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Gluten-Free & Still Losing Weight
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I was diagnosed with celiac disease just over 2 months ago.  TTG came back positive(32) and Marsh I on endoscopy.  March 25th I started the gluten-free diet and believe that I haven't eaten gluten since.  I've tried to be very strict, watch cross-contamination, and read lots and lots of articles to avoid possible "hidden" forms of gluten.  Now I know that none of you are doctors but I was wondering if anyone had a similar experience that might be a help to me.  I am 27 years old, 6' 2" and have weighed about 137 pounds since I was 16.  In the last 11 years, the absolute lowest I've seen my weight is 135, the max is 140.  I was hoping to gain weight now that I got off gluten and hopefully healing that digestive tract.  I was a little bit disappointed when I hopped on the scale a month and a half into the diet and I weighed 133 pounds.  I had lost about 4 pounds.  But I didn't think anything of it until yesterday(2 months and a week into the diet) and I weighed 130 pounds.  I've lost 7 pounds in the last 2 months, which may not sound like a lot but 130 pounds for a 6' 2" guy is pretty skinny and I'm worried that I might lose more.  I've heard of people losing weight because of celiac(and I assume that's why I've always been really skinny), but I've not heard of people losing weight after starting the gluten-free diet.  Also, my stomach still will often feel achy right under the ribs, and feel full.  And the fatigue, "brain fog," and muscle weakness haven't gone away yet either.  Any thoughts?  Thanks.

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Welcome!

 

I can't say my experience is similar because I gained weight, but are you still eating dairy?  If not, you may want to try giving that up for a bit to see if it helps.  Here's the reasoning behind that suggestion.  Since the enzyme that digests lactose, lactase, is made at the tips of the villi, it may be difficult to digest for a period until healing has taken place.  Have you ever had your thyroid tested?

 

 

In addition, did you have your nutrient levels tested at diagnosis?  If not, I would recommend getting the following tests performed:

 

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

C-Reactive Protein

Iron

Vitamins B-6 and B-12

Vitamins A, D, E, K

Ferritin

Magnesium

Zinc 

Copper

 

There is a possibility the muscle weakness could be caused by low potassium and/or magnesium, fatigue could be caused by low iron and/or B12, and brain fog, well I don't have a good answer for that one :)   Mine has gone away gluten free, so hopefully in time it will remedy itself.

 

Do you have follow-up testing for celiac antibodies scheduled?  Here are some guidelines regarding getting that done.

http://www.cureceliacdisease.org/archives/faq/how-often-should-follow-up-testing-occur

 

Hope this helps!

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I am another skinny Celiac and was down to 94 pounds at diagnosis.  I am only 5' 4" but that's still way underweight for my height.  Once I went gluten free, it took me 6 months to actually start gaining weight again.  I stabilized within a week but that's how long it took for me to gain anything.  You are 27 years old and your metabolism is faster than those of us who are older so that may account for some of the weight issues.  It may be harder for you to gain.  I was skinny my entire life and, like you, and could not gain anything.

 

What are you eating? Protein, protein, protein, my friend and carbs.  You need gluten free carbs.  I did not restrict myself with those because I desperately needed to gain weight.  I chose stuff from dedicated facilities, for the most part, but do tolerate some things from shared facilities. You need to be eating a lot and often because it will take a lot of calories to get your weight up right now.  Protein shakes are great also.  Put some coconut milk ice cream in them for added fat and calories.  Eat potatoes, brown rice and yes, some cookies or brownies.  Eat the stuff that appeals to you.  Bread also makes my weight stable and I can give you recommendations for good, certified gluten-free bread that is delicious.  PB and fluff sandwiches will pack some pounds on too.  :)

 

You have only been diagnosed for 2 months and it is going to take a lot longer for your health and weight to come back.  Patience is something that will become your friend because Celiac recovery is an exercise in patience.

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I was diagnosed with celiac disease just over 2 months ago.  TTG came back positive(32) and Marsh I on endoscopy.  March 25th I started the gluten-free diet and believe that I haven't eaten gluten since.  I've tried to be very strict, watch cross-contamination, and read lots and lots of articles to avoid possible "hidden" forms of gluten.  Now I know that none of you are doctors but I was wondering if anyone had a similar experience that might be a help to me.  I am 27 years old, 6' 2" and have weighed about 137 pounds since I was 16.  In the last 11 years, the absolute lowest I've seen my weight is 135, the max is 140.  I was hoping to gain weight now that I got off gluten and hopefully healing that digestive tract.  I was a little bit disappointed when I hopped on the scale a month and a half into the diet and I weighed 133 pounds.  I had lost about 4 pounds.  But I didn't think anything of it until yesterday(2 months and a week into the diet) and I weighed 130 pounds.  I've lost 7 pounds in the last 2 months, which may not sound like a lot but 130 pounds for a 6' 2" guy is pretty skinny and I'm worried that I might lose more.  I've heard of people losing weight because of celiac(and I assume that's why I've always been really skinny), but I've not heard of people losing weight after starting the gluten-free diet.  Also, my stomach still will often feel achy right under the ribs, and feel full.  And the fatigue, "brain fog," and muscle weakness haven't gone away yet either.  Any thoughts?  Thanks.

