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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.

Just Diagnosed: How To Keep Eating Enough?
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GFshay    5

I just started my gluten-free diet a bit over a week ago and glutened myself somehow a few days ago. I was already starting to feel much better till that happened, and since then I haven't been back to that good place yet. Although I've worked hard at being careful with what I eat, I'm back to my old stomach symptoms (bloating, pain, random bouts of "D"). So in order to function, I've gone back to my old habits before being diagnosed...

Before knowing I had Celiac, I would usually eat something "safe" for breakfast and then only snack enough to get me through the day (maybe a yogurt or apple w/peanut butter) until I got home or somewhere I felt safe enough to eat dinner. I'm doing that again, and loading up on pepto bismol and imodium whenever I have issues. I'm in this cycle of taking a bunch of meds one day, being stopped up for the second day and restricting my intake out of fear, and then having issues all over again the next day regardless.

My question to the wiser Celiacs out there: What helped you keep eating enough when you were first starting out? How do you stabilize your digestion when it's still funky? A lot of people's posts here have terrible complications and a lot of hopelessness. I'd like to encourage some replies that might have some hope in there somewhere!

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sa1937    324

Before knowing I had Celiac, I would usually eat something "safe" for breakfast and then only snack enough to get me through the day (maybe a yogurt or apple w/peanut butter) until I got home or somewhere I felt safe enough to eat dinner. I'm doing that again, and loading up on pepto bismol and imodium whenever I have issues. I'm in this cycle of taking a bunch of meds one day, being stopped up for the second day and restricting my intake out of fear, and then having issues all over again the next day regardless.

My question to the wiser Celiacs out there: What helped you keep eating enough when you were first starting out? How do you stabilize your digestion when it's still funky? A lot of people's posts here have terrible complications and a lot of hopelessness. I'd like to encourage some replies that might have some hope in there somewhere!

I did exactly the same thing, especially if I had to go somewhere...eating something "safe" for breakfast and then not eating much until I got back home. And taking Immodium as needed. It took me almost six months to consistently feel good every day without issues. Well, that is until Mon. when I decided to see if I'm still lactose-intolerant. And the answer is YES so the past couple of days remind me of the not-so-pleasant "bad old days". I figure it's just taking time to heal. Even after going gluten-free on April 9, I still continued to lose some weight. It's hard to eat when you feel like crap.sad.gif

So I have no words of wisdom on how to stablilize your digestion but you're really very new to eating gluten free. Give it some time...I wondered if I'd ever have a good day. But I definitely think there's hope and as long as I'm really careful, I feel great (Mon. not withstanding). Are you also dairy free? If not, you might want to give it up for awhile, too. Hope you feel better soon!

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GFinDC    609

Well, for starting out on the gluten-free diet:

Don't eat any sugar.

Don't eat any dairy.

Don't pull little girls pigtails or dip them in the ink well. Unless it's Friday and you're bored.

Don't eat any soy.

Don't eat any processed foods.

Try a pro-biotic once a week.

Eat like a monk but limit the wine to normal people levels.

Don't leave home without your Pepto Bismol and aspirin.

Don't jump out of a perfectly good airplane.

Carry around some Altoids peppermints for gas relief (sorry processed but ok exception).

Consider eliminating nightshades after 3 months if things don't get better, or corn, or rice, or coffee, or tea, or etc; etc; etc.

Remember to check out the recipe section here for ideas on great gluten-free foods you can make yourself.

Don't smoke crack.

Don't take multi-vitamins or medicines with gluten or wheat grass juice or malt or lecithin or some such hidden poison.

Don't kiss polluted gluten eaters till they brush.

Don't feed pets gluten foods unless you wash your hands every time.

Try some digestive enzymes.

Try an HCL Betaine occasionally, especially if bloating is too much.

Remember Mr. Spock controlled his body with Vulcan mind control discipline. Maybe it really works? Ahhh, maybe not.

Remember if you stick to a whole foods diet you are relieving your body from having to process lots of chemicals, food colorings, preservatives etc. That's a good thing as long as you don't own stock in a chemical factory.

