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Honestly, I'm Stunned!
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13 mos ago when I was dx, it thought- "oh good, now I should be able to lose weight and my face will clear up." It was a long slow road to feeling better, but gluten-free did wonders for me. I felt awake, alert and energetic for the first time in my life. But the weight didn't budge. I analyzed my diet, cut out most dairy products, stripped out the processed gluten-free foods (except for occasional pasta and bread) but still, nothing. In December, I went on a protein shake supplement/ meal replacement plan. It did wonders for feeling full and kicking cravings- but still, no weight loss, even at 1200 calories + hitting the gym regularly. And, my adult acne got way worse. I finally got a clue that dairy was making the acne worse, so swapped out my shakes for raw vegan ones that taste like dirt. Face seemed less inflamed, but still painful jaw breakouts. And no weight loss. 10 days ago I removed all traces of milk/casein/whey from my diet.

6 pounds has fallen off, even though I have been ravenously hungry and eating like a horse.

I have exactly 2 small remaining pimples on my jaw (I did have about 30)

And, yesterday I worked outside in my garden from 8 am until 9 pm without getting tired. Even after gluten-free took away my intense fatigue, I still had low stamina and had to rest often.

I went to bed at 12:30, woke up at 6 am today feeling right as rain!

I am beginning to think that the disease sttae of alll mankind is probably almost all food related!

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What we eat affects us so much more than we're ever aware? Once you figure out whjat doesn't agree with you, and avoid it, it can be life changing? Congrats to you on figuring it out. :D

Now..wanna come work in my garden?

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I was diagnosed with celiac back in 2004, and I continued to have a weight problem regardless of following a gluten-free diet. It wasn't until last year when I read, "Primal Body, Primal Mind," that I finally found out what was causing my weight problem: I wasn't consuming enough healthy saturated fats and I was eating too much fruit and other carbs. Humans haven't evolved enough yet to digest grains, beans, soy, most dairy, and some fruits. I used to shun any and all fats because I figured that they'd make me fat, but we need healthy saturated fats to keep our brains and bodies healthy. Fats don't make us fat--carbs do because they cause a rise in insulin. You might try eating more avocados, nuts, nut butters, and organic butter and meats. The weight just fell off of me when I went on this diet (sometimes referred to as the Paleo diet), and the fat in my stomach area simply disappeared. I feel healthy and happy now, and maintaining my weight is easy. I know that the media and some health magazines bombards us with advice on going vegan or vegetarian, but these diets are contrary to what humans must eat to be haalthy. Of course, though, everyone is different, so I don't go around proseletyzing (sp?) about how people should eat....I'm just recommending this diet because it's worked for a number of us on this Forum.

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Actually, I have always eaten tons of good fat- my good cholesterol is always very high, my bad cholesterol quite low. I frequently eay avocados- just avococados, for a meal.

I have researched Paleo, and I think for the most part it is a healthy diet, but I don't believe in the evolutionary theory behind it, I think most people have trouble with digesting foods because our bodies have just broken down over time due to all the poisons in our air, food and water. I also suspect our advances in modern medicine, particularly antibiotics has done serious damage.

I appreciate you telling me about thw diet though, and if I didn't enjoy beans so much I would give it a try! ;) I don't have a ton of extra weight to lose- I just put on 20 lbs about 3 years ago and no amount of exercise or diet would budge the scale more than a pound or two. Even when I was running 10 miles a day, I didn't lose a pound! I am beginning to realize just how detrimental inflammation can be!

Another interesting side effect of cutting out casein- it seems to have killed my sweet tooth. I have constantly craved chocolate for years, and would do anything for a daily chocolate fix. I also always wanted a "sweet" taste throughout the day, which was of course counter-productive to losing weight. After. About day 5 of no casein my cravings just- left! I hope never to return!

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I'm really glad to hear how much better you feel, though I'm not sure I really wanted to know, lol, since I have been trying to psyche myself up to go dairy free for ages. I just can't bear to, even though I suspect it would really help. Maybe this will inspire me. It sounds fabulous.

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Rosetapper,

I've researched the Paleo diet as well, and it all just makes sense! I am currently reading "The Paleo Solution" By Robb Wolf, and its an amazing book,an easy read, and funny as well. I havent been diagnosed with Celiac, however I have a docs appt in a week. Ive suffered from digestive issues for what seems like forever...but regardless of the results I am cutting gluten, grains, and dairy out of my diet so hopefully I can feel normal again... :)

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Anabananakins- I know how you feel! I resisted it for a long time too. If I hadn't figured out the connection with my acne, I doubt I would have!

I tell myself it isn't like celiac- I don't necessarily have to give up all dairy, forever. I am planning on a six month stretch, and then trying to see if I can tolerate a little bit. I really miss real cheese!

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I like coconut and almond milk. One does not have to have dairy milk. There is life without it, if you are willing.

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You might want to try Daiya cheese shreds. Pretty good stuff. Almond milk is good sub or hemp milk for regular milk.

Daiya cheese site

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I don't understand how people with Celiac could be overweight. I myself was recently diagnosed with Celiac after loosing 40 pounds. Keep in mind I'm a male and weighed 160 and now I weigh 120 and people think I'm anorexic. I guess I must of had Celiac for years and got to that malabsorption state. I've been doing everything in my power to gain weight but its been so hard.

I'm happy for you being able to see the results you want. I wish that doctors would test for more intolerance's/allergies especially with those diagnosed with Celiac.

