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I am naturally thin to begin with and have always wanted to gain weight...so when I found out I had to go gluten free...I figured I would gain weight..since I would be properly absorbing food and not eating things I was allergic to. But, the opposite has happened and i have lost weight..HOW??? i dont understand. I am eating healthy foods (because I have to) constantly...I dont understand why I wouldnt be gaining weight..at least a little.

Has anyone had this happened when they went Gluten-Free? I started in January this year...was about 115...now I am down 5-10 pounds...How was I not losing weight when I was eating all the foods I was allergic to, but now that I am eating foods good for body...im losing weight??? doesnt make sense.

I've been going to a nutritionist..but clearly that isn't working..so I am going to GI doctor soon to get things inside checked out...

-In the meantime...do you think it would be better to eat 3 big meals a day rather than many small ones...ive ususally just been eating breakfast, lunch, and dinner in good size portions..would that slow my metabolism?

and do you think I should eat before bed..would that help?? any advice in the meantime (before I see a doc within the next couple of weeks) would be awesome!

thanks!!! i hate gluten!!!

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I am naturally thin to begin with and have always wanted to gain weight...so when I found out I had to go gluten free...I figured I would gain weight..since I would be properly absorbing food and not eating things I was allergic to. But, the opposite has happened and i have lost weight..HOW??? i dont understand. I am eating healthy foods (because I have to) constantly...I dont understand why I wouldnt be gaining weight..at least a little.

Has anyone had this happened when they went Gluten-Free? I started in January this year...was about 115...now I am down 5-10 pounds...How was I not losing weight when I was eating all the foods I was allergic to, but now that I am eating foods good for body...im losing weight??? doesnt make sense.

I've been going to a nutritionist..but clearly that isn't working..so I am going to GI doctor soon to get things inside checked out...

-In the meantime...do you think it would be better to eat 3 big meals a day rather than many small ones...ive ususally just been eating breakfast, lunch, and dinner in good size portions..would that slow my metabolism?

and do you think I should eat before bed..would that help?? any advice in the meantime (before I see a doc within the next couple of weeks) would be awesome!

thanks!!! i hate gluten!!!

It's hard to know what shape your intestines were in if you weren't scoped before going gluten-free? If you have flattening of the villi, they won't absorb what you eat.. and you lose weight. It's possible you aren't eating as many carbs too? It takes a while to heal and absorb what you consume.

When in the healing phase I recommend smaller amounts of food..but eat more often. It doesn't strain your digestive system.

If you eat before bed you might get acid reflux? It's best to have your evening snacks an or two before bedtime.

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It's hard to know what shape your intestines were in if you weren't scoped before going gluten-free? If you have flattening of the villi, they won't absorb what you eat.. and you lose weight. It's possible you aren't eating as many carbs too? It takes a while to heal and absorb what you consume.

When in the healing phase I recommend smaller amounts of food..but eat more often. It doesn't strain your digestive system.

If you eat before bed you might get acid reflux? It's best to have your evening snacks an or two before bedtime.

thanks! do you know if most people's villi usually heal naturally on their own? would a doctor give anything to help them heal?

i wasnt scoped before going gluten free...i started with the nutrition side of it and started eating gluten free... immediately i felt better and have continue to eat gluten free for four months... so I wont be able to know how my intestines were beforehand...

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thanks! do you know if most people's villi usually heal naturally on their own? would a doctor give anything to help them heal?

i wasnt scoped before going gluten free...i started with the nutrition side of it and started eating gluten free... immediately i felt better and have continue to eat gluten free for four months... so I wont be able to know how my intestines were beforehand...

Villi heal on their own when the gluten is eliminated from the diet, in the case of celiac disease. There is no other treatment or medicine.

Do you have Celiac?

An endoscopy does not "see" villous atrophy. A biopsy is done to assess villous atrophy.

Because you have been gluten-free for four months, a biopsy for diagnosing celiac disease at this point will render invalid results.

The GI doctor can explain more of this to you.

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I am naturally thin to begin with and have always wanted to gain weight...so when I found out I had to go gluten free...I figured I would gain weight..since I would be properly absorbing food and not eating things I was allergic to. But, the opposite has happened and i have lost weight..HOW??? i dont understand. I am eating healthy foods (because I have to) constantly...I dont understand why I wouldnt be gaining weight..at least a little.

Has anyone had this happened when they went Gluten-Free? I started in January this year...was about 115...now I am down 5-10 pounds...How was I not losing weight when I was eating all the foods I was allergic to, but now that I am eating foods good for body...im losing weight??? doesnt make sense.

I've been going to a nutritionist..but clearly that isn't working..so I am going to GI doctor soon to get things inside checked out...

-In the meantime...do you think it would be better to eat 3 big meals a day rather than many small ones...ive ususally just been eating breakfast, lunch, and dinner in good size portions..would that slow my metabolism?

and do you think I should eat before bed..would that help?? any advice in the meantime (before I see a doc within the next couple of weeks) would be awesome!

thanks!!! i hate gluten!!!

