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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.

The Paleo Diet?!
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Ashy555    0

What are your thoughts on starting on the paleo diet in helping Coeliac disease.

 

I started on the paleo diet about end of October last year just after being diagnosed and avoided ANY take away what so ever and i actually started to feel really good. I read a book about paleo and its effects and it mentioned how great it was for people with coeliac to stay away from grains. I was on it properly up until christmas only eating omlettes for breakfast, salads or meat and veges for lunch and meat and veges for dinner. I found it so easy to follow solely because i was that depressed i barely thought about food or eating junk plus i had the support of my family(my mum was the one who suggested it) Now all my dad does is cook, its fantastic.

 

Unfortunately I then had indian take away one night a few nights after christmas(they assured me it was gluten-free) and i went home to experience one of the worst nights. I am assuming i have become more sensitive the more i dont eat it. I was vomitting for about an hr and pretty much curled up on my bed unable to lie flat and rocked myself to sleep. It was almost excrusciating. Ever since that night i have not been the same. I have been EXTREMELY fatigued.

 

 I went and saw a dietitian probably about 3 months too late. Complete waste of money. Cost me $100 and It seemed like i knew more than she did about coeliac disease and when i told her how i was feeling a lot better on paleo... She told me not to follow it. The only Excuse she could reply to that with was....'i dont think the paleo is very good for you as years and years ago on the caveman diet.. they only lived till they were 30-40 max' AND THATS IT... I was like are you kidding me... can you back that up with some more evidence?! You think all these introduced processed sugars, preservatives and chemicals is what is keeping us alive until we are 80. Im pretty sure that is modern medicine. It was disease that killed those people so many years ago, not fresh veges and meat. I know dietitians believe in grains but when i eat them they dont seem to make me any better. I told her that too.. but she didnt seem to listen to how i was feeling.

 

I have been trying to start back on the paleo but its been so hard as i have started to overcome my depression and found myself a little bit happier.. So when i have the energy usually on a weekend i will make my favourite shelf fresh rice noodles..  I can't seem to stop eating them, unfortunately my FAVOURITE rice noodles are half wheat flour/half rice flour but these ones are almost as good. But besides that has anyone else here seen a dietitian before and what was your experience?

 

Anyone completely given up grains while trying to heal?

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EricaM15    1

I had to completely eliminate grains as well and found I feel best on a relatively strict raw vegan diet, which I mentioned in a thread I posted earlier. I've found I'm sensitive to grains, animal products, and legumes, so I feel best on a strict diet of fruits, vegetables, nuts and seeds. It doesn't necessarily have to all be raw, but as a busy college student, I don't always have the time to cook and raw is simply more convenient at times. I feel better than I've ever felt, though I still struggle occasionally because my body is still adjusting. I think you have to find what works best for your own body. Definitely stop eating the rice noodles--especially if you're finding you're feeling addicted to it. When I develop an addiction to a food, it's usually a sign to me that I'm intolerant of it, which I've found to be accurate every time thus far. Also, ingesting any wheat can be harmful to a person with Celiac.

 

I've personally never nutritionist or dietician for my Celiac. I officially don't have Celiac, as I was never formally diagnosed, but I have several symptoms of it and I'm sure I have it; I simply follow my own instincts and do what I feel is best for my body.

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Takala    413

Yes, gave up grains completely while "trying to heal," and went very, very low starch on a variation of the Specific Carbohydrate Diet (which I had to tinker with quite a bit, as the list of good foods at times was either contradictory or here in the USA we had different ingredients in some of the processed goods. And I couldn't get along with yogurt for quite a while.)  

Finally re introduced some grains after about 4 or 5 years, had a honeymoon phase, then as I age and become more sensitive, I've taken a lot of them out again, or limit them to certain brands and types of things. 

 

Dietitians (at least the majority of them) are still perpetually stuck on the cereal this and toast that. 

 

"Paleo" has a lot of nuts and seeds, plus the potatoes (they prefer sweet potatoes) which one can do quite a bit with.  If I make a bread type food out of nut meal, and seed flours and sweet potato flours, with eggs and oil, that is technically "paleo."    I am not all the way there, because I am still eating some rice and rice products, but I am definitely lower grain content than a lot of celiacs/gluten intolerants.  Experimenting with how this effects my physical stamina has been interesting, now that there are athletic blogs and sports blogs that study this and talk about it.  

 

We had a gluten free Indian food restaurant down in the city, and the owner knew how to cook it, but, it closed. :(    However, this has forced me to adapt a few recipes for when I just have to have some chicken and vegetables in a yogurt/cream sauce.  I had to make my own curry powder, but it was successful.  If you do searches on recipes on the internet, you can find ones you can adapt to your own uses.  I highly recommend not using any commercial curry powders, or garam masala spice, but taking single gluten free spices from a reputable company and blending them yourself, to avoid gluten or any spice you don't get along with. 

