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

Need Support And Motivation


aleshae16

Recommended Posts

aleshae16 Newbie

I was sick all my life diagnosed with anxiety, depression. A friend suggest gluten free last March and I have been trying ever since. I felt better right away. It was proof to myself that it wasn't in my head and I really was depressed and anxious because of food, which I always kind of knew. I was starting to feel pretty good, able to drink coffee again but I continue to have problems with all grains, mainly rice. Lately I'm so tired of eating meat, veg and fruit that I'm giving in a lot. I am also strapped for cash and live with family who eat primarily a gluten diet, lol. I am feeling sick again and no one understands and thinks I'm just lazy. I have quit multiple jobs because I'm too embarrassed to keep calling in sick. I'm looking for some help, support and motivation to stay gluten free. My blood test was negative and I didn't have a biopsy. I won't be able to work if I have to eat gluten again to get tested so I can't do that. I usually binge when I'm off work and then sleep the whole weekend. I could use a few gluten free friends for sure.


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

If you're binging on weekends, you don't need to eat gluten every weekday to get tested, you could just do it now. Eating gluten free weekdays and binging weekends isn't gluten free and is probably why you still feel like crap. Many people never get a formal diagnosis but if you know that it makes you feel like crap you have two options. You can either go get tested, or (and this is where tough love comes in) you can put on your big kid pants and stop eating things you know are making your life a living hell. It is possible you have celiac, in which case you are doing actual physical harm to your body every time you ingest gluten. A celiac purposefully eating gluten is really no different than someone who cuts, they're both self harming and doing so in a way that is not easily noticeable to other people. If you don't have celiac, that still likely leaves you in the NCGI category for which there are no tests other than feeling better without gluten.

 

Only you can make the choice. Either you do or don't want your life to be better, and if you do you have to choose to stop harming yourself by eating things you know are detrimental to your health. Many of us live with gluten eaters. Yes, it is hard. Yes, it can take an emotional toll. Depression is something that gets better as you are truly gluten free, and with that lifting things will get easier, but you can't look forward to that until you buckle down. For your own sake, and that of your friends and family who care about you, please start caring for yourself by either scheduling an appointment or truly going gluten free.

BelleVie Enthusiast

From someone who struggled with severe anxiety and depression for a very long time, getting off the gluten DOES HELP, but you have to be firm. You have to commit to it. There's no "maybe." You make a choice and you stick to it. You make it work. 

 

As far as getting tired of eating the same kinds of foods, I doubt that you're tired of those foods in particular. You probably just need some new seasonings and textures. It's kind of like when I gave up meat a long time ago, and started missing it, then realized one day it wasn't the actual MEAT that I missed, it was the seasoning and flavors that went along with it. Same deal here. You probably need variety. Do you cook? If so, there are hundreds of places for you to find recipes online, and you could also check out the recipe board on this forum, which is full of excellent ideas and plenty of gluten free friends to help you out. 

 

You know your body better than anyone, and you should trust what it's telling you. If you know you are healthier without gluten, make a commitment to eating gluten free and stick to it. If you do have celiac, every time you ingest even one bite of a gluten filled food, you are harming your body. I hope that you value yourself and your body and your life more than that! As the old saying goes, "Eat to live, don't live to eat." 

 

You CAN do it! If you can get through just a week or two completely gluten free, the difference in how you feel should be enough to keep you going. Come here if you feel the need to binge or eat even a little bit of gluten. There are many wonderful gluten free cheerleaders here who are very kind, compassionate, and always ready with good advice. 

1desperateladysaved Proficient

Welcome Aleshae,

 

I discovered my body really doesn't  like grains either.  I recently read the book, Breaking the Vicious Cycle by Elaine Gottschall NA MSc.  I found recipes that use nut flours which make foods that are delicious and filling.  You can also found grain free recipes on line.  In order to avoid cross contamination you could set up your own kitchen with electric skillet, utensils, and a table for countertops to avoid cross contamination.  IT feels so good to feel alert, healthy, and strong, so take steps toward it and don't stop!

 

I began the diet dragging myself, after 30 years of symptoms.  Now, I am up and running.  I hope to shortly hear that you are making progress.

 

D

Pegleg84 Collaborator

Ditto on what Adelaide said (a bit of tough love, but it's true). If you have been caving in to the gluten on a regular basis, you probably should try getting tested because likely damage would still show since you've never had time to completely heal. If you've caving other grains (rice, etc, as you said), then it's just a sign that you really have to leave them out.

 

Depression is one of the worst symptoms of Celiac/NCGI/etc, since it sucks our very will to do what we need to do, so know that if you stick to it 100%, you WILL get better, your motivation and energy will start coming back, and you'll have the confidence to keep going. Likewise if you get glutened, your mentality has to be that you slipped up and will get better and will do everything to prevent it from happening again. Depression/anxiety is a symptom, not a condition, and you can get through it (you can! really!)

