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2tired

Downward Spiral

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I have been on a downward spiral since I was diagnosed with Celiac in Nov. 05. I was 30 lbs. overweight and was aggressively working on losing the weight at the time I was diagnosed. Once I went on the gluten-free/wf diet, immediately started dropping weight. To date, I have lost 50 lbs. I cannot seem to find enough foods that are gluten-free. One problem is that I do not know how to cook. Also I live on disability and cannot afford the prepackaged gluten-free foods. I am so weak that I can barely get around. Also when I do try to eat, I can barely get the food to go down. It really makes me sick. It is like it was when I was anorexic 20 yrs. ago. I was wondering if anyone had any suggestions. I have an appt. with a dieticien this Friday. I would appreciate any suggestions that anyone might have.

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Jerri, what helped me was addressing the fatigue I was suffering as a result of being sick. Look up adrenal fatigue or adrenal burnout. It will give you some ideas on how to rest your body so that it can heal. Sometimes "just" being gluten-free isn't enough in the beginning.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Do you like chicken soup? Smoothies? Salads? These foods are very easy. When I was sick, the smoothies really helped me get my strength back. I drank alot of carrot juice then. I am on a healing diet so I eat meat, veggies, fruit, no nightshades, no dairy except yogurt, cream cheese, sour cream and no beans, no soy and no corn and no grains. Natural psyllium goes in the smoothies along with flax seed oil. My salad dressing is olive oil and raw apple cider vinegar.

Hope this helps and if you need directions or recipes let me know.


Lee

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Hi Jerri, I'm sorry to hear that you are having a difficult time finding food to eat.

I can relate, when I first started "melting" I needed to lose mabe 20 pounds and I've lost 40 now. I was glad to see the first twenty go but now it is a little scary.

You said you were anorexic twenty years ago, may I ask how you recovered? I am wondering what else is going on with you, you said you were on disability, could you say something about that? Are you still eating dairy, soy, corn? Do you have a history of health problems or did this just come about?

This is a great board with many knowledgeable people, not me I'm a newbie too :) , and my experience is the more people know the clearer it is too see issues. Some of us have been ill for a long time and are continuing to look into what is going wrong with our bodies. If you have days, I'm not kidding it's over 400 pages :lol: , the "OMG I may be able to eat dairy" is the thread we've been doing this on.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Concentrate on natural whole foods - what I mean is fruits, vegetables, meat, dairy (if you can tolerate it). All of these things are gluten free unless they're processed.

I wouldn't worry about he "special" gluten-free food. It is expensive and takes a little getting used to in taste and cooking and besides living without all of the bready things isn't the impossible task that it may look like at first.

Take a closer look at areas of your grocery store that maybe your not used to. I was completely in the habit of buying certain foods and it took me awhile to realize that there was alot of food around me that was gluten-free but I just never thought of eating it.

Like olives - they were always just a side dish at thanksgiving but now I eat them for snacks or breakfast and they are incredibly yummy all by themselves. I hope this helps some. :)

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Hi Jerri, I'm sorry to hear that you are having a difficult time finding food to eat.

I can relate, when I first started "melting" I needed to lose mabe 20 pounds and I've lost 40 now. I was glad to see the first twenty go but now it is a little scary.

You said you were anorexic twenty years ago, may I ask how you recovered? I am wondering what else is going on with you, you said you were on disability, could you say something about that? Are you still eating dairy, soy, corn? Do you have a history of health problems or did this just come about?

This is a great board with many knowledgeable people, not me I'm a newbie too :) , and my experience is the more people know the clearer it is too see issues. Some of us have been ill for a long time and are continuing to look into what is going wrong with our bodies. If you have days, I'm not kidding it's over 400 pages :lol: , the "OMG I may be able to eat dairy" is the thread we've been doing this on.

.

The only foods that I have eliminated from my diet are gluten and wheat. I don't have a problem with any other foods. It took me 2 yrs. to recover from anorexia. I am on disability for major depression. I have suffered from it for 34 yrs. the other health problems are thyroid, sjrogrens syndrome, chronic fatigue, arthritis, bipolar disorder.

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I have rheumatoid arthritis (on SSD), sjogren's, bipolar, celiac and I've been getting bouts with nausea I think are caused by gallstones. I had an upper abdo ultrasound which didn't show any but apparently stones can hide in the ducts, or tubes, or whatever.

