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

Just Diagnosed Last Week, Need Help With All Of This!


gottaBGfree

Recommended Posts

gottaBGfree Newbie

I was just diagnosed with celiac disease last week during my very first (an 8 day) stay in the hospital. I had never even heard of celiac until after my endoscopy confirmed that I have it and Barrett's esophagus. I am so malnourished, even after a transfusion, many IV's potassium, calcium and all the other things that were supposed to pep me up in the hospital. I still feel tired and run down! Now I'm on more vitamins and medications than my Grandmother is! I am concerned that I am taking so many things that cause can constipation that I may not be able to tell if I have eaten something unsafe. I am also having the wierdest feeling in my head. I'm often dizzy, having headaches and just can't concentrate/seem to get my brain to work at times.

How concerned do I need to be with cross contamination? Do I really need to get rid of the pots and pans that are in my kitchen?? Please anyone give me some words of wisdom on how to begin to tackle all of this!


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

How are you feeling now? You must have been really sick as now a days they don't put you in hospital and keep you there unless you're near death.

As to pots and pans, mostly any pot or pan that has a smooth surface that steel wool can clean, can be cleaned thoroughly enough to use for gluten-free cooking. The problemic surfaces are: cast iron, especially when "seasoned", silverstone finish, non stick finish, etc. as gluten can hide as residue.

Toasters have to be replaced (or have a new toaster for gluten-free and toaster for all others in household

I have a feeling that those new rubbery bakeware might be problemic too.

Wooden spoons , spatulas, colanders and all cutting boards are now suspicious as places where gluten can lurk. It would be best to replace these items and label the new ones as gluten free only. This is necessary if you share your living space with a "gluten" person; if you live alone you can just throw the "bad" stuff away and not worry about cross contamination from a "gluten" person.

kabowman Explorer

I know this is all so overwhelming but it gets much better, really. Especially since you will start to heal and get better.

As to cc, I didn't think much about it until after I made me something to eat on a counter that I didn't clean and ended up with a bread crumb, yes a crumb, and was sick for days. OK, reality check, need to clean.

I also didn't replace my non-stick pans until after one almost ruined camping vacation where I spent every night after dinner in the port-a-potty in the middle of the night and living on imodium during the day after breakfast. I did get my own cast iron skilliet right away though.

However, I am not offically dx with celiac disease, I didn't go in for testing until way after and refused to go back on gluten for the test.

I now use separate pots and pans, separate sponges for cleaning the non-dishwasher safe stuff, etc.

I get a fuzzy head feeling when I eat yeast and I know some people get that with gluten. There are so many different symptoms that just about anything you can think of could be a symptom of celiac disease or glutening.

I threw out all the flour products in the house, anything that might be suspect, old spices, etc. and it felt great. I kept stuff for the kids and dh like pizza, mac & cheese, etc. but anything that could produce stuff that I could potentially inhale and get sick from, gone!

ravenwoodglass Mentor

You want to be very gentle with your system right now. It is going to take a while for you to heal but hopefully you will start feeling a diffeence soon. If you have not dropped dairy from your diet please do so for at least a couple of months. As sick as you were you most likely are not able to digest it either.

For now stick with pure naturally gluten free foods, don't go out and get a bunch of gluten free specialty items until you have healed a bit. Go with natually gluten free foods for now. Meats, chicken, fish, fruits and veggies, nuts, beans etc. Whatever your system will tolerate. As sick as you have been I would start out by throughly cooking your veggies and even your fruits. This will help to make them easier to digest at first. Stay away from things like lettuce and raw veggies until you heal a bit more.

If you are still not holding much in a short course of a modified brat diet,

Bananas,

Rice (plain, cooked in gluten-free broth is okay but stay away from sauces),

Applesauce, (either homemade or nothing added). A half a teasoon of cinnamon added to the applesauce will help your digestion and blood sugar and tastes good.

As your tummy calms down add in chicken and then the aforementioned naturally gluten-free foods.

Make absolutely sure all your meds and vitamins are gluten free, check them even if your doctor gave them to you. And if you are not taking a gluten-free sublingual B12 you may want to add one in, unless your doctor is giving you B12 injections.

I hope you start to get some relief soon, ask any questions you need to.

Archived

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

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • 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/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.