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

Help! New At This!


jlove17

Recommended Posts

jlove17 Newbie

For the last year and a half I've been sick every time I ate....it has been the most depressing experience. I studied abroad in France Summer 2007 and got a parasite, but when I returned I wasn't feeling much better. My doctor told me to cut out dairy.

I stopped eating dairy and felt a tiny bit better, but after a few months I knew it wasn't making difference. I had an endoscopy and learned I had a hernia and my stomach was "really irritated" but the doctors couldn't figure out why and told me to take Prilosec.

I refused to accept IBS as a diagnosis, as I have lost almost 35 pounds in a matter of months and knew it was something else. I did a lot of research on my own. I was diagnosed with an extremely rare autoimmune skin disease when I was 12, so when I came across celiac I think I cried tears of joy. Its the only thing that makes sense to me. With my doctor's blessing, I decided to go on a gluten-free diet late this May.

I have definitely noticed a difference in my life without the gluten- it's a miracle for me to wake up in the morning without a stomach ache. However, I still have days where I don't feel well and I know it's because I'm getting gluten here and there without realizing it. I am a poor college student without much time, so its really hard for me to cook all of my own meals. I'm wondering if everyone could just throw out things that I should be avoiding that maybe I'm not?? I've just started avoiding salad dressing out of fear, but I know some are ok. I'm so frustrated because I don't know what to eat!! What ingredients (besides the obvious!) should I be avoiding??

Also, I started eating dairy here and there, mostly yogurt, and have been feeling ok, so I'd like to keep that in my diet.

And finally, when out at bars and stuff, what is safe to drink?

I am really determined to maintain a normal lifestyle if possible...I'm only 21 and the thought of being this confused forever leaves me with a lot of despair. Any wisdom, encouraging words, whatever. Thanks!!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I did a quick search for you. This thread should help:

Open Original Shared Link

MELINE Enthusiast

welcome!

I hope you will soon start feeling better.....

The non - obvious ingredients are listed in the home page of celiac.com (look left and you will find a relevant topic)

Be carefull with shampoos, face creams, cosmetics, toothpaste (aim and colgate are ok),soaps,mouthwash, and try to eat as simple as you can. Salad dressing??? too too too dangerous for the beginning!!!!! try to keep it clear. potatoes,meat , salad, rice (uncle ben's doesnt have gluten - some others have). Spicies we use at food...use the ones you will find in a healthy store (they list all the ingredients) cuz the ones you get from a super market may have starch as an additive for economy. check your coffee and your medicins/supplements.the label "no added starch" DOES NOT mean that it is gluten free. eat-drink nothing with artificial color (it may have gluten). check out vinegar you use. in some countries caramel color has gluten (I hear that in US this is not the case - but check it out).

I hope I didn't scare you. Trust me, as time goes by u will be able to avoid hidden gluten very easy.

Gluten-Free Guy Newbie

First, let me say "It will get better." When I was first diagnosed 7 years ago, I was overwhelmed, but now it's pretty easy for me to be gluten-free. The riskiest thing is eating out, not only at restaurants, but also at people's homes, school cafeterias, etc.

You say you eat yogurt. Most Yoplait flavors are safe (and probably some other brands), but some brands or flavors within a brand contain gluten, so read labels. I believe Dannon products often contain gluten.

At your health food or specialty stores, you can find Glutino brand frozen pizzas, breads, bagels, donuts, muffins, etc., that are gluten-free. Toast the breads, hamburger buns, hotdog buns, etc. for better flavor and texture. There are few other brands of breads that I have been as satisfied with.

You can find many gluten-free cereals and other products at health food and specialty stores. Watch for labels that indicate "gluten-free." General Mills Rice Chex are gluten-free, but watch for the label on the front of the box (there may still be an older box on the grocer's shelf that is NOT gluten-free). Tinkyada brand rice pastas (spaghetti, etc) have the best flavor and cook most nearly like wheat pastas. I'm sure you know that "wheat-free" is not necessarily gluten-free, because a product may contain barley or its derivatives, rye, or contaminated oats without containing wheat.

