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

13 Year Old Sick All The Time :(


audrey d

Recommended Posts

audrey d Newbie

Hi just found you guy's!!!!!!!! I am a single mom my daughter has celiac and type1 diabetes ;( she is sick all the time, I feel like we live at urgrnt care, her doctor just basiclly tells us to deal with it, her diabetes doc is more helpfull but can only see him 3 times a year, living in colorado so blessed to have the barbra davis center for diabetes but they are booked months in advance, my kiddo is hardly ever at school so the school is making it really difficult for me, i feel like we go to urgent care at least 3 times a week just for doctors notes, my income is limited so i can't even aford the fancy gluten free foods ;( I would love any advise on what we can do to get her feeling better we do strict gluten free also have to do sugar free for diabetes, and doctot has her drinking Miralax like crazy, which i am so afraid that this is bad for her,even though she has been gluten free for at least 3 months all the xrays still show that her colon is still not cleared completely please any help would be so gratefull, so tired and sad about this and it's hard when you don't have backup, it's just me and my kiddo, Thank you


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

You don't need to buy all the gluten free (easy to use) items.

Put her on a whole foods diet (meat veggies fruit grain) stay away from processed foods for a while.

Those gluten free goodies are just that, goodies. They do not need to be eaten on a daily basis. You can also learn how to make them yourself.

To avoid cross contamination it is best to replace things that are scratched, that are wooden, that are plastic (colender), and to have a seperate toaster.

Have you checked if her toothpaste is gluten free? What about chapstick? Makeup?

Will she eat prunes or drink the juice? What about a digestive enzyme pill, those help.

Has she been strict? I'm not trying to imply anything but sometimes with children, especially those just starting out, it is very hard on them and sometimes they cheat.

What about the school? Do you have a 504 plan for her? If not, get one. It will help with the absences and whatnot. Since celiac falls under the ADA act (americans with disabilities act) they have to accomodate.

mommida Enthusiast

I think your state will have "homebound" student exemptions too. It is not easy, but all her work is sent to your home with a teacher visit once a week.

Some states are starting more on-line options for PUBLIC school as well as private school options. Connections Academy (make sure you are in the public school option) and K 12 are two cyber schools that I know of. Sometimes public school environments are not for every student with medical conditions, even if there are 504 plans in action.

Some other areas of cross=contamination...

pet foods

cross contaminated baking ingredients (flour dust clouds can contaminate other ingredients)

dilettantesteph Collaborator

In my area you can get fresh produce really cheap at the farmer's markets. I don't know how those guys make a living. It might help for you to keep a gluten free household. Other members of the family can still eat gluten outside the house, but it will cut down on cross contamination possibilities in the house. That helped us.

Chiana Apprentice

Exercise is really good for helping to manage blood sugar. Would she be open to joining an athletic or exercise group? I know the local colleges/community centers around here offer drop-in yoga, pilates, etc. at free or cheap to the public. She could go when she is having a good day, and she could see if it helps her.

Also, laxatives increase the transit time of food in your body, decreasing absoption. Clearing up that end of things will probably cause her to feel a lot better.

my3monkees Rookie

Another thought, shared items like butter, peanut butter, mayonaise etc.. My dd kept getting sick and I realized we had all gotten lax, about keeping her items seperate. Although everyone was careful, enough cc was getting into these types of items to cause problems.

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 mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

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

    • Total Members
      132,993
    • Most Online (within 30 mins)
      7,748

    Tchudi
    Newest Member
    Tchudi
    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

    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
×
×
  • 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.