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

Need Assistance For My Daughter

karenmahoney

Recommended Posts

karenmahoney Newbie
karenmahoney
Posted

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
scorpionco
Posted

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
lorka150
Posted

does she take any vitamins?

karenmahoney Newbie
karenmahoney
Posted
  • Author
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
lorka150
Posted

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

Daxin Explorer
Daxin
Posted

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
karenmahoney
Posted
  • Author

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
eKatherine
Posted

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
lorka150
Posted

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
CarlaB
Posted

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
Daxin
Posted

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
jerseyangel
Posted

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
karenmahoney
Posted
  • Author
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
jerseyangel
Posted

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
karenmahoney
Posted
  • Author
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
CarlaB
Posted
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
Green12
Posted
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.

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.