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Weight Loss..constant Struggle
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Hi everyone,

New to the board, fairly recent diagnosis (November 2011). I assume there are many people struggling with so many symptoms, so i was happy to find this forum. In my case the brain fog and weight loss is the most difficult to manage. Looking for suggestions from others with celiac disease. Thank you.

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Hi Amy. I'm new myself. The only advice I can give is to stay strictly with whole foods, naturally gluten free. No processed foods at all. This will also make sure trace gluten is not getting to you thru food (thinking of the brain fog) Also is Dairy or another ingredient causing you trouble?

Just things to think about. Good luck to you. :)

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Hi Amy. I'm new myself. The only advice I can give is to stay strictly with whole foods, naturally gluten free. No processed foods at all. This will also make sure trace gluten is not getting to you thru food (thinking of the brain fog) Also is Dairy or another ingredient causing you trouble?

Just things to think about. Good luck to you. :)

Thank you. Not sure about dairy. Im thinking i am not doing such a great job in managing this. I just avoid food. I was a 3000 a day eater and loved food and snacking. When i became sick last fall, my biopsy showed a raging case, yet i had no pain, and very few symptoms. It was quite strange, and docs were a little baffled as well. It seems this forum will be very helpful.

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I was just recently diagnosed (in May of 2012) and I was putting on a lot of weight before my diagnosis. All throughout college I was about 120lbs and just before diagnosis I topped out at 155lbs (I'm 5'3"). Just like you, never had any GI symptoms and the diagnosis was a total surprise. Diets and exercise never worked and I just kept packing on weight slowly but surely. Since going gluten free, exercising more, and being more conscious of what I eat, I've lost 15 pounds since May and I hope to lose some more! I also started seeing a nutritionist who is experienced with Celiac and that helped me a lot too. It seems that before I went gluten free, even though I ate a good amount of food (most of it contained gluten) my body went into starvation mode because it wasn't able to absorb any of the food I was consuming. Now that my body can absorb more, I think my metabolism has gotten much better and I'm able to start losing the weight.

My suggestion to you is eat whole foods - meats, fish, poultry, fruits, veggies, and nuts. I eat some gluten free substitute foods but I try to stay away from having too much because they often have too many carbs and calories which don't make the weight loss any easier. Drink a lot of water - I have about 12 cups per day, and that should hopefully help too....best wishes and let us know how you're doing!!

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You might also 'test' yourself for other foods your body cannot tolerate. I learned that here, at this site, and found many that I reacted to. When I keep those things out of my diet, I can drop 2 lbs a week, easy. I found I am extremely sensitive to corn in any form. A "contaminated" pill or a bit of citric acid (which is usually corn based in the USA, and seldom even listed on a label!) will shoot the scales right back up 5-10 lbs. And I am back to where I started in weight loss.

It can't hurt to test yourself, then you will know for certain.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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