Still losing weight

[Fbmb]

When I was diagnosed on November 8 I weighed 158, which is more than I wanted to weigh. Since then I've dropped to 148 (as of today) and I haven't tried to lose weight at all. I have just cut out gluten. I think (logically) that it makes sense because I have cut out a lot of calories. I used to eat pizza, burritos, restaurant food. I never eat out now. Yesterday I ate: a small bowl of rice Chex with 2% milk, for lunch I had an egg with 2 slices of gluten-free toast/peanut butter, and spaghetti with ground turkey for dinner. I didn't have any snacks yesterday. I did also have a handful of boulder chips before bed. This is less than I used to eat but not significantly less. It's just hard to keep my calories up because I don't want to binge on dairy (still working it into my diet) and I am not eating a lot of heavy foods. 

is this normal? Is it excessive to lose 10 lbs in 2 months? I read that it is. I'm not exercising or trying to lose it. Before I was diagnosed I would work my butt off counting calories and at the gym to lose any weight.  Of course I'm worried about it and googling about it....and thinking I have something wrong with me.

i had a full thyroid panel done in December and my thyroid is normal.

[Gluten-free me]

I don't believe that is an excessive amount of weight loss.  Eating gluten as a celiac increases the amount of inflammation in one's body.  Your diet has changed so not only are you getting rid of the inflammation, you state you have a decreased calorie intake, which will promote weight loss as well.  I was diagnosed in July 2016 and to date have lost 38 pounds and am still losing.  Pretty much the only thing that changed in my eating habits is that I no longer eat out and I no longer use processed desssings and/or soups in my cooking.  I am amazed at how even just the small amount of gluten I was ingesting wreaked such havoc in my system.  

[cyclinglady]

Normal, I would say.  Given that you have modified your diet and  have intestinal damage as GFMe pointed out. But where are the fruit and veggies?  Good fats?  Hoping you left that out of your description because you just focused on the "main course"  during this post.  ?

And let's not forget that you are just diagnosed, still trying to watch everything that goes into your mouth, worried about gluten.  Let's not forget a new puppy and two small children.  

 

[Ennis-TX]

Yeah I find I have to to watch my fats, protein, and light carb intake like crazy. I can only eat certain carbs in small amounts, and mostly live off fats like almonds, coconut, pumpkin seeds, hemp seeds, avocados, flax, and chia seeds. I find making puddings with nut milks, and blended pectin or knoxx with chia seeds and a nut butter is great. I then blend these with scoops of protein powder and into smoothies or icecream. I also eat a bunch of stir fries, soups, and omelettes of blended egg whites, avocado, and coconut yogurt or flour (to balance the fats and make fluffy). I make my own cheeses with nutritional yeast and cook it into soups and use it as a condiment alot for added B-vitamins etc. I go through several cups of nut based milks a day and several scoops of protein powders form plant based sources. I also love snacking on nuts, veggies, and seeds. To keep weight on some of the best things I have found are pumpkin seed protein powder, full fat coconut milk, and almond butter and use them daily when I try to bulk up a bit and try to eat a bit more pumpkin and banana chips. Few things I also like to make are my paleo cinnamon roll or cake, and dips out of coconut yogurt, seems good at keeping on weight. Good luck perhaps try to build up your own regime.

 

[Fbmb]

1 hour ago, Ennis_TX said:

Yeah I find I have to to watch my fats, protein, and light carb intake like crazy. I can only eat certain carbs in small amounts, and mostly live off fats like almonds, coconut, pumpkin seeds, hemp seeds, avocados, flax, and chia seeds. I find making puddings with nut milks, and blended pectin or knoxx with chia seeds and a nut butter is great. I then blend these with scoops of protein powder and into smoothies or icecream. I also eat a bunch of stir fries, soups, and omelettes of blended egg whites, avocado, and coconut yogurt or flour (to balance the fats and make fluffy). I make my own cheeses with nutritional yeast and cook it into soups and use it as a condiment alot for added B-vitamins etc. I go through several cups of nut based milks a day and several scoops of protein powders form plant based sources. I also love snacking on nuts, veggies, and seeds. To keep weight on some of the best things I have found are pumpkin seed protein powder, full fat coconut milk, and almond butter and use them daily when I try to bulk up a bit and try to eat a bit more pumpkin and banana chips. Few things I also like to make are my paleo cinnamon roll or cake, and dips out of coconut yogurt, seems good at keeping on weight. Good luck perhaps try to build up your own regime.

 

So it can be a struggle to keep weight on with celiac? I always figured that I'd gain weight - though I never had a problem keeping on weight when I was eating gluten. I think it makes sense that I've cut out a lot of garbage. I don't eat much processed foods because I don't tolerate them well yet. I don't eat fast food. I don't eat out. I don't eat a ton of dairy. Before I was diagnosed it wasn't uncommon for me to eat Qdoba for lunch once a week, and for us to order pizza for dinner - and maybe even go out to breakfast on the weekend. I feel so limited now, so I guess it makes sense that I would lose weight. I also don't eat huge portions of high calorie foods because those foods also contain a lot of sugar, fat, and sodium - which, because of my health anxiety, I'm terrified to eat in large quantities. 

