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

Nervous, Nervous, Nervous!

penguin

Recommended Posts

penguin Community Regular
penguin
Posted

Why am I so nervous about an effin' doctors appt? This is a new GI doc, the last one I saw two years ago was a total toolbox. :rolleyes: I don't like dentists for the same reason, one (ok two) bad apples in the bunch ruined the whole business of apples.

Apparently this one knows something about celiac, but I'm afraid he'll think I'm nuts! Of course, I have a doctor that actually diagnosed me celiac, but she didn't order an endo or anything. I have this big long list of symptoms and stuff, as much for me as for him, since I tend to forget things at dr appts. I'm going togive it to him along with copies of records from Dr. GI Toolbox and my most recent bloodwork. Here's what it says (sorry for yucky details):

As a child:

 GI workup around age 7, everything normal, stomachaches attributed to stress from siblings going to college

 Vomiting in the middle of the night (about every month)

As an adult:

 Mononucleosis summer 2002, sick for two months

 Beginning the following fall, diarrhea almost daily to present

 On-and-off anemia, elevated platelets

 Fall 2003- pyloric spasms start (ranging from weekly to every few months), no cause found after upper GI, ultrasound, and EGD

 Small ulcer found during EGD, attributed to heavy NSAID use. Treated with 60 day course of nexium. Didn’t effect spasms or diarrhea.

 Avoided oranges, tomatoes, and other acidic foods. Spasms happened anyway.

 Several h.pylori blood tests negative (taken about once a year)

 Spasm symptoms: moderate/severe abdominal pain, nausea, vomiting

 Spasms formerly treated with hydrocodone, levsinex, now treated with bentyl and phenergan

 Diagnosed with IBS, told to eat more whole grains. Didn’t help, made diarrhea worse.

 Celiac Panel in 1/06 – Only IgG comes out positive

 Gluten-free for four months, had some improvements

 Dr. Bartos makes Celiac diagnosis 2/24/06 after 3 weeks gluten-free

 Allergy testing 3/06, no food allergies

 Back on gluten 5/19/06

 Currently taking daily: Prilosec, Kariva. As needed: Bentyl, phenergan

 Other symptoms (GI or Otherwise):

o Heartburn

o Flu-like muscle aches (no fever)

o Facial numbness

o Lack of concentration (Spaced-out feeling)

o Feeling of intoxication

o Mouth sores (painful white patches)

o Foul gas

o Foul stools

o Lightly colored stools (from bright/pale yellow to orange)

o Loose stools (often bulky)

o Mucus in the stools

o Passing undigested food (especially vegetables and fruits, cooked or raw)

o Problems drinking milk, but cheeses and yogurt ok

o Tingling in hands and toes

o Tingling in the scalp (feels like my hair is falling out?)

o Lower abdominal cramping

o Charley horses (hereditary, have them at least once a week)

o Fatigue

o Gas and bloating

Um...anything else I should include? Am I nuts? I'm flipping out!

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

Celiac.com Sponsor (A8-M):


Matilda Enthusiast
Matilda
Posted

..

Felidae Enthusiast
Felidae
Posted

I know what you mean about having one bad doctor or dentist and then you always worry that the new ones will be bad too. Pretty comprehensive and I agree with Matilda add how the gluten challenge affected you.

Good luck with your appointment.

jerseyangel Proficient
jerseyangel
Posted

Chelsea--Sounds like you are well prepared for your appt. I completely understand why you are nervous, but try to keep an open mind where the doctor is concerned. (I can't believe I actually said that!!) But really. I hope that it goes well and that he's not a toolbox :D I'll be anxious to hear what he has to say--

flagbabyds Collaborator
flagbabyds
Posted

thats a really long list!

i think that you are well enough prepared.

TCA Contributor
TCA
Posted

I love being prepared. You sound like you're ready! Good luck!

penguin Community Regular
penguin
Posted
  • Author

I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I won't eat because I can't get over the fact that I've gained 16 lbs since May 19th! Very few of my clothes fit me. I haven't weighed this much since high school. Why on Earth would someone gain weight that fast? :unsure:

That's like, 5 lbs a week?!

I don't know what to do...

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

good luck, definitely mention how going back on gluten has affected you. This is VERY important.

also, right before my dx, I gaine about 30 pounds in a matter of WEEKS... yep... was a very sick puppy... so while 5 pounds in a week seems a lot, it isn't as bad as it could be! I was literally gaining 10 pounds a week... keep us posted!

jerseyangel Proficient
jerseyangel
Posted
I leave for my appointment in about 45 minutes. I can't eat anything because my stomach hurts, which is good in a way, at least I'm going to the right kind of doctor for that.

I know that feeling so well...hopefully in an hour or two, you'll feel relieved and have some answers. It's gonna be ok :)

fanny Apprentice
fanny
Posted

Good luck and stay strong.

I'm having my second endoscope next month and I nervous about that I hope that my villi are healing.

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
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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.