Always read product labels each time you buy, because manufacturers sometimes change formulations so that a product that is gluten-free today may not be gluten-free tomorrow. Also, in any given brand name, there will likely be varieties or flavors that are gluten-free and some that are NOT gluten-free. Federal law requires listing wheat or wheat derivatives on labels, so that is easy to spot. Barley is trickier, but if you see the words "malt or malt flavoring," it often comes from barley. However, there is a corn malt that is safe.

When I last checked, the following were gluten-free, but you should read the labels to be sure: Dinty Moore beef stew, Hormel corn tamales, Hormel Vienna sausages, some Hormel and Oscar Mayer sandwich meats (some Hormel packages indicate "gluten free"), Kraft cheeses (except blue cheeses), Lay's Classic potato chips, Fritos Original, Cheetos Original, Tostitos corn chips, Hormel chili with beans (but NOT the chili without beans), Ball Park hot dogs, French's Classic Mustard, Heinz regular flavor ketchup, Kraft Real Mayonnaise, most jams and jellies, Smucker's Natural peanut butter, Vlasic pickles and pickle relish, McCormick Sloppy Joe mix (but some other brands contain gluten), Minute Maid orange juice and lemonade, most soda pop brands, Hershey plain and almond candy bars (but not the crunchy varieties), Butterfinger, Snickers, Edy's Grand Ice Cream (but not the obvious flavors such as Cookies and Cream), most canned and frozen fruits and vegetables (but some frozen French fries are dusted with flour to avoid sticking), some Progresso canned soups, Planter's nuts (but dry roasted usually contains gluten), Orville Redenbacher and Act II microwave popcorn, Mission brand corn tortillas in the red box (it indicates "gluten-free" on the label), Old El Paso refried beans, Old El Paso Cheesy Mexican Rice, most canned tuna. There are a lot more, but this list will get you started.

I suggest that you order the "CSA Gluten-Free Product Listing," a book that lists hundreds of gluten-free products and the terms to watch for in product labels. In my opinion, it's the most useful reference a celiac can own. It's $30 at www.csaceliacs.org and is published by the Celiac Sprue Association. It's a big help, but it's not fool proof, because a manufacturer may change a formulation so that a food listed in the book as safe may no longer be safe. The book is updated periodically. Again, it's important to read labels.

Also, check every prescription and non-prescription medication you buy. The binders, excipients, flavorings, colorings, etc., can contain gluten. The website www.glutenfreedrugs.com is a great help, but it has some omissions and can get out-of-date when a manufacturer changes a formulation.

For any food or medication, if you aren't sure about the gluten-free status, call the manufacturer. I've heard that manufacturers receive more calls about gluten than any other topic. Many companies' websites will list gluten-free products under tabs for nutrition, health, etc.

One more thing: Never, never cheat and consume gluten. Continued consumption, even on an infrequent or small scale, can lead to several serious health problems, the most serious being intestinal cancer (although I don't think it occurs often).

Good luck. Once you learn which products are safe and what terms to watch for in labels, it will get much, much easier. Believe me, in a few months, your gluten-free life will get much better.

CeliacAlli Apprentice
For the last year and a half I've been sick every time I ate....it has been the most depressing experience. I studied abroad in France Summer 2007 and got a parasite, but when I returned I wasn't feeling much better. My doctor told me to cut out dairy.

I stopped eating dairy and felt a tiny bit better, but after a few months I knew it wasn't making difference. I had an endoscopy and learned I had a hernia and my stomach was "really irritated" but the doctors couldn't figure out why and told me to take Prilosec.

I refused to accept IBS as a diagnosis, as I have lost almost 35 pounds in a matter of months and knew it was something else. I did a lot of research on my own. I was diagnosed with an extremely rare autoimmune skin disease when I was 12, so when I came across celiac I think I cried tears of joy. Its the only thing that makes sense to me. With my doctor's blessing, I decided to go on a gluten-free diet late this May.