These are good tips. I do need to see a nutritionist, but I've heard from multiple celiacs that they felt that the nutritionists were useless to them. My aunt saw one and said she learned more on her own than she ever did from the nutritionist. I think I need to get on here and find more information about gluten free recipes and snacks. I like nuts a lot though. I also like fruits and veggies. it's just more a matter of getting to the store every few days to buy them because they don't last long and I don't buy them in huge quantities. 

[Fbmb]

1 hour ago, cyclinglady said:

Normal, I would say.  Given that you have modified your diet and  have intestinal damage as GFMe pointed out. But where are the fruit and veggies?  Good fats?  Hoping you left that out of your description because you just focused on the "main course"  during this post.  ?

And let's not forget that you are just diagnosed, still trying to watch everything that goes into your mouth, worried about gluten.  Let's not forget a new puppy and two small children.  

 

Yesterday wasn't a good day. I did have an apple in between meals. But aside from that apple, that's literally all I ate yesterday. I got so busy at work and didn't make time to eat. And my stress level is probably a factor. :/ 

[cyclinglady]

I am not a dietician, but I can say that I am  healthy for celiac (my GI measured all my nutritional levels and I am not deficient in anything and I take NO supplements!).   No sugar (exception holidays) and plenty of FAT!  Good fats like butter, avocado, olive oil, etc.  Those fats fill you up.  

You need to understand that about 2/3 of celiacs do not heal.  This is a fact.  Google it.    Why?  Researchers think that most likely celiacs are exposed to gluten by accident and some are crazy enough not to comply with the gluten-free diet (my PCP has two such patients).  Too many celiacs convert their regular Standard American Diet (SAD) over to a gluten free SAD.  This is a diet full of processed gluten-free junk food with little nutritional value.  Fine for a healed celiac -- sort of.....but that is another conversation.  

Think of food right now as medication.....stuff you need to speed healing.  Ennis_Texas is doing a great job of working around gluten-free foods and his intolerances, so I do not worry about him.  Your gluten-free bread, pasta, chips and cereal is honestly -- junk food.  Eating just an apple for an entire day is kind of crazy.  Would you miss your dosages of antibiotics if you had an infection?  

I know you are busy working, kids, new dog, but you have to slow down and focus on you.  Your family needs a healthy Mom!  

 

[Gemini]

I still think the whole notion that 2/3 of all Celiac's do not fully heal is a crock of pooh.  It might be 2/3 of people who aren't careful with their diet ( all of the other people in my family with Celiac are nowhere near as compliant as I am and it drives me batty) or those who do not take the time to learn food and the diet correctly and are making mistakes.  I know plenty of us who have healed and don't even go to doctor's regularly about it because they are doing so well.  Let's face it...many go to GI's because they are having continuing problems.  Those who aren't, don't, so maybe they aren't even in the equation.  Doctor's do sometimes throw in the scare factor to keep appointment books full.  Why do I say this?  Because I want all newbies to have the expectation of healing and health.  Be good with your diet, don't cheat, and remain positive!

[Fbmb]

21 hours ago, cyclinglady said:

I am not a dietician, but I can say that I am  healthy for celiac (my GI measured all my nutritional levels and I am not deficient in anything and I take NO supplements!).   No sugar (exception holidays) and plenty of FAT!  Good fats like butter, avocado, olive oil, etc.  Those fats fill you up.  

You need to understand that about 2/3 of celiacs do not heal.  This is a fact.  Google it.    Why?  Researchers think that most likely celiacs are exposed to gluten by accident and some are crazy enough not to comply with the gluten-free diet (my PCP has two such patients).  Too many celiacs convert their regular Standard American Diet (SAD) over to a gluten free SAD.  This is a diet full of processed gluten-free junk food with little nutritional value.  Fine for a healed celiac -- sort of.....but that is another conversation.  

Think of food right now as medication.....stuff you need to speed healing.  Ennis_Texas is doing a great job of working around gluten-free foods and his intolerances, so I do not worry about him.  Your gluten-free bread, pasta, chips and cereal is honestly -- junk food.  Eating just an apple for an entire day is kind of crazy.  Would you miss your dosages of antibiotics if you had an infection?  

I know you are busy working, kids, new dog, but you have to slow down and focus on you.  Your family needs a healthy Mom!  

 

I'm just confused about what to eat. My GI told me to stay away from processed junk as much as I can, so I do. But he said that having a piece or two of gluten-free toast with eggs, or spaghetti with gluten-free noodles, or a bowl of cereal is fine. In fact, he told me he DOESN'T want me to be too restrictive with my diet, because that could cause a host of other issues. I think I eat pretty healthy. But I don't see why I can't have toast, pasta, and cereal. I couldn't function if all I chose to eat were nuts, meat, vegetables, and fruit. I would be hungry all the time. So I'm confused as to why I've heard from some people that my GI is wrong, and then others have told me that he sounds right. My aunt is healed. She is in her 50s and has had celiac for 18 years. She told me I could eat those things, as long as they're gluten free. And it isn't all that I eat. But I do eat toast. I do cook pasta once a week. I do have cereal with my son. I don't get how that's going to set me back if I feel better and if my doctor told me it's ok. I guess I'm just confused. 

