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

Found Out Why Alex Is Still Sick!


cdfiance

Recommended Posts

2kids4me Contributor

Alex is also still recovering from ketoacidosis, that can take while for everything to sort itself out. My son has celiac and diabetes. Once his intestine healed, his blood sugars stabalized.

and yes, fiber is used to treat constipation and diarrhea. Pumpkin is quite good for the intestine if she can handle that. Only a tablespoon or two of pure pumpkin (not the pumpkin pie filling that has suagr and stuff). You can find it in the canned vegetable isle of the grocery store. It can be mixed in muffin recipes too...

Fibre settles the gut down an stabalizes it's rhythmic movements. A gentle source such as metamucil is great if foods are restricted for whatever reason

Sugar water would make me throw up too. The dextrose tablets are pleasant tasting and a small volume, I can close my eyes and just let them dissolve....during alow I cant really do much more than that. The icky part of being low is that you know you need to eat, you're shaky and nauseous...nothing appeals to me at that point... flat gingerale isn't too bad if I dont have dextrose tablets.

**a note, it is common to feel cold after a low, its due to the adrenalin response in the body trying to mobilize glycogen stores............get Alex a blanket, a warm soft one, when she is low, and wrap it around her... at least for me and my son we have both said afterwards , how nice it was...

Sandy - someone who lives with it

*P.S. We get grumpy and beligerant because there is not enough glucose for our brain cells to function properly, I do not understand questions, I can't even tell you what I need other then to keep saying (yelling) "I'm Low"...or worse I dont recognize it, others do and I fight it. I have a friend whose husband gets so combative, it takes two paramedics to hold him down to treat him.

Please forgive us when we get like this, its a medical condition and we are in an emergency situation. We dont mean to argue or be difficult...imagine what it's like for us to come out of it and realize how we acted....... :o:(


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



Celiac.com Sponsor (A8-M):



cdfiance Explorer

Thanks for all the info Sandy. Every time I

2kids4me Contributor

Maybe print off some replies so she knows she is not only normal - she is not alone. If she wants to PM me - please tell her to do so - that way she can have a conversation separate from the forum.

Ryan - you must love her very much - you are seeking help and understanding and you are thinking of her first - you are definitley not self centered.

Did you know it's also normal if you feel angry and resentful sometimes too? Find ways to deal with that too, you are not "bad" if some day in the future, you dont handle a low so well - its part of a new life you will come to be more comnfortable with as time goes on.

Any time a life changing diagnosis arrives in our lives - we go through stages of grief as we say goodbye to "normal" and have to learn all this stuff we really could do without - and that includes the loved ones of the person who is sick.

Take care of yourself too.

Sandy

2kids4me Contributor
As much as I tell her it
cdfiance Explorer
PS - my son made a dartboard out of corkboard, its fun distraction for any needles that hurt or if he is just having a day where he wishes he didnt have to take needles. He made a bullseye and tries to hit it with the needle when he's done. We found out its better if its on the floor and he drops it from above - needles dont make good darts for the walls!

You can also cut out pictures and try and hit the face (Yikes)

I love that idea. I think you've inspired me to make that for Alex's upcoming birthday. I think a picture of wheat on the bullseye would be fun! Some times the needles go well and some times they take a bit of anger and swearing to get through. Getting to throw the needle at something after would be very therapeutic for her I think.

Thanks again for all the great info. We have been finding her blood sugar does dip in the middle of the night and she usually wakes up with a nightsweat. We will definitely be vigilant about possible highs the next morning due to that.

Ryan

  • 4 weeks later...
smowheet Newbie
Glad to hear you found out what was going on. What a lucky way things worked out. Hope she feels better soon.

She is lucky to have someone so supportive. At such a young age you both have a lot ot deal with. Good luck

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,339
    • Most Online (within 30 mins)
      7,748

    Teresa King
    Newest Member
    Teresa King
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.