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

Am I Celiac?


Brass

Recommended Posts

Brass Newbie

How many  times have you been asked that question?

Hello - I'm an english woman (54 years old), living in France and I know I need to seek medical advice but I am trying to gather as much information as possible before I do so... which hopefully you can help me with?

I suffered from autoimmune hypothyroidism, but had my thyroid removed due to thyroid cancer.  My mother suffered the same and also MS so we have a history of autoimmune disease.

I have had a history of stomach issues for decades.  I have been told it was IBS?  I also suffered from a burst appendix as a child and am told my stomach pain is a result of adhesions?  I had my gall bladder removed 2 years ago and I do suffer with a lot of and lots colds and coughs... much more so that my family.

When I eat pasta and pastry in particular I suffer with hang-over symptoms the following day along with sinus pain.  If I avoid bread for a period and then eat some I have the same symptoms.  I get a lot of headaches and reflux.

I am very often tired - not sleepy but achingly tired.  More recently I have noticed my joints ache and my joints feel tender all the time.  I have a dull ache between my shoulder blades and my tongue feels like it's been scolded.  I also suffer from bloating and wind. 

I have trouble sleeping and when I do sleep well I often wake feeling unrefreshed.

I dont suffer from diarrhea... I can get constipated even though I eat a healthy and balanced diet.  

I am a little overweight - I have struggled with my weight for most of my adult life.  As a result I try to eat as healthy as possible as I am always aware of my weight.  I walk a lot, I walk long distance walks (200km to 1000km) so I am reasonably fit.  I am a singer and so my job is also active.

My symptoms recently have been worse and I wondered if this was due to my thyroid medication so I had a blood test.  My Vit D2/D3 is below the lower range, my iron and B12 levels are in the bottom end of the range and my potassium levels are slightly raised.  

Is it possible that I am celiac?  I have thought for a long time that I am really sensitive to wheat.  But I've kind of refused to consider the celiac option because I dont want it!  But... has the time come for me to face up to this?  

I'm 54 and an active woman but recently I feel like I've aged 20 years?

Any and all guidance is very welcome

Thank you


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. You do sound like you could be in the right place. Testing for celiac would be a good idea with your symptoms and medical history. You do need to be eating a regular gluten diet for testing though. If you have been gluten free or gluten light that can cause a false negative. You don't have to eat a lot. A couple slices of bread worth a day for 3 months or so before testing if you have been gluten free. You might be able to get away with a shorter time if you have just been gluten light.

 

Celiac's Wifey Explorer

Hi Brass,

As you suspect thyroid disease, other autoimmune, GI issues including constipation, brain fog, fatigue, joint pain, the vitamin deficiences and more can all be closely associated with undiagnosed celiac disease.

I think you posted here to confirm your 'gut feeling' that your health just isn't right, and to figure out if this is the likely cause. This link might help you sort through that: Open Original Shared Link

I think you don't need to actually register and print out the full checklist to find it helpful --  just seeing in print 'commonly associated' may help with the process of gearing up the energy for appointments & med tests.

As for your Q title? I'd say, quite possibly.

It is about a 1 in 100 chance even if you are 'symptom free' and with a family history of autoimmune+many potential symptoms... I'd say it is not at all unlikely. You might want to go in requesting a full celiac panel just so you don't have to double efforts if you get an equivocal result.

My husband & at least one daughter are celiac, and the others girls are at high risk because of the superstrong family history. As someone who just went gluten free and made our whole house gluten free (crosscontamination for confirmed family members and broader health concerns about my own autoimmune system/ family history+finding out I have at least one permissive gene) I'd say nowadays the diet is not-so-bad compared to the many myriad health problems you will face if you stay in denial. (My husband has sortof sad-hilarious horror stories about trying to eat a GFD thirty years ago when he was first diagnosed.) Before your testing though, eat a tasty French croissant for me. That may be one of the only things I will truly miss.....

Good luck on your journey! 

 

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
      133,332
    • 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
      @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.