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I Feel Like I've Been Run Over By A Tanker Truck!

glutenfreechick

By glutenfreechick
in Coping with Celiac Disease

Recommended Posts

glutenfreechick Newbie
glutenfreechick
Posted

[font="Comic Sans MS"]I'm on day 2 of the celiac diet and I feel just awful! my muscles ache, my headaches, the tiredness is making me mad and I'm super dizzy! I have been online since coming home from the dr's and finding lots of great info but I still feel lost and in shock. I've been taking the bull by the horns about it but today i collapsed. I just dont know what to reach for?? information overload I think. My biopsy isn't even scheduled yet and I'm reading that u have 2 be taking the gluten at the time of the biopsy. So why am i even starting the lifestyle?? Most of the 'what to eat' sites are from the U.S. and I'm from Canada. Am I the only celiac in Canada?? Dumb-ass comment sorry!

I dont see a dietician until halloween...thats so far away so this laptop is my only hope. I did a shop yesterday and was exhausted from reading all the labels. I did by a small notebook to keep all my celiac info in from printouts etc. I've been taking 300mg of iron daily for the last week since my iron levels were grossly low. hmmm been like that for yrs and the dr said chalk it up to having 3 little ones. He placed me on zoloft for the energy boost. My diarrhea has been out of control for the last year but I didn't have time to worry about me. My dad just died in April of cancer and now I'm terrified that i might have intestinal cancer. you never know right? I'm wondering How long have I had this ??? I should have been diagnosed alot sooner than this and thats upsetting. my constant tiredness, the insomnia, drrhea, irritability, my cramps right after I eat a big bowl of vector w/ raspberries. This was my breakfast everyday for the last year. I thought it was just because my tummy didn't like food in the morning. I chalked all of this up to stress from my dad's illness for the 13 months from diagnosis till his death, now it's the grieving process and all that entails.

can someone tell me what they eat in a day please?? I'm missing my toast, and porridge and cookies. I just need some help please and thank-u. sorry this was long, but I think I'm at the right place to spill the feelings. Is there a colony somewhere in this world where we all (celiacs) live together?? I know another dumb-ass comment. [size=4]

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Byte Me Apprentice
Byte Me
Posted

I am so sorry you are feeling so bad right now. Information overload, feeling overwhelmed, grief over your dad's passing, plus being so new to this -- all that is probably contributing to your distress. I wish I knew exactly what to tell you to make it all better. I've been gluten-free for a little over a year now and this past summer has been full of so much family drama and chaos, I feel like I've got stress-induced celiac type GI symptoms returning. I'm a little bit in self-destruct mode right now and fighting the urge in a major way to just give in to gluten cravings which I know are bad, bad, bad, but deep down I know 'this too shall pass'.

I'm not very good with words or insightful advice, but I just wanted to let you know that I empathize completely with your frustration and my heart goes out to you.

I do think it's entirely possible that part of what you're going through right now could be 'gluten withdrawal' symptoms. Hopefully those will pass sooner than later. In the beginning of my starting the diet, I was so frustrated that I decided it would be more beneficial than harmful to temporarily let myself give into a vice, so to speak. For me it was Snickers bars. Anytime I felt down or deprived and was just craving junky carby food, I would grab a snickers. I bet I went through about ten bags! :o I also ate lots of chicken. I could eat chicken morning, noon, night, and anywhere in-between, haha.

After a couple of weeks of that though, I didn't have that deprived feeling and started not to crave the junky foods.

Right now I simply cannot think of any ideas on telling you what to eat -- being at a relatively low point right now, ALL I have been craving is junk, junk, junk (but again, I know this is temporary!). I am sure there are plenty of people here who could give you some ideas as most everyone on this website has wonderful suggestions and are so supportive.

Just for the record, I don't think any of your comments are "dumb-ass" comments at all. Plus, I think a colony of celiacs living together would be awesome, as long as we've got really good plumbing! :D It would be so nice to live amongst ( and actually be able to socialize and date!) people who actually get it!

Sorry for the rambling. I hope that maybe you can get some small comfort knowing we all go through rough times, especially in the beginning.

blueeyedmanda Community Regular
blueeyedmanda
Posted

In the beginning things are very overwhelming, not only are you still feeling real sick but just trying to grasp all that new information is hard. Plus you have other things going on in your life aside from the celiac stuff. Once you are on the diet for a little time (it varies person to person) you will start feeling better and once that happens everything will start getting easier. I know the whole gluten free concept was much easier one I felt better, I guess it was the proof I needed to see the diet worked (not that I had doubts...but when you had been sick so long) Hang in there everything will get better.

happygirl Collaborator
happygirl
Posted

If you are having the biopsy, do not go gluten free til AFTER the biopsy. Going gluten free before makes the biopsy near pointless, as its level of accuracy diminishes. Leading Celiac experts have found that even 1 week of the gluten-free diet can contribute to significant changes in the villi. (The villi are damaged by eating gluten. The biopsy looks for this damage. When you stop eating gluten, the damage is repaired. Doesn't mean you don't have Celiac anymore, it just means that you took out the "problem" and you are healing.)

