Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm New

MarisaB

By MarisaB
in Coping with Celiac Disease

Recommended Posts

Susanna Newbie
Susanna
Posted
Dear Susanna,

Wahoo! :P I want to start doing the Zone again. I had more energy and mental clarity on it! I have been having difficulty finding more affordable portable food. These are good, too! I had the Chocolate Coconut Crunch before, and loved it! It was delicious! That diet is also easy to do when you have to be gluten-free and casein-free!

Sincerely,

NoGluGirl

So glad I could help! You go, girl!

Susanna

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Susanna Newbie
Susanna
Posted

Mariss--I'm trying to think of treats you could eat.

What if you made rice pudding and used almond milk instead of cow milk?

What if you got the angel cake mixes from Gluten Free Pantry (I bought them at www.amazon .com) and some you could make like regular angel food cake, and some you could sprinkle in carob powder to make it kind of chocolatey?

What if you looked in the kosher foods section of your regular grocery store for macaroons? They come in a cardboard cannister. Read labels, but these generally are gluten-free, have very few ingredients, so no preservatives or additives, AND THEY'RE CHEAP, and tasty too.

What if you made hot "cocoa" with almond milk and sugar and carob powder (you should be able to get carob powder at the health food store). Maybe carob powder would work for brownies too.

A dietician once told me that butter is lactose free, because lactose is in the sugar/carbohydrate part of the milk, and butter is the fat part of the milk. So you might experiment and see if you can tolerate butter.

Good luck,

Susanna

MarisaB Newbie
MarisaB
Posted
  • Author

Hey Suz-

Sorry it took me a few days to get back to you. Thanks for the tips for my "sweet tooth". Carob has been a life saver for me. Just a few carob covered raisins do the trick.

For now, I am staying away from potato chips and anything fried. I have gotten the hang of cooking dinner...but lunch is still hard. Eating out is impossible and I am having nightmares about being glutened! This is crazy! I keep hearing that this will become easier, but it is so overwhelming.

As for Az. I am from Gilbert, Az. A town just 30 min south east of Phoenix. I currently live in Austin, Tx but my family is scattered around Arizona. I had a lot of friends that went to NAU. It is a beautiful town. I miss the Arizona sunsets. Nothing compares!!! (not in my mind at least) :)

M-

sansglutengrl Explorer
sansglutengrl
Posted

Hey MarisaB,

I just wanted to add this in as well - I've never actually had Kettle Chips, so I can't speak to that - but I've never been able to handle that SanJ's soy sauce. I have a problem every time I try it (sad because I looooove soy sauce.... I would eat in on cereal if I could.:)), and I have no idea why. I know that it's safe, and I don't even seem to be so sensitive to soy because I'm able to tolerate some soy products. I just think that maybe in the beginning stages it can be too strong on the tummy? Just wanted to add that in, hope everything is well!

-sansglutengrl

MarisaB Newbie
MarisaB
Posted
  • Author

I think that maybe the San-J's was giving me some trouble. I have since decided to stay away from it. I am feeling better this last week...not sure if it is becuase I cut out the soy sauce or the kettle chips. ;)

NoGluGirl Contributor
NoGluGirl
Posted
I think that maybe the San-J's was giving me some trouble. I have since decided to stay away from it. I am feeling better this last week...not sure if it is becuase I cut out the soy sauce or the kettle chips. ;)

Dear Marisa,

I have had nightmares about being glutened too! A lot of us do! I dreamt the other week I was eating Cheez-Its (miss those!) and woke up freaked out because I was afraid I was going to get sick! Then I realized it was a dream! :lol: I also have food lust dreams about foods I cannot eat anymore.

I find myself watching the Sopranos and drooling about the delicious baked ziti they are eating, or the spaghetti and ragu sauce with huge meatballs! Last night, I dreamt about brownies with tons of icing!

Dear Susanna,

I appreciate the help! I am so glad there is something I can finally bring with me. I have low blood sugar. That makes it essential I have something with me when I go out! I am tired of worrying!

Sincerely,

NoGluGirl

stennis07 Newbie
stennis07
Posted
The best advice I ever got was basically do not eat it unless you know it is 100% gluten free. My diet is pretty much meat, veggies and fruit. Occasionally I will splurge and buy a gluten free mix or dessert, but man, they are so expensive. The last cake mix I bought was like $7.80. It was good, and I guess if I bought a cake at a bakery it would have cost $15.00 but anyway, I think gluten free mixes etc are extremely expensive. Stick to the basics and your pocketbook won't take it so hard. :)

BamBam

I WOULD stick to this simple in-expensive diet, but I'M A RUNNER. I NEED carbs or something...I got diagnosed a couple weeks ago...and I think my body is in denial--it hates wheat, but it wants it back at the same time! I have been sucking it up at practices and track meets, but I'm soo weak feeling- when I was eating wheat, I had more energy in my big toe than I have now! wtf...honestly...

*Forgive me of my ranting...its been tough dealing with my friends..etc."

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jmd3 Contributor
jmd3
Posted
Also, try to find a health food store and get a gently natural probiotic and maybe some papaya enzyme. They'll help you digest the food you're eating. And eat lots of avoccado and raw olive and coconut oil. They have good fats that repair your cells. I actually really like scrambled eggs with diced tomato and avocado, nice simple dinner.

