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

Why don't I ever feel good......... EVER.


All-Natural

Recommended Posts

All-Natural Newbie

Im, not sure how all of this works of if this forum is for what I need but I'll give it a shot.  I've been diagnosed with celiac disease for over four years now.  Over these years I have struggled quite a bit but only recently I have been hit with CONSTANT fatigue, bloating, headaches, and I am always always tired.  Can anyone tell me possibly what the issue is.  I know whats wrong but I don't know much about it I guess.  I've been doing research online lately and what I am getting a lot of is that a gluten free diet is not the only thing that I need to be doing?  It is all confusing, I just cannot handle feeling like crap everyday for the rest of my life.  I used to be happy go lucky all of the time and I just want to get back to that state.  Keep in mind that I also "suffer" from a casein intolerance, or something, what ever it is my body doesn't like it.  (I don't know if that helps or not but I figured I would throw that out there.)  Im a first timer here so be gentle and I appreciate all the help I can get.  


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome to the forum!  

Have you had any follow-up antibodies celiac testing?  You should first rule out any gluten sneaking into your diet before investigating other possible issues.  When intestinal villi damage occurs, it can prevent the necessary enzymes to digest foods easily (like lactose (milk sugars)).  So, many celiacs often have temporary or sometimes permanent intolerances to foods like soy, corn, lactose,etc.  It is also recommended that you eat a whole food diet and avoid processed foods and eating out as much as possible at least until you are feeling better.  

I think a visit to your GI is needed.  ?

lisas11lisa Apprentice

Welcome!!..We have been diagnosed about the same length of time..U sound alot like I did..Have u ever had your Ferritin level ckd??..It is ur iron stores..I am iron deficient anemic..and have to have periodic iron infusions..also..just had to have my gall bladder removed..it also can cause alot of trouble ..keep reading...I search everything I can..goodluck!!

kareng Grand Master

I would make sure that you don't have a completely different medical issue.  Not everything is because of Celiac.

manasota Explorer

Perhaps keeping a food diary (writing down every single thing you ingest) might help?  It has helped me many times.  It has even helped me SIX YEARS after being diagnosed and going gluten free!!

Good luck!

bartfull Rising Star

I would start with the Newbie 101 page pinned to the top of the coping section here. You may well be getting cross-contamination. And yes, a food diary. And also yes, try to stick to whole foods.

If you must eat processed foods, try to stick to Kraft or Con Agra products because of their labeling policies, or to certified gluten-free foods.

And as Karen said, it might be something totally different so a follow-up with the doctor might be in order.

sunflower1860 Newbie

I have at least 2 issues going on.   I found out I had celiac last fall.   But, when I had my gallbladder removed several years before some ducts were left in.  The bile just drips and drips causing diarrhea after eating.   I was given some medication for that and it's helped.  But yes, there are more things than celiac, more allergies, sensitivities and it's frustrating.  I wanted to feel better, like normal.  There are more of those days now, but still too many when I don't.   I think a diary is a great idea.  


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
DebbieAnnC Newbie

For my daughter, we eliminated everything but meat, fish, veggies and fruits for two weeks. Then we slowly added in things about once every 5 days.  We found out she cannot tolerate corn! That means no corn syrup, which is in everything. Oats, even certified gluten free, are also an issue. Casein is an issue for a lot of people but not for her. She also was deficient in L-theanine, ferritin (makes you very tired), and zinc. L-theanine deficiency made her anxious. Maybe you could try an elimination diet and get tested for deficiencies.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,735
    • Most Online (within 30 mins)
      7,748

    Patricia KUBELKA
    Newest Member
    Patricia KUBELKA
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.