[Fbmb]

20 hours ago, Gemini said:

I still think the whole notion that 2/3 of all Celiac's do not fully heal is a crock of pooh.  It might be 2/3 of people who aren't careful with their diet ( all of the other people in my family with Celiac are nowhere near as compliant as I am and it drives me batty) or those who do not take the time to learn food and the diet correctly and are making mistakes.  I know plenty of us who have healed and don't even go to doctor's regularly about it because they are doing so well.  Let's face it...many go to GI's because they are having continuing problems.  Those who aren't, don't, so maybe they aren't even in the equation.  Doctor's do sometimes throw in the scare factor to keep appointment books full.  Why do I say this?  Because I want all newbies to have the expectation of healing and health.  Be good with your diet, don't cheat, and remain positive!

My doctor has never said that eating processed gluten-free food would ruin my healing. My problem is that I can't eat gluten. If I eat things that are gluten free I'm not ruining my intestine. Maybe I'm not fueling my body like I could be. Maybe I'm taking in too much sodium. Maybe it isn't good for me. But I don't see how anyone who hasn't healed would blame that on eating gluten free processed foods. It makes sense to me that it would take longer to heal if someone isn't eating healthy, because whether its a cold, a rash, or celiac, your body needs nutrition to heal. But I don't think that eating processed foods is breaking off their villi and causing them to be glutened. It could be giving them diabetes, high blood pressure, and high cholesterol, but I don't think it's impacting their celiac, specifically. My understanding (and I think the understanding of my doctor) is that eating a gluten free diet is what we need to do. So if people aren't healing then I suspect, like you said, it's because they're eating gluten.

[tessa25]

26 minutes ago, Fbmb said:

My understanding (and I think the understanding of my doctor) is that eating a gluten free diet is what we need to do. So if people aren't healing then I suspect, like you said, it's because they're eating gluten.

My understanding is as follows: (an analogy)

Lets say you were having a really bad day and a hammer kept falling on your hand causing a new break each time (ouch!). Obviously you get rid of the hammer (gluten). But you're still left with a hand with multiple broken bones (damaged intestines). You can't use it like a healthy hand, you have to set the bones, wrap the hand, not use it for a while in order for it to heal.

Getting rid of gluten gets rid of the original cause of the damaged intestines, but I think one needs to go easy on the intestines to give them a chance to heal. That is accomplished by eating things that are easy for you to digest. The details of what is easy on the intestines appears to be different for everyone.

I've been getting TTG IGA and TTG IGG tested monthly so I could figure out what allows me to heal and what doesn't. And, for me, there is a one to one correlation between me eating anything acidic or with spices in the ingredient list and my numbers not improving that month. So, for me, it's bland soft food. As soon as I can eat meat and veggies (they make me slightly nauseous at the moment) I will gladly go back to my original diet of meat and veggies.

[Fbmb]

7 minutes ago, tessa25 said:

My understanding is as follows: (an analogy)

Lets say you were having a really bad day and a hammer kept falling on your hand causing a new break each time (ouch!). Obviously you get rid of the hammer (gluten). But you're still left with a hand with multiple broken bones (damaged intestines). You can't use it like a healthy hand, you have to set the bones, wrap the hand, not use it for a while in order for it to heal.

Getting rid of gluten gets rid of the original cause of the damaged intestines, but I think one needs to go easy on the intestines to give them a chance to heal. That is accomplished by eating things that are easy for you to digest. The details of what is easy on the intestines appears to be different for everyone.

I've been getting TTG IGA and TTG IGG tested monthly so I could figure out what allows me to heal and what doesn't. And, for me, there is a one to one correlation between me eating anything acidic or with spices in the ingredient list and my numbers not improving that month. So, for me, it's bland soft food. As soon as I can eat meat and veggies (they make me slightly nauseous at the moment) I will gladly go back to my original diet of meat and veggies.

And all of that makes sense to me. I guess people are under the impression that I'm stuffing my face with nothing but processed foods. And maybe that's my fault for giving that impression. Today for lunch I brought a salad with chicken and full-fat sour cream. Sour cream doesn't bother me. I also need to eat grains for the fiber and to break down fats - which is why I eat (in moderation) gluten-free whole grain bread, brown rice, etc. But maybe that's wrong? We put garlic on our salmon and I put garlic in my eggs, because I like it and I've read about how good it is for you. But spices aren't ok? I'm just really confused and feel like a total failure - even though I thought I was doing ok.

I guess I'm just confused and need to talk with my GI some more.

