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

A Little On The Frivilous Side...

saintmaybe

By saintmaybe
in Coping with Celiac Disease

Recommended Posts

saintmaybe Collaborator
saintmaybe
Posted

I'm still on the newly diagnosed end of things with celiac, and therefore not very well controlled yet. I lost a massive amount of weight in the last 5 months (40 lbs!),and still suffering from moderate hair loss as well.

I'm definitely doing the strict gluten free diet as much as I'm aware of, and learning more every day. But I find that there are other ways I cope that help me feel like not such a "sickie!" I bought new pairs of jeans in my new size, since I'm hoping my weight has stabilized. Ditto new bras, tee-shirts, underwear, etc. It really helped my body image not to be wearing my old clothes all the time.

I also got some hair accessories that work with my very thin hair, so I don't look as scraggly, and I have a leave in conditioner (gluten free, that makes it less likely that the hair left will break since it's so fragile.)

I also take the time now to get lots of sleep, read novels, drink tons of water, and use a jojoba oil moisturizer. Celiac disease has oddly forced me to be really nice to myself- and it's kind of...nice! =)

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm pretty new to this gluten-free thing. I was diagnosed at the beginning of July of this year. I've lost 20 lbs. but didn't need to lose it, so I'm looking pretty thin right now.

I may not have a choice about buying new jeans and a few other pieces of clothes because my old ones don't fit? :o

I'm so happy for you having your head in such a positive, nurturing place. I'm just not there yet. Hopefully I'll stabilize soon?

Jenniferxgfx Contributor
Jenniferxgfx
Posted

It was so nice to get a couple pairs of jeans in a size that fit! It's done wonders for my self esteem to have jeans that make my butt look good ;)

I Also picked up some cute tshirts, and I haven't had cute shirts that fit well in a long time.

I think it's good for us to be so nice to ourselves. Our wheat-based culture isn't real loving towards us.

Go you :)

notme Experienced
notme
Posted

that is a great idea :) i wish this economy would shake loose. i forget how to shop.....

Marilyn R Community Regular
Marilyn R
Posted

Good for you for treating yourself! I thought you were going to talk about beef tenderloin or lobster! LOL, I've become pretty food focused even thought I wasn't before I had to cut out the gluten.

If your hair is still falling out, ask your physician to order a Vitamin D blood test. You might not even have to go for an office visit, if you ask really nicely on the phone. Most doctors will readily check Vitamin D if there's been malabsorbtion issues.

And P.S., I'm loving my size 6's. I've ranged from size 10 to practically busting out of size 14. Six is good. And I'm 6' tall.

Good for you.

Katrala Contributor
Katrala
Posted

I also had excessive weight loss (70 pounds) and hair loss. I stopped using a conditioner for awhile and it helped with my hair not looking so thin and "sickly." I have thin / fine hair to begin with, though.

Don't be afraid of finding new clothes wherever you can. While my weight was plummeting I would look everwhere, not wanting to spend too much on new clothes. Thrift stores, clearance sales, etc. I had to totally give up any type of attitude that I would only wear a certain type of clothes. (I went from a size 14/16 to a size 4/6 and now own all sizes in between.)

saintmaybe Collaborator
saintmaybe
Posted
  • Author

I also had excessive weight loss (70 pounds) and hair loss. I stopped using a conditioner for awhile and it helped with my hair not looking so thin and "sickly." I have thin / fine hair to begin with, though.

Don't be afraid of finding new clothes wherever you can. While my weight was plummeting I would look everwhere, not wanting to spend too much on new clothes. Thrift stores, clearance sales, etc. I had to totally give up any type of attitude that I would only wear a certain type of clothes. (I went from a size 14/16 to a size 4/6 and now own all sizes in between.)

