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

Omg I Might Actually Have celiac disease..


JerryK

Recommended Posts

JerryK Community Regular

Yesterday I ate an Apple Fritter for breakfast, just to see what would happen. A couple hours afterwards, I started feeling fatigued and groggy, sort of like not getting enough sleep. O.K. no big deal..this happens..

felt better after lunch.

In the afternoon I felt better after my noontime run. I decided against discussing the possibility of celiac disease with

my dentist again. No way can I have it! I feel fine, I'm just being a hypocondriac...ect...

In the evening...bam it hits me, cramps, diarrhea, bloating... the works :wacko: . I can only attribute this to what

I had for breakfast.

How can it have taken me 45 years to make this connection?


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

It can take a long time to figure out gluten sensitivities because gluten is in so many processed foods. It reminds me of the saying if you want to hide a tree, put it in the forest. There are so many variables to the rate of digestion. (exercise, bulk matter of the food, amount of liquid in stomach) Don't feel bad you didn't figure out what a doctor should have screened you for.

L.

Guhlia Rising Star

The same way it takes doctors (MEDICAL DOCTORS) 11 years to diagnose people! You're fortunate that you figured it out. Many go undiagnosed for life and end up with horrible complications from the disease. Are you planning on getting tested?

JerryK Community Regular
The same way it takes doctors (MEDICAL DOCTORS) 11 years to diagnose people! You're fortunate that you figured it out. Many go undiagnosed for life and end up with horrible complications from the disease. Are you planning on getting tested?

Yes, my symptoms and my dental defects make me believe I need to be tested. I understand they test you for antibodies. What tests should I make sure they run on me? If the antibody test comes out positive on me, do I have to have a biopsy? I think I'd like to pass on that....

ravenwoodglass Mentor
Yes, my symptoms and my dental defects make me believe I need to be tested. I understand they test you for antibodies. What tests should I make sure they run on me? If the antibody test comes out positive on me, do I have to have a biopsy? I think I'd like to pass on that....

Ask them to run a complete Celiac Panel and also to do a B12, folate and iron check. Then go gluten free as soon as the blood is drawn. Many have a false negative on the blood tests so regardless of the results you will want to at least try the diet. And yes those pictures in the other post sure do look like 'celiac teeth'. I have had 8 crowns and more to go. Both my DS and I were constantly harrassed by our past dentist for not taking care of our teeth when we care for them the same as the reccommend. I bet you love that new smile, I know I love mine just not the process to get it.

KaitiUSA Enthusiast

You should definitely get tested....doctors are just crazy sometimes when it comes to celiac. Takes them forever, especially if you do not have the supposed "classic" symptoms

Ursa Major Collaborator

Jerry, I completely agree with everything that has been said already. You should definitely be tested for celiac disease! And if that makes you feel better........I figured out I have celiac disease last year, at the age of 52! I did see many doctors with 'obvious' celiac disease symptoms (obvious to people who actually know about celiac disease, unfortunately, most doctors don't), but none of them clued in. Especially because I wasn't wasting away (even though as a kid I was a stick figure), but was gaining more and more weight.


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



Celiac.com Sponsor (A8-M):



JerryK Community Regular
Jerry, I completely agree with everything that has been said already. You should definitely be tested for celiac disease! And if that makes you feel better........I figured out I have celiac disease last year, at the age of 52! I did see many doctors with 'obvious' celiac disease symptoms (obvious to people who actually know about celiac disease, unfortunately, most doctors don't), but none of them clued in. Especially because I wasn't wasting away (even though as a kid I was a stick figure), but was gaining more and more weight.

Thanks everyone for your responses. I will try to motivate myself to discuss this with my dr. I'll load up on apple fritters right before the test :blink:

marciab Enthusiast

Jerry,

How about testing with plain macaroni or spagetti noodles ? Apple fritters have a lot of other ingredients besides flour that could have contributed to your symptoms. Anything fried tears me up ...

And I completely agree with the others about being tested prior to going gluten free. Even if the tests come back negative, you'll feel better that you were tested. But, from what I have read, no one really knows until they go on a strict gluten free diet whether or not they are celiac.

Hang in there ... I've been at this 10 months and I have so much to learn.

Marcia

tarnalberry Community Regular
Thanks everyone for your responses. I will try to motivate myself to discuss this with my dr. I'll load up on apple fritters right before the test :blink:

You have guidance from another health professional! Your doctor isn't going to just ignore that.

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.