[tessa25]

14 minutes ago, Fbmb said:

And all of that makes sense to me. I guess people are under the impression that I'm stuffing my face with nothing but processed foods. And maybe that's my fault for giving that impression. Today for lunch I brought a salad with chicken and full-fat sour cream. Sour cream doesn't bother me. I also need to eat grains for the fiber and to break down fats - which is why I eat (in moderation) gluten-free whole grain bread, brown rice, etc. But maybe that's wrong? We put garlic on our salmon and I put garlic in my eggs, because I like it and I've read about how good it is for you. But spices aren't ok? I'm just really confused and feel like a total failure - even though I thought I was doing ok.

I guess I'm just confused and need to talk with my GI some more.

I can't say if spices would bother you. If you get sick from some foods and not others, then I would expect that the foods that don't make you sick are good for you. Make a detailed food log and if you go a few days without issue, then the foods you ate must be good for you.

Now that I'm no longer slightly nauseous all day I can tell when I mess up by looking at my log and seeing what I did the day before or that day to cause it.

As for how healthy your diet is, my 'good' diet is mashed potato soup, vanilla ice cream, and chocolate drink. I've recently added on Canyon Bakehouse bagels with american cheese to up my calcium. So I'm nobody to speak to about eating healthy while healing. I'm just going with what is allowing my numbers to go down so I can happily get back to eating meat and veggies.

[Fbmb]

1 minute ago, tessa25 said:

I can't say if spices would bother you. If you get sick from some foods and not others, then I would expect that the foods that don't make you sick are good for you. Make a detailed food log and if you go a few days without issue, then the foods you ate must be good for you.

Now that I'm no longer slightly nauseous all day I can tell when I mess up by looking at my log and seeing what I did the day before or that day to cause it.

As for how healthy your diet is, my 'good' diet is mashed potato soup, vanilla ice cream, and chocolate drink. I've recently added on Canyon Bakehouse bagels with american cheese to up my calcium. So I'm nobody to speak to about eating healthy while healing. I'm just going with what is allowing my numbers to go down so I can happily get back to eating meat and veggies.

I think thats where I am too. I'm just eating what doesn't make me feel like poop. Kind of like when I was pregnant. ha.

Like, I had corn chips (doritos) a few weeks ago and felt awful the next morning. then I had popcorn. Same thing. Then corn chex. Same thing. So I'm staying away from that. But rice chex are fine for me so far. Dairy is ok - but in small quantities. Sometimes I just have an off day and then I'm really confused because I can't sort out what did it. But then I remember that not everything can be attributed to celiac. Maybe an off day is just an off day. Or a bug. Or gas. Or ovulation. or.....

Can I have canned beans? They haven't bothered me and I've made sure to use gluten-free canned beans. But I make a great green/white chili with navy beans, hominy, and green chilis but they're canned. I put pork in it and thicken with corn starch. I haven't had an issue but I don't know if it's ok. 

[cyclinglady]

3 hours ago, Fbmb said:

I'm just confused about what to eat. My GI told me to stay away from processed junk as much as I can, so I do. But he said that having a piece or two of gluten-free toast with eggs, or spaghetti with gluten-free noodles, or a bowl of cereal is fine. In fact, he told me he DOESN'T want me to be too restrictive with my diet, because that could cause a host of other issues. I think I eat pretty healthy. But I don't see why I can't have toast, pasta, and cereal. I couldn't function if all I chose to eat were nuts, meat, vegetables, and fruit. I would be hungry all the time. So I'm confused as to why I've heard from some people that my GI is wrong, and then others have told me that he sounds right. My aunt is healed. She is in her 50s and has had celiac for 18 years. She told me I could eat those things, as long as they're gluten free. And it isn't all that I eat. But I do eat toast. I do cook pasta once a week. I do have cereal with my son. I don't get how that's going to set me back if I feel better and if my doctor told me it's ok. I guess I'm just confused. 

My apologies to you!  I do not think I was communicating well at all.  

It is fine to eat gluten-free foods that are processed as long as you can tolerate them.  (I have a freezer full of gluten-free cupcakes and cookies in my freezer right now!).  I did not mean to imply that gluten free foods like pasta and bread can damage your small intestine the way gluten can.   It is just that those who are newly diagnosed, may have a hard time processing ANY food for a few weeks or after a glutening.  For them a Whole Foods diet might be best for them.  But, everyone is different and everyone must find their own means of healing.  

In my case, I was just anemic when I was getting diagnosed with no gut issues.  I had seven weeks before my endoscopy and even though my blood test was considered mildly positive, I just knew that my biopsy was going to reveal damage.  My hubby had been gluten free for 12 years.  I knew what that meant.  So, I literally spent seven weeks eating gluten.  I must have bought all my old favorite foods (just took a few cookies or so and tossed the rest of the package for example).  By the time my endoscopy rolled around, it was obvious that gluten was making me sick (now my gut was involved).  

Here is why I tend to encourage good Whole Foods.  I easily converted over to the gluten-free diet.  Ate processed foods that I fed my hubby.  Except he had been healed for years.  I had the damaged gut.  So, this is just my opinion, but when I cut back on gluten-free processed food, I finally felt well.   Could I have sped up the healing process with a better diet?  I think so, but I do not concrete proof.  