 

Oh, and of course ancient people only lived on average to 30 or 40, they didn't have any concept of modern germ theory, they had no antibiotics, they had no way to recover from severe injuries so if they got injured killing their meat sources they were goners, if they had a pregnancy go wrong they were goners, too.   I just love how some people just don't remember a thing they might have been taught about human anthropology.  Wheat has only been cultivated for a few thousand years, is not the major grain for much of the world, rice in Asia and corn, amaranth, and quinoa in America were more predominant a few hundred years ago,  and to assume we are all adapted to it when we are stressed by environmental toxins or other things is a bunch of... ridiculousness. 

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GottaSki    459

I too stumbled into eating basically paleo as I found all the foods I am intolerant of - I can't do any seeds and no nuts except almonds so I can't eat many "paleo" recipes without a few substitutions.

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bartfull    565

I am going to try it. Ever since the cookie crumb incident a month or two ago, I have been struggling. I had gotten corn starch back, but now it seems I have lost it again. Right now my jaw is just about clampped shut so I have been eating gluten-free organic yogurt, but as soon as I can open it again I am doing away with all sugar, all grains, and will be living on meat and eggs and vegetables.

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beachbirdie    43

I have completely given up grains, and it wasn't until I did so that I started to feel really good.  A nice side effect is that I also lost 35 pounds, without any effort or thought whatsoever.  On top of that, I am guessing my generalized inflammation has gone way down; I no longer experience the swelling/fluid retention I used to have.  I used to wake up in the morning with slits for eyes, my face was so puffy.  NO MORE!

 

I am sort of paleo/primal though I very occasionally indulge in a crunchy treat made from rice flour.  I also have eaten ( not more than twice in a month) regular potato, though I'm finding that sweet potato fries and sweet potato hash browns are VERY MUCH to my liking!  I used to get horrible carb cravings in the mid-afternoon and would raid the kitchen scrounging all I could find.  I no longer experience this in ANY WAY!  I was also a sugar addict, and since giving up refined sugars I no longer crave sweets.

 

I also eat yogurt, but not store-bought. I make it myself from local, organic milk.

 

All in all, I am a VERY happy camper with this diet.

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GottaSki    459

I think that sums it up nicely...I am a happy camper on this diet.

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Takala    413

Right now my jaw is just about clampped shut

 

Darn, Bartfull, you just can't catch a break....

 

Well, that was strange, I tried to pull up the little emoticons, and it posted, instead !

 

Anyway, you can right now take the fruits/veggies and put them and some water in a blender/magicbullet type thing, and make smoothies and drink them. 

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GottaSki    459

Darn, Bartfull, you just can't catch a break....

 

Well, that was strange, I tried to pull up the little emoticons, and it posted, instead !

 

Anyway, you can right now take the fruits/veggies and put them and some water in a blender/magicbullet type thing, and make smoothies and drink them. 

 

 

 

So sorry to hear you lost corn again....feel better soon Bartfull!!!

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cait    5

I've been doing this too, though sugar is always the first thing to creep back in for me.  I'm trying to reduce it again.  I don't 100% avoid grains, but I only have them rarely.  Of course, becuase I'm just that lucky, my cholesterol has gone up, so my doctor lectured me about that.  Working on finding a new doctor since this one thought I was a head case anyway...

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bartfull    565

I didn't want to admit it out loud, nor scare any newbies, but I have to admit I am SO sick! I think I have a fever (related to the jaw thing) and I am so shakey and weak. I have come in and opened the shop every day this week, but left early every day. I stuck it out 'til 3:30 a couple of days, but left earlier on the others. As soon as I get home I go to bed. All I want to do is sleep. I have been sleeping almost straight through for 12 hours, waking only from the pain. Then I go back to bed.

 

I got some of my compounded Tylenol finally and it has helped some, and I am eating lots of yogurt and eggs (the only things I can get past my clamped jaw), but I know I need more nutrition. I haven't had the strength or energy to get to the store to get veggies for smoothies. I just want to sleep. I honestly feel like I'm dying. And at this point, I wouldn't mind if I did.

 

Oh, did I mention I'm a first class whiner? :lol:

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Bartfull, sorry things are so bad. You know this will pass, but it stinks for now. We all know how strong you are :). Do what you can, look after yourself and don't forget to ask for help. I seem to remember you found a number of knights in shining armour last time there was a rough patch.

Is it possible you got a bug too? There seem to be some prize ones going round this year.