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sa1937    324

Well, for starting out on the gluten-free diet:

Glad to see your sense of humor is still intact! laugh.giflaugh.giflaugh.gif

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SGWhiskers    45

I made extras of dinner every night for lunch the next day. It was a little boring, but safe.

I drank a good portion of my initial calories in the form of Protien shakes that agreed with me.

Set aside what is "breakfast" food and what is "lunch" food. If it works for breakfast, it can be a good snack at 3:00. Who cares if you microwave an egg.

Simple meals with 1-5 ingredients at a time. If you are living in fear of your food, go safe and boring for a while and spice it up as time goes on.

If you can handle it, keep a jar of peanutbutter in your desk drawer. It is great for when you are getting low on blood sugar.

As time goes on and you start to recover, you will probably discover you are famished and need to eat almost constantly. I kept fruits and fresh veggies along with nuts around non stop.

The advice from the previous poster was good. There are some wonderfully helpful people here.

Best wishes on getting onto a regular meal schedule.

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realmaverick    21

I'm struggling like crazy. I'm eating way too much junk. Though if it were not for processed gluten free foods, I'd have starved to death.

I personally couldn't agree with the advice to cut out all processed foods, sugary foods etc. It's hard enough gutting out gluten, surely going to that extreme should be taken in steps? I'd honestly be torn between being ill or eating such a diet.

For me, gluten free is enough for now.

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T.H.    404

I had to go whole hog, but my dietician has a way that she says encourages success, so maybe that?

Basically, she encourages her celiac patients to start by trying out gluten free dishes while still eating their other foods. So you do the hard work of finding recipes, trying them out, finding products, etc... before you get rid of the gluten.

Then after that, you drop the gluten and eat these foods you've already tried out. That way, you're not trying to do all the difficult work at the same time, but in pieces, so you're more likely to succeed.

She also does this for getting her celiac patients off of dairy and onto organics, just try the new recipes/foods first, then change over.

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GFshay    5

I made extras of dinner every night for lunch the next day. It was a little boring, but safe.

I drank a good portion of my initial calories in the form of Protien shakes that agreed with me.

Set aside what is "breakfast" food and what is "lunch" food. If it works for breakfast, it can be a good snack at 3:00. Who cares if you microwave an egg.

Simple meals with 1-5 ingredients at a time. If you are living in fear of your food, go safe and boring for a while and spice it up as time goes on.

If you can handle it, keep a jar of peanutbutter in your desk drawer. It is great for when you are getting low on blood sugar.

As time goes on and you start to recover, you will probably discover you are famished and need to eat almost constantly. I kept fruits and fresh veggies along with nuts around non stop.

The advice from the previous poster was good. There are some wonderfully helpful people here.

Best wishes on getting onto a regular meal schedule.

Those are great bits of advice. I am a complete sugar addict, so cutting that out right away might be a tough goal. Not something I can do right away, at least. I'm having enough trouble eating enough as it is.

I am currently reducing dairy to be safe, but have always been able to tolerate it with a Lactaid pill. My doc didn't seem to think that would change after going gluten-free, except possibly for the better. I find that having some protein from dairy at lunch helps keep me fuller (I already feel famished during the day... fast metabolism... so your advice, SGWhiskers, is helpful! I'm working on using nuts and peanut butter instead of it though.

I'm training to be a therapist and usually have clients right after lunchtime, so I find myself snacking as minimally as possible so I don't have any sort of attack in the middle of a session (my worst fear). Then I'm starving by 4 or 5 when I might finally have a break. I had been drinking Naked juice protein drinks, but wasn't sure if it was upsetting my stomach. What protein drinks would you recommend? I honestly think back to when I had my wisdom teeth and could only have applesauce and Ensure, and I remember feeling really good. Maybe just some Ensure for now is a good idea...

What protein drinks would you recommend

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mushroom    1,205

I drank a good portion of my initial calories

Me too, in the form of scotch to cauterize my gut :lol: :lol:

Seriously, it was the only thing that would stop the bloat. Not that I would recommend anyone else do that :P , but that was my personal solution. Sometimes even now I revert to that when nothing else works. But it has to be neat - no ice, no water, no soda, just burn the heck out of it :blink::unsure::rolleyes:

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GFinDC    609

Glad to see your sense of humor is still intact! laugh.giflaugh.giflaugh.gif

Ahhh yes, it comes back when I am feeling well and get some sleep. That could be a bad thing... :)

I'm struggling like crazy. I'm eating way too much junk. Though if it were not for processed gluten free foods, I'd have starved to death.