I should not have said that 2/3 of people do not heal.  It is true, but that was from one study.  Frankly, there are many conflicting studies, but more recent ones seem to show that there is a lot of healing.  Not everyone gets follow-up biopsies, but many forum members report complete healing!   So, it was not my internet to be a "Debbie Downer".  

Here is more current study:

Open Original Shared Link

Your chili?  Sounds great.  Perfect for a winter a winter day.  You are not a failure!  Getting a celiac diagnosis is hard!  But with time, you will improve.  Most members get so well, they stop visiting the forum.  They are too busy and are no longer sick!  

 

 

[GFinDC]

I'd think if you are losing weight then that is an indicator you are doing something wrong in your diet.  Not having a gut that is in perfect shape to absorb nutrients means you may need to up your calorie count and include as much high quality protein as possible.  Empty calories from gluten-free processed foods are not real helpful nutrition.  If you put low octane fuel in a race car it won't perform as well as a car next to it with high octane fuel.

Our guts can normally absorb sufficient calories and nutrients to keep us healthy and weight stable.  "Our" meaning people without celiac disease and celiacs who have been on the gluten-free diet long enough to heal.  You are in the group of people having celiac who have not been on the gluten-free diet long enough to heal their guts.  So high quality nutrition (high octane fuel) is what you really need right now IMHO.  That means lots of protein (meats), veggies, nuts, eggs.  Also foods that are low on carbs and sugars.  Carbs and sugars can fill you up but how many vitamins and minerals are you getting from them?  Plus carbs and sugars can cause boating due to poor gut flora related to gut damage.  Dairy is well known as a cause of inflammation which you probably have more than enough of in your gut already.

The reason we recommend a whole foods diet is it is high calorie and high nutrition.  Plus you don't have to worry about cross contamination and ingredients as much.  So you can hopefully heal faster by simplifying your diet.  The gluten-free whole foods diet is a big change for many people, and it does take some adjustment.  But it is not a forever thing, once you are healed up and your digestion is back to good shape, you can add processed foods back into your diet.   It's just at the beginning of the gluten-free diet it is easier/faster to heal by keeping things simple and high nutrition.

Some people aren't willing to change and they may heal too.  But it may take them twice or three times as long also IMHO.  And that extra healing time may not seem real fun after a year or two.

Your doctor may be an expert on celiac disease, but if he doesn't have celiac and have years of experience with the gluten-free diet himself, I don't think he really understands what it takes to recover.  Living with celiac is different than reading about it in a book.  You have first hand experience from people on this forum who have years of real life dealing with celiac disease and healing.  We aren't trying to steer you wrong.  We also don't charge anything.  And all our children are above average or something like that.

High quality protein, calorie dense foods, low risk of gluten contamination.  What more could you ask for?  Variety?  You can make variety in your whole foods diet by cooking more like people did 200 years ago.  People back then didn't have fancy processed foods to eat.  But they ate just fine without it.  Try it for 6 months and see if it works.  Remember that it is a small amount of time in a diet change that lasts for the rest of your life.  You may find after a while that the processed foods you thought were so great are not as appealing anymore.  Your taste in foods may change a lot.  Some things you thought were great before, like pizza perhaps, may even smell bad to you.  McDonald's food smell may make you sick.

You'll be missing out on a  lot of preservatives (anti-bacterials), flavor enhancers, coloring agents, emulsifiers, and some fine packaging.  You'll probably reduce the chemical load on your liver by 50%, {just  a guess}.  You'll be eating foods with more nutrition (vitamins, minerals, fats) which is good.  You'll probably be eating better than you ever have in your life.

But again, you can go back to eating processed crap (foods) once you are healed.  If that's what makes you happy.  Right now you are trying to turn the corner to a healthier life.  Food is your main ally and also your main enemy.  It's a delicate dance.  And a learning experience.

[Fbmb]

12 minutes ago, GFinDC said:

I'd think if you are losing weight then that is an indicator you are doing something wrong in your diet.  Not having a gut that is in perfect shape to absorb nutrients means you may need to up your calorie count and include as much high quality protein as possible.  Empty calories from gluten-free processed foods are not real helpful nutrition.  If you put low octane fuel in a race car it won't perform as well as a car next to it with high octane fuel.

Our guts can normally absorb sufficient calories and nutrients to keep us healthy and weight stable.  "Our" meaning people without celiac disease and celiacs who have been on the gluten-free diet long enough to heal.  You are in the group of people having celiac who have not been on the gluten-free diet long enough to heal their guts.  So high quality nutrition (high octane fuel) is what you really need right now IMHO.  That means lots of protein (meats), veggies, nuts, eggs.  Also foods that are low on carbs and sugars.  Carbs and sugars can fill you up but how many vitamins and minerals are you getting from them?  Plus carbs and sugars can cause boating due to poor gut flora related to gut damage.  Dairy is well known as a cause of inflammation which you probably have more than enough of in your gut already.

