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

Need Assistance For My Daughter


karenmahoney

Recommended Posts

karenmahoney Newbie

Hi, My 17 year old daughter was just diagnosed with celiac disease and hypoglycemia. She is also a vegetarian and I could use some help in sorting out some of the essential do's and don'ts, but primarily, I am wondering if anyone knows how long it will take to make her feel better. She has been so fatigued for such a long time, has no energy, a lot of weakness, muscle and bone pain and bloating and pain in her right side of the abdoman. She also has suffered with diarrhea and kindof greasy stools...she can deal with most of this right now, but the extreme fatigue has me concerned...she sleeps so much and is finding it hard to work at her job. I'd appreciate any advice or help, thanks so much.

Karen


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



Celiac.com Sponsor (A8-M):



scorpionco Newbie

As far as the recovery goes, I started to feel some improvement after 2-3 weeks on the diet, but I didn't really feel back to 100% until after 3 months or so. It varies quite a bit person-to-person how long the recovery period takes, the only thing I will tell you is to MAKE SURE SHE STAYS ON THE DIET, now matter how she may feel initially. Stick with it, be really careful about being completely gluten free, and be patient.

Good luck!

Chris

lorka150 Collaborator

does she take any vitamins?

karenmahoney Newbie
As far as the recovery goes, I started to feel some improvement after 2-3 weeks on the diet, but I didn't really feel back to 100% until after 3 months or so. It varies quite a bit person-to-person how long the recovery period takes, the only thing I will tell you is to MAKE SURE SHE STAYS ON THE DIET, now matter how she may feel initially. Stick with it, be really careful about being completely gluten free, and be patient.

Good luck!

Chris

THank you, that gives me a bit of a ballpark idea. It has been such an adjustment already, especially with reading all the labels. For example, she drinks silk soymilk and it is fine, but the little boxes of the same thing are not fine--they have gluten in them, go figure! things like that are making me take a long time at the grocery store!

does she take any vitamins?

yes, she takes a multi vitamin with calcium and iron, b-100's and acidophilis

lorka150 Collaborator

try getting in a calcium and vitamin d - i would highly recommend it. i noticed a difference once i started that.

Daxin Explorer

I'm 6 weeks into receovery, and you can tell her it gets better every day. I have "glutened" myself by accident twice, but it's not the end of the world.

I am glad you are doing your research though. Support from family and friends can be very important in teh beginning.

It's not the end of theo wold, and IMHO, a vegitarian would have an easier time with celiac because they already eat a lot of whole foods and legumes etc, so there should already be a low risk of cross contamination.

It does get easier with time. And tell her, like my dw has to tell me from time to time that she's not alone!

karenmahoney Newbie

Thank you so much. She accidently glutened herself today. She works at Subway and was starving and didn't bring enough protein with her (because she is also hypoglycemic) so she ate one of their veggie patties. She coulnd't find the ingredient listing but ate one because the ones we have at home are safe...believe it or not, I found the ingredient listing online and sure enough, wheat gluten was about half way down. I have her drinking a ton of water right now--I hope she will be okay. SHe gets home tonight around 9, so hoepfully she won't have too much trouble.

okay, I will pick some of that up as well--thank you!


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



Celiac.com Sponsor (A8-M):



eKatherine Apprentice

Do you desperately need the cash she's getting from that job? I think she should stay home, regain her strength, and learn how to live gluten free this summer, not burn herself out over some job that pays almost nothing.

lorka150 Collaborator

I agree with eKatherine. When I got really ill, I quit my job at a market/bakery because I was ingesting like crazy. I kept getting 'sicker' and quit all jobs, and found one online where I make my own hours. It really has helped, in that sense.

CarlaB Enthusiast

I, too, would recommend her getting lots of rest to get better more quickly in time for school in the fall. I also would NEVER work at Subway ... not because of the temptation to eat the gluten, but because of the high chance of cross-contamination.

Daxin Explorer

I would have to agree. The recovery can be tough, and working at subway can make that even tougher.

There is a thread here about how we all hate pizza hut and subway just because of their commercials. I can't imagine working there after being told I had celiac disease.

Not trying to rant. Sorry. I hope she feels better soon, and unless she really needs the money, I would also recommend taking the time to heal and maybe find a different place to work a little later.

jerseyangel Proficient

Under the circumstances, I agree. If it is necessary for her to work this summer, why not a retail job where there is no food involved at all.

karenmahoney Newbie
I would have to agree. The recovery can be tough, and working at subway can make that even tougher.

