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Honestly, I'm Stunned!


MitziG

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MitziG Enthusiast

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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Bubba's Mom Enthusiast

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?

rosetapper23 Explorer

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.

MitziG Enthusiast

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!

anabananakins Explorer

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.

Angiekins Newbie

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... :)

MitziG Enthusiast

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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1desperateladysaved Proficient

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

GFinDC Veteran

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

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GLUTEN FREE IN SLC Rookie

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.

MitziG Enthusiast

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!

eatmeat4good Enthusiast

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.

Lori2 Contributor

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?

That GF Girl Rookie

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?

Bubba's Mom Enthusiast

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!

That GF Girl Rookie

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

Lori2 Contributor

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?

MitziG Enthusiast

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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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