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When does celiac recovery get better?

Celiac-survivor
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Celiac-survivor Newbie
Celiac-survivor
Posted

In April of this year I have been diagnosed celiac and I’ve been following strict gluten free since. In the beginning, I’ve felt better. However, now I’m feeling bad again. I’ve completed cut out gluten, lactose and even fructose and I still feel very fatigued, have muscle pain and my stomach swells up to looking 9 months pregnant. I also have quite bad joint swelling and rarely have any appetite. It’s been past 5 months since I have been strictly gluten free and I was hoping to feel a lot better than this. I’m beginning to lose hope and it’s stressing me out quite a bit. Has anybody felt like this during recovery? How long before you noticed a positive change?

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trents Grand Master
trents
Posted

It is certainly possible/probable that you have developed an allergy/intolerance to some other foods. Due to the "leaky gut" syndrome that accompanies Celiac Disease, the immune system becomes dysfunctional and reacts to some benign food substances as if they were invaders.

Ennis-TX Grand Master
Ennis-TX
Posted
(edited)

The distention makes me think you could have gotten gluten in somehow, perhaps some contaminated cookware (cutting boards, colanders, scratched pots/pans, cast iron, wooden utensils, etc). Double check everything on this note and consider a elimination diet to see if it is a new food issue or if a condiment/food you thought was safe is not. Also do not trust others cooking, or eating out.

Look at going to eating 2-3 only safe whole foods (one ingredient no seasoning or minimal salt/pepper) for days up to a week only these ingredients, then change one out for a new one every 2-3 days and note any changes. (IE Eat only Eggs, Baked Chicken, Beef, for a week then change out Chicken or beef for for sweet potatoes or some kind of greens for 2 days and note any changes. If fine then choose one food to drop and try adding another change out.)  Many end up with common ones like dairy, soy, nightshades (potatoes, tomatoes, peppers), garlic, onions, corn, legumes (peanuts, lentils) as problem foods. These are normally intolerance or sensitivity issues but sometimes can be allergies. The former can go away with time and healing, allergies can lessen in severity but will always need to be avoided.

Edited by Ennis_TX
cyclinglady Grand Master
cyclinglady
Posted

All great advice.  I would call your doctor, because you are approach8 g six months.  You should get those antibodies tests again to see if they are on a downward tread.  If still very high or higher, you could be getting gluten into your diet.  
 

Do not eat oats, avoid processed foods as much as you can, or do not go out to eat until you see improvement.  

Scott Adams Grand Master
Scott Adams
Posted

For some a low FODMAP diet is the only way, in addition to their gluten-free diet:

 

DJFL77I Experienced
DJFL77I
Posted

hmm well its about 3 months for me now...  still have GI discomfort tho

DJFL77I Experienced
DJFL77I
Posted

dont have appetite issues tho or muscle pain, no joint pain.. energy levels normal...stool looks normal.. 

main issues for me still are some dizziness and some GI discomfort still...

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    • trents
      Inflammation and Menier’s disease link?

      By trents · Posted

      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Inflammation and Menier’s disease link?

      By nataliallano · Posted

      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      Hypothetical question about antibodies

      By Scott Adams · Posted

      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Chest pain from celiac

      By Betsy Crum · Posted

      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
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