Oh yeah, I went from a straight 10, to a 4/6. I'm scared yet to get rd of too many clothes, because what if I gain back some of that weight. Though honestly, I don't know how I'd do it. I'm living up to my nickname and eating like a Rissy-bird. :lol:

I never pay full price for clothes- outlet stores only, clearance racks only, or thrift or good will. I AM poor, but I'm also a retail worker. I know how much the markup is!

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

Celiac.com Sponsor (A8-M):


Marilyn R Community Regular
Marilyn R
Posted

Piping in again...thrift/charity stores are a great place to shop when you're changing sizes. Some of the coolest things in my wardrobe were bought for $3-$5 at a thrift shop. (Goodwill, churches, etc.)

saintmaybe Collaborator
saintmaybe
Posted
  • Author

Good for you for treating yourself! I thought you were going to talk about beef tenderloin or lobster! LOL, I've become pretty food focused even thought I wasn't before I had to cut out the gluten.

If your hair is still falling out, ask your physician to order a Vitamin D blood test. You might not even have to go for an office visit, if you ask really nicely on the phone. Most doctors will readily check Vitamin D if there's been malabsorbtion issues.

And P.S., I'm loving my size 6's. I've ranged from size 10 to practically busting out of size 14. Six is good. And I'm 6' tall.

Good for you.

My vitamin D is in the toilet, but I'm drinking like two boosts a day to make up the difference. It IS helping. My bruises are less "OMG, CAN I CALL YOU A HELPLINE?" and more "Geez, why you such a clutz girl?"

As for beef tenderloin, I wish! I don't have that kind of money, but my stomach rebels, absolutely rebels, at rich food right now. I tried to eat gluten free ribs the other night, and that WAS JUST NOT HAPPENING. Alas, I'll just enjoy semi normal digestion, and hope for more carnivorous days in the future.

saintmaybe Collaborator
saintmaybe
Posted
  • Author

It was so nice to get a couple pairs of jeans in a size that fit! It's done wonders for my self esteem to have jeans that make my butt look good ;)

I Also picked up some cute tshirts, and I haven't had cute shirts that fit well in a long time.

I think it's good for us to be so nice to ourselves. Our wheat-based culture isn't real loving towards us.

Go you :)

I will not deny that my main concern was making my booty look awesome! I was starting to look like a boyish underwear model with my flat butt and oversized jeans. There's a place for that fashion statement/androgyny, but it's not one I want to be making all the time. Especially when I used to be known for my fantastic...assets.

And yeah, I'm finding a lot of people simply persist in thinking I'm on a radical diet/am crazy/have an eating disorder. Whatever. They're not in my skin, and God bless 'em, they don't have to spend hours a day in the bathroom. I HOPE they never have to understand, cause I wouldn't wish it on anyone. :(

saintmaybe Collaborator
saintmaybe
Posted
  • Author

I'm pretty new to this gluten-free thing. I was diagnosed at the beginning of July of this year. I've lost 20 lbs. but didn't need to lose it, so I'm looking pretty thin right now.

I may not have a choice about buying new jeans and a few other pieces of clothes because my old ones don't fit? :o

I'm so happy for you having your head in such a positive, nurturing place. I'm just not there yet. Hopefully I'll stabilize soon?

I have really, really dark moments, too. Like, what if I didn't catch it in time? What if I just...keep losing weight? What if I get cancer? What if, if, if. But these if's do me no good. They're all hypotheticals. I might die young from celiac complications, I might get hit by a bus tomorrow, I might live until I'm 90.

I finally realized I need to take each day as something to enjoy, and let tomorrow, for what it's worth, take care of itself. I hope you stabilize soon as well! Here's hoping, bb.

anabananakins Explorer
anabananakins
Posted

My vitamin D is in the toilet, but I'm drinking like two boosts a day to make up the difference. It IS helping. My bruises are less "OMG, CAN I CALL YOU A HELPLINE?" and more "Geez, why you such a clutz girl?"