 

anyway, welcome to the Forum. Big hugs and good luck.

AVR1962 Collaborator

Keep with the diet. I was actually diagnosed but my daughters were not and all have gone with a gluten-free diet. If they have any gluten they will feel ill so they know not to eat it or pay the price. Your body is telling you something and no one else has to be on-board with it and you do not need a diagnosis. If it makes you feel better to be on a gluten-free diet, go for it!

aleshae16 Newbie

Hello all, thanks for the replies. I understand the tough love. Although these may sound like excuses to you, and probably are, it is what it is. I don't want to get a biopsy because I don't have friends of family to support me. I live an hour from a testing center and I would have to find a ride there and as for getting put under, or just given silly gas for the procedure, I won't do it. They had to force me to when I had my wisdom teeth out and I just won't do it again. Not to mention preparing for it, I can't do that in my current living situation, so for now, that's out. I still somewhat believe it's in my head considering the negative blood test even though I hear people say it can be wrong.

 

When I can afford to buy my own groceries, I'm ok. However I live with family and honest to god, don't have a cent to my name right now. I have to eat what's in the house and as much as I try to just eat the whole Gluten-Free foods, I get hungry. Since rice and other grains hurt my stomach as well....there's not much to pick from besides fruit and veggies. They have pizza every weekend and lots of breaded food at dinner. It's just tough. I quit smoking a few years ago and that took several years as well. Guess I'm weak! BUT It's January 1st and today I'm trying again, even if I have to starve, I guess!


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

I hope you can find some kind of a job.  It sounds like all you need is money for food and perhaps some utensils.  Since gluten makes you sick, you need to avoid it somehow.  If you got any holiday money, spend it for food, electric skillet, and spatula.  If you didn't, hang on.

 

As you feel better, you will be able to work more.  The more you work and cook the better you will feel.  Even if you don't have celiac, that doesn't mean you don't have a severe gluten problem.  Time away from gluten can prove this to you and your family.

 

Health to you in 2014 and thanks for the update.

 

D

skullgrl Rookie

Hey,

I think you should still consider trying to force yourself to get tested. I know its hard! I had a very bad experience with my wisdom tooth removal but I can tell you the biopsy was nothing compared to it. If you were eating gluten-free at the time of the test that could have caused the negative. If you do have Celiac disease then you will be able to claim some tax exemptions for the difference in food cost which could really help. Great job on quitting smoking! 

 

Just remember that there are people on here to support you, perhaps you could find a support group to help you out in your area? 

 

Feel better in the new year! 

aleshae16 Newbie

:) I will be going back to work in a week, even though I'm still a temp. there, I hope it will be ongoing. It's sad but my family doesn't really "get it". I just hide when I don't feel well, or sleep. I think I slept off the last of the gluten since new years. I slept 24 out of 48 hours! :P I am staying away now and I agree that in time it will get better and make life easier. I decided to make a list of all the things I didn't get to enjoy in childhood because I didn't feel well, and I'm going to relive them! I`m talking disney movies with popcorn or go on a ride at the fair, sleep over at a friends etc. I missed out on a lot. relationships were also hard, I never liked spending the night in fear of the sick, anxious feeling. I know it goes away when I stay away from gluten and I think posting here really did help motivate me. Thanks guys!

aleshae16 Newbie

Also I read the book Breaking the Vicious Cycle last March and tried the SCD diet for 1 week. It was the best week of my life and that was when it all started coming together. Maybe I`ll get tested someday but for now there are too many negatives, not to mention the horrible cystic acne that I get when I eat the stuff. I`m on a roll since Jan 1st. My only concern is Folgers coffee....it seems to bother me much more than a Tim Hortons coffee.

GF in BC Newbie

I decided to make a list of all the things I didn't get to enjoy in childhood because I didn't feel well, and I'm going to relive them! I`m talking disney movies with popcorn or go on a ride at the fair, sleep over at a friends etc. I missed out on a lot. relationships were also hard, I never liked spending the night in fear of the sick, anxious feeling. I know it goes away when I stay away from gluten and I think posting here really did help motivate me. Thanks guys!

 

What a wonderful idea! I hope you won't mind if I use it as well.

 

I lost more than 40 years of my own life. I want to go on a hike, or kayaking or go with the 'girls' to Vegas for a weekend. I missed all the fun kid stuff too - the summer holiday camps, the sleepovers, most babysitting opportunities and even just hanging out at the mall. I'm really trying not to feel sorry for myself for what I lost, but excited for what is now ahead. :) It's only been 4 weeks and I'm sure I'll feel better about this in time. :)

 

Thanks for this post...it has given me a really fun goal to look forward to! I've missed out on planning things....you can't commit when you don't know if you'll be 'sick' that day. :(

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. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    2. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    3. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    4. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    5. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748

    Condon
    Newest Member
    Condon
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • 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.