thats not good. So here is my diet

Morning: Breakfast cereal made from rice which is the only cereal i can have.

Lunch: 6 rice cakes, two with avacado and four with sunflower spread and organic peanut butter.

Snack: Apple, Banana or a handful of almonds if i have them.

Dinner: Rice with peas and brocolli, Mashed potato with peas and brocolli, gluten-free pasta with gluten-free/df/sf pesto with brocolli and cucumber.

I also do not drink any caffeine, i drink herbal teas and water. Occasionally elderflower cordial.

I have cut most corn out of my diet as i was having sweetcorn and it improved things for a little while which i was super excited about but it came and smacked my smile off my face. The only remaining corn in my diet is a small section of my pasta is made with it.

I was thinking maybe it was the potato as i can't tolerate any other nightshades, but tbh my gastro issues aren't much better anymore from not having them so i don't even know anymore...

All my hair/make up etc are wheat free/gluten free etc. I'm so careful about CC, it basically isn't possible. I never eat out. I don't even generally go out!

I go to the gym every day because i have osteopenia at the moment and they don't want me taking calcium tablets because of possible heart problems that run in my family. So I'm doing weight bearing excersises to increase my bone density instead which apparently is better for you anyway.

THIS SUCKS. I'm open to all suggestions, please anything... I'm so sick of feeling this way. Of my stomach controlling my life.

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I feel for you -- that's awful. I know how being on a restricted diet and *still* feeling unwell is so infinitely frustrating.

I hate this kind of answer, but my doctor would say you should have more fiber. For what it's worth, you could ground flaxseeds in your cereal or something and see if it helps.

I also add prunes to some of my meals because it makes the whole process of ickiness go faster, but it seems to have no effect on my stool (frequent and tiny -- painless but annoying). I'm not supposed to be able to handle prunes, since I can't eat almost all fruit, but for some magical reason I can.

I've also had some success fermenting stuff to help with digestion. You may be able to add some stuff in if you soak it for a day or two before and add some sauerkraut or pickles or something else with active bacteria as a digestive. I've managed to eat corn as soaked polenta for breakfast. And I can only eat about ten foods total. (I have it with almond milk and cinnamon -- it's delicious!)

I'm guessing you're on the usual digestive enzymes and probiotics most people on the forum go on...if not, they may help. Also guessing you're drinking plenty, but if not that's something to consider.

Anyway, I would say to talk to a doctor or dietician -- even though those people drive me crazy. (My last dietician just printed out something from the USDA food pyramid. There's a *dairy* section. And the chick had celiac herself, albeit DH without any GI stuff. But still -- crazy.) Nonetheless, you may have some other condition they could check for.

Hopefully something in here sparks an idea for you...in the meantime, I really feel for you. If you ever want to see a worse disease, try hanging out on the Crohn's boards (http://www.crohnsforum.com/). I checked it out once, and some of those people are in total and utter agony 24 hours a day and are fed through stomach tubes for weeks, or even life. It's this kind of stuff that makes me grateful I can still manage to go to work. Though it may not be helpful when you feel so bad.

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Do you only eat these every day, or is this just a sample? I have lots of food intolerances, but eat many of my intolerant foods in rotation style. I hope you will find some more foods to add in. I can't do grains, so I do almond flour, nut flours, and buckwheat. I only eat bites of fruits with meals. Meat is the only food that really digests well for me and you don't have that.

Well, I hope your tummy will tame down and that you will get the nutrition you need beside.

Diana

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You stated in your post that you are vegan by proxy. Have you personally made the choice

to be vegan or is it just out of habit because of how you were raised? It sounds to me like

your food choices are very heavy on the carby-starchy side, and getting some fat and protein

in there could help balance you out and slow things down.

I second the probiotic and digestive enzyme recommendation. You might also try thinking

outside the box a little more with your food choices. You don't have to have cereal for breakfast-

you can have fried zucchini, or fried apples with pine nuts, or all sorts of things.

