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

Gf, Weightloss, Lack Of Appetite


dbuhl79

Recommended Posts

dbuhl79 Contributor

Hi, new to this section. I am slowing determining that I may be gluten intolerant. I do know I've felt like a normal person going gluten-free for a week. Back on gluten in hopes I can get a biopsy done soon!

I've lost weight since the onset of my stomach upset (diarrhea) and going gluten-free. But during my episodes such as today with abomdinal pain, I am finding I lose my appetite. This is extremely unlike me as I was typically a very big fan of food, particularly carbs. Now I have no actual apptetite (i.e., stomach hunger) and no mental desire to eat. I eat, because I know I need to have some sort of fuel.

Has anyone else run into this, lacking an appetite altogether? Does the gluten-free diet help with that? Although I can stand to lose 10-15lbs, and only dropped 4lbs in 2 weeks, my body has never shed weight at this pace w/o excessive exercise. So this is very unusual for me and even received raised eye brows from my doctor. I am not terribly concerned as I do not seem to have a massive weight loss (40lbs etc) as I've read of other Celiacs. But it is concerning a few around me if this continues. Any suggestions?


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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

I also lose my appetite when I'm bloated or in pain from gluten/casein/soy 'slips'. But when I recover, stick to my gluten-free/CF/SF foods, I feel better and more interested in eating. I think that when my body is suffering a food intolerance reaction, it's not too interested in handling MORE food, so loss of appetite allows it to focus on healing. However, if I'm not hungry and I eat or I overeat when I am hungry, I feel awful afterwards--LOTS of indigestion AND pain. :blink:

If you 'can stand to lose 10-15 pounds', just enjoy those loss of appetite periods while they last. You might have lost some 'water weight', since consuming excess carbs will influence water retention. Excess weight certainly doesn't help your body anyway ... there are soooo many conditions associated with excess weight. Perhaps you will learn to only eat when you are truly hungry only enough food to satisfy hunger as you use the gluten-free diet to recover from celiac damage. That's the most natural and easiest long term weight control technique anyway. ;)

BURDEE

dbuhl79 Contributor

Burdee,

Thanks. Oh trust me I will revel in any future weight loss. My real issue is my doctor and boyfriend being overly concerned about it. I've reminded them I won't waste away! :) Glad to know I'm not alone.

Thanks.

Guest jhmom

Hi dbuhl79 and Welcome :D ,

I am there with ya! I too have no appetite and have to force myself to eat. I also lost 40lbs 2 years ago and recently lost another 10lbs in just a months time. My doctors do not seem to be very concerned but like you, it worries me and my husband. All of my friends and family are concerned too, I can't tell you how many times I hear "you are getting too thin, you are going to blow away".

Unfortunately I think I have other problems in addition to "gluten sensitivity" due to the fact I have been gluten-free for going on 14 months with little improvement. Just keep an eye on your weight and try to eat as often as you can and notify your doctors if you lose a lot of weight in a short time.

Good luck to you and take care.

tarnalberry Community Regular

For me, my appetite seems to revolve around my cycle. :-) The week before my period, I'm often ravenous - after that, as long as I'm busy, I'm not hungry. :-) But I'm not particularly underweight, so only make myself eat enough to make sure I don't experience hypoglycemic symptoms.

flagbabyds Collaborator

I always loose my appetite when I get gluten because it hurts my sromach and I know it is bad for me so I just don't eat when I get gluten posioning because it just makes me more sick

dbuhl79 Contributor

Tiffany,

May I ask what your hypoglycemic symptoms are when not eating enough?

Thanks,

Dana :)


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star

I have this problem..used to have a size 12 waist before I got sick last Jaunary, now have a size 5 waist..I dropped about 45 pounds, gained 20, now I've lost 10 again. I usually only eat when I FEEL like eating. Most of the time I have no appetite..It sucks :P

Its also a real pain in the butt to hear people tell me how tiny I am..

~lisa~

celiac3270 Collaborator
Its also a real pain in the butt to hear people tell me how tiny I am..

I know...I hate that...I already know that I'm thin without being told......I'm making progress, though. I'm almost 14 and I used to be 5' and 65-70 lbs. Now, 8 months later, I've gained 20 pounds, grown 2 inches, and increased 1 1/2 shoe sizes :D .....I have a little ways to go, but at 85 pounds, I don't look too different anymore. I remember hating when people said that in the past, though.

taneil Apprentice

dbuhl79,

I went gluten-free 6 months ago and was at about 165 pounds with my "ideal" weight being around 135 pounds. I am like you where I never lost weight unless I was doing a lot of excersise. Now I was between 135-140 pounds. I feel good and am not doing a lot of excersise. My theory is that because I was gluten intolerant the gluten had the opposite effect on my body than a lot of people with it. Instead of loosing weight it actually caused my body to store fat. Now that I am gluten-free and getting the correct foods, my body is about to burn what it needs instead of storing what is toxic to it.

This is my theory as I am now close to my ideal weight. And I too have had people say "you are too thing..." "You don't need to lose any more weight..." I think three things of people who say these things to me:

1) They care about me and are conserned

2) They themselves probably need to lose weight but can't so when the look at me they realize what they wish they could do but can't

3) They haven't ever seen me this thin, and are used to the heavy me instead of the thin me. And if they met me for the first time now they probably wouldn't think much about how thin I am.

darlindeb25 Collaborator
:D exactly taneil---your theory is correct---my borther in law has been working hard dieting and he is looking very good, but is thinner then we have ever seen him--my mom said just what you said---"steve, you are getting too thin" and he looks great and he feels great--that's the thing-----dont worry what others are thinking, you know your body and you need to take care of it----they will adjust--deb :D
dbuhl79 Contributor

Taneil/Deb,

Thanks to both of you. Its comforting, and I quite honestly, know I'd like to lose this weight. My ideal being under 130, and losing 15lbs will be fine. My concern is losing it now, being on gluten, is a sign of malabsorption(sp) and lacking the necessary nutrients. I would be delghted to go gluten-free and lose the necessary weight.