Have you had any upper right abdo soreness/pains? Gallstones can be triggered after the start of the gluten-free diet, the gallbadder-contracting-enzyme-thingie :huh: is in the small intestine and is depleted during active celiac (causing the gb to become sluggish and more likely to make stones) once on a gluten-free diet the small intestine heals and the enzyme starts up again. (causing the gb to "flush" all those stones it made) Stones can cause nausea after eating, bloating and soreness/sore spot/pain in the abdo, chest or even the right shoulder.

My RA has been flaring terrible lately and my appetite has disappeared - that's common with RA, I've lost 20lbs in the past two months. Is your arthritis autoimmune or osteo? Lots of meds can mess with your appetite too.

You said it's like when you were anorexic, could that be rearing up again? The stress of the new special diet with all it's requirements and expensive foods stuffs :unsure: and the other side, the plain jane rice/ bananas/potatoes regimen. Maybe all the focus on diet stirred up trouble?

I eat alot of the plain jane (cheap = :) ) stuff. Although I did save up some money and bought bulk items off of Amazon. It was 40-50 bucks, alot of money for a small fixed income, but that was 3 months ago and I still have 6 packages of cookies and 2 1/2 boxes of cereal left. It was a good buy, I'll do it again as soon as I have a month where I don't have pay the extra 20% to my pdoc who doesn't except medicaid or the plummer to fix the waterheater or the suddenly sky high electric bill. . . those cookies better hold out! ;)

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I have rheumatoid arthritis (on SSD), sjogren's, bipolar, celiac and I've been getting bouts with nausea I think are caused by gallstones. I had an upper abdo ultrasound which didn't show any but apparently stones can hide in the ducts, or tubes, or whatever.

Have you had any upper right abdo soreness/pains? Gallstones can be triggered after the start of the gluten-free diet, the gallbadder-contracting-enzyme-thingie :huh: is in the small intestine and is depleted during active celiac (causing the gb to become sluggish and more likely to make stones) once on a gluten-free diet the small intestine heals and the enzyme starts up again. (causing the gb to "flush" all those stones it made) Stones can cause nausea after eating, bloating and soreness/sore spot/pain in the abdo, chest or even the right shoulder.

My RA has been flaring terrible lately and my appetite has disappeared - that's common with RA, I've lost 20lbs in the past two months. Is your arthritis autoimmune or osteo? Lots of meds can mess with your appetite too.

You said it's like when you were anorexic, could that be rearing up again? The stress of the new special diet with all it's requirements and expensive foods stuffs :unsure: and the other side, the plain jane rice/ bananas/potatoes regimen. Maybe all the focus on diet stirred up trouble?

I eat alot of the plain jane (cheap = :) ) stuff. Although I did save up some money and bought bulk items off of Amazon. It was 40-50 bucks, alot of money for a small fixed income, but that was 3 months ago and I still have 6 packages of cookies and 2 1/2 boxes of cereal left. It was a good buy, I'll do it again as soon as I have a month where I don't have pay the extra 20% to my pdoc who doesn't except medicaid or the plummer to fix the waterheater or the suddenly sky high electric bill. . . those cookies better hold out! ;)

I so far don't have very many problems with my stomach. The only problems I have are that since I have lost so much weight, I have trouble getting food to go down, or just not getting it to go down at all. It is like when I was anorexic, but I am definitely not anorexic. I am fighting as hard as I can to keep weight on. I eat alot of potatoes and rice. They seem to work well for me, but are getting old really fast. A friend of my is giving me a bread maker that she has that has only been used once. I just need a recipe for gluten free wheat bread and how to get started to make it. If someone could help me out I would really appreciate it. I need to get a handle on my problem before it gets a hold on me. Thanks for listening.

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I so far don't have very many problems with my stomach. The only problems I have are that since I have lost so much weight, I have trouble getting food to go down, or just not getting it to go down at all. It is like when I was anorexic, but I am definitely not anorexic. I am fighting as hard as I can to keep weight on. I eat alot of potatoes and rice. They seem to work well for me, but are getting old really fast. A friend of my is giving me a bread maker that she has that has only been used once. I just need a recipe for gluten free wheat bread and how to get started to make it. If someone could help me out I would really appreciate it. I need to get a handle on my problem before it gets a hold on me. Thanks for listening.