Cuddle that kitty and stay safe

Mw

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ndw3363    15

I am going to try it. Ever since the cookie crumb incident a month or two ago, I have been struggling. I had gotten corn starch back, but now it seems I have lost it again. Right now my jaw is just about clampped shut so I have been eating gluten-free organic yogurt, but as soon as I can open it again I am doing away with all sugar, all grains, and will be living on meat and eggs and vegetables.

May I ask about the jaw problem?  Do you think it's related to your corn intolerance?  I ask because over the last month I have developed INTENSE right side jaw pain that feels completely different from any TMJ issue I've had in the past.  Sometimes it's fine (a little sore, but nothing major), other times I can barely open my mouth!  I have a doctor appt tomorrow have basic blood tests done (vitamin levels, thyroid, etc) and was going to ask about the jaw pain.  I'm not expecting any quality answers unfortunately from them though.  So sorry to hear you are feeling so lousy - hope that improves soon!!!

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gatita    32

Awww (((Bartfull)))....

 

To the OP, I have been on the South Beach Diet's Phase 1 (which is pretty close to Paleo except you can have beans, which makes me happy and I am lucky that they agree with me). But other than that, the diet has no grains or sugars. I am doing it to lose weight and also to control my SIBO, which I believe is the result of my gluten intolerance.

 

I really enjoyed the diet and lost 11 pounds in 2 weeks, yay! But I gained a few lbs. back when I was being stupid and went off it after my 'scopes last week. Am back on as of today.

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Hugs Bartfull - hope you feel better soon...

 

I have been basically primal (with the exception of dark chocolate, possibly without refined sugar, and fermented dairy) since after Thanksgiving, which I spent at some friends' - thus resulting in CCing and bad soy'ing.

 

I haven't lost weight - which I need to - but I do feel a lot better on this diet. I can't have too many nuts because they don't agree with my tummy, and to be true I don't often eat potatoes because I don't particularly care for them. I am not doing the macronutrient ration, though. I have upped my protein intake, and that helps, though. I am still struggling with swelling, though. And getting very frustrated.

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txgal748    4

I have been doing Primal off and on since July.  Lost 15 lbs. but right now I'm gaining :(.  Ya'll should check out Mark's Daily Apple website.  I beleive this lifestyle is the best for us Celiacs/NCGS.

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bartfull    565

Ndw, the jaw thing is unrelated except that whenever I get glutened (or corned), it gets worse. I have a lump about the size of a chicken egg on the bottom of my jawbone about halfway between my chin and the hinge. It is as hard as a rock. Sometimes my face swells to huge proportions and I look like I have mumps. The pain and the swelling don't always coincide though. Sometimes it LOOKS terrible but doesn't hurt. Sometimes it doesn't look bad but the pain is intense. The lump never goes away though.

 

The doctors say it is either a benign cyst, a cancerous tumor, or a bone infection. I need an MRI to know for sure but I have no insurance and no way to pay for the MRI or the surgery which will undoubtedly follow. I doubt it is cancer because it's been going on for so long I'd be dead by now if it were. Whatever it is, when it flares up the pain is unbearable. There is the constant ache, but also sharp shooting pains that sometimes last for a few seconds, sometimes for longer. I have to admit, sometimes I gasp, sometimes I whine, and a few times I have screamed.

 

This time I have had fever along with the pain and swelling. I am so exhausted and feel so weak. But I DID make it through the whole day at work today so maybe I'm on my way up and out. :)

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MissyShelle    1

I am also curious in the Paleo diet. I have not been diagnosed yet, but symptoms wise, I'm absolutely miserable. I also notice anytime I have any sort of wheat product, I feel worse. I'm also currently dealing with a rash that won't go away and if I have anything with gluten, it's even worse. So I know I need to have some gluten in me for the testing, but I'll stick to a piece of bread a day. 

 

I guess maybe I'm lucky. I'm at a point I am so miserable that if I do see anything with gluten in it, I don't even want to go near it. I just want to feel better. 

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myquest7846    2

I too found that the Paleo diet was easy to follow.  Being diagnosed 2 yrs ago with Celiac was a shocker to me because I had no stomach "disruptions" like other people.  But osteoporosis, migraines, anemia was a way of life for me till I finally found the right gastroenterologist .

 

Now anemia and migraines have gone almost completely.  And the "doofies" as I like to call them - dizziness, stumbling, and tiredness have all disappeared.  Wish I had known before I was falling about 4 times a week, sprains and a broken hand resulted.

 

In regard to the nutrionists I had the same experience - I felt the whole time I was teaching them.  I think the only way a nutritionist for celiacs should qualify is to actually have the disease themselves.

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