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

Is This A Good Plan?

Joni63

Recommended Posts

Joni63 Collaborator
Joni63
Posted

Hi,

I had positive blood test results and am getting the other tests Wednesday. I thought it would be a good idea to start gluten free as soon as the endo/colonoscopy tests are through.

Is there any reason not to?

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Is there any reason not to?

Nope, none at all! :D

Best of luck on Wednesday--let us know how you do!

darkangel Rookie
darkangel
Posted

Yep, the sooner, the better, once your scopes are done.

Joni63 Collaborator
Joni63
Posted
  • Author

Thank you jerseyangel and darkangel, I will let you know.

I know I'm nervous now and wish it was done!

I had a call from the hospital and they asked all kinds of medical questions so I'm glad that part is all done. She told me the whole procedure should only take about 15 minutes and I will get the results when they are done. I didn't realize I'd get the results the same day. I'm scheduled for 8:30am so that's one good thing.

I've got a few more things to pick up from the grocery store today so I'm ready for the prep tomorrow. Mostly baby wipes, lol. My kids are too old for them now.

I've been reading all kinds of threads and have more questions.

I should be taking a calcium/magnesium supplement now? What ratio and brands are good? And what about vitamin D? or other vitamins?

I run about 3 miles a day and used to lift weights twice a week until several months ago when I would get too fatigued from lifting. Is that also a celiac symptom?

I get swollen eyelids when I wear mascara, I bought some Physicians Formula yesterday. Does anyone know if all their makeup is gluten free, or just the Mineral Wear?

Sorry for all the questions, but the more I read the more I need to know

darkangel Rookie
darkangel
Posted
I run about 3 miles a day and used to lift weights twice a week until several months ago when I would get too fatigued from lifting. Is that also a celiac symptom?

Yes, fatigue is common. If weight loss is an issue for you, I'd drop the running and add the weight training back into your routine. Even if weight loss isn't an issue, perhaps you could strike a happy medium by cutting back on the running and adding the weight training back... it's so important to maintain healthy muscle mass as we get older and it's good for bone density, too.

jerseyangel Proficient
jerseyangel
Posted
Thank you jerseyangel and darkangel, I will let you know.

I know I'm nervous now and wish it was done!

I had a call from the hospital and they asked all kinds of medical questions so I'm glad that part is all done. She told me the whole procedure should only take about 15 minutes and I will get the results when they are done. I didn't realize I'd get the results the same day. I'm scheduled for 8:30am so that's one good thing.

I've got a few more things to pick up from the grocery store today so I'm ready for the prep tomorrow. Mostly baby wipes, lol. My kids are too old for them now.

I've been reading all kinds of threads and have more questions.

I should be taking a calcium/magnesium supplement now? What ratio and brands are good? And what about vitamin D? or other vitamins?

I run about 3 miles a day and used to lift weights twice a week until several months ago when I would get too fatigued from lifting. Is that also a celiac symptom?

I get swollen eyelids when I wear mascara, I bought some Physicians Formula yesterday. Does anyone know if all their makeup is gluten free, or just the Mineral Wear?

Sorry for all the questions, but the more I read the more I need to know

I think calcium is a good idea. I use Citrical--the Petites are very easy to swallow, and they're certified gluten-free. They have vitamin D in them. They also have a formula that includes both vitamin D and magnesium also. I believe the ratio is 5:1--calcium/magnesium.

I called Physicians Formula last week because I read here that a member was told that their mascaras were gluten-free. The person I spoke to said that they will not say any of their products are gluten-free because they could have gluten-derived ingredients. Just FYi :)

I also spoke to a rep from Almay--she told me that their One Coat mascaras were all gluten-free. I also have a problem with sensitive eyes, so I bought the Almay--haven't tried it yet, though.

Yes, the fatigue is definately a symptom, and it can take a while to get better. It will, though, just be patient ;)

It sounds like you're all ready for your tests. I'm sure everything is going to go fine :)

Joni63 Collaborator
Joni63
Posted
  • Author

Citrical sounds good. Do you find that at a grocery/drugstore?

I'm bummed about the Physicians Formula makeup. I know it's talc free and I was hoping gluten free too. Guess I'll have to return it for something else. <_<

I've used Almay mascaras before and they still bothered my eyes. Can't remember if it was the One Coat or not.