Where are you finding the coconut oil?? I have been looking for it all over our town, plus the surrounding towns - can't find it anywhere - any suggestions? Thanks in advance!

jmd3 Contributor
jmd3
Posted
Dear Marisa,

I have had nightmares about being glutened too! A lot of us do! I dreamt the other week I was eating Cheez-Its (miss those!) and woke up freaked out because I was afraid I was going to get sick! Then I realized it was a dream! :lol: I also have food lust dreams about foods I cannot eat anymore.

I find myself watching the Sopranos and drooling about the delicious baked ziti they are eating, or the spaghetti and ragu sauce with huge meatballs! Last night, I dreamt about brownies with tons of icing!

Dear Susanna,

I appreciate the help! I am so glad there is something I can finally bring with me. I have low blood sugar. That makes it essential I have something with me when I go out! I am tired of worrying!

Sincerely,

NoGluGirl

My GI Doc told me that Duncan Hines - Homestyle icing was gluten free - I have not called to check on it - but perhaps some gluten-free cookies with the icing might satisfy your cravings.

zkat Apprentice
zkat
Posted
I WOULD stick to this simple in-expensive diet, but I'M A RUNNER. I NEED carbs or something...I got diagnosed a couple weeks ago...and I think my body is in denial--it hates wheat, but it wants it back at the same time! I have been sucking it up at practices and track meets, but I'm soo weak feeling- when I was eating wheat, I had more energy in my big toe than I have now! wtf...honestly...

*Forgive me of my ranting...its been tough dealing with my friends..etc."

I am also a runner, play on two soccer leagues and lift 3x a week. There are many other sources of carbs out there and your body actually utilizes them better than wheat. Fruits and vegetables, Rice, baked sweet potatoes, corn chips, corn tortillas, and snickers bars :P can all give you the energy you need. Also, gatorade is gluten free and it will help some with carbs. I regulary eat between 150-200 carbs a day. The hardest for me was post workout recovery drink. I cannot tolerate soy either, so all commercial whey protiens were out. I recently discovered egg white protien and I mix it with pure dextrose in a 2:1 ratio.

Hang in there. Once you get through the adjustment period, you will be amazed at the gains you will make on the track. I dropped a full minute per mile off my times (I am also 32-not an easy task) and my nagging injuries seem to all heal, mainly the shin splints and strained back and quad muscles.

It is very possible that since you have cut out the gluten, you have not added back in other sources of carbs-leaving you feeling drained. You might try logging your food for a couple of days and see where you end up. I use fitday, but there are several programs out there.

NoGluGirl Contributor
NoGluGirl
Posted
I WOULD stick to this simple in-expensive diet, but I'M A RUNNER. I NEED carbs or something...I got diagnosed a couple weeks ago...and I think my body is in denial--it hates wheat, but it wants it back at the same time! I have been sucking it up at practices and track meets, but I'm soo weak feeling- when I was eating wheat, I had more energy in my big toe than I have now! wtf...honestly...

*Forgive me of my ranting...its been tough dealing with my friends..etc."

Dear stennis07,

You could be going through withdrawal. You tend to be addicted to what you are allergic to. The good news is, it gets easier. I actually did not seem to experience withdrawal. My reaction is very violent, so I do not get tempted to cheat at all. My blood sugar tends to drop, so I eat small frequent meals. The Zone Diet is what I recommend to keep your blood sugar up, and give you more energy and mental clarity. I tend to get sluggish if I eat a ton of tortilla chips and salsa. I do better with a mix of protein, carbs and healthy fats.

Dear jmd3,

The coconut oil can be found at www.gococonuts.com but it is more expensive there. However, I have found it online before. I did a search and found it on amazon .com for you. Here is the URL: Open Original Shared Link .com/Extra-Virgin-Coconut...6/dp/B00016UUQ2 the price is not bad, either. This stuff has a lot of health benefits. Plus, it is the consistency of shortening when you get it. That makes it helpful for baking!

As far as the Duncan Heinz goes, I have been waiting on a confirmation myself. I do not know if I can have it since it may have dairy. I pretty much completely avoid it. Once in a while, some in chocolate does not bother me. However, if I eat pudding, I get as sick as if I had eaten gluten.

In case you guys need it, here is my beginner's list:

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

cekeren Newbie
cekeren
Posted

I am a new Celiac for the past 4 months - have been watching what i eat very carefully - finding that even with watching what i am eating i have reactions to some nuts, fruit and maybe even milk - havent pin pointed it down to what it still causing my stomach to go crazy (especially in the evenings) - i dont eat a lot anyway but am getting frustrated as to why my stomach is still going crazy on me! [

quote name='MarisaB' date='Apr 10 2007, 12:33 PM' post='289691']

Hi,

I'm a newly diagnosed Celiac and I'm at a total loss. I have been reading/absorbing all I can and I am still finding it overwhelming.

I have just found out that I am not only a celiac but I also am allergic to milk protien, chocolate, and walnuts. I believe there are a multitude of other food allergens...I am just having a hard time figuring out what they are.

I have been feeling great for the last week or so and then this weekend I got really sick. I was having a hard time figuring out if I had a virus or if I got glutened. The symptoms are the same for me. (Fatigued, muscle & joint pain, "D", every time I eat my stomach goes crazy). This has happened 2x's in the last two weeks. The only two things I can come up with are:

1. Kettle Chips- Sea Salt & Vinegar

2. San J's- Soy Sauce -No wheat

Does anyone else have a problem with either of these items?

Thank you,

Marisa

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.