The reason we recommend a whole foods diet is it is high calorie and high nutrition.  Plus you don't have to worry about cross contamination and ingredients as much.  So you can hopefully heal faster by simplifying your diet.  The gluten-free whole foods diet is a big change for many people, and it does take some adjustment.  But it is not a forever thing, once you are healed up and your digestion is back to good shape, you can add processed foods back into your diet.   It's just at the beginning of the gluten-free diet it is easier/faster to heal by keeping things simple and high nutrition.

Some people aren't willing to change and they may heal too.  But it may take them twice or three times as long also IMHO.  And that extra healing time may not seem real fun after a year or two.

Your doctor may be an expert on celiac disease, but if he doesn't have celiac and have years of experience with the gluten-free diet himself, I don't think he really understands what it takes to recover.  Living with celiac is different than reading about it in a book.  You have first hand experience from people on this forum who have years of real life dealing with celiac disease and healing.  We aren't trying to steer you wrong.  We also don't charge anything.  And all our children are above average or something like that.

High quality protein, calorie dense foods, low risk of gluten contamination.  What more could you ask for?  Variety?  You can make variety in your whole foods diet by cooking more like people did 200 years ago.  People back then didn't have fancy processed foods to eat.  But they ate just fine without it.  Try it for 6 months and see if it works.  Remember that it is a small amount of time in a diet change that lasts for the rest of your life.  You may find after a while that the processed foods you thought were so great are not as appealing anymore.  Your taste in foods may change a lot.  Some things you thought were great before, like pizza perhaps, may even smell bad to you.  McDonald's food smell may make you sick.

You'll be missing out on a  lot of preservatives (anti-bacterials), flavor enhancers, coloring agents, emulsifiers, and some fine packaging.  You'll probably reduce the chemical load on your liver by 50%, {just  a guess}.  You'll be eating foods with more nutrition (vitamins, minerals, fats) which is good.  You'll probably be eating better than you ever have in your life.

But again, you can go back to eating processed crap (foods) once you are healed.  If that's what makes you happy.  Right now you are trying to turn the corner to a healthier life.  Food is your main ally and also your main enemy.  It's a delicate dance.  And a learning experience.

I think my problem when I eat whole foods is calories. I do try hard to eat lots of whole foods, as I have a family history of diabetes. My parents both have high blood pressure. Luckily mine is primo. I'm about 111/65 and my cholesterol is 151. When I was pregnant I was really diligent about eating healthy. But I was eating all the dang time! I felt like to keep my calories up I was munching all day long. I'd have eggs and toast for breakfast, then cheese and whole wheat crackers (yikes...) for a snack, then lunch, then an apple and peanut butter, then a high protein granola bar, then carrots or celery, then dinner, then some air popped popcorn, then some milk....You see? I have a good grasp of healthy foods but I have a hard time taking in a lot of calories when I eat healthy. I honestly think I lost weight because I was eating like crap before. I would eat Qdoba once a week. Pizza once a week. Eat out on weekends. And I can eat like a linebacker. So I'd eat a whole burrito, 2 slices of pizza, a big breakfast on weekends. I always maintained eating healthy foods as well, but I was eating a lot of garbage. We ate out a lot. My husband and I are really busy, so we didn't cook like we do now. I think that now I'm eating healthier and the weight has come off on its own. So I'm not sure I'm necessarily doing anything wrong. I just don't think I'm eating enough because I feel restricted in what I can have. Maybe I'm rambling. 

[Fbmb]

1 hour ago, cyclinglady said:

My apologies to you!  I do not think I was communicating well at all.  

It is fine to eat gluten-free foods that are processed as long as you can tolerate them.  (I have a freezer full of gluten-free cupcakes and cookies in my freezer right now!).  I did not mean to imply that gluten free foods like pasta and bread can damage your small intestine the way gluten can.   It is just that those who are newly diagnosed, may have a hard time processing ANY food for a few weeks or after a glutening.  For them a Whole Foods diet might be best for them.  But, everyone is different and everyone must find their own means of healing.  

In my case, I was just anemic when I was getting diagnosed with no gut issues.  I had seven weeks before my endoscopy and even though my blood test was considered mildly positive, I just knew that my biopsy was going to reveal damage.  My hubby had been gluten free for 12 years.  I knew what that meant.  So, I literally spent seven weeks eating gluten.  I must have bought all my old favorite foods (just took a few cookies or so and tossed the rest of the package for example).  By the time my endoscopy rolled around, it was obvious that gluten was making me sick (now my gut was involved).  

Here is why I tend to encourage good Whole Foods.  I easily converted over to the gluten-free diet.  Ate processed foods that I fed my hubby.  Except he had been healed for years.  I had the damaged gut.  So, this is just my opinion, but when I cut back on gluten-free processed food, I finally felt well.   Could I have sped up the healing process with a better diet?  I think so, but I do not concrete proof.  

I should not have said that 2/3 of people do not heal.  It is true, but that was from one study.  Frankly, there are many conflicting studies, but more recent ones seem to show that there is a lot of healing.  Not everyone gets follow-up biopsies, but many forum members report complete healing!   So, it was not my internet to be a "Debbie Downer".  