I have definitely noticed a difference in my life without the gluten- it's a miracle for me to wake up in the morning without a stomach ache. However, I still have days where I don't feel well and I know it's because I'm getting gluten here and there without realizing it. I am a poor college student without much time, so its really hard for me to cook all of my own meals. I'm wondering if everyone could just throw out things that I should be avoiding that maybe I'm not?? I've just started avoiding salad dressing out of fear, but I know some are ok. I'm so frustrated because I don't know what to eat!! What ingredients (besides the obvious!) should I be avoiding??

Also, I started eating dairy here and there, mostly yogurt, and have been feeling ok, so I'd like to keep that in my diet.

And finally, when out at bars and stuff, what is safe to drink?

I don't have specific ingredients but be careful of:

hair products

shampoo

conditioner

makeup

lotion

srry that i'm not much help=[

I am really determined to maintain a normal lifestyle if possible...I'm only 21 and the thought of being this confused forever leaves me with a lot of despair. Any wisdom, encouraging words, whatever. Thanks!!

tfdswift68 Newbie

Hey everyone,

I have several health problems. After three months of pain and vomiting, my doctor sent me to a specialist... I had severe celiac disease. Everday I learn more and more things I need to stay away from. I want to know how people deal with the depression and the pain? Not a day goes by that I don't think I'd be better off dead. It's not just the diet and avoiding gluten it is the pain and the nausea. Everyday I run a low-grade fever and I have no energy.

When I was diagnosed with Celiac, it was # 13 on the list of major health problems I have. I am just sick of doctors appointments, tests and medical proceedures.

I live in the middle of nowhere, Alaska. I have enough reasons to not be very social, but now I'm a freaking hermit because I don't want to risk any contamination. I amost wish I would have had stomach cancer than celiac.

Any advice would be appreciated.

CeliacAlli Apprentice

In response to the tfdswift person:

IT IS GOING TO GET BETTER!

The only way it can get worse is if you don't try your hardest to make it work.

First off clean your kitchen of all gluten, if that's not possible get yourself four baskets of just your food.

Next check your shampoo, lotions, soaps, etc..

..Now this is some factual info that you may not like but it's true...

Your pain will mostly go away when you are completely gluten-free

Your depression will go mostly away when you are completely gluten-free

You ARE going to have days when you say things like " some one can take this celiac disease and shove it up there ***"

BUT YOU WILL LIVE THROUGH IT!

On another note...

We've all been there when we/parents have been absolutely terrified of cc, but you don't have to completely isolate yourself to be gluten-free, you just need to be careful.

And lastly....

You do not wish you had stomach cancer and not celiac...I wish you would take that back.

It is going to get better, you cannot master it overnight, you just cannot it isn't possible.

You need to get up every morning and say "It is possible to be gluten free, and today I am going to try with all my might to make today a good one as normal as it can be"

If your thoughts like this persist...

go see a doctor for anti depressents because many people have used them to start their lives over

Post on here or pm me if you just want to vent/talk. :(

sorry about the confusing message I had before I screwed it up with the whole quote thing...=/oops

and the thing after this....man I'm good at screwing things up!


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



Celiac.com Sponsor (A8-M):



CeliacAlli Apprentice
IT IS GOING TO GET BETTER!

The only way it can get worse is if you don't try your hardest to make it work.

First off clean your kitchen of all gluten, if that's not possible get yourself four baskets of just your food.

Next check your shampoo, lotions, soaps, etc..

..Now this is some factual info that you may not like but it's true...

Your pain will mostly go away when you are completely gluten-free

Your depression will go mostly away when you are completely gluten-free

You ARE going to have days when you say things like " some one can take this celiac disease and shove it up there ***"

BUT YOU WILL LIVE THROUGH IT!

On another note...