It will be nice to lose the fatigue. I need to lose about 10 lbs and have no incentive to push myself hard enough right now. A few years ago I could have lost that weight quickly. This past year I've struggled with it terribly hard. No matter how well I eat, and believe my I was obsessive about logging food and it's nutritional content for a while, I haven't been able to lose those last 10. I think it's mostly in my stomach though, because that has grown in the past several months. :P

Prepping for the test hasn't been too bad so far, except for living in the bathroom for an hour. I had my first two doses of the Phosphate Soda with Gatorade at 3:00 pm and am due for my last two at 7:00pm. My worst fear is going hypoglyceimic, I really hope that doesn't happen.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Citrical sounds good. Do you find that at a grocery/drugstore?

I'm bummed about the Physicians Formula makeup. I know it's talc free and I was hoping gluten free too. Guess I'll have to return it for something else. <_<

I've used Almay mascaras before and they still bothered my eyes. Can't remember if it was the One Coat or not.

It will be nice to lose the fatigue. I need to lose about 10 lbs and have no incentive to push myself hard enough right now. A few years ago I could have lost that weight quickly. This past year I've struggled with it terribly hard. No matter how well I eat, and believe my I was obsessive about logging food and it's nutritional content for a while, I haven't been able to lose those last 10. I think it's mostly in my stomach though, because that has grown in the past several months. :P

Prepping for the test hasn't been too bad so far, except for living in the bathroom for an hour. I had my first two doses of the Phosphate Soda with Gatorade at 3:00 pm and am due for my last two at 7:00pm. My worst fear is going hypoglyceimic, I really hope that doesn't happen.

I get the Citrical at CVS. I haven't used the Almay yet--hope it dosen't irritate my eyes, too. I was thinking it might be more gentle--I guess I'll see :D

I lost weight right before I was diagnosed--I was pretty sick. Now, I gain very easily, and could stand to lose about 20 pounds.

Glad your prep hasn't been too bad. My husband used the Phospho-soda and he had a much easier time than I did. My doctor made me drink the gallon jug of laxative--followed by a double dose of Dulcolax :o

Best of luck tomorrow--let me know how you do :)

Guest j_mommy
Guest j_mommy
Posted

Fatigue was a huge symptom for me too!!!

glad to hear your prep is going well.

Also, some people when they go gluten-free, really need to watch what they eat b/c now your body is able to absorb nutients correctly and some gain weight.

With my endoscopy they told me it looked good afterward....but the biopsies need to be sent to the lab to be examened and it took mine a week to get the results!!!But you can definetly go gluten-free right away!!!

happygirl Collaborator
happygirl
Posted
I had a call from the hospital and they asked all kinds of medical questions so I'm glad that part is all done. She told me the whole procedure should only take about 15 minutes and I will get the results when they are done. I didn't realize I'd get the results the same day. I'm scheduled for 8:30am so that's one good thing.

They will be able to give you their impressions of what they saw, and can diagnose some things based on looking at it. However, if they are taking biopsies of your small intestine during the endoscopy, the slides will be sent out to the pathology department, and you'll have to wait for the results. Some patients are told it didn't "look" like Celiac, but the biopsies proved otherwise, or some doctors can spot the hallmark features (if present) and tell the patient that they expect the biopsy will coincide with their impressions.

Best of luck!

Joni63 Collaborator
Joni63
Posted
  • Author

Yay, I'm back!

All in all it wasn't too bad. This morning was the worst because I was nervous and hungry, but once they put me out it was all over. I'm soooooooo glad to be home and eating and drinking my morining coffee! :D

Looks like I belong here. My results showed scalloping of the duodenal folds, consistent with Celiac Sprue and I was told to go on the Gluten Free diet. I'm both sad and relieved. The only other problems were a few small internal hemorrhoids and a small hiatal hernia. Not too bad considering it's normal to fear the worst when it comes to any type of testing.

The Doctor saw me right after I woke up from the anesthesia and I was still quite groggy. He said he wants to see me in 2 to 3 weeks and I said "Oh no, do I have to do these tests again so soon?" He got a chuckle out of that. :rolleyes:

The next thing I have to get squared away is my kidney. I have a checkup for that tomorrow to probably get bloodwork and ultrasound to see if the swelling went down.

Oh, I can't imagine having to drink a gallon jug of laxative and then taking Dulcolox too. That must have been nasty jerseyangel. I did have the option of taking 32 pills, but they told me they were huge and I'm not good with big pills so I took the Phos-Soda instead.

So, I guess I need an avatar and a little blurb at the bottom with my name because I'll be hanging around a lot.

Next on my list is to get my children tested. :(

That's a subject I can't quite deal with yet.

jerseyangel Proficient
jerseyangel
Posted

I'm glad it wasn't too bad this morning--welcome to the family :D

I understand your feelings about having the kids tested. But, you're right--one thing at a time. Let this all sink in, get comfortable with the diet, and feel better.

Get some rest today--and take care :)

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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.