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thumper

Learning Curve

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Sense I have been gluten free sinse Feb. 6, 2008 which I realize is only 3 weeks I have been on a mission to learn as much as possible about celiac as fast as possilbe.. Maybe it is just because I was so very sick for over 13 yrs before getting a right diagnoses and maybe I have my expectations too high. I truly thought that by this time I would be feeling good as new and I am so frustrated because It seems all I have learned is that I also can't tolerate milk (dairy products) and I didn't have the chicken pox I have Dermatitis Herpetifomis and I have to learn about that as well.

I am getting overwhelmed with my symptoms and stupidity all I did today was lay on the couch feeling awful, stupid, itchy, crabby, frustrated and my bottom is sore from all the trips to the bath room. Oh I forgot crying most of my day away..

I swear that I know nothing more than I did 3 weeks ago am I just stupid, am I reading the wrong book, The gluten-free bible by Jax Peters Lowell ?? I've spent all my money on gluten free food that I can't afford another book at this time and I am not finished with her book yet.

And what the f*** do you use in recipes that call for milk when you can't have it ??

I have no one in my house to talk to about all this so I feel all alone in it I know there are those who have been living with this for many years, how did you all do it ?? How do you learn faster and when do you start to feel better ???

Thumper

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Well, you're just as stupid as all of us were when we first started this adventure. It really does get better, it's just that there's so much to learn at the beginning.

I use almond milk in place of dairy. There are also soy and rice substitutes for milk. You can find non-dairy subs for cheese and yogurt as well, but I don't like any of them so I mostly do without and cheat with cheese occasionally.

Check out your local library to see if they have gluten-free books you can read.

And hang in there, it does get better.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Thumper, I wished I could come over and help you out. You are having the 'diet blues' right now, and everything seems impossible. But you will get better, be patient. It takes a LOT longer than three weeks to feel 'good as new'. It took you years to get really sick, and it will take at least a year to be really well.

Instead of 'real' milk, people here use a variety of products. I use rice milk (not rice dream, it has barley malt). Others use soy milk (I don't really recommend that, soy is another thing many people with celiac disease can't tolerate, and it isn't healthy), while there are those that use almond milk.

I use rice milk on cereal, in cooking and baking, and it works just fine and tastes okay (I don't drink it straight).

You are NOT stupid. All this is overwhelming, especially if you don't have the support you need. You will get the hang of it, really, you will. It all takes time, it is a whole new life style.

The gluten-free bible is okay, but not the best book out there. But you can get all the info you need right here in the forum, just ask questions.

Pretty much all you need to know about dh is, that you need to be on a gluten-free diet, and shouldn't eat a lot of iodine. Because the only real valid treatment for dh is the gluten-free diet, everything else is a bandaid solution that doesn't solve the underlying issue.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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It does get easier. It's also a great idea to stick with just basic fruits/veggies/plain meat for the first month or so while you figure out the whole gluten free thing. The gluten free products like cookies and such can be hard on your stomach at first. maybe sticking with simple foods that are naturally gluten free will help you feel better quicker.

HTH

Stacie

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You're just frustrated. I am on the same path as you and I was sick for 11 and just went Dairy & Soy free Dec 1st. I actually have been sick so long I knew it wasn't going to be a quick recovery.

I really keep things basic for myself right now. I drink Almond Milk too and it's really yummy! :)

I found some brown rice breakfast cereal that is pretty good, very basic, I don't eat very much just because I feel better when I don't. My body digests food so retarded (yup I am wheat-tarded ) ;) I just wait until evenings and I only have one meal.

Good luck and don't be hard on yourself.

I am actually beginning to like no cheese on my pizza! hahaha

lovelove

sickchick


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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It will get better! Having been sick/misdiagnosed for 10 years, it is taking me a while too! I am so thankful that I can think (by that I mean that the brain fog has lifted) and believe me the day will soon come that you spend much less time in the bathroom! Now, I'm gaining weight and actually having to monitor my calories and what I eat because I'm actually gaining weight!! I never thought I would have that problem.

