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Anyone Newly Diagnosed Starving?


danikali

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RiceGuy Collaborator
...do you know of any casein free cheeses? That's my favorite food of all time, and I miss it, A LOT!

Here are some casein free, lactose free, gluten free cheeses:

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aikiducky Apprentice
Now, i find it hard to get the fiber in my diet in the same amounts. I know a lot of fruits and veggies are high in fiber as you pointed out, but i have eliminated a huge portion of my daily fiber w/ my lack of wheat.

One thing I had to change when I went gluten free, was my thinking about the amount of vegetables it's possible to eat in one meal! I eat HUGE amounts of veggies nowadays. When I make salad for myself, I make what I would have considered enough for four people before my gluten-free days. :blink:

Basically my attitude used to be that veggies are a side dish, now veggies are the meal, with a bit of meat or fish on the side. :D

Oh, and when I first went gluten free, I used to eat eat eat eat all day! I didn't gain ANY weight at all! Nowadays I feel satisfied with much less. I guess I was just starving for nutrients and stuff.

Pauliina

danikali Enthusiast
One thing I had to change when I went gluten free, was my thinking about the amount of vegetables it's possible to eat in one meal! I eat HUGE amounts of veggies nowadays. When I make salad for myself, I make what I would have considered enough for four people before my gluten-free days. :blink:

Basically my attitude used to be that veggies are a side dish, now veggies are the meal, with a bit of meat or fish on the side. :D

Oh, and when I first went gluten free, I used to eat eat eat eat all day! I didn't gain ANY weight at all! Nowadays I feel satisfied with much less. I guess I was just starving for nutrients and stuff.

Pauliina

(Knock on wood) but I also find that no matter how much I eat, I'm not gaining any weight! It's kind of crazy considering the amount of food I eat now, and the portion sizes. It's also crazy how I could eat a lot a lot a lot and NOT GET BLOATED! Before gluten-free, I would eat a small meal and still find myself SO BLOATED and I would feel like I gained 10lbs just from a sandwhich! Or soup! Actually, I would! (Probably all water weight though).........but I just don't want to gain any weight, and it's kind of like I keep eating and eating and I'm wondering, okay, some of this has to turn into fat! Yesterday I had (for dinner only), a whole piece of salmon AND some more steak from the night before! Not to mention rice cakes, 2 clementines, a HUGE bowl of applesauce, 2 HUGE glasses of rice milk, and some dried cranberries! I'M EATING MORE THAN MY FIANCE!! And that was all just for dinner! But I woke up this morning and feel great!? ? :blink:

I also think that's a really good idea to make lots of veggies for the "main meal" and the meat for the "side dish"......I probably need more veggies in my diet. I do munch on carrots all day long, but for dinner I usually only make a little bit of green beans, or corn, or broccoli, or asparagus. I should be eating more of that!

And Carrie, that would be great if you found out what cheeses you eat are casein free because I miss cheese. And you really should try that rice milk, or maybe not because you might become additcted like me!

aikiducky Apprentice

To give you an idea of what I might cook for dinner: one courgette, a couple carrots, a big piece of leek, yellow pepper, some broccoli, mushrooms. It makes a whole panful, and I often eat it all. Or I leave some leftovers for the next day. Plus some meat or fish as i said. :)

Pauliina

CMCM Rising Star

The valuable thing I have found about losing weight, gluten-free or otherwise, is that SUGAR is the devil for hunger, as are carbs without protein to modify and balance them. As soon as I cut sugar pretty much totally out of my diet, and I made sure to always eat a good carb item WITH some kind of protein (for example, an apple and a piece of string cheese), I found the sugar/insulin swings went away. I don't get hungry, I don't get the ups and downs of hunger, and I try to eat small amounts of things every 2 to 3 hours. That's the key. And starchy things (potatoes and legumes) kill me, especially the potatoes. The starch turns to sugar immediately, so there you go again.

Merika Contributor

Hey Dani,

I wouldn't worry right now about gaining weight. Remember, celiac causes malabsorbtion, meaning you will eat but NOT ABSORB the fats and other nutrients. So if those labels or diet people say you should be eating 2000 calories or whatever a day, just throw that out, because who knows how much of that you're actually absorbing.

You might want to look into a digestive enzyme, which will help your body break down and use more of the nutrients you are eating. I like Cholocal by Standard Process, but there are all kinds. Read labels carefully for gluten, and then try a kind - not everyone tolerates all brands/varieties out there, even if they're gluten-free. So find one that works for you.

As for myself, I eat about every two hours. I can't eat huge meals, but I basically eat all day. I've been diagnosed almost 2 years.