We've all been there when we/parents have been absolutely terrified of cc, but you don't have to completely isolate yourself to be gluten-free, you just need to be careful.

And lastly....

You do not wish you had stomach cancer and not celiac...I wish you would take that back.

It is going to get better, you cannot master it overnight, you just cannot it isn't possible.

You need to get up every morning and say "It is possible to be gluten free, and today I am going to try with all my might to make today a good one as normal as it can be"

If your thoughts like this persist...

go see a doctor for anti depressents because many people have used them to start their lives over

Post on here or pm me if you just want to vent/talk. :(

Donna T. Newbie

Thanks for all the lists and links to "normal" everyday foods we can eat. The hardest part for me is packing something to eat at work. Now I can see several options.

happygirl Collaborator

Here is some help with label reading:

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

Not safe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Companies with a clear gluten labeling policy. If you don't see wheat/rye/barley/barley malt/oats, then its not hidden. Open Original Shared Link

Other good info to help you get started:

Open Original Shared Link

gfpaperdoll Rookie

"I live in the middle of nowhere, Alaska. I have enough reasons to not be very social, but now I'm a freaking hermit because I don't want to risk any contamination."

well I live & work in the middle of Houston, Texas. :( can I come visit you!!! ;):lol::lol: The middle of no where sounds divine to me. I do not know how a country girl like me got stuck in the city!!!

Do you have a support group in Alaska? It is always good to have a gluten-free person to talk to.

You will get better. In a year or so you will be so healthy you will have forgotten how rotten sick you were!

In the meantime you can hang out with us & we will be glad to hold your hand. B)

The beginning is the hardest, but each day it gets easier...

ravenwoodglass Mentor
Hey everyone,

I have several health problems. After three months of pain and vomiting, my doctor sent me to a specialist... I had severe celiac disease. Everday I learn more and more things I need to stay away from. I want to know how people deal with the depression and the pain? Not a day goes by that I don't think I'd be better off dead. It's not just the diet and avoiding gluten it is the pain and the nausea. Everyday I run a low-grade fever and I have no energy.

When I was diagnosed with Celiac, it was # 13 on the list of major health problems I have. I am just sick of doctors appointments, tests and medical proceedures.

I live in the middle of nowhere, Alaska. I have enough reasons to not be very social, but now I'm a freaking hermit because I don't want to risk any contamination. I amost wish I would have had stomach cancer than celiac.

Any advice would be appreciated.

Hang in there. Things will get better and you may have the added benefit of seeing some of the other 12 conditions go into remission. Be sure to check everything, there is no such thing as being to paranoid at first. Also especially in the early stages of being gluten free a withdrawl aspect can appear. This can lead to depression but it will pass on it's own as you heal. Stick with as much naturally gluten free food as you can at first and do feel free to ask any questions you need to. It will get better once you have healed.

Until the depression lifts try to pamper yourself a bit and get plenty of excercise and fresh air whenever you can. Both will help. You should also get some sublingual B12 tablets as they will help with energy and nerve function. If you do decide to try antidepressants or a mood elevator please be aware that for some of us they can have peculiar and undesired side effects. Do watch carefully for any increase in depression, suicidal ideation and psychotic effects and if you have any do contact the doctor immediately.

  • 2 weeks later...
jlove17 Newbie

tfd- I feel your pain...there have been so many times when I've wished I had something other than celiac too...but instead of being upset about it, think about how fantastic it is to FINALLY have an answer. I was diagnosed with an autoimmune disease when I was 12....depression when I was 17.....ALWAYS been sick (menengitis, whooping cough, mono, all within a year)....I really felt like I was never going to feel completely healthy ever again. It's hard, but knowing how to solve the problem makes everything better/more worthwhile.

I think the hardest part for me is being social, and going out and drinking with my friends. But you DONT need to be a hermit. Just don't eat out! If you go visit friends or something, bring rice cakes. AAAAAnyway...don't get down. You'll be healthy in no time, and soon you'll forget what real bread even tasted like!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.