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

Did She Get Over It?

Roda

By Roda
in Doctors

Recommended Posts

Roda Rising Star
Roda
Posted

My sister in law was telling me that my neice has been having some GI issues and has been seeing the doctor. I mentioned to her that my niece should tell them that her aunt has celiac at her next appointment. Well, I was chatting to my niece online this morning and she told me she was going to get tested. Long story short she is one of my brother's three children. My brother has GI issues and sarcoidosis. I'm convinced he has celiac. Anyway, she asked the medical person (either a PA, NP or an intern according to my niece) about getting tested for celiac that her aunt has it and she knows that it is genetic. The medical professional said to her "Did she get over it?" :huh: I'm still amazed of the lack of education. Luckily my niece is a fairly intellegent college student and didn't think that was right and figured that they didn't know anything about it. I am worried since she is continuing to see this group that she won't get the proper testing and information. I sent her an email of the tests she needs, some information and some reputable websites for her to do some reading including this one. I'm not wishing this on her, but there are alot of worse things and she can manage it by diet. Maybe this will be the wake up call her dad needs to maybe get tested. In the past he said he would rather be miserable than to give up things he loves. Sigh!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Not that anyone should have Celiac Disease wished on them.

Good to let your niece know the proper tests that should be ordered. She should know that celiac disease can hit at any stage of life and if she is negative now that may not be true for 30 years down the road. If she is positive then she has the knowledge to live a healthy life. Knowing how to treat celiac disease can help prevent a possible infertility issue too.

Roda Rising Star
Roda
Posted
  • Author

Not that anyone should have Celiac Disease wished on them.

Good to let your niece know the proper tests that should be ordered. She should know that celiac disease can hit at any stage of life and if she is negative now that may not be true for 30 years down the road. If she is positive then she has the knowledge to live a healthy life. Knowing how to treat celiac disease can help prevent a possible infertility issue too.

I know someday she would like children. You never know until you start trying whether or not you are able. I told her that it can be linked to infertility. I just hope she gets some answers. And she knows it isn't something you "get over" that you stay healthy by avoiding the gluten.

Looking for answers Contributor
Looking for answers
Posted

I'm so glad you are watching out for her and helping her to become more educated. I think she'll get the proper screening with your help. I can totally understand your frustration. I just read someone else's post on here yesterday that said his/her doctor gave her a handout that read: "while Celiac is a disease, gluten intolerance is a psychological disorder for those who need "control" over their food" or something to that effect. I couldn't stop thinking about that last night...it makes me shiver to think that there are doctors out there spreading that complete rubbish!

  • 1 year later...
Roda Rising Star
Roda
Posted
  • Author

Update on my neice. She ended up having a colonoscopy and they diagnosed her with colitis. They told her they would do the colonoscopy, and if it didn't show anything then they would test her for celiac. She never has had the blood tests done. I was home in June and I overheard her talking to her dad and mom. She is having issues again and she can't figure out why. Her mom was like, "it's just stress." She already has identified some foods that aggrivated her problem so she avoids them(she said chinese food really bothers her). She also mentioned that she had been avoiding wheat also before she came home for summer break. I guess she had been doing fine until coming back home and eating whatever. I really feel that she needs tested, but I don't know how she will take me suggesting it again. She still is seeing the same stupid doctors she was before and because of her continued problems have diagnosed her with IBS. I won't get started on what I think of that diagnosis!

Di2011 Enthusiast
Di2011
Posted

This makes me mad.

I avoided breakfast for 30+ years

I didn't like pizza

I didn't like pasta

and it goes on and on...

I really hope that you give this girl some support so she doesn't have 38 years of "okay" but actually feeling like crap

I know it is hard (my 9y/o son has the "gluten free is bad" already :(

Roda Rising Star
Roda
Posted
  • Author

She is a junior in college and, according to her, plans on going to grad school and enrolling in the Airforce ROTC program and then go active duty. Celiac would hinder that.. That won't stop me from mentioning it to her again.

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

That's a moot point, what her "plans" are, as she will be too sick to implement them by that time, anyway, if she's actually celiac or gluten intolerant and does not start eating like one.

Really no excuse not to get tested. Should fire her idiotic doctors while at it. Close relatives with celiac, relatives with celiac symptoms, and her symptoms, and no basic blood tests = medical incompetence.

Add to that if she's already avoiding certain food groups, she knows what her problem is, but is in denial.

bartfull Rising Star
bartfull
Posted

Don't these doctors have computers or books to look things up on?!! I own a music store, and if a customer comes in and mentions a brand that I'm not familiar with, I look it up. But these stupid doctors are dealing with our HEALTH. You'd think they'd care enough to at least do a little research when someone asks about a condition they are not familiar with. GRRRR!!!!

Roda Rising Star
Roda
Posted
  • Author

That's a moot point, what her "plans" are, as she will be too sick to implement them by that time, anyway, if she's actually celiac or gluten intolerant and does not start eating like one.

Really no excuse not to get tested. Should fire her idiotic doctors while at it. Close relatives with celiac, relatives with celiac symptoms, and her symptoms, and no basic blood tests = medical incompetence.

Add to that if she's already avoiding certain food groups, she knows what her problem is, but is in denial.

I couldn't agree more with you. I just hope it doesn't get that bad. She is so set in her plans because she wants the help with her mounting student loans. I told my mother that when the time comes they may not accept her anyway based on some of her health issues now.

Di2011 Enthusiast
Di2011
Posted

That makes me sad :(

If gluten is her problem and she dealt with it now just imagine the great things she could do with her life!

You really are between a rock and a hard place.

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.