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I get the runs from a lot of rice. So maybe cut back on rice and see if that helps. Take one food out at a time for several days and see if you are better. Fats do me in. So cut back on all fats. Maybe try to eat meat. See if it helps. If it does eat meat. Not beef, too hard to digest.

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Since you are open to all suggestions, I suggest you eat meat. Meat give you complete proteins, which is helpful when you are sick. Your diet doesn't seem to have enough protein in it to me. Maybe some fish would work and eggs. Can you do other grain subs, like quinoa or amaranth? Too much of any one thing is not real good, especially with such a limited diet. It seems like you are depending on rice a lot.

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I don't think this person can eat meat if they haven't ate it since the age of 4.

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I feel for you -- that's awful. I know how being on a restricted diet and *still* feeling unwell is so infinitely frustrating.

I hate this kind of answer, but my doctor would say you should have more fiber. For what it's worth, you could ground flaxseeds in your cereal or something and see if it helps.

I also add prunes to some of my meals because it makes the whole process of ickiness go faster, but it seems to have no effect on my stool (frequent and tiny -- painless but annoying). I'm not supposed to be able to handle prunes, since I can't eat almost all fruit, but for some magical reason I can.

I've also had some success fermenting stuff to help with digestion. You may be able to add some stuff in if you soak it for a day or two before and add some sauerkraut or pickles or something else with active bacteria as a digestive. I've managed to eat corn as soaked polenta for breakfast. And I can only eat about ten foods total. (I have it with almond milk and cinnamon -- it's delicious!)

I'm guessing you're on the usual digestive enzymes and probiotics most people on the forum go on...if not, they may help. Also guessing you're drinking plenty, but if not that's something to consider.

Anyway, I would say to talk to a doctor or dietician -- even though those people drive me crazy. (My last dietician just printed out something from the USDA food pyramid. There's a *dairy* section. And the chick had celiac herself, albeit DH without any GI stuff. But still -- crazy.) Nonetheless, you may have some other condition they could check for.

Hopefully something in here sparks an idea for you...in the meantime, I really feel for you. If you ever want to see a worse disease, try hanging out on the Crohn's boards (http://www.crohnsforum.com/). I checked it out once, and some of those people are in total and utter agony 24 hours a day and are fed through stomach tubes for weeks, or even life. It's this kind of stuff that makes me grateful I can still manage to go to work. Though it may not be helpful when you feel so bad.

Wow okay so this is my very first time on the forum and I have to say that I am impressed with what you wrote here. I have only been dealing with the gastro stuff for about 4 months. It is very tough. I have a hard time with most foods now too. I think I haven't healed much yet as I have only been gluten free for about a week now. It is very difficult but like you said it is manageable and I am so grateful for that. I appreciate what you said about how some people have to eat through stomach tubes and have colostomies. :( Thank you for helping to put things into perspective.

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Wendelann -- it gets better! It helps to have a guilty pleasure to go to when you feel terrible, like a bath and a trashy novel or a marathon of bad TV.

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As others have said, you might be having too much of the same things, and just need to rotate your foods a bit more.

Ethical issues and personal choice aside, if you haven't eaten meat growing up, then introducing it now is probably not a good idea. Or if you do, make sure it's a very small amount (chicken or fish) at first and take good digestive enzymes. Life-long vegetarians don't have the enzymes to deal with meat.

Instead, eat nuts, avocadoes, olives (the good fats) and add flax and such for fibre if you can. I also find too much rice can make me constipated. I also can't do dairy or soy, but am still ok with nightshades (fingers crossed). Try adding some veggies or fruit with breakfast (toast and avocado mmmm....)

Anyway, good luck figuring things out! Hope you feel better

Peg

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Wendelann -- it gets better! It helps to have a guilty pleasure to go to when you feel terrible, like a bath and a trashy novel or a marathon of bad TV.

Ah thanks! It's crazy how life takes a turn sometimes. I do have a pleasure like that! And you're right it helps tremendously. Thank you!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
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    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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