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 Starting This Journey

MusicMama

By MusicMama
in Coping with Celiac Disease

Recommended Posts

MusicMama Newbie
MusicMama
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

what about juicing/blending fruits & veggies that provide nutrients- and putting it into juice form could be easier to digest- maybe blend a 1/2 mango with that banana... or spinach & pineapple... enough to get healthy- but not enough to aggravate "D"...

or totally mash up cooked broccoli & peas- mix it with the rice ?

also a big tbsp of L-Glutamine powder mixed with water at night is supposed to help heal the intestines.

shopgirl Contributor
shopgirl
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

Kimbalou Enthusiast
Kimbalou
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

I don't understand the need to stay on gluten before a biopsy. I had a strongly positive blood test and I don't even think I will do the biopsy. It seems like an unnecessary risk to take when I already know the blood work is positive and I have the symptoms. And if it takes 6 months-1 year to heal, I don't think the biopsy would be negative if you go off gluten for a week or so.

Kimbalou Enthusiast
Kimbalou
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

Did she have a blood test for it? i was just diagnosed on Friday after a positive blood test. My 16 yo daughter has had signs of this disease. I am going to get her tested but she is freaked out by needles and shots. This is not going to be fun. My sympathies to you! :) This age is hard!

cyberprof Enthusiast
cyberprof
Posted

You took her off gluten before her blood test and biopsy or am I just reading that wrong? She needs to stay on gluten until she's tested or you're risking a false negative.

Well, yes and no.

The 30th isn't that far away. If she has villi destruction, it is unlikely it would heal in less than two weeks. And if the kid can't eat without extreme pain, it may be hard to convince her to eat wheat bread, wheat pasta etc. But if she's going through the endoscopy, it'd be good to have a true diagnosis for things like ADA accommodations in college dorms etc.

My advice would be to have her try to eat a few pieces of bread a day but if she can't and gets a negative biopsy, remember two things: 1) A POSITIVE blood test for celiac is rarely wrong and 2) the biopsy can be wrong...the biopsy is dependent upon sampling just the right areas. So if she were to get a negative biopsy, I would say that she should still consider herself a celiac and eat accordingly. Oh, and make sure that the GI doing the endoscopy, (insist !!) takes at least 5-6 biopsies to up the odds of sampling an area that is damaged, as damage can be patchy.

Mama, a lot of us here (me, for one) were in a lot of pain after diagnosis no matter what we ate. After the endoscopy, I suggest a bland diet with lots of rice, chicken/turkey, cooked veggies (green beans, zucchini), canned pears, sweet potatoes. Don't add back a lot of new foods (especially gluten-free treats) at once. Add one food at a time. And realize that she may be intolerant (temporarily or permanently) of dairy, soy and/or eggs.

The good news is that kids heal faster than adults (6 mos. for kids is what I read versus up to 2 years for adults). My 15y.o. son's comment at the time was: "I didn't realize that eating wasn't supposed to hurt." (Saddest moment for me as a mom to realize that he'd been hurting for years.) Best of luck to you and your daughter.

cyberprof Enthusiast
cyberprof
Posted

I was told this week that it looks like my 14 yo dd has celiacs. She is scheduled for an endoscopy/biopsy on the 30th. The doc was very cold and offered no solutions for me other than, "It looks at this point like it's Celiac's Disease. She can no longer tolerate any glutens." And that was it. I was on my own. I thought that I would just have to change our diet to gluten-free. Um - yeah - no so fast, Mama! Trial and error made me realize that I need to find a few foods she can tolerate until she heals. At this point we are at bananas, rice and chicken. We tried eggs and it takes 3 hours before her pains go away.

I've been scouring this site and I'm thankful for all the useful info I've found. Any other tips for the newly diagnosed and how I can best help her would be greatly appreciated. She and I cleaned out a cupboard yesterday and made it hers. We have begun shopping for 'her food' even though it'll be weeks before she is probably able to eat any of it. She's tired of feeling sick all the time. It was on Oct. 25th that the 'switch' changed in her life. At least now we have a direction to go...

Oh, and I forgot to say "Welcome!"

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

Celiac.com Sponsor (A8-M):


sb2178 Enthusiast
sb2178
Posted

Sweet potatoes, squash, white fish like cod, cooked pears, cooked carrots, and time. Millet is another option instead of rice.

I'd still give some gluten for the next week. Kids heal faster, and one week of misery will probably be worth it if it makes dealing with institutions easier for her in the future, as awful as it is. Tell her it's her to hang in there and it's her last chance for pastries or other favorites until she's healed enough to have gluten-free versions.

The upside of the biopsy is that is does give a measure of the extent of damage in her intestines, a baseline, to refer back to if you should need to in the future. And some docs/institutions will only accept biopsy-based diagnoses.

cyberprof Enthusiast
cyberprof
Posted

Tell her it's her to hang in there and it's her last chance for pastries or other favorites until she's healed enough to have gluten-free versions.

Yeah, if you're in the U.S., it'll be her last time for Thanksgiving stuffing and pies. The gluten-free versions can be good but take more work. See www.glutenfreegirl.com and Open Original Shared Link for ideas for next year.

jess-gf Explorer
jess-gf
Posted

Yeah, if you're in the U.S., it'll be her last time for Thanksgiving stuffing and pies. The gluten-free versions can be good but take more work. See www.glutenfreegirl.com and Open Original Shared Link for ideas for next year.

I am going to try this gluten-free pie myself: Open Original Shared Link it's basially normal pumpkin pie but with crushed gluten-free ginger snapps as the crust. I think I'll actually like that better than regular crust! Pumpkin is pretty healthy I think and she might be able to eat that okay, though I'm not sure since you said she had problems with eggs. You can probably also sub the milk pretty easily with coconut/almond/rice milk.

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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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.