I personally couldn't agree with the advice to cut out all processed foods, sugary foods etc. It's hard enough gutting out gluten, surely going to that extreme should be taken in steps? I'd honestly be torn between being ill or eating such a diet.

For me, gluten free is enough for now.

Hi RealMaverick (Paul),

I agree that the whole foods diet can be a major change for some people. Heck, it was a big change for me. You have to work through things at your own pace of course. I had been a convenience food junkie for years myself. Although I was vegetarian for 5 years at one time. Then my veggie wife found a doctor and took off for the veggie hills. So I went back to eating whatever I wanted and ended up here. I changed to cooking more and more of my meals from scratch and ditched most of the processed foods. I have intolerances to nightshades and soy so there are not many of them I can eat anyway. I had a lot of bloating for a while after going gluten-free, and cutting out sugar helped it. Lots of things helped it really, and it took a while for me to figure out the things to avoid. So, yes, it is a big change, but it does payoff. There are no hard rules about these changes either, you can try them as you wish and for as long or as short a duration as you wish. Probably a 2 week period is enough to see some positive changes if they are going to happen. One thing to watch out for though is that if you are intolerant to multiple other foods then you can think something isn't helping because you are already reacting to something else. Say there are 2000 white cars in a parking lot. It can be hard to find the one that's yours. If there are only 5 white cars in the same parking lot, you can find yours much easier. Same with food intolerances, if you are eating 50 foods/ingredients each week, then how can you tell easily which is causing a problem? That's where simplifying your diet comes into play and can help you identify a food problem. Just food for thought, as they say. We all start somewhere on this diet and learn as we go.

Those are great bits of advice. I am a complete sugar addict, so cutting that out right away might be a tough goal. Not something I can do right away, at least. I'm having enough trouble eating enough as it is.

I am currently reducing dairy to be safe, but have always been able to tolerate it with a Lactaid pill. My doc didn't seem to think that would change after going gluten-free, except possibly for the better. I find that having some protein from dairy at lunch helps keep me fuller (I already feel famished during the day... fast metabolism... so your advice, SGWhiskers, is helpful! I'm working on using nuts and peanut butter instead of it though.

...

I can't help with the protein drinks, I never do them myself. How about a boiled egg instead? Or chicken or beef? Or make some guacamole and have it with veggies? Just some other ideas.

As your gut heals and your villi recover, they may start making lactase enzyme again. Which would help you digest lactose sugar in dairy. Not all people recover that ability though, and there are quite a few adults who can't digest lactose in the general population anyway. There is also casein intolerance to consider. Casein is a protein in dairy, and some people are intolerant to it. There are no good pills for casein intolerance though.

Me too, in the form of scotch to cauterize my gut :lol: :lol:

Seriously, it was the only thing that would stop the bloat. Not that I would recommend anyone else do that :P , but that was my personal solution. Sometimes even now I revert to that when nothing else works. But it has to be neat - no ice, no water, no soda, just burn the heck out of it :blink::unsure::rolleyes:

Ah ha, "The Ravenwood Solution", sounds like a spy thriller! Sounds captivating too. :D

PaulsArt

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i-geek    56

I try and get protein and fat at breakfast (in the form of peanut butter on my rice cakes, eggs, cheese, whatever) so that I'm off to a good start.

Lunch is almost always leftovers from the previous night's safe and usually homemade dinner (e.g. last night's was gluten-free pasta salad with canned tuna, canned beans, diced cucumber and garlic-red wine vinaigrette). When I was first gluten-free and suffering from months (years, probably) of nutrient malabsorption, I was craving things like avocados for the fat and vitamins so I would often bring a whole avocado in my lunch and slice it up on my food (in fact I did this today since it went well with the tuna-pasta salad). I always make sure I bring a yogurt and piece of fruit or a Kind or Lara bar for an afternoon snack. If you're limiting dairy, So Delicious makes a good coconut milk yogurt. I ate that and soy yogurt for the first couple of months until my gut could handle dairy again.