Here is more current study:

Open Original Shared Link

Your chili?  Sounds great.  Perfect for a winter a winter day.  You are not a failure!  Getting a celiac diagnosis is hard!  But with time, you will improve.  Most members get so well, they stop visiting the forum.  They are too busy and are no longer sick!  

 

 

I think I was just confused about the processed foods. And I don't eat them often. I think I ate them more when i was first diagnosed, and I wasn't feeling like I was getting better (I posted a lot about my belly on here back in November) so I cut back on that stuff and I've noticed that I'm doing a little better. I'm still having a couple "off" mornings every week. But for the most part things seem ok. I'm definitely better than I was. Tonight we're having salmon (I've been eating a ton of salmon) with a pasta that I make with olive oil, lemon, and garlic. It hasn't seemed to bother me. But as I feel better it's also easier to pin-point the things that upset my stomach. Whereas before, everything seemed to. But I still have a handful of chips. Or a handful of crackers. Last night on my taco salad I had about 8 corn chips crunched in. But honestly, when I think about it, I haven't eaten a lot of processed foods (aside from bread, pasta, and cereal) in the past few weeks since my doctor told me to stay away from it (as a doctor he'd prefer EVERYONE stay away from it because it's garbage, but that's another story). 

I've learned a lot from your posts, by the way. Thank you for caring. 

[squirmingitch]

How tall are you? You've told us your weight but the weight without the height gives us nothing to go on. For example, I am 5'2", if I weighed 148 I would be Miss Tubby Chubby!

Another thing is, I think as time progresses, I believe your weight will settle into something normal for you. Remember, big changes are going on in your body now. Think of it like being pregnant if you will. You are no longer eating gluten & so your body is now saying, Oh Yeah! I can start healing!!!! Woooo Hooooo!!!! It takes energy to heal. A LOT of energy. Your body is trying to repair not only damage to your gut but damage that was caused elsewhere throughout your body by not absorbing the nutrients you were eating. Your body is now using all available calories and resources to put to use repairing everywhere there was damage. It isn't going to let you have any calories for making fat at the present time. I believe that once you've healed then you may find you are gaining too much weight & have to go on a diet or maybe not -- you won't know until you get there. You might be a naturally thin person. We just don't know --- you won't know until you get to that point. Who knows how long gluten was affecting your body; months, years, a decade, more? No one can really say. Undiagnosed celiacs can be as fat as a hippo or as skinny as a toothpick or anywhere in between. Malabsorption can make people put on fat (weight) OR it can cause them to lose weight. Every person is an individual but malabsorption simply means your body is not PROPERLY able to make use of the nutrition you are putting into it and this can result in fat or skinny or something else. 

It sounds like you are pretty good at eating a well rounded diet. As long as you're not pigging out on junk/processed food all the time then chill out & don't freak out. Remember when I said it was going to be a roller coaster for a while? Apply this same to the way you think about your weight gains or losses. Roller coaster! I think you've pretty well learned by now how to tell when a particular food doesn't agree with you yet and you then avoid that food. That's GREAT.

I agree with everyone else that whole, unprocessed foods will give you optimum ability for healing but I certainly don't think you need to be rabid about never eating some gluten-free crackers or bread --- you're 3 months in now --- I wouldn't be saying that if you had just started the diet a week or two ago.

[Fbmb]

20 hours ago, squirmingitch said:

How tall are you? You've told us your weight but the weight without the height gives us nothing to go on. For example, I am 5'2", if I weighed 148 I would be Miss Tubby Chubby!

Another thing is, I think as time progresses, I believe your weight will settle into something normal for you. Remember, big changes are going on in your body now. Think of it like being pregnant if you will. You are no longer eating gluten & so your body is now saying, Oh Yeah! I can start healing!!!! Woooo Hooooo!!!! It takes energy to heal. A LOT of energy. Your body is trying to repair not only damage to your gut but damage that was caused elsewhere throughout your body by not absorbing the nutrients you were eating. Your body is now using all available calories and resources to put to use repairing everywhere there was damage. It isn't going to let you have any calories for making fat at the present time. I believe that once you've healed then you may find you are gaining too much weight & have to go on a diet or maybe not -- you won't know until you get there. You might be a naturally thin person. We just don't know --- you won't know until you get to that point. Who knows how long gluten was affecting your body; months, years, a decade, more? No one can really say. Undiagnosed celiacs can be as fat as a hippo or as skinny as a toothpick or anywhere in between. Malabsorption can make people put on fat (weight) OR it can cause them to lose weight. Every person is an individual but malabsorption simply means your body is not PROPERLY able to make use of the nutrition you are putting into it and this can result in fat or skinny or something else. 

It sounds like you are pretty good at eating a well rounded diet. As long as you're not pigging out on junk/processed food all the time then chill out & don't freak out. Remember when I said it was going to be a roller coaster for a while? Apply this same to the way you think about your weight gains or losses. Roller coaster! I think you've pretty well learned by now how to tell when a particular food doesn't agree with you yet and you then avoid that food. That's GREAT.