If you are reading about celiac, you know that the depression and "blues" are par for the course. I am now learning where in the realtively small town that I live in I can eat out safely. Not being able to go out to eat or even have a few drinks was a major bummer for me. If you are really depressed to the point that you are crying and having a miserable time, maybe you should talk to your dr about that. There are mild antidepressants that can help you get through this if needed, and no you will not be the first person with celica who has had to go there!! learning that you have to live gluten free and dairy free in your case, is much like dealing with loosing someone that you love. I thought I was crazy when i was feeling so sad when I was first diagnosed. It was like I was trying to cope with the loss of a family member...then I logged onto this site and realized that it is something that almost all of us have delt with! Hang in there, I promise better days are headed your way!! :)


Teri

gottaBGfree

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I don't have advice, just kind words...hang in there. You may not have support at home, but you have it here. A previous poster is right - you don't need to spend money on books. Just hang out around here and ask lots of questions. We're new to the Celiac family (Dec. '07) too, but I can tell you I've stopped crying (mostly) and am doing much better. When you need a boost or a friend, just start typing. Someone will be here to help pick you up and share a smile! :D

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It was like I was trying to cope with the loss of a family member...then I logged onto this site and realized that it is something that almost all of us have delt with! Hang in there, I promise better days are headed your way!! :)

It took me a year of mourning the person I was before I got sick.

but since I actually can reverse what's happened to my body I am letting nothing stand in my way!

Be well B)


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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It will get better!

Also, once you heal, you may be able to tolerate dairy products. Its not necessarily a long-term problem.

"Lactose intolerance may be a transitional problem until the villi heal." http://www.celiacdiseasecenter.columbia.ed...5-Nutrition.htm

Hang in there.

I sympathize with your situation. It just isn't easy giving things up. I think in part this is why so many people who are sensitive to gluten just choose to ignore their complaints. I think this is also why my mother put me back on gluten when I was four years old even though I had previously been hospitalized and almost died from being introduced to grains when I was 4 months old. My constant ill health then was mocked rather than understood as being dietary related. There is so much attachment in this country to a "standard" American diet and fear of being different in that arena. People use comfort food to feel safe after all.

However its way worth it in improved health and a better, longer life in all kinds of ways to give up the gluten. I was sick all my life until I figured out slowly what was what. Even now I am still learning and am so greatfull for this forum. One of the last steps for me was learning about avoiding all the hidden glutens, like in your old wooden utensils and cutting boards and any iron pots or pans you might have or things with old baked in food stuck in the pyrex etc. Plus cross contamination issues...

For me I can't tolerate almond milk and rice milk usually has beta carotene in it which I am also allergic too. So when I want milk I either use coconut milk or plain non fat organic yogurt that I thin down.

As far as the books go, later on when you can afford it look at one of those online book sellers. You can usually get used books for a lot less.

Herbs that could help against the depression might be skullcap, melissa, rosemary and lavender tea. My brother swears that using St. Johns Wort helps. That plus exercise and sauna as much as you can even if its just going out for a walk.

I also find the detox herbs a big help--dandelion and burdock (this will help with the skin big time) and maybe yellow dock or Oregon grape root every other week. Pao de Arco also helps maintain good flora and elimination. Plus marshmallow root and/or slippery elm caps will help soothe and heal the lining of the intestines. You see its all these accumulated toxins that are making you feel bad. That plus the unhealed lining of the intestines allowing leaky gut to make a lot of your food a little dangerous for you until you have healed more although you still have to eat. That is why eating a more paleo diet of vegetables, meat and some fruit is usually better to begin with and whenever you feel low or out of sorts anyway--despite all inner programming about processed food and sweets etc. being comfort food. For us they really are not given the boomerang effect!


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Thumper:

In the beginning for me I just wanted to start to feel better so I was eating a lot of salads, white corn tortillas (Mission) things that were from the grocery store that I knew were safe while I did research on what I could eat. It is very hard in the beginning with understanding everything and knowing what to look for and hidden gluten. It has been almost a year for me trying to be gluten free, I have messed up a lot during the last year getting frustrated and missing food but it finally hit me that I NEED to do this to feel better and for my family. That in order to not have the run to the bathroom episodes and stomach torture pains I needed to stick to this and not have off diet dinners once in a while.

If your stomach is hurting try a heating pad. Sometimes it helps and sometimes it doesn't. Also Epson Salt baths.

I did A LOT of research online. I bought one gluten free book and then a couple of cookbooks on amazon (read a lot of reviews and even got one for kids/busy adults -- has easy things to cook). I found the internet and this website a lot more understandable than books. I don't have a Henry's or Whole Foods where I live but a health food store in town that helps me with questions about cooking products.

Try to ask questions at the specialty stores. I haven't had luck at regular grocery stores, when I would ask if they carried a product (that I later found) they would look at me with a blank face. You will find a lot of foods that you can eat at the grocery store where you don't always have to go spend a lot of money on expensive gluten free foods at specialty stores.

One of my favorite dinners to make is spaghetti you can use Classico sauce, meat and gluten free noodles.