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Yes it seems bizarre, but it happens a lot. Different theories as to WHY. Some think it is because our body "hoards" calories as a survival mechanism when it is nutrient depleted. Others say that the body will store fat to insulate vital organs from "toxins"- or what it thinks are toxins.

All I know is that with 30 years of celiac, frequent vomiting and diarrhea AND 20 years of bulimia, I was NEVER underweight, ever.

I restricted to 220 calories a day for over a year and managed to hit my goal weight of 140 lbs (I am 5' 10")

Compulsive exercising did nothing.

13 mos of very healthy gluten-free eating with no dairy and few processed foods- didn't lose a pound.

I cut out trace milk protein less than 3 weeks ago and suddenly 10 lbs falls off. Go figure.

I switched to almond milk a year ago- love it. Daiya cheese is ok- but the cheese I miss is more along the lines of stinky feta, creamy swiss and crusty Parmesan!

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I was a 200 lb Celiac at my sickest.

Diagnosed with fibromyalgia....with sores...

Yeah, it was Celiac DH.

The first year gluten free...didn't want to give up dairy but I was losing weight and getting healthier...so I didn't worry about it.

Started to suspect dairy.

Went dairy free at one year gluten free...pretty much exactly like you...

found that dairy made me sick if I ate it.

Went Paleo...and the total transformation happened.

Muscle started to grow where I never had muscle before....abs...thighs...calves...forearms...

I'm only 5 ft... have battled weight and fatigue all my life.

On Paleo it took only 6 months to get super trim...and I don't work out at all...other than regular daily tasks.

I eat way more than I ever have in my life!

I got to 100 lbs and started to get scared....I felt great! But losing that much weight...when you are used to being plump is kinda concerning. I added dairy back about 3 weeks ago.

Doesn't bother my stomach at all.

Loved eating cheese, cream in my coffee, ice cream, all that stuff.

I have gained about 6 lbs....

But I feel like crap.

Going back to dairy free.

Paleo without dairy plus avocados for me!!!!

Thanks for your post...I can relate.

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What we eat affects us so much more than we're ever aware? Once you figure out whjat doesn't agree with you, and avoid it, it can be life changing? Congrats to you on figuring it out. :D

But that's just the problem. How do you figure out what doesn't agree with you? I've been keeping a food journal for over a year and I still can't figure some of it out. Eliminated rice several months ago and that was a big help, but there's still something--but what?

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This is encouraging for me...I have been gluten-free for 2yrs but battling fatigue like crazy still. Brain fog better but now dealing with other food sensitivities that have come up: Egg Yolks, Yeast, Almonds and Walnuts, Milk, Cheese and Oh my gosh my Chiobani Greek Yogert! I am losing weight and can't afford to get too low. Struggling to do this for 6 mos to see how I can add enough protein which for my age/wt they said 81 grams. Wow that's alot. I hate beans and am a super picky eater...I can do cashews but have depended upon my almond butter etc. Now no bread etc! Any ideas to sneak in some gluten-free dairy free choc once in a while? How does one tell if it has dairy in it...like a candy bar? I am having trouble with snack foods that have protein since I relied upon dairy so much.! I had planned on doing this for 6 mos and then trying to reintroduce these every 4th day...we'll see now....Thoughts anyone?

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This is encouraging for me...I have been gluten-free for 2yrs but battling fatigue like crazy still. Brain fog better but now dealing with other food sensitivities that have come up: Egg Yolks, Yeast, Almonds and Walnuts, Milk, Cheese and Oh my gosh my Chiobani Greek Yogert! I am losing weight and can't afford to get too low. Struggling to do this for 6 mos to see how I can add enough protein which for my age/wt they said 81 grams. Wow that's alot. I hate beans and am a super picky eater...I can do cashews but have depended upon my almond butter etc. Now no bread etc! Any ideas to sneak in some gluten-free dairy free choc once in a while? How does one tell if it has dairy in it...like a candy bar? I am having trouble with snack foods that have protein since I relied upon dairy so much.! I had planned on doing this for 6 mos and then trying to reintroduce these every 4th day...we'll see now....Thoughts anyone?

I got to the point where I was getting bad reactions to more and more foods. I got a hydrogen breath test to see if I had small intestine bacterial overgrowth (SIBO). It's very common in Celiacs. I tested positive, and was told mine is severe. I was told that we react to more and more foods because the bacteria emit toxins into our blood stream/brain as they rob our bodies of nutrients.

For anyone reacting to more and more foods I highly recommend getting the test!

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So how does one do this hydrogen breath test? And what do you do if you find you have this bacterial overgrowth?

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I got to the point where I was getting bad reactions to more and more foods. I got a hydrogen breath test to see if I had small intestine bacterial overgrowth (SIBO). It's very common in Celiacs. I tested positive, and was told mine is severe. I was told that we react to more and more foods because the bacteria emit toxins into our blood stream/brain as they rob our bodies of nutrients.

For anyone reacting to more and more foods I highly recommend getting the test!

What do you do to deal with SIBO? Do probiotics help? What kind of foods can you eat?

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gluten-free girl- your standard chocolate bars/ chips all have dairy in them. Several brands of semi-sweet chocolate chips that don't though. Enjoy Life also makes dairy free chocolate bars (Boom Choco Boom) which are good- taste a lot like a Nestle Crunch bar.

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    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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