Jerri .... the fact you realise that "I need to get a handle on my problem before it gets a hold on me." is really the key.

Cooking is not difficult, leastwise no harder than riding a bike, it just takes practice.

Perhaps people are born to be great chef's but EVERYONE can cook and cook well.

Also when I do try to eat, I can barely get the food to go down.

I think you might be doing what happened to me at one point which is making yourself phobic against food because you connect it with being sick.... I truly went through a point a few years ago ..(which corresponded with a low point in my depression) when I couldn't eat... even a banana made me nausious... and my description of what happened to me at the time was EXACTLY your's .. a spiral..I felt I was being sucked in and couldn't find a way out.

I think you need to make small meals ... just little snacks to nibble on 7-8 times a day instead of full portions but make sure each little snack is nutritious. I honestly don't think gluten-free bread is your answer at this point ... if you are not eating enough then gluten-free bread is going to FILL YOU UP but not provide what you need in terms of nuitrition.....

What you need to do is find interesting things to accompany the rice and potatoes.... because by themselves they are nutritionally very poor. You can buy quinoa for instance to eat instead of rice, it has a much higher protein content ... yes its more expensive gram for gram but probably not gram of protein by gram of protein.... and youre not eating a lot....

Also as mentioned chicken soup.... I buy all the offcuts, especially drumsticks to make chicken soup and broth .. and the way I make it is I use the peel from carrots, leek and celery heads and bases in the stock... things you usually throw away...

I start off simmering (just boiling) the offcuts of veg and stuff together.... with the drumsticks in one pan and the "eatable" part of the veggies in another. After 30-40 mins I take out the drumsticks with a pair of spoons (if you try and pick them up at this point they fall apart so careful) leave them to cool for 10 mins and then pull off the skin and the meat should practically fall off. Take off any bits you don't want (you don't wanna be thinking of that when eating) and throw it all into the stock again....

Now you let the stock boil another hour or more... on low or a slow cooker is perfect...

The idea is taking ALL the vitamins and goodness out of the stuff....

When you're ready take the stock out of the pan through a seive into the second pan with the veggies (whatever you like but carrot, celery and leek and dark cabbage work for me) {this isn't a random mix..its a vitamin/mineral mix} (don't use potato peel its too starchy)

At this point you can make 20 different chicken soups.....

You can mash/process the cooked veg into a "cream of..." you can half masj it into a chuncky thick soup or leave it a clear broth....

add the cooked chicken as you wish.....

You can then make variations like sweetcorn and chicken with rice noodles for a chinese type soup and add some cooked mushrooms

You can make it thick and add rice (or other pulses which adsorb the stock) for a thick broth .... and cook another 20 mins.

You can add cream and make a smooth cream of chicken .... its really all down to what you want BUT the important thing is you can eat it by the cupful and its very easy to digest. Just keep it in the fridge or freeze half and whenever you feel you can take a cupful and micro it.... (add the cream after this if your going to)

Cost wise.. you can eat well for $20 a week easily....


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Dips and spreads are a great solution for what you're going through. They have helped me a lot when I have not felt like eating.

If you can get your hands on an electric food chopper, there are tons of simple simple recipes that you can make that are nutritious, delicious, densly packed with taste and vitamins, and keep well in the fridge. I'm not talking about getting a huge Cuisinart Machine (although if you have one...use it!). I have a mini-chopper from cuisinart.

Throw in a combination of any cooked meat/poultry/or eggs or even cooked fish, add a stalk of chopped celery, and any other raw veggie (like a tomato, or avocado, or bell pepper, even lettuce, etc) add about 2 tablespoons of olive oil, and then add about 1/4 cup gluten-free mayo, or plain yogurt is nice too.

Whizz it all up in the chopper, then add salt/pepper to taste

Oh, throw some raw almonds in the chopper too and add to the mixture. This adds some crunch and taste.

Once you have your mixture tasting the way you like, you can just eat a few spoons at a time as a snack, or use it as a filling for lettuce roll ups, or over a green salad.

