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

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

  • 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
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    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
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.