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

Big Appetite Anyone?


milelj

Recommended Posts

milelj Rookie

Anyone have a big appetite? I see a lot about people with celiac disease being really skinny because of malnutrition. But if you have a big appetite you are still getting too many calories and can gain weight, right? I feel like I crave food all the time and often feel like I can't control myself. I'm about 20 lbs overweight, not horribly overweight. Maybe I have this problem of craving food because I'm not absorbing nutrients, making my body crave more food? Did anyone feel like this?

I have my appt today to be tested for celiac disease. I've had chronic anemia for about 10 yrs and it's getting worse, so my doc is finally testing me for other things.


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



Celiac.com Sponsor (A8-M):



julirama723 Contributor

I've not been "officially" diagnosed by a doctor (and I'm not sure I ever will) but after my mom was diagnosed with celiac and I was having lots of symptoms, I decided to go gluten-free.

In the year leading up to going gluten-free, I put on about 20 pounds. (I had lost 100 pounds previously, so this really freaked me out.) I wasn't eating vast quantities of food. I was exercising regularly (in fact, I was training for a marathon!) I did start to eat more grains, especially things like wheat bread (homemade, so I would add extra gluten because it was 100% whole wheat) wheat tortillas, CLIF bars with oats, etc. I was STARVING when I was in training, and I would try to eat enough to be satisfied, but that was never enough, I didn't feel like I had eaten all that I wanted. I thought maybe it was just marathon training...

This summer, after the marathon, though I was eating a bit less and exercising on a regular schedule, I gained MORE weight. This coincided with me eating still more grains. I also began to notice that about 30 minutes after I would eat wheat/oats/grains, I would bloat so hugely that my pants wouldn't fit, I'd have embarassing gas for HOURS and HOURS, I would have cramping, and constipation. I noticed that I was bloated all the time, or rather, that my body was just getting bigger and bigger in size, and still continuing to bloat after meals.

I didn't think it was gluten-intolerance until my mom was diagnosed. (I thought, how on earth could I be celiac, celiacs don't GAIN weight! That was before I realized that celiac doesn't have a singular set of one-size-fits-all symptoms. Many people gain weight, bloat, are constipated, rather than lose weight and have diarrhea.)

So long story short, yes I gained weight, yes I was ravenous, yes not all celiacs lose weight!

Since going gluten-free, I feel like my appetite has "normalized" and I don't feel the need to eat everything but the kitchen sink.

cat3883 Explorer

That is exactly what is happening to you. Your body is craving nutrients. The hunger continued the first 3 weeks of the gluten free diet. I am in my 4th week now and that has somewhat subsided. I felt like I could eat the kitchen table!!

babysteps Contributor

The last 6 months or so before I went gluten-free I never felt full, was always hungry.

Once gluten-free that subsided immediately.

I still get hungry, but I actually feel full after a 'normal' amount of food. And now if I have a small snack between lunch and dinner (for me, usually a hard-boiled egg) I am not ravenous at dinner (for a while I kept biting my lip I was so hungry while chewing!).

Bell Apprentice

Since going Gluten free, my appetite finally feels "normal". Before, I'd either not want to eat at all, or sometimes when I did eat, I would start to feel all wrong (sort of tension) inside, and actually feel extra hungry AFTER eating. I am assuming it was gluten related because it hasn't happened at all since about 2 weeks after going gluten free. I used to try and not eat for a while when I got this weird "wrong inside" feeling, but it was sometimes hard because I really wanted to! Usually, the feeling was followed by either diarrhea or awful stinky gas, and then my insides would seize up for a few days. I grew to know the series of events well enough to restrain myself!

If you are like me, it will begin to right itself after a while. Good luck.

Bell

rocon99 Newbie

Big appetite does not begin to describe my eating! I would literally feel like I was starving, and as soon as I ate (way too much at a time) I would continue to eat. My sister, niece and daughter were all diagnosed, but my test came back negative. I just went gluten-free two days ago, because something has to stop. I have so many of the same symptoms they do, just a negative test. How long does it take before the feeling of an immense hole that can't be filled goes away! :(

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

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

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.