Hope this helps,

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Jerri - I know that fatigue and when you're in it, EVERYTHING is impossible, not the least of which are the acquisition and preparatin of food....it's staggeringly difficult and I also hate to cook. I consider it a great irony in the universe and the scourge of Heaven to carry a disease which makes me COOK all the time..... :angry: (well...not really. Just being dramatic as God has a plan for everything, I believe.)

Do you have a Costco nearby? Can you get someone to go there for you adn get a roasted chicken? they're $5 adn go a long way.....you need quick and easy stuff and LOTS of protein, I think. don't worry so much about making bread - it's difficult in our condition...I'd save that for a bit later. Do you have a Trader Joe's nearby? there's quite a decent bread there for less than $3. If you toast it, it's like a bagel. Get some ceam cheese, peanut buttter, things to put on bread that contain protein.

I'm going to pm you......hang in there. Work on eating less of the processed foods and more lean meats/chicken/fish - it can be done without tons of money.


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Here are a couple more ideas:

-pop some popcorn the old-fashioned way using a pot with a lid. Just pour enough oil into the pot to cover the bottom (sunflower oil is good, but I use olive oil)

-add enough popcorn to just cover the bottom of the pot

-put the pot on MEDIUM heat and wait until you hear the first kernels pop (usually about 3 minutes)

-then shake the pot while the popcorn pops

-when it stops popping, pour into a bowl, and drizzle with melted butter or olive oil. Add salt to taste, and if you want, add some parmesan cheese, oregano, etc.

Enjoy.

this is very cheap, extraordinarily delicious, nutritious, and makes the whole house smell good. using a pot instead of an air popper gives the popcorn a more delicious taste.

Guacamole with boiled eggs (a variation of devilled eggs)

-if you like avocados, you'll love this dish that you can keep in the fridge and eat cold

You'll need:

-1 ripe avocado (don't buy the hard green ones, make sure they are almost black and are soft enough so that they give when you squeeze them)

-4 cold hard boiled eggs

-some mayonaisse( 2-3 tablespoons)

-salt/pepper

-a bit of finely chopped onion (just about 1-2 tablespoons)

Okay, slice the eggs lengthwise and scoop out the cooked egg yolks

-put the whites on a dish and set aside

-put the yellows in a bowl and add the mayo, salt/pepper and onion

-using a sharp knife, cafefully slice the avocado around and pull the two parts apart, then scoop out the soft insides and add to the mixture in the bowl. (just discard the big pit inside)

-take a fork or potato masher and mash up the ingredients in the bowl. tast and see if it is to your liking. Add more mayo or salt if needed.

Then using a spoon, scoop about 1 tablespoon of the mixture into the hole of the egg whites. refrigerate. Youcan eat these as a little snack, as an appetizer or try 2 or 3 as a meal with a salad. they are good for breakfast.

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Here are a couple more ideas:

-pop some popcorn the old-fashioned way using a pot with a lid. Just pour enough oil into the pot to cover the bottom (sunflower oil is good, but I use olive oil)

-add enough popcorn to just cover the bottom of the pot

-put the pot on MEDIUM heat and wait until you hear the first kernels pop (usually about 3 minutes)

-then shake the pot while the popcorn pops

-when it stops popping, pour into a bowl, and drizzle with melted butter or olive oil. Add salt to taste, and if you want, add some parmesan cheese, oregano, etc.

Enjoy.

this is very cheap, extraordinarily delicious, nutritious, and makes the whole house smell good. using a pot instead of an air popper gives the popcorn a more delicious taste.

Guacamole with boiled eggs (a variation of devilled eggs)

-if you like avocados, you'll love this dish that you can keep in the fridge and eat cold

You'll need:

-1 ripe avocado (don't buy the hard green ones, make sure they are almost black and are soft enough so that they give when you squeeze them)

-4 cold hard boiled eggs

-some mayonaisse( 2-3 tablespoons)

salt/pepper

-a bit of finely chopped onion (just about 1-2 tablespoons)

Okay, slice the eggs lengthwise and scoop out the cooked egg yolks

-put the whites on a dish and set aside

-put the yellows in a bowl and add the mayo, salt/pepper and onion

-using a sharp knife, cafefully slice the avocado around and pull the two parts apart, then scoop out the soft insides and add to the mixture in the bowl. (just discard the big pit inside)

-take a fork or potato masher and mash up the ingredients in the bowl. tast and see if it is to your liking. Add more mayo or salt if needed.