Michelle...I was always the skinny Celiac and ended up weighing 97 pounds at diagnosis. It was 6 months before I started to gain any weight at all. However, I have topped out at 110-112 and have not been able to gain any more weight but here's why.....I eat a mainly whole foods diet and you don't gain a whole lot of weight eating fruits, veggies and protein. The carbs are what make people gain. I also exercise hard, at the gym with a trainer, twice a week and the rest of the time I rarely am sitting. I am always on the go.

For food, I eat 3 squares a day and 3 snacks. I eat right before going to bed. Eating healthy, more often, will boost metabolism. It's when you go longer between meals that it slows metabolism down. I also weight train and that is a real calorie burner. I kind of like the fact that I can eat whatever I want and not worry about too much weight gain. I noticed that once I started becoming very active again, I needed to eat more.

I don't know how active you are but 4 months on the gluten-free diet is not long enough because you aren't going to be healed in such a short span of time. I would try and eat more gluten-free bread because that stuff is fattening and will help. Peanut butter, dried fruit or any other calorie dense foods will help. If you can tolerate dairy,

try milkshakes. I make protein shakes with almond milk and they are very filling.

It may take awhile but all of a sudden, you'll start to gain. Just go for the calorie dense stuff and eat whenever you like! :D

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Michelle...I was always the skinny Celiac and ended up weighing 97 pounds at diagnosis. It was 6 months before I started to gain any weight at all. However, I have topped out at 110-112 and have not been able to gain any more weight but here's why.....I eat a mainly whole foods diet and you don't gain a whole lot of weight eating fruits, veggies and protein. The carbs are what make people gain. I also exercise hard, at the gym with a trainer, twice a week and the rest of the time I rarely am sitting. I am always on the go.

For food, I eat 3 squares a day and 3 snacks. I eat right before going to bed. Eating healthy, more often, will boost metabolism. It's when you go longer between meals that it slows metabolism down. I also weight train and that is a real calorie burner. I kind of like the fact that I can eat whatever I want and not worry about too much weight gain. I noticed that once I started becoming very active again, I needed to eat more.

I don't know how active you are but 4 months on the gluten-free diet is not long enough because you aren't going to be healed in such a short span of time. I would try and eat more gluten-free bread because that stuff is fattening and will help. Peanut butter, dried fruit or any other calorie dense foods will help. If you can tolerate dairy,

try milkshakes. I make protein shakes with almond milk and they are very filling.

It may take awhile but all of a sudden, you'll start to gain. Just go for the calorie dense stuff and eat whenever you like! :D

thanks!! ahh i really want milkshakes..but I am still somewhat sensitive so I am laying off the dairy...maybe one once in a while I might try....and i was also thinking of trying gluten free protein shakes..i guess kinda similar to the milkshakes idea...they have a bunch of calories....

i just want to make sure that everything is going well on the inside of my body...because I was doing good the first two months..and then all of sudden starting dropping weight the last two....

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thanks!! ahh i really want milkshakes..but I am still somewhat sensitive so I am laying off the dairy...maybe one once in a while I might try....and i was also thinking of trying gluten free protein shakes..i guess kinda similar to the milkshakes idea...they have a bunch of calories....

i just want to make sure that everything is going well on the inside of my body...because I was doing good the first two months..and then all of sudden starting dropping weight the last two....

Michelle, thank you for your post because seriously, this is my life right now. I've been diagnosed celiac for 11 months now. 9 of those eleven months I maintained my weight perfectly fine--although I should say I think I was eating more than my usual amount. I was severely anemic before diagnosis and probably really malnourished and so when I first was diagnosed and went gluten free, I was suddenly hungry ALL the time. I probably ate twice as much as I usually do, plus cookies and ice cream, and didn't gain an ounce but didn't lose it either.

Now, suddenly from March to April I lost 8 pounds. I have NO idea how it happened, I don't exercise, and was pretty freaked out about it because as with you I am not big to begin with. I was 118 to 120 before and now I am 111-ish. It really upsets me. I went out and bought ice cream and chocolate bars, and I try to eat at least one sugar a day, but unfortunately (or not) all the rest of my food is SUPER healthy. I don't know about you, but I've noticed most Gluten Free food to be very low fat. So it's high fiber cereal for breakfast, a sandwhich for lunch and stirfry for dinner, plus yogurt and nuts to snack on. I keep telling myself "you will not be able to gain weight eating edame beans and yogurt!" but it's hard for me to know how to supplement by diet with higher fat foods. I hate being this thin though. I recently talked to my doctor about this, and he said I'm still in the safe zone in terms of weight so he's not too worried, but if I really wanted, I could try drinking 'an instant breakfast' shake on top of my 3 meals a day. It's an extra 300 calories per meal. Hopefully it will work! Dr also said don't weigh yourself every day because that will stress you out. Good luck gaining weight!

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    • 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!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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