I agree with everyone else that whole, unprocessed foods will give you optimum ability for healing but I certainly don't think you need to be rabid about never eating some gluten-free crackers or bread --- you're 3 months in now --- I wouldn't be saying that if you had just started the diet a week or two ago.

bahaha miss tubby chubby. I'm 5'5 on my best day. I'm not a tall girl. And 148 isn't what I "want" to weigh. I'd love to weigh 135. I think I'm just so surprised that I've lost almost 10 lbs in 9 weeks without exercising or counting calories. I used to do p90x and count calories to lose even 1 lb a week. And now I'm not working out at all (I should be, but...life) and I'm not counting calories and I'm losing weight. I'm also so tired. I'm so, so tired. But I figure that I will be for a while because like you said, it takes a lot of energy to heal. And we've talked about my self-care, or lack thereof. And my anxiety....So I think the fatigue is expected.

I think that my weight battle before diagnosis was gluten. I really do. Because I ate pretty healthy. I know I said earlier that I binged on take-out and ate a lot, but I didn't do that daily. I have always stayed FAR away from sugar. The stuff terrifies me. I don't drink alcohol. I always ate whole wheat noodles, breads, etc. You wouldn't find me eating white bread, noodles or rice. But I don't think all of that mattered because I had celiac and didn't know about it. So I think it makes sense that I battled my weight. I also probably had a lot of inflammation. When I was pregnant, even like 7 weeks in, I looked like I was 6 months pregnant by bedtime. I was so bloated. I feel a lot less bloated now. My belly is flat at bedtime. So I think that the weight kind of took care of itself. You know? I don't think my body wanted to weigh 158. I was trying to get the weight off after baby and it was taking forever. I was 175 when I delivered. I gained about 30 lbs with each of my kids. My happy weight is 140. So I'm not over here panicking that I'm 148. I think I'm just surprised that it came off so easily and quickly. Because that hasn't been my experience.

Seriously, from the bottom of my heart, thank you all for supporting me. This has been scary, and confusing, and upsetting. And I love you all for being my Celiac friends and carrying me through it. <3 

[squirmingitch]

So from what you've said, I agree it sounds like the weight was celiac putting it on you. Just converting whatever you took in into fat, meanwhile everything that needed nutrients was starving. Ha! You might just find out in the end that you're naturally a skinny mini. 

I have to mention that from my perspective, it seems like your anxiety is a good bit less. Am I right? Do you feel that way? This post did not have that screaming desperation, panic edge to it. It really struck me how much more calm & level you've been on this thread. Before when you would post, it was like EEEEEEEEEEEEEEEEEEEEEEEEEEEEKKKKKK!!!! I'm FREAKING OUT! This time, it was like you are concerned and questioning but not "over the top".

[icelandgirl]

Hi Fbmb!

I lost 35 pounds in the first 6 months after diagnosis and going gluten free.  I think I had so much inflammation from untreated celiac as my size did not correspond in any way to how much I ate.  For a while I was happy with the weight loss, but it got to a point where I was really ready for it to stop.  I looked at what I was eating.. at the time all whole foods...plugged it all in to fitnesspal.com and found I was getting about 1400-1500 calories a day and that I needed 1700-1800 a day just to maintain.  I added some things in and kept track of my calories for a while.  Staying in that calorie range my weight loss stopped and everything levelled out and has stayed that way for about 2 years.

I hope it helps to m own that you're not alone in experiencing that!  Keep eating things that work for you and feel good to your healing gut.  ((((Hugs))))

[Beverage]

As soon as I was diagnosed and went gluten free, I dropped 30 lbs in a month!!!  For me it was all inflammation. I was emaciated underneath the swelling.   It's taking me almost 2 years to build back up to feeling strong again.  Now I'm lean and mean at 60.

[Fbmb]

On 1/13/2017 at 6:12 PM, squirmingitch said:

So from what you've said, I agree it sounds like the weight was celiac putting it on you. Just converting whatever you took in into fat, meanwhile everything that needed nutrients was starving. Ha! You might just find out in the end that you're naturally a skinny mini. 

I have to mention that from my perspective, it seems like your anxiety is a good bit less. Am I right? Do you feel that way? This post did not have that screaming desperation, panic edge to it. It really struck me how much more calm & level you've been on this thread. Before when you would post, it was like EEEEEEEEEEEEEEEEEEEEEEEEEEEEKKKKKK!!!! I'm FREAKING OUT! This time, it was like you are concerned and questioning but not "over the top".

I just saw that you replied to this!

My anxiety has been bad lately. It's been pretty terrible actually. But I am trying to keep things in perspective and not let myself get out of control. Like today I googled "floating stools" and panicked over my pancreas. Stuff like that.  

[squirmingitch]

Awwwwwwwwww, I'm sorry. Okay don't go Googling so much. Floating stools are celiac -- forget the pancreas stuff you read.