A lot of websites will have a frequently asked question page and some will have lists of all of their gluten free items (like Hormel and Frito Lays) and some sites will just have a statement about it. Some fast food places and restaurants have started having allergy lists/gluten free lists as well. You still have to be careful though of CC.

Here are a couple of websites:

http://www.venturaceliac.org/glutenfree-basics.htm (Basics/Hints, Avoid and Samples of what to eat)

http://www.csaceliacs.org (if you click on the gluten free diet there is a grains/flours glossary)

http://en.wikibooks.org/wiki/Cookbook:Gluten-Free (cooking pointers)

http://www.dfwceliac.org (left side of the screen will have different lists to click on)

Best of luck. Things will start to improve, it takes a while for your body to start healing :)


Rebecca

Partial Gluten Free March 2007

Completely Gluten Free February 2008

Tapioca Starch/Flour Free April 2008

No MSG July 2008

Cut out Nitrates//Nitrites January 2009

Problems with Tomatoes and Potatoes -- Cut out Nightshades Aug '09

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'wishiwasbackonthebayou-rollinwithsomecajunqueen'

USUALLY HELPS ME


only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended

*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)

*Winter '06 developed severely swelled legs with rashes, white tongue

*Self-diagnosed; Gluten Free Spring '07

*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)

*Celiac.com diagnosed IC Summer '07

*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

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Hi Thumper. No, it isn't much fun in the beginning. I really thought I would magically feel better quickly, at least I strongly hoped I would. Emotionally I was great, at first, except for being desperately ill. I was just so grateful to not have cancer or something that would require surgery, or nasty drugs or chemo. But, as time dragged on and healing came so slowly I got seriously depressed. I know I'm not myself yet, my moods swing up and down and sideways....but the pendulum is slowing down. Overall I AM doing better, and each day brings better health closer.

You really don't have to buy a lot of books. I did buy books, partly because I LOVE books, almost any books. I like having a reference that I can return to (and I have dragged books to my Dr.s office to back up my thoughts about my treatment). I have reread lots of things because there is just SO MUCH info. to absorb and remember. After a while it'll just become a way of life, and not feel so foreign.

Hope your healing comes quickly and that you can feel better soon. You'll be all right. There are many caring people here to listen and share.

Flourgirl


GOD IS GREAT, GOD IS GOOD, THANK YOU FOR OUR GLUTEN-FREE FOOD!

MUSIC IS THE BREATH OF LIFE

Theresa

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hang in there kid time will help heal also epsom salt baths, jason's skin andbath products sold at wegmans are great for your sensitive skin. buy new toaster, one new fry pan with spatula, new dishwasher safe pot holder and label everyting gluten-free in kitchen with colored stickers, 8 months gluten-free and still get occasional symptoms :D


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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When I first went gluten-free, I was so overwhelmed by the diet that I just ate hamburger, lettuce with a lemon squeezed on top and baked potato with all the butter I wanted. I added fresh veggies and fruit after a few weeks and when I was ready about 4 months later, I started reading labels and eating foods labeled gluten-free. For me it was too overwhelming to spend hours in the grocery store reading labels, I just went with what was the easiest. I think that it helped my gut heal faster by limiting the kinds of foods that I ate. It does get easier and cheaper especially when you realize that a lot of the gluten-free foods are really high in fat and the taste is not worth the calories. There are a few I like but I really stick to the main stream foods that label their products. Make it easy on yourself. You will go through a grieving process.... but giving up gluten is the best thing that you can do for yourself.


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Thumper,

I, too, am realatively new to this, and I also found I was really blue (almost depressed) at first and had NO energy at all. I just sat around for days on end. I could have cared less if I did one productive thing all day. I think it was part of the withdrawal that my body was going through coming off of gluten, which had basically been "toxic" to me. Sort of like alcohol is toxic to an alcoholic, and they withdraw when it's removed. Hang in there, because it's worth it and you WILL feel better - even though it's hard to believe that right now. You're not alone, and the people on this sight are so kind - everyone is here to help you!

Oh, one note about Rice Dream. It was mentioned earlier by someone much more experienced and knowledgable than I, that it contains barley malt, so we shouldn't use it. I ran to my fridge and read the label on my Rice Dream, and can't find barley malt anywhere on there. However, I remember that I quit using the VANILLA flavored Rice Dream and switched to the ORIGINAL flavor because I was scared of something in the ingredients - maybe that was it. I'm still new to this, so I'm trying to figure it all out, but it's possible that the different flavors have different ingredients?! I'm learning to read labels every single time I go to the store because apparently these manufacturers can change ingredients on a whim - and what might have been "safe" last week isn't safe anymore this week!

My best to you - you'll be feeling better soon!

Kritter

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