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

All-Natural

By All-Natural
in Coping with Celiac Disease

Recommended Posts

All-Natural Newbie
All-Natural
Posted

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.  

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cyclinglady Grand Master
cyclinglady
Posted

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
lisas11lisa
Posted

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
kareng
Posted

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

manasota Explorer
manasota
Posted

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
bartfull
Posted

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
sunflower1860
Posted

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.  

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  • 1 month later...
DebbieAnnC Newbie
DebbieAnnC
Posted

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.

 

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
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      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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