There is a thread here about how we all hate pizza hut and subway just because of their commercials. I can't imagine working there after being told I had celiac disease.

Not trying to rant. Sorry. I hope she feels better soon, and unless she really needs the money, I would also recommend taking the time to heal and maybe find a different place to work a little later.

Thank you everyone for your suggestions about her quitting her job at Subway. She is working to save money for college, pay for her car, insurance, etc--but I agree that this is probably not the best place for her to work at all. We are going to talk to her about finding another job so she doesn't get sicker. For now, I am having her bring food and make her salads from fresh ingredients in the back. The veggie patty was my fault--I assumed she could eat it...I feel like I poisoned my own daughter, I really feel bad. We are trying to let her sleep as much as she needs when she is not at work--at least she is only part time, so she can get rested during her off hours. I think she will be better off in retail rather than in food service though!

jerseyangel Proficient

Karen--Don't feel guilty about the glutening. It happens to all of us in the beginning--it will pass, and she will be fine. Do you have a mall in your town? The one here has openings all the time in the various stores. You could even call around, to save time and gas--it's just that it will be easier for her to stay safe (gluten-wise) not surrounded by bread and rolls all the time. I definately understand the need for a teen to work--mine both started at 16.

karenmahoney Newbie
Karen--Don't feel guilty about the glutening. It happens to all of us in the beginning--it will pass, and she will be fine. Do you have a mall in your town? The one here has openings all the time in the various stores. You could even call around, to save time and gas--it's just that it will be easier for her to stay safe (gluten-wise) not surrounded by bread and rolls all the time. I definately understand the need for a teen to work--mine both started at 16.

Thank you Patti, You made me feel better about unintentionally giving her gluten...I called her at work and she has been doing okay...I told her to drink a ton of water. we do have a mall about 20 minutes from here, I am going to have her call tomorrow. thanks for the idea

CarlaB Enthusiast
Thank you Patti, You made me feel better about unintentionally giving her gluten...I called her at work and she has been doing okay...I told her to drink a ton of water. we do have a mall about 20 minutes from here, I am going to have her call tomorrow. thanks for the idea

Yes, don't feel guilty ... mistakes will happen, just be sure to learn something from each one! I just made one myself last week! <_< Water is good, also watch the blood sugar ... the only time I have a problem with mine is when I get glutened.

Green12 Enthusiast
Hi, My 17 year old daughter was just diagnosed with celiac disease and hypoglycemia. She is also a vegetarian and I could use some help in sorting out some of the essential do's and don'ts, but primarily, I am wondering if anyone knows how long it will take to make her feel better. She has been so fatigued for such a long time, has no energy, a lot of weakness, muscle and bone pain and bloating and pain in her right side of the abdoman. She also has suffered with diarrhea and kindof greasy stools...she can deal with most of this right now, but the extreme fatigue has me concerned...she sleeps so much and is finding it hard to work at her job. I'd appreciate any advice or help, thanks so much.

Karen

Hi Karen,

I agree what the other posters suggested. I just wanted to add that when your daughter does get to feeling a little better it might be a good idea for her to connect with other's her own age (or even just celiacs of all ages) that are living a gluten-free lifestyle to get information and support. There is a teenager category here on the board for starters. It's definitely challenging when all of this is so new to figure out hat to do and what not to do, and to be so sick on top of that, it's nice to have a resource to reach out to.

I hope your daughter is doing better :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,136
    • Most Online (within 30 mins)
      7,748

    ZiseChocolate
    Newest Member
    ZiseChocolate
    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

