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

Well...it's Been A While, But I'm Miserable :(


jamiecasabellameeks

Recommended Posts

jamiecasabellameeks Apprentice

Okay, so it's been a while since I've been on here...mostly because I have been feeling good until the past couple months...So, here is my story, and I'm hoping someone can help...I was diagnosed via blood work then biopsy in February 2013. I've been gluten free since biopsy...with the exception of accidental glistenings and CC. After approximately 2 months on the diet I began feeling AMAZING! I didn't know what to do with all the new energy! Then, I think I began getting a little too "comfortable". I began eating lots of junk really...chips (that were not listed as gluten-free even though no obvious ingredients indicated gluten), chocolate, candy...JUNK! I was also eating a ton of frozen steamer vegetables, which I later found out that that brand states "they can not guarantee that food was not cooked on same line as wheat products". I eat a LOT of baked potatoes (maybe I have a problem with those??) Anyway...I now have proclaimed to not eat ANYTHING unless it is says gluten-free on ingredients. But I still feel so bad. My energy level is virtually non-existent. And it's worse late afternoon/night but not sure why? My joints just ache so bad and the fog/depression set in at night too...Stomach problems aren't my main issue right now. I just need some strength and for my muscles and joints to feel better. I would love to hear anyone's story and to hear suggestions?? Like vitamins you take and love, etc?? I might add I have a 3 year old, 2 year old and 1 year old...I need a "pick me up".


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



Celiac.com Sponsor (A8-M):



jamiecasabellameeks Apprentice

*glutenings not *glistenings LOL...Stupid autocorrect on my phone.

HumanDecency Contributor

When was the last time you were tested for deficiencies? What does your result panel look like? 

 

I would cut out that junk. At least for a few more months and then slowly introduce it as you know you can tolerate it. I know it sucks and you probably want to get back to a normal life as soon as possible but it's hard to say what could be causing you problems in all that junk. If you feel better off of it then it should probably go for now. I take a strong multi-vitamin with iron (pre-natal) but I wouldn't go taking anything unless you have a valid reason. Do you have a doc you see regularly? He can check your levels and tell you what you need or what you're missing. 

 

I hope you feel better and I know CC and glutenings suck. 

Take care, my friend. 

mamaw Community Regular

Just  get  back on  tract, clean  wholesome  gluten-free  foods. And  stick to it....its okay  to  have  a few  snacks &  sweets  now &  then  as  a  treat  but it  isn't  good , only for  weight  gain  to  eat  these  type  of  foods  gluten free or  not...

Think  WILLPOWER.......

feel better  soon....

jamiecasabellameeks Apprentice

Hey I haven't been tested for deficiencies in approx 2 months, but I was still a little vitamin D deficient at that time...it's just so hard to pinpoint everything, which is so frustrating...and non-Celiacs just don't understand...I'm dealing with that too. I do have a doc I'm seeing...but I am his first celiac patient. Awesome! NE Mississippi is quite behind...

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.