I like to have a cup of herbal tea in the afternoon and find that ginger or peppermint tea help settle my stomach. I'm currently addicted to Tazo's Spicy Organic Ginger and Refresh (mint) blends.

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cap6    85

No great words here as I am still struggling just a couple of things that have helped me. I always have a Muscle Milk with me for emergencies. It is a high protein drink that is pretty easy to find in the stores & is marked gluten-free. Also I make up a weekly menu for all meals & snacks. It seems to help having a paper tell me what to eat rather than being hungry and not beoing able to think of anything to have. Even if I can't eat all of the food items (quantity is still a big problem) at least I have a start on eating the right stuff.

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Marilyn R    239

Like previous posters (great advice everybody) I have a problem with breakfast but find that if I make myself eat something decent in the morning, I have fuel for a better day. Drizzle or spritz a glass bowl with olive oil, whip a cracked egg or two with water or alternative milk of your choice, and s & p & microwave for a minute. Meanwhile cut up a piece of fruit, and safe peanut butter if desired.

I pack a lunch 365 days a year, and pack one if going to a party. Check the camping sections at discount stores for one with a washable, removable insert. You can search the forum for excellent snack and/or lunch ideas. I have a huge container of protein shake that I purchased and is supposed to be gluten-free/Soy Free/ Dairy Free, but haven't tried it yet because I'm chicken about trying something processed. Lifetime Life Basics. Hope that helps...I researched quite awhile before buying it.

Real food is starting to taste so much more delicious. Whole cashews might be a good snack for you ... I haven't had a problem with Planters Whole Cashews, and they're delicious.

Now that I'm finally on an even keel, I'm ok with having to prepare every meal myself or with someone I trust. I feel like my cup isn't turned upside down, it isn't half empty or half full, I feel like I've come to terms with my cup, and don't want to upset it, so I stick with whole foods and experiment with new dishes and cuisines that involve trusted ingredients.

My experience was that at first this was overwhelming, going to a grocery store was a hideous experience, but became better. Now I can breeze through a grocery store, because I make a weekly trip to the meat market and vegetable stand, so I don't need much at the grocery.

So.. I started getting better and feeling hope, then started developing/or finding more food/additive intolerances. Then I started getting angry about it. I think that's normal. Tonight we had grilled salmon marinated in tangerine juice and crushed (almost rotten) strawberries with EVO and S&P. The salmon was the best I ever had. My DBF asked me to write down the recipe because it was so good. You're in a discovery period. I hope that you discover that it all becomes second nature and you discover a better world. You know the old cliche'... a door closes and a window opens.

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sb2178    100

You don't have to take out the processed foods forever, just try 3 or four weeks without to help heal and get a baseline "wellness" before you add anything processed. Turns out, every gluten free bread I've tried (all three of them) give me mild stomach aches. Maybe yeast...? Not something I would know if I had been eating it all along. It definitely reduces variables and lets you control what you are eating. Make up a few pots of food and freeze portions for a couple of weeks if you don't have time to cook more often. Eating away from home is something that I would avoid if I were to do the first two months over again. (I do now, but it would have been better to avoid it then.)

Going low fiber (meat over beans; white rice over brown; no fruit or veg skins; etc) can help a bit temporarily but it's a short term solution to situations like travel. Early on, sometimes it's easier on your system to eat only cooked fruits and vegetables. Again, if you still have issues, try cutting out the dairy completely. It's another variable, and fewer stressful variables may help. Buy some flowers. Pet the cat. Take a walk (near toilet facilities ;-) ).

In terms of weight, make sure you're getting enough fat and starch. Olive oil, nuts, avocado, etc. Rice, potatoes, corn, etc. Protein drinks are okay (except for their inherent "eww" factor), but real food is better if you can pull it off. I'm still not totally stabilized months out, so just understand that it may take a little time. I was crazy hungry for maybe the first three weeks, so eating enough was not a problem. Good luck...!

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