    • Jenny (AZ via TX)
    • Bev in Milw
      Reading labels at dailymed.com is simpler if you’re familiar w/ gluten-free list of inert ingredients (aka ‘excipients’  allowed by FDA.      www.gluten-free.com has that list & I’ve included It’s below…. Tricky ones for me are the “4 D’s“ because names are similar. These 2 are gluten-free by ‘legal’ definition— •Dextrans - Partially hydrolyzed corn or potato starch. •Dextrose - Powdered corn starch. Other 2 need to be questioned. (Maybe ok for isolated 7-10 day Rx,   antibiotic?,  but gluten-free status needs to be verified for long term / daily use for chronic condition, like thyroid or BP meds.)   These are : •Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. •Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca.  (Maltodextrin on US labels MUST be corn so gluten-free.) Technically, ‘Starch’ on USDA ‘food’ labels in US must be from corn, & if not, the source must be identified.   In drugs,‘ Pregelatinized starch’ & ‘Sodium starch glycolate’ can also be from potato, rice, OR wheat.  Wheat is more likely to be found in products made outside of US (Europe) where corn is not the major(readily available & least costly) crop.     Hope this helps even though  learning sources of some gluten-free ones may make them less appealing. (And while the “Read every label, every time” for gluten is a pain, I’ve learned there are worse things than celiac dx—Allergy to corn would be at top on my list!)          Bev in Milwaukee From www.gluten-free.com EXCIPIENT INGREDIENTS IN MEDICATIONS  Aspartame - An artificial sweetening agent derived from aspartic acid. Aspartic Acid - A crystalline amino acid found naturally in sugar beets and sugar cane.  Benzyl alcohol - Made synthetically from benzyl chloride which is derived from toluene (a tar oil). Cellulose - (ethylcellulose, methylcellulose, hydroxymethylcellulose, hydroxypropyl, microcrystalline) – Obtained from fibrous plant material (woody pulp or chemical cotton). Cetyl alcohol - Derived from a fat source (spermaceti, which is a waxy substance from the head of the sperm whale). Croscarmellose sodium - An internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations.  Comes from wood pulp or cotton fibers to form carboxymethylcellulose.  It contains no sugar or starch. Dextrans - Partially hydrolyzed corn or potato starch. Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca. Dextrose - Powdered corn starch. Fructose - Obtained naturally from fruits or honey; hydrolyzed cane or beet sugar. Gelatin - Obtained from the skin, white connective and bones of animals (by boiling skin, tendons, ligaments, bones, etc with water). Glycerin - Historically, glycerin (also known as glycerol), was made the following ways: -  Saponification (a type of chemical process) of fats and oils in the manufacturing of soaps -  Hydrolysis of fats and oils through pressure and superheated steam -  Fermentation of beet sugar molasses in the presence of large amounts of sodium sulfite   Today its is made mostly from propylene (a petroleum product) Glycerols - Obtained from fats and oils as byproducts in the manufacture of soaps and fatty acids (may also be listed as mono-glycerides or di-glycerides). Glycols - Products of ethylene oxide gas. Hypromellose – A brand of hydroxypropyl methylcellulose (see cellulose). Iron oxide (rust) - Used as a coloring agent. Kaolin - A clay-like substance. Lactilol - Lactose derivative; a sugar alcohol. Lactose - Also known as milk sugar, is used in the pharmaceutical industry as a filler or binder for the manufacture of coated pills and tablets.   Commercially produced from cow's milk. Maltodextrins - A starch hydrolysate that is obtained from corn in the United States but can also be extracted from wheat, potato or rice. Mannitol - Derived from monosaccharides (glucose or mannose). Methyl Paraben – Comes from the combination of denatured wood alcohol and benzoic acid (benzoic acid occurs naturally in cherry bark, raspberries, tea, anise and cassia bark).  Polysorbates - Chemically altered sorbitol (a sugar alcohol). Polyvinyl alcohol – A water soluble synthetic alcohol (synthesized by hydrolysis of polyvinyl acetate). Povidone (crospovidone, copovidone) - synthetic polymers  Pregelatinized starch - A starch that has been chemically or mechanically processed.  The starch can come from corn, wheat, potato or tapioca. Shellac - A natural wax product used in tablet or capsule coating. Sodium lauryl sulfate – A derivative of the fatty acids of coconut oil. Sodium starch glycolate - Sodium salt of carboxymethyl ether of starch. Usually from potato but can be from corn, wheat or rice. Stearates (calcium, magnesium) - Derived from stearic acid (a fat; occurs as a glyceride in tallow and other animal fats and oils, as well as some vegetables; prepared synthetically by hydrogenation of cottonseed and other vegetable oils). Sucrose - Sugar also known as refined sugar, beet sugar or cane sugar. Titanium dioxide - Chemical not derived from any starch source used as a white pigment.  Triacetin – A derivative of glycerin (acetylation of glycerol). Silcon dioxide – A dispersing agent made from silicon.  
    • NoriTori
      @Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.  
    • trents
      Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
    • Heatherisle
      I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!!
×
×
  • Create New...