Then using a spoon, scoop about 1 tablespoon of the mixture into the hole of the egg whites. refrigerate. Youcan eat these as a little snack, as an appetizer or try 2 or 3 as a meal with a salad. they are good for breakfast.

Thanks for all of your ideas. I do not have a Costco where I live, and there is only one health food store, and it does not have much to offer. I will try some of the suggestions that you offered

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I notice you've got depression to deal with on top of everything else! Can you get outside for a walk (even if it's a slow walk) every day? Seriously, I believe that the more time you spend outside, the better you will feel--something to do with the sun (and it works even when it's cloudy or even raining). My physical therapist swears that swinging your arms while you walk releases endorphins, so that's worth a try, too.

I know the hardest part is just getting yourself outside to start. Maybe setting a particular time to get outside every day would help?

Can you eat salmon? That is easy to cook (broil, fry, or grill), you can even get it canned and mix with mayo and hardboiled egg and chopped celery and green onions and maybe a little curry powder. It's loaded with Omega-6 and Omega-3 fatty acids, which help just about every health problem you can think of.

Baked potatoes are easy in the microwave, and good with butter or margarine and sour cream, (if you can't have dairy, there's a very decent soy sour cream).

Plain rice is very easy (nothing wrong with Minute Rice that I know of), and a great snack with a sprinkle of soy sauce (La Choy brand is gluten-free), a sprinkle of sesame oil, and chopped scallions.

Lastly, nothing beats chicken soup! They don't call it Jewish Penicillin for nuthin'! Some of the boxed chicken stocks are gluten-free and quite good, and you can add a little shredded carrots and green onions, some chopped slices of chicken from the deli counter, and some gluten-free pasta.

As my grandpa used to say, "That'll put hair on your chest!"

Hang in there--it does get better! Let us know what works for you and how you're doing, okay?

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I noticed you said that you had trouble getting food down. I do that from time to time too. It feels like there is a lump on my throat and food just comes right back up on me. And I get full quickly.

When this happens, I found I can digest creamy things, like smoothies, baked potatoes, sweet potatoes are good too, cream of chicken soup, etc. If I do this for a few days straight, the feeling goes away. I still don't know what causes this.

Whatever you eat, you want to chew your food really well.

Eat every 30 - 60 minutes when you are like this and in very small portions. You want to keep your calories up as high as possible. For some reason, I always dropped weight when I got like this too.

Candy is high in calories, but don't indulge too much. :) You need nutrients.

Hope this helps. Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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2tired,

Have you downloaded the delphi list yet? You would be simply amazed at how many mainstream products in your average supermarket are gluten free.

If you don't have it yet, let us know, we will give you the link.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I would just like to second the mention of baked sweet potatoes. very nutritious, sweet & good & easy to eat & cook. Take two or more sweet potatoes, wash, poke with a fork a couple of times, put in a glass casserole dish & cover with glass lid, pop in microwave, cook for about 6 minutes (depending on size of potatoes) take out dish & if potatoes are not done through (poke with a fork), turn them over & microwave a couple more minutes. Since I am no dairy, I eat one with a little brown sugar (the sugar melts). Put leftover baked potatoe in the refrig. It will keep for a couple of days. You can eat mashed & heated up or you can peel it, slice crosswise (into rounds) saute in a little olive or or butter in pan till crispy & turn & saute on the other side, sprinkle with a little sugar. Good with rice and other veggies.

Also, ask an older person like me :D about cooking in the 50's & they will tell you about:

Orange jello with grated carrots & pineapple

waldorf salad - apples, celery, walnuts with mayo ( I like Kraft miracle Whip Salad Dressing)

English Pea Salad

Pineapple salad - pineapple (or pear or both!) on lettuce with grated cheese on top & a dollop of mayo

Deviled eggs

chicken salad

Tuna casserole - a can of tuna, cooked rice, top with grated cheese (mix in saute onion & celery if you feel fancy)

stuffed celery - with cheese, or peanut butter or any nut butter, or bean dip

I also make my own popcorn in a pan - & I use the white popcorn. It just tastes better & I am not getting all the additives etc.

Please get to feeling a whole lot better before you try to eat replacement grains. Read the book "Dangerous Grains". and take a B12 everyday, there is a thread on it somewhere - or just take our word on it - take a B12.

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