If you are not having the biopsy, it is ok to start on the gluten-free diet.

taken from: Open Original Shared Link

"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results."

tom Contributor
tom
Posted
I should have been diagnosed alot sooner than this and thats upsetting. . . .

So . . . .you HAVE been diagnosed w/ celiac already?

If that's true I don't get the point of the biopsy. :unsure:

Virgie Apprentice
Virgie
Posted

Hi! I am fairly new to the celiac diet too as this is our first week. I too think that we are suffering from gluten withdrawal. We have been tired and achy too. My 13 year old daughter got dx with Celiac (blood test first & then biopsy done) on September 4th so we are really only into week 1 with the diet. I am trying to go gluten free too. And right now I feel like I am going crazy. I want some toast, dang it :angry: .!!! I did buy a loaf of gluten free bread and it isn't bad but it is expensive. Can't wait till my breadmaker comes in the mail, then I can try making my own. My daughter is doing pretty good but is feeling it when it comes to snacks & not having donuts & such. And at times I do fell like - what can you eat??!

I also feel like you - Information overload!!!! It seems like there is so much to learn about. Sigh!!!

If I were you I would not go gluten free until after your biopsy. That is what the GI nurse from the Mayo Clinic told me for my daughter. So for now maybe you can just start getting your kitchen ready and learning about what to eat & such. Also a good book to read is "Wheat Free, Worry Free The Art of Happy, Healthy, Gluten-Free Living" by Danna Korn. It is a very good book which also talks alot about emotions and how to deal with different feelings that you may go through. Also has some recipes & different meal suggestions.

I hope you feel better soon. Take care & hang in there. :)

Virgie

JNBunnie1 Community Regular
JNBunnie1
Posted

Virgie, try the recipes link on the homepage here, you'd be surprised how much stuff you can make. I think there might be a donut recipe.

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mmshutt Newbie
mmshutt
Posted

I have only been gluten free for about 4 weeks and I too have been having muscle and joint pain. It helps me to know that you are having it too. I was afraid I'd developed Lupus or some other problem on top of Celiac. How long will this last?

I haven't been to a party yet (or gone out to eat) and I am worried too. I figure I will have to pack my own food to be safe.

I would like to assure you that it gets easier as you go on. After 1 week on the diet my husband came home from work and I started crying because I was having trouble finding anything to eat! Reading labels and deciding if something is safe is very hard for me. Too many ingredients may contain wheat!

I found a local store that carries a large supply of gluten-free products, including some yummy gluten-free donuts! I also have been ordering food online. Finally, I have found that Wal-Mart puts Gluten Free on the labels of it's brand (Great Value) of foods. That has been really helpful. Does anyone know of a web site or a place I can get a list of safe brands and foods?

Good luck and I feel your pain!

Mary

Janeti Apprentice
Janeti
Posted
I have only been gluten free for about 4 weeks and I too have been having muscle and joint pain. It helps me to know that you are having it too. I was afraid I'd developed Lupus or some other problem on top of Celiac. How long will this last?

I haven't been to a party yet (or gone out to eat) and I am worried too. I figure I will have to pack my own food to be safe.

I would like to assure you that it gets easier as you go on. After 1 week on the diet my husband came home from work and I started crying because I was having trouble finding anything to eat! Reading labels and deciding if something is safe is very hard for me. Too many ingredients may contain wheat!

I found a local store that carries a large supply of gluten-free products, including some yummy gluten-free donuts! I also have been ordering food online. Finally, I have found that Wal-Mart puts Gluten Free on the labels of it's brand (Great Value) of foods. That has been really helpful. Does anyone know of a web site or a place I can get a list of safe brands and foods?

Good luck and I feel your pain!

Mary

Hello Mary,

There is a food company called "Really good food company". It is located in St James, NY. But they deliver everywhere. You can google it, so you can see what products are available. Their foods are out of this world. Their cakes are the best. If you are interested, when I get home from work, I will write back and to tell you the phone #. Janet

mmshutt Newbie
mmshutt
Posted
Hello Mary,

There is a food company called "Really good food company". It is located in St James, NY. But they deliver everywhere. You can google it, so you can see what products are available. Their foods are out of this world. Their cakes are the best. If you are interested, when I get home from work, I will write back and to tell you the phone #. Janet

Janeti Apprentice
Janeti
Posted

I'm not really sure what that means :blink: please let me know what you would like me to do :) Janet

loco-ladi Contributor
loco-ladi
Posted

well, heres a small start for help "shopping"

