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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.

Gluten-Free & Still Losing Weight
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11 posts in this topic

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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Hi I have been gluten free for about 6 months and have lost like 13 lbs. I am trying so hard but it's so complicated! And my doctor has not 100% diagnosed me with celiacs which makes this a little confusing. I had a endoscope and they said it suggest celiacs but my blood work was fine. I have been having hair loss and weight loss. I'm trying to eat more but it's hard because my appetite isn't huge. Help please. 

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On 3/9/2017 at 3:36 AM, Jenlp said:

Hi I have been gluten free for about 6 months and have lost like 13 lbs. I am trying so hard but it's so complicated! And my doctor has not 100% diagnosed me with celiacs which makes this a little confusing. I had a endoscope and they said it suggest celiacs but my blood work was fine. I have been having hair loss and weight loss. I'm trying to eat more but it's hard because my appetite isn't huge. Help please. 

Hi and welcome :)

I think you should start a new topic, the one you've replied to is a few years old and that way you'll have more people see your post and be able to offer advice. 

I found I lost weight when going gluten free, partly because I was eating far fewer processed foods, but also because I think I lost some inflammation. So maybe that accounts for some of your weight loss?

If you're looking to put weight on, then there's plenty of gluten free foods that can help. But the first step would be to share with us what you're currently eating and if there's any things you won't or can't eat, other than gluten of course... :P

Go ahead and start a new topic and myself and others will do our best to help. :)

Matt

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    • Thankyou for your advice i am getting so confused as some people are saying you dont need the biopsy and others are saying you do need it as it comes with other tests connected to thyroid, iron etc? just want to start being gluten free asap! did you go for the endoscopy? 
    • Hello One drawback is that there are no guarantees. You may go through the testing process and not get the answer you want or need. I did go through testing after having been gluten free and was stunned when I was told it was negative. By that point I'd gone through the challenge and seen various symptoms return so I thought I'd definitely be diagnosed celiac. The consultant advised me to go gluten free anyway and because I'd good evidence to support that I've not had any problems staying on the diet since then. So it can be done, it just requires a certain mind set, essentially I live my life as if the diagnosis was positive. No exceptions.   I think  this is where people make a mistake, if it's 'just' gluten sensitivity' then they can make exceptions on special occasions etc. I think that makes it harder to live gluten free because you still have to make choices and judgments about whether to eat gluten or not. For me, it's never an option so I don't have the conversation. Everyone around me understands that as well. Only you can decide on this. I don't regret doing it because I learned more about my bodies reactions but I found the challenge unpleasant as my reaction to gluten had become more extreme after removing it from my diet. You won't gain much for yourself, the answer is still the same and you already have enough info to know you should never eat gluten again, but your kids may gain if your positive diagnosis keeps them monitored in later life.  Best of luck!  
    • For me personally a medium result, in that situation,  would be enough to convince me that I had celiac disease.  Probably the standard of care is to also get a biopsy. Going gluten free is difficult so some people want to do all the tests they can so they can make the best choice. Generally more testing is thought of as providing better patient care. I think it is a personal preference thing though.   
    • Hi all i hope you can help me i have just had blood tests for celiac and they both come back as a positive result the 1st test was a low reading but the 2nd test was a medium result, i am now waiting a 4 week wait for a endoscopy/biopsy. Not trying to get out of the endoscopy as i have had this procedure before but is it really necessary to have this done when it has been confirmed in the blood tests, i know that they look to see if damage had been done but surely the damage is already been done. Any advice would be great
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