Hth,

Merika

Jerri Ward Apprentice
Are you getting ehough fat and protein in EACH of your meals? It will help keep you full longer than a high-carb meal.

This is really scarey guys. I was diagnosed with Celiacs last week. I have had symptons for years. I have Sjrogren's Syndrome, Mirgaines, Depression, Hashimoto's Thyroiditis, Sec. Hyperparathyroidism, Arthritis, Fibromyalgia, CFS, Hypothyroid, fatigue to the point that I cannot breath. Vitamin D level is bottomed out. Osteopynia, PTH levels too high. My problem is that I eat very little. Back the first of the year I gained over 30 lbs. I could not imagine where it came from because I barely ate enough to keep a bird alive. I have managed to lose 22 lbs. The only problem is that I did not lose any of it in my stomach. I could not figure out why until I started reading about Celiac. My brother just found out that he has Celiacs last month. What a coincidence. He is not having fun with the diet either. Mostly what I eat revolves around bread and microwaveable Healthy Choice dinners. I do like my chocolate, but other than that I do not eat very much. I am concerned about the increase in appetite that you all are talking about since I have worked so hard to lose 22 lbs. I would love to hear any suggestions that you my have to offer. Oh, and by the way did I happen to mention that I am a very picky eater?


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Merika Contributor

Hi Jerri,

What your body did with food before going gluten free and what it does after going gluten free have nothing to do with each other. It's like feeding a whole different body, IMO. Or maybe several different bodies, lol, as you will heal and change and adapt along the way. Please don't freak out :D

Merika

Guest RachelLawson

Hi Dani

Yep - I was exactly the same. I was diagnosed with Coeliac Disease in late July of this year, and spent the whole of August and some of September feeling STARVING hungry. Nothing would fill me up. I could happily eat six meals a day - two breakfasts, two lunches and two dinners. My weight went up, and actually it needed to because I've always been too skinny. I'm not sure what I thought about having two bottoms though...

Then the hunger began to abate, and I found I had more energy and started to feel better. I gradually found I was comfortably eating less and at the same time was becoming more active as my strength improved. My weight levelled out, as did my appetite.

So - you don't say whether you're a skinny person or not, but I wonder if once we're gluten-free and our bodies begin to heal whether our bodies know what we need to be healthy and pull us up to the weight we should have been in the first place.

The other thing to say is that I don't eat anything processed really, apart from the odd gluten-free bar and of course Gluten-free bread which has been through various treatments. I do seem to live on bananas, apples, toast and Gluten-free cereal as snacks. But my meals are all home cooked basic meat and veggies, with no junk added.

It does get easier. Hang in there and give it time. A nurse once said to me, "Be kind to yourself" and she was right. I'm guilty of leaving several panic messages on these boards when I was first diagnosed, but everyone here was so kind and patient. And now? Life is improving steadily all the time and I can do so much more than I could - you will too. Roll on Summer, and good luck!

Rachel.

danikali Enthusiast

Wow! Thank you everyone!

Hahah, Rachel, you said you are guilty of leaving panic messages on this board, THAT'S ALL I DO when I get sick again! hahaha......it's like, I go straight to this forum and freak out to everyone! I love that everyone listens and still answers me just to put me at ease. That's so sweet and I appreciate it so much. I know that when I am feeling better more often, I will also help the "newbies" as much as I can. I love how everyone here completely understands because everyone in my life leaves me to worry more. They don't know what to say anymore and just hope that it will go away. They act like I should just ignore all of this, but IT'S SOOOOOOOOOOOOOO HARD when your body is always always always doing something wrong. YES, I have been eating like a 300lb man these days. I am 120lbs and 5'8, and I like my weight, I don't want to loose any of course, but I also don't want to BECOME that 300lb man! :P

But like you said Rachel, and everyone, it does make a lot of sense that I should ignore the calories right now because I'm probably still not absorbing everything correctly and when my body finally balances out, and I can eat normally again, I should be able to be at my perfect healthy weight.

It's kind of crazy........I got glutened IN A BAD BAD WAY on Sunday and was EXTREMELY SICK ALL DAY YESTERDAY. My stomach was ENORMOUS, and it hurt like HELLLLL, and I felt like all of my intestines were inflamed and that if someone touched me, I would burst. My back was burning with pain and my joints were achy too. But I WAS STILL HUNGRY! :blink: I couldn't believe that I was feeling so crappy, and I was still hungry! But then it got so bad the only thing I felt was safe enough to eat was applesauce, so I ate one and half jars for dinner!

Anyway, thanks again everyone, and if anyone else wants to post their experiencs and give me their motivating stories and how you feel so much better now, I WOULD LOVE TO READ THEM!

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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
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    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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