Start with the basics, I mean very basic.... meat & veggie meals... (watch the spices and sauces many have gluten added) I am not saying throw everything out now, much may be useable but you need to get comfortable with the diet for a bit then branch out a little at a time. And DO NOT throw out your favorite recipes and cookbooks, your just going to go have to go buy them again ;) they can be edited later to match your diet!

as you get more comfortable you can expand your horizons..... have a particular craving? work on that one until you find an eatable solution then move on to the next. Doing it this way for me kept me on the diet and started me on the right pathway to reading labels... no its not easy and still today if a label has to many ingredients, I just put it down and try another, heck that many things added to say a slice of bacon, be serious that cant be healthy anyways! :D

Things I have learned in the grocery store:

Many "store brands" are all made by the same factory.... so if "store A's" canned beans are good, chances are when you look at another store brands ingredients they are identical!

"Hormel" currently puts "gluten free" on all products which do NOT contain gluten.... this includes but not limited to and not every product but.....

Lunch meat

Bacon

Pepperoni

"Dinty Moore" meals, some are gluten free some are not, check the label (its a hormel product)

Lynn

A few months in and still going strong!

mmshutt Newbie
mmshutt
Posted

Thank you, Janet! I will Google them right away! Having more choices of food makes me feel less deprived!!

mmshutt Newbie
mmshutt
Posted
well, heres a small start for help "shopping"

Start with the basics, I mean very basic.... meat & veggie meals... (watch the spices and sauces many have gluten added) I am not saying throw everything out now, much may be useable but you need to get comfortable with the diet for a bit then branch out a little at a time. And DO NOT throw out your favorite recipes and cookbooks, your just going to go have to go buy them again ;) they can be edited later to match your diet!

as you get more comfortable you can expand your horizons..... have a particular craving? work on that one until you find an eatable solution then move on to the next. Doing it this way for me kept me on the diet and started me on the right pathway to reading labels... no its not easy and still today if a label has to many ingredients, I just put it down and try another, heck that many things added to say a slice of bacon, be serious that cant be healthy anyways! :D

Things I have learned in the grocery store:

Many "store brands" are all made by the same factory.... so if "store A's" canned beans are good, chances are when you look at another store brands ingredients they are identical!

"Hormel" currently puts "gluten free" on all products which do NOT contain gluten.... this includes but not limited to and not every product but.....

Lunch meat

Bacon

Pepperoni

"Dinty Moore" meals, some are gluten free some are not, check the label (its a hormel product)

Lynn

A few months in and still going strong!

mmshutt Newbie
mmshutt
Posted
I'm not really sure what that means :blink: please let me know what you would like me to do :) Janet

Janet,

Sorry! I am still getting used to how this works!! I would love to have the phone # for the really good food company! I need some more choices!

Mary

mmshutt Newbie
mmshutt
Posted
well, heres a small start for help "shopping"

Start with the basics, I mean very basic.... meat & veggie meals... (watch the spices and sauces many have gluten added) I am not saying throw everything out now, much may be useable but you need to get comfortable with the diet for a bit then branch out a little at a time. And DO NOT throw out your favorite recipes and cookbooks, your just going to go have to go buy them again ;) they can be edited later to match your diet!

as you get more comfortable you can expand your horizons..... have a particular craving? work on that one until you find an eatable solution then move on to the next. Doing it this way for me kept me on the diet and started me on the right pathway to reading labels... no its not easy and still today if a label has to many ingredients, I just put it down and try another, heck that many things added to say a slice of bacon, be serious that cant be healthy anyways! :D

Things I have learned in the grocery store:

Many "store brands" are all made by the same factory.... so if "store A's" canned beans are good, chances are when you look at another store brands ingredients they are identical!

"Hormel" currently puts "gluten free" on all products which do NOT contain gluten.... this includes but not limited to and not every product but.....

Lunch meat

Bacon

Pepperoni

"Dinty Moore" meals, some are gluten free some are not, check the label (its a hormel product)

Lynn

A few months in and still going strong!

Lynn,

Thanks for the tips, I know it will get easier as time goes on. It is nice to have people who have already been through it giving much needed advice! :)

Mary

Janeti Apprentice
Janeti
Posted

Hello Mary,

The number for "The Really Great Food Company" is 800-593-5377. But like I said, you can go to the website,

www.reallygreatfood.com so you can see the food, then call to order. This company even has ice cream cones that are so

yummy. Imagine, an ice cream cone, you almost feel like a regular person. :) I just made their cinnamon raison bread that

never got the chance to cool off. (my 22 year old son had celiacs too) Enjoy!! Janet

hathor Contributor
hathor
Posted

I will repeat for emphasis what has already been said -- do NOT go on a gluten-free diet if you are going to have either blood testing or biopsies done. The results will no longer be valid.

It is possible to undergo withdrawal from gluten:

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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