Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I'm Wasting Away...

lorka150

By lorka150
in Related Issues & Disorders

Recommended Posts

lorka150 Collaborator
lorka150
Posted

Hey everyone,

Brief background:

Self-diagnosed about a month ago. Way, way, way too many symptoms. Exercised and have eaten a great, nutritious diet for over a year (before it was a little shaky). I exercise daily (I run).

Over the last year (as I changed my eating habits and such), I lost 30lbs or so. It was great, I felt like dung because I didn't know what the hell was going on with my stomach, and fatigue sometimes kept me in bed for days, but otherwise, I was eating well and exercising when I could.

So I get home in May (from university), and I start running, as I am finding that if I run before breakfast, interestingly enough when I didn't eat anything yet, that I had the energy to do so. I drop about 5lbs in two months - unneeded, but definitely due to running. I also put more grains in my diet, for energy. The opposite was occuring. (Wonder why, eh?)

So then I get suspicious about this disease, and whatever (you know how it goes), I self-diagnose and all signs point to yes, and I go gluten free.

All of a sudden, I have more energy, feeling better, things are slightly improving (little things here and there). Stomach still acting up, but everyone tells me that takes months. I am eating tonnes and constantly eating. I am consuming all food groups - not too many grains (putting them in slowly, and it's hard because I'm allergic to rice and buckwheat), but tonnes of good carbs to make up for it.

Anyway, that hardly makes a difference because I wasn't a wholegrain carb junkie anyway.

So, in one month, I dropped about 15 lbs. I have eaten even more than I usually do, and am doing the same amount of exercise.

I am 5'7.5'' and weigh 110lbs. That's pretty sick. I'm a size 0 and everything is too big; I look like an anorexic, and I hate hearing the gossip.

Did this happen to anyone - the weight just PEEL off? Is it because my body isn't absorbing anything? What's going on?

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
Did this happen to anyone - the weight just PEEL off? Is it because my body isn't absorbing anything? What's going on?

<{POST_SNAPBACK}>

Are you sure you're not accidently getting some gluten? My weight starts dropping fast if I get glutened...I think because I havent really healed yet....also its very bad if I repeatedly get glutened. This is when I look scary thin.

lorka150 Collaborator
lorka150
Posted
  • Author

Rachel

I'm almost positive! There is really no way I can be glutened, I am being neurotic about everything that touches my mouth, skin, hands, everything.

Could it just be my body still adjusting? It's only been about three weeks?

Also, did you ever feel excessively thirsty? Like, constant, constant thirst? So much it's almost life-impeding?

And my stomach is being a little crazy right now - like there are dancing men in it. It doesn't hurt though, it's just bouncing around. Is this all just new adjustment? Gas, even?

lbsteenwyk Explorer
lbsteenwyk
Posted
Also, did you ever feel excessively thirsty? Like, constant, constant thirst? So much it's almost life-impeding?

Are you urinating a lot, too? Excessive thirst and frequent urination can be signs of diabetes. Type 1 diabetes is linked to celiac disease. Maybe you should get your blood sugar tested?

lorka150 Collaborator
lorka150
Posted
  • Author

I am, yes, but had my blood sugar tested a week and a half ago. Thanks though!

Rachel--24 Collaborator
Rachel--24
Posted

Have you had your thyroid checked? When my thyroid was overactive from Graves Disease I had lots of energy...huge neverending appetite and lots of thirst. Plus overactive thyroid causes weight loss...even with excess food intake. If you've had that checked then maybe your body is still adjusting since its only been 3 weeks...I wouldn't think you'd continue to lose weight though.

KaitiUSA Enthusiast
KaitiUSA
Posted

Have you changed your products like makeup, nailpolish, shampoo, soaps, lotions, etc to all be gluten free. Could you have been glutened that way?

Also, I know you say you couldn't have been glutened but at first I was thinking that too and there was alot of the hidden gluten that got in. So you are sure you know the hidden gluten sources as well?

Also, as Rachel suggested, being tested for Graves may be a good idea. It is connected with celiac and I also had it.

I had weight loss and it started coming back 3 months after going gluten free so maybe it will come back with time for you as well. Damage done over the years takes a toll and your body is healing and getting rid of that gluten.Have you noticed any weight loss since going gluten free? Or have you stabilized?

