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
milelj
Posted

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
julirama723
Posted

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
cat3883
Posted

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
babysteps
Posted

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
Bell
Posted

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
rocon99
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.