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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,394
    • Most Online (within 30 mins)
      7,748

    Graceland.h
    Newest Member
    Graceland.h
    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

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.