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

Recommended Posts

lorka150 Collaborator

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
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

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
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

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

Rachel--24 Collaborator

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

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

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

melhopkins02 Rookie
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

:) 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

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

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

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

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.

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.