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

Celiac.com Sponsor (A8-M):


lorka150 Collaborator
lorka150
Posted
  • Author

I've definitely have lost more since going gluten free. About 10lbs. <_<

melhopkins02 Rookie
melhopkins02
Posted
I've definitely have lost more since going gluten free. About 10lbs. <_<

<{POST_SNAPBACK}>

So have I! i have been gluten-free for about 5-6 weeks now and I have lost 15lbs. Everyone keeps asking me, "is everything ok? You are too skinny" I don't know what else to do....I have even tried eating ice cream (gluten-free of course) as much as possible to gain weight but nothing works. I eat choc a lot too!! I am also 5'6 and about 110lbs...0 size and even that sometimes is too big. I don't know what to do but my parents suggested going to see a nutritionist. They said they should be able to help me figure out how to get more calories in or whatever it is that I need to do. I just am getting tired of seeing people stare at me (my friends and people that knew me before) and them asking me if I'm ok!! No, I'm not ok but No, I don't have an eating disorder is what I have to tell them!!!! Its so frustrating and I completely know what your going through! My suggestion is see someone who can help you with your diet...maybe that will help!

SandraNinTO Rookie
SandraNinTO
Posted

:) Wow. I understand, although I never lost that much weight. I started getting scared when I hit a size 4. When I started learning more about what I could eat that is gluten-free I started gaining and now I'm a 14! Maybe I screwed up my metabolism. Ironically I started gaining weight when I cut out dairy.....and I started eating things with soymilk (Soy Lattes at Starbucks are responsible I think). I had lots of dairy associated diarrhea and once that stopped the pounds started to pack on. Also, I think the discovery of hummos helped me to put on weight. I will need to exercise more to stabilize I think.

Maybe your doctor can refer you to a dietician? That's what mine did when I was at my lowest weight.

I wish the best for you and good health very soon. Hang in there.

hsd1203 Newbie
hsd1203
Posted

This happened to me too... I lost about 15 lbs, a lot for me (before was 130 at 5'4") and freaked out over the fact that I just couldn't seem to gain it back... well, about a year later I am in the mid 120's and have no trouble keeping it on :). Really I just tried to listen to my body and ate really simple foods (none of the really complicated replacement foods) for several months and slowly I stopped losing and adding some back on. So if you think your diet is clear of any gluten and other foods you may be sensitive to, you can definately see a nutritionist (make sure that when you make your appointment you ask if the person is familiar with gluten-free diets or it could be a waste of your time) but my advice would be to be patient, its only been a few weeks, right? As my mom kept reminding me, it took me a while to get this sick, it will take a while to get better.

LisaK1114 Newbie
LisaK1114
Posted

You said that you are running a lot and you like to excersize. I remember when i was not diagnosed yet I used to play soccer. I had lost 30 lbs and I was constantly fatigued and had absolutely no energy to run at all.(and losing more weight). My coach was constantly pulling me out of games and asking why i couldnt run anymore. I was finally diagnosed after the soccer season ended and was happy to see that the next season i was a whole different person on the soccer field, full of energy. (and gained back at least 15 lbs)! so the gluten free diet definitely helped with my energy increase. It sounds like the gluten free diet is not helping anything with your body. It sounds like it could be caused by something else. I am no doctor or anything but maybe you should see a doctor about this. I hope this helped but good luck!!!

~Lisa

lorka150 Collaborator
lorka150
Posted
  • Author

Lisa - other symptoms have improved - just not the weight issue (but it's only been 4 weeks)? I have had the best runs I have had in about 5 months in the last two weeks. I wake up with energy and don't feel like falling asleep after ten minutes of eating. I would think that those are huge signs of improvement!

PreOptMegs Explorer
PreOptMegs
Posted

I know I post this a lot and I sound like a broken record, but I will say it to you too because it is definately pertinent information. You should definately look into the specific carbohydrate diet (breakingtheviciouscycle.com). It is geared for people who want to gain weight. Basically it heals your body so you can absorb nutrients properly again. Please look into it. It is the best thing I have ever done for myself!!!! (PS I am an athlete as well and I have never felt better!!!)

Archived

This topic is now archived and is closed to further replies.

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


  • Member Statistics

    • Total Members
      127,191
    • Most Online (within 30 mins)
      7,748
    Beatle Jane
    Newest Member
    Beatle Jane
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • WednesdayAddams13
      Alpine Brand Spiced Cider

      By WednesdayAddams13 · Posted

      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      Family education

      By trents · Posted

      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Family education

      By Rogol72 · Posted

      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Supplements for those Diagnosed with Celiac Disease

      By peg · Posted

      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Cycle of dermatitis herpetiformis

      By Hopeful1950 · Posted

      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
×
×
  • Create New...