I'm sorry, I shouldn't laugh but this really cracked me up :-) Low vit D sucks (my doctor "you feel half dead because you are half dead!"), I hope you can get yours up even more soon.

annegirl Explorer
annegirl
Posted

You're right! Finding ways to pamper yourself really make a difference. I've lost 53 pounds since Feb and went from a size 18/16 to a size 8 - I just went and bought a whole new closet full of clothes (never done that before!!). It was so nice to try something on and have my sister say it was too big, get a smaller size. :D

My most favorite pamper is a ribeye with a baked sweet potato. :) Life ain't all bad when you can have steak.

julandjo Explorer
julandjo
Posted

You're right! Finding ways to pamper yourself really make a difference. I've lost 53 pounds since Feb and went from a size 18/16 to a size 8 - I just went and bought a whole new closet full of clothes (never done that before!!). It was so nice to try something on and have my sister say it was too big, get a smaller size. :D

My most favorite pamper is a ribeye with a baked sweet potato. :) Life ain't all bad when you can have steak.

Heck yes to your ribeye and sweet potato - that's my ultimate treat meal too! :)

Careful with the clothing budget though - I've been gluten free for 18 months. I too used to be a 16/18. I lost a quick 40 pounds in 5 months, then over the next year it slowly went down another 15 pounds. I'd been stabilized, or so I thought, at a size 8 for almost 3 months, and suddenly I just dropped another 5 pounds. At my current weight, 5 pounds is almost another clothing size. Luckily I've just been buying clearance stuff as I need it (I work from home so having only 2-3 outfits is okay), because I have no idea where I will stabilize. You too may be surprised to find your body's not done! :)

Terri O Rookie
Terri O
Posted

What I'd like to know is why are you all losing weight and I am GAINING? I have never had a weight problem in my life (I'm 49) and lately I am seeing the scale creep up and up! It is just a little scary. :o Terri O

annegirl Explorer
annegirl
Posted

Heck yes to your ribeye and sweet potato - that's my ultimate treat meal too! :)

Careful with the clothing budget though - I've been gluten free for 18 months. I too used to be a 16/18. I lost a quick 40 pounds in 5 months, then over the next year it slowly went down another 15 pounds. I'd been stabilized, or so I thought, at a size 8 for almost 3 months, and suddenly I just dropped another 5 pounds. At my current weight, 5 pounds is almost another clothing size. Luckily I've just been buying clearance stuff as I need it (I work from home so having only 2-3 outfits is okay), because I have no idea where I will stabilize. You too may be surprised to find your body's not done! :)

>sigh< I'm discovering that. :P I bought the clothes, got glutened and lost 5 pounds, and now I'm traveling for 2 full weeks and with the food options available I'm gonna lose more. I'm at a government facility and had made arrangements for food, but when they asked if I could have plain white flour with a "wheat" allergy (they didn't know what gluten was) I decided to buy some packs of tuna and am gonna rock the tuna and salad with my own dressing for 2 weeks. My poor clothes. :P

What I'd like to know is why are you all losing weight and I am GAINING? I have never had a weight problem in my life (I'm 49) and lately I am seeing the scale creep up and up! It is just a little scary. :o Terri O

As far as gaining goes...are you eating many of the gluten free processed foods and replacements? Those usually have less nutrition and more calories than their gluteny counterparts. I have so many allergies/intolerances that I just have to eat whole foods. That might help!

Jenniferxgfx Contributor
Jenniferxgfx
Posted

What I'd like to know is why are you all losing weight and I am GAINING? I have never had a weight problem in my life (I'm 49) and lately I am seeing the scale creep up and up! It is just a little scary. :o Terri O

It could be gluten-free processed foods, or it could be that you were a little underweight for your own personal body's setpoint, and this is your "normal."

Our culture has a really skewed view on weight, and BMI is bunk anyway. As long as your numbers are good (BP, cholesterol, triglycerides, and A1c to start), I wouldnt stress too much.

Archived

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

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


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.