Crazy thing, just as a began to worry about this you posted about it. I'm 20 and 5'4" now weighing 109lbs down from 128 when this all "began". I was diagnosed April 4 after dealing with weight loss, the big D, and Panic Attacks since November. My GI made a great point for me today. I honestly became scared of eating anything once I found out about foods that those with Autoimmune issues are sensitive to as well as cross reactivity (coffee, chocolate, gluten-free grains). I think that I may have been playing a mental game with myself. We will hopefully find out. He is setting me up with a Nutritionist and giving me 2 months to gain 10lbs. If that doesn't happen and I am on a proper diet, he is doing another full work-up.

 

Best of luck! Don't be afraid to speak up if that is bothering you!

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. I honestly became scared of eating anything once I found out about foods that those with Autoimmune issues are sensitive to as well as cross reactivity (coffee, chocolate, gluten-free grains). I think that I may have been playing a mental game with myself.

 

Well, here is one less thing to worry about:

 

 

http://www.cureceliacdisease.org/archives/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity

 

What’s with all the talk about certain types of food causing “cross-reactivity?”

There is no data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.

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And my weight hasn't stabilized yet.  Since my last post I have lost another 3.5 pounds, for a total of losing 10.5 pounds in the last 11 weeks.  For the past 4 days, I have been counting my calories and weighing everything that I eat, and making sure that I am eating over 2,000 calories a day.  Since I started making sure I was eating at least 2,000 calories my all-time lowest weight has gone down a half a pound.  

 

And I have not been eating dairy for about 1 month.

 

Thanks for the replies.

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According to this calorie determining  website:

 

http://www.calculator.net/calorie-calculator.html?ctype=standard&cage=27&csex=m&cheightfeet=6&cheightinch=2+&cpound=130&cheightmeter=180&ckg=60&cactivity=1.55&x=47&y=10

 

You need for your age and current weight of 130 lbs.  to consume 2533 calories -- just to maintain!!!  To gain 1 lb/week you need to consume 3,033 calories a day and for 2 lb/week you need to eat 3,533 a day!!!!!  

 

Eat more!!!!!!!

 

There are plenty of other calorie "calculators" on the web.  Check out others for further confirmation.  

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According to this calorie determining  website:

 

http://www.calculator.net/calorie-calculator.html?ctype=standard&cage=27&csex=m&cheightfeet=6&cheightinch=2+&cpound=130&cheightmeter=180&ckg=60&cactivity=1.55&x=47&y=10

 

You need for your age and current weight of 130 lbs.  to consume 2533 calories -- just to maintain!!!  To gain 1 lb/week you need to consume 3,033 calories a day and for 2 lb/week you need to eat 3,533 a day!!!!!  

 

Eat more!!!!!!!

 

There are plenty of other calorie "calculators" on the web.  Check out others for further confirmation.  

What she said!!!!!  2,000 calories a day is what I eat and I'm female, 5' 4" tall and weigh 110 pounds.  If you are seriously trying to gain weight, shoot for at least 3500-4000 calories a day.....really!  Look for calorie dense foods and eat a lot of them...the healthy ones.  Peanut butter, dried fruits and yes, a brownie.

Protein shakes will put on weight.  gluten-free pasta is a good choice, if your stomach can handle it right now.  Pasta is pretty easy to digest anyway.  It will not happen overnight but you have to eat more.  I would personally graze during the hours in between meals.

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Crazy thing, just as a began to worry about this you posted about it. I'm 20 and 5'4" now weighing 109lbs down from 128 when this all "began". I was diagnosed April 4 after dealing with weight loss, the big D, and Panic Attacks since November. My GI made a great point for me today. I honestly became scared of eating anything once I found out about foods that those with Autoimmune issues are sensitive to as well as cross reactivity (coffee, chocolate, gluten-free grains). I think that I may have been playing a mental game with myself. We will hopefully find out. He is setting me up with a Nutritionist and giving me 2 months to gain 10lbs. If that doesn't happen and I am on a proper diet, he is doing another full work-up.

 

Best of luck! Don't be afraid to speak up if that is bothering you!

10 pounds is a lot of weight for you to try and gain in 2 months.  It took me 6 months to start gaining weight from 94 pounds. You might not do so well without the gluten-free grains and if you buy from a reputable company, preferably with a dedicated facility, you should have no issues with them.  The cross reactive nonsense is just that.....total bunk.  You can't gain without carbs so please include these in your diet and don't worry.  You don't need another work up...you need time and good food...lots of it.  Good luck!  :)

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