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

glutenfreechick

By glutenfreechick
in Coping with Celiac Disease

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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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    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
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