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

been 6 days since my daughter had her biopsies done

tarab87

By tarab87
in Related Issues & Disorders

Recommended Posts

tarab87 Rookie
tarab87
Posted

hi all it's been 6 days since my 7 year old daughter had her biopsies done. the wait for results is the hardest part the "not knowing" 

they said it would be no more then 10 days for the results. 

what should I expect from here? 

her blood test so far showed TTG at 91 and EMA positive 

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

Celiac.com Sponsor (A8-M):


KathleenH Enthusiast
KathleenH
Posted

I'm no expert and I was only recently diagnosed but heres what I would think... I feel like if her blood work came back indicating celiacs and they cared enough to do an endoscopy than chances are are her biposies will show celiacs. Also if it doesnt maybe she's gluten intolerant? But like I said I'm no doctor lol. What helped me in the meantime of waiting for my results was looking up new recipes to make and going to the supermarket to look at gluten free alternatives. I did this to find stuff I like to substitute as my old favorites just incase they came back positive. Hope she starts feeling better! 

tessa25 Rising Star
tessa25
Posted

When I had a TTG greater than 100 and a positive EMA  my doctor said "you have celiac. I'm going to do an endoscopy, but you have celiac". LOL This was based on > 10 being considered high.

That means no more wheat, rye, or barley ever again. Someone more experienced and more well spoken than me will be by here in a bit I'm sure, but here's my quick list of yummy gluten-free equivalents so she won't feel different other than eating her own versions of things.

 

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread: Canyon bakehouse without question is the most realistic tasting bread.
Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
Canyon bakehouse white bread makes fantastic toast. It has a very slight sweet taste to it. My friend says it tastes like normal bread. The only difference to me is the sweetness.
Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need to be toasted.
Schar baguettes are fantastic.
Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
Etalia has a good boule (sp?) if you prefer artisan bread.

Pizza crust:
Shar makes a good thick and chewy crust.
Udis makes a good thin and crispy crust.
Etalia makes a great New York crust.

Pasta:
Barilla makes the only good pasta that I know of. Spaghetti cooks the best.
RP has a frozen pasta that I'm going to try next.

Flour:
Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
Envirokidz Gorilla Munch cereal is an equivalent to corn Pops.

Cookies:
Glutino and Kinnikinnik make a decent Oreo equivalent.
Mi Del makes a great ginger snap.
Goodie Girl mint slims - great girl scout mint cookie equivalent

Cake:
Betty Crocker chocolate cake tastes the same, but you have to get the time exactly right. It is a very small window of time. Too long and it's too dry.

 

 

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

I just want to add to Tessa's comment about the freezer.  I have a big upright freezer in the garage.  It is a lifesaver!  Besides, the usual frozen meat, etc.  I have some gluten-free prepared meals on hand that I made for those busy days when I can not cook.  I also have a variety of cupcakes, cookies, etc. to grab when we are attending parties.  I buy the CanyonHouse bread in bulk (get a discount) from my local Sprouts (cheaper version of Whole Foods).  It comes frozen and I store in my freezer.  I also cook beans in bulk and divide and freeze.  I have been making lots of beans in anticipation of summer (no sense heating up the house  with a simmering pot of beans).  

It is hard to wait!  Be sure to follow-up.  My GI forgot to let me know right away (he was very apologetic), but I had already gone gluten-free (hubby had been gluten-free for 12 years, so it was an easy switch).  Even if negative (damage patches can be missed), I would talk to her GI about trialing  the diet.  

tarab87 Rookie
tarab87
Posted
  • Author

thank you all for the replies and advise it's greatly appreciated I will be taking it all on board. 

I really do love this site, reading people's stories and advice there wen needed. 

Thank you 

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @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...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      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...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.