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

Scared


NateJ

Recommended Posts

NateJ Contributor

I went and had a ct scan with all the dye today. I don't know why i'm so cared of the results but i'm kind of freaking out.

I've had so many tests and things done in the past i'm not sure why this one is bothering me so much.

I've never hoped for IBS, but I am now.


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



Celiac.com Sponsor (A8-M):



dani nero Community Regular

No point in worrying yourself before you actually see the results. 

Hopefully it'll be ok :-) Don't worry, try to relax. 

bartfull Rising Star

I just went back and read some of your previous posts so I could get an idea of what is going on with you. It seems you have been gluten-free for a couple of years now and you are sick again. I understand why you are worried, but maybe it's something as simple as a new intolerance you have developed. I'll be praying, crossing my fingers, and sending positive thoughts your way. (((((HUGS)))))

NateJ Contributor

thank you both.

I'm trying my hardest not to be a hypochondriac but the internet is evil and someone should take it away from me.

I'm going to play some games and walk my dog later to try and relax. This whole thing has me completely nerve racked.

Celiac Mindwarp Community Regular

Hey Nate

Hope the dog walking etc. helps.

We will be here if you need to talk it through when you get results, fingers crossed it will all be fine. You might find other answers about possible reasons, like additional intolerance - some of mine totally took me by surprise - dairy I kind of expeced, but corn and soy - seriously??

Hang in there

Mw

NateJ Contributor

I took it upon myself to cut out everything and see a dietician a couple weeks ago. and with little or no cheating I've eliminated everything with FODMAPS

but i'm still feeling horrible. Its frustrating.

I will for sure let everyone know when the test comes back, and hopefully you can all poke fun at me and tell me how I was worried about nothing.

I'm looking forward to it.

dani nero Community Regular

Hang in there Nate and don't listen to those internet demons. They just want to make you worry and feel miserable. 

Just live normally, and every time you start thinking about this just tell yourself that worrying about it won't make time go faster, and won't help you go through your days until the appointment comes. Let it be business as usual until it's time to deal with this.


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



Celiac.com Sponsor (A8-M):



mommy2krj Explorer

Hugs to you. The waiting and not knowing is always the worst part. Always....especially if you've made Dr. Google your friend! That is one friendship you should cut off immediately! Hard though, I know.

Hope everything comes back ok and you can figure out something less sinister as the source of your problems.

NateJ Contributor

"CT scan was negative for mass, fluid, or signs of inflammation. Positive non obstructing kidney stone, no swelling of kidney noted. Continue plan for you to see GI specialist"

 

From my Dr this morning.

Good and bad I guess. But I'm taking it as good for now.

I'm sure the GI will want to probe further.

Now everyone can tell me how silly I was. :)

bartfull Rising Star

HOORAY!! It IS good news. No cancer (I know that is what you were worried about), nothing but a kidney stone that isn't causing problems. Now, let's try to figure out if it is an additional intolerance. :)

Celiac Mindwarp Community Regular

Sound like good news :D

 

Hope the FODMAPS goes well. Many of us have a range of other intolerances too, and cutting out those can make a world of difference.

dani nero Community Regular

Oh congratulations :-) I'm happy to hear that it wasn't as bad as you thought it might have been. I think that you did a good job. You were aware that reading about possible diagnoses online would get you more paranoid than logic dictates, and you stopped yourself. Well done :-)

w8in4dave Community Regular

At least it is something you can have taken care of!! Thank goodness!! It is never silly to worry! It is in us to worry!! Because WE know our bodies and know when there is something wrong. Never feel silly or stupid for worrying about a test! It is your health at stake! Goodness gracious , ease up on yourself a lil :) I am glad your ok! :) Huggz! And your dog got a good walk out of the deal! :) 

NateJ Contributor

Thanks everyone.

I'm still not feeling myself, but at least I'm functioning. Been on FODMAPS for two weeks now and I need minimal improvement.

I'm going to stick it out a little longer until I see my GI next week. Maybe they will have some suggestions about it.

The only soy i'm getting now is from Ensure shakes twice a day. But other than that I've had no peanuts, legumes, soy, lactose, gluten, or corn in over two weeks now.

And I think my weight may have finally bottomed out. I haven't lost any more in about a week. so crossing my fingers!

bartfull Rising Star

That soy COULD be what is doing it. I can't tolerate even the slightest bit of soy. And just about ALL soy in the US is now GMO. Besides that, doesn't Ensure have a bunch of corn syrup in it?

NateJ Contributor

It does. But I haven't drank it for a long time and wasn't feeling any better, so I figure I need to get some type of nutrition since I cannot eat anything right now.

Or not much of anything.

I've asked before if anyone new of something better and never got any responses, so I'm stuck with this.

I will ask my GI about it next week probably. I imagine he has to have someone in a similar situation that just can't eat.

AlwaysLearning Collaborator

Have you been tested for vitamin and mineral deficiencies? They often go hand in hand with gluten allergies and some don't seem to improve even if the digestive system has had time to heal.

Over-the-counter B12 tablets took care of my abdominal pain - in minutes after taking just one! But I did take it with OJ so who knows if folic acid played a part as well. And it doesn't last long.

I'm just starting down the road of figuring out my deficiencies and am far from getting all of the answers I need, but am super excited to finally have some relief after six years of pain and a new direction to investigate.

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      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
×
×
  • 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.