Luckily I know my own family will be supportive as they know I have struggled (along with them) to maintain a appropriate weight. So it lifts my hopes that Taneil you are right about my body processing burning the calories more appropriate!

My significant other and family will have to adjust. I'll keep your 3 ideas in the forefront of my thought process. As they come from a very southern, good cooking, "keep meat on them bones" kind of family.

Thanks for the helpful comments from everyone. I had a rough weekend with this so, its definitely a pick me up for Monday!!

Dana :D

  • 3 weeks later...
cynicaltomorrow Contributor

I have also lost weight since going gluten-free (15 lbs). I'm now down to 135 (which I once considered my ideal weight). However, I'm still as chubby as I ever was, which I think is weird. I know people that are my height and my weight, that don't have anywhere near the same build as I do. My pants may be fitting a tiny bit looser, but other than that, I can't really tell. I think it's really weird and kind of worries me.

darlindeb25 Collaborator

cynicaltomorrow--- ;) give yourself more time--i am not sure of your age--i know that my body changed over the years and i know now that i will never have that same body i had at 17--i would love to get it back--but i had 5 babies and things have changed----muscle tone changes--i have lost 60# andi do look so much different and i would love to lose at least another 30#--i have been sitting here at this weight for months now--at least i am not going up :rolleyes:--i feel so different now and after losing the 60# things moved--i may not have lost more, but i have become more defined--i have shoulders again :P and a neck :rolleyes: i have bones :lol: it will happen for you too--just give it time--deb :D

FreyaUSA Contributor
I have also lost weight since going gluten-free (15 lbs). I'm now down to 135 (which I once considered my ideal weight). However, I'm still as chubby as I ever was, which I think is weird.

We are our own worst critics! I learned some years ago that no matter what I weigh, when I look at myself in the mirror I look like me. Sounds silly, but I see no weight loss when I lose. I see no weight gain when I gain. I always look slightly overweight with blobby hips. :rolleyes: Now, I'm about 140 lbs, 5'9" and am a size 6 to 8, the least I've weighed since high school. Friends tell me I look great while my mother is concerned that I'm not eating (and she's currently staying with me so she knows exactly what I'm eating and I am NOT starving. :lol:)

This kind of unrealistic, unobjectiveness is the reason some girls/women become dangerously anorexic. They still see themselves as "fat" even though they are nothing but skin and bones. Knowing this about myself, I use clothing as a guide rather than some magic number on the scale. Even though I love the idea of losing more (it's almost like a strange addiction, losing weight...) I just accept that a 6 is a bit too light for me, an 8 being perfect. I based this on friends and others of approximately my same height and build. Could it be this is the same for you?

Also, remember, for women over 30, being just a bit too thin easily adds 10 years to how you look. :ph34r:

cynicaltomorrow Contributor

I have a hard time telling that I'm losing (or gaining) weight by how my pants fit, as I wear baggy guy jeans. B) I'm almost 20, a little over 5'4, and probably wear a 12 or 14 jeans even though I only weigh about 135 lbs. Just a little confusing for me. And, you're right; losing weight is addictive. I never even think about it until I notice that I'm losing weight.

darlindeb25 Collaborator
:lol: i have been reading these posts and one thing is certain--we all look in the mirror and see ourselves and we dont see the difference----i do see a difference now compared to before gluten-free--i told my sister-- :P i have a neck, collarbones, and my chest is hard now, not cushy and wow, i am not a member of the itty bitty titty club anymore :P they were hiding in that other fat :lol:----she tells me that i am more "defined" now, developing definition :P whatever--hehe--------what i do notice---when i see pics of myself, i do see a thinner person and if pics add 10#--well yeha :lol: --i will never be skinny, but i am so much better then i was--i know people laugh when you say you are big boned, but some people are--i am big boned--when i married at 17, i looked too thin and i was wearing a size 14 then--size doesnt matter, it's where we are comfortable being us ;) learn to be comfy :D deb
mommida Enthusiast

Symptoms of zinc defiency would include loss of taste and appetite (anorexia),delayed healing, increased susceptibility to infection, retarded growth, and hair loss.

Laura

dbuhl79 Contributor

I just need to vent! :(

I know I've "glutened" (as some may call it) myself this past week. I've only suffered mild abdominal discomfort, but the last 3 days I've noticed feeling woozy in the afternoons and back to NO appetite. Which concerns my significant other who insists I eat. Don't get me wrong, I'm forcing myself to take in food. Now normally back in my dieting days, I would love this! But when it makes me feel light headed, woozy, and hunger pains its so hard when everything just does not look appealing. All I've gotten down today is 2/3rds of a gluten-free muffin and two rice cakes w/ peanut butter. Everything is so unappealing, its like someone has been asking me to eat all the foods I detest, even though I know I like these! AGHH! To top it off, all I want to do is sleep!! Oh well..thanks for letting me vent! Can't wait until the work day has ended!

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 GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    3. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    4. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    5. - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
×
×
  • 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.