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

Non Gi Symptoms


Michelle M...

Recommended Posts

Michelle M... Newbie

Hi. I posted a few days ago as a newbie with a question on whether you could still have a problem with gluten in the absence of major GI symptoms. Thanks again for the perspective folks provided confirming it is indeed possible. I'm really glad I found this board with so many smart educated people. It's such a shame so many people have had to struggle for so long before figuring out what was going on. Even if it turns out gluten is not my problem (maybe I am just a crazy hypochondriac), I will continue to spread the word about it to anyone who I think could benefit from it.

I have a few other questions regarding non-GI symptoms and was wondering if they could be related. My dr. suspects gluten is an issue for me however I am awaiting Enterolab results and do not know for sure yet.

Skin - I know there is the DH manifestation of Celiac but what about other skin issues? I've had terrible changes to my skin. I used to have very nice, smooth blemish free skin and one day I noticed it was dehydrated but very oily, clogged pores/blackheads (never had as a teenager/young adult), hyperpigmented and rough gross texture (like an orange peel). I've noticed this mainly on my face but also having some dry itchy patches on lower body and oily on upper body. My hair has also been shedding at an abnormally increased rate for over a year. Hair shedding started before skin changes. Thyroid is perfect. I'm anemic, low b12, low vit d and suspect low folic acid - guess these things could all be from vit/mineral deficiencies. I'm also 35 - I guess it could be hormones and the gateway to perimenopause.

Cognition/Orientation - Are feelings of minor intoxication/confusion/disconnected from reality ever part of the gluten story. What about unrefreshing sleep and feeling like it takes a really long time to actually wake up and come out of a fog? I know these things are symptoms of a lot of things, but just thought I'd ask in context of gluten.

Thanks.

Michelle


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Could be from vitamin/mineral deficiencies, but what are those from?

My hair had started turning unexpectedly gray. When I went gluten-free, the new stuff began coming in in my normal color. The gray I had before I started down this road stayed ( :angry: ).

Brain fog is really common, as are sleep disorders. I couldn't sleep, others have said they slept too much.

Also dental problems, gum inflammation, joint inflammation, hyper-reactive skin.

I'm sure others will list more.

plantime Contributor

I get some pain in the gi tract, but most of my symptoms are in my joints and brain. I get extreme pain in my joints, and I can't think straight. I also get suicidal when I have gluten. I don't know about skin problems, my allergies interfere with any "tests" I could do myself.

Sophiekins Rookie

Yes, your cognition/orientation problems are common among celiacs. . .the good news is that they more or less go away when you go gluten-free. As for the hair problems, that is your vitamin/mineral deficiencies - specifically the iron (anemia) and the B12. . .despite the similarities in the words, folic acid has nothing to do with hair loss. I had the same problems with hair loss. Talk to your doctor about sublingual B12 or B12 injections and get him/her to put you on beefy (sorry, hefty. . .) iron supplements.

tarnalberry Community Regular
Cognition/Orientation - Are feelings of minor intoxication/confusion/disconnected from reality ever part of the gluten story. What about unrefreshing sleep and feeling like it takes a really long time to actually wake up and come out of a fog? I know these things are symptoms of a lot of things, but just thought I'd ask in context of gluten.

That's what most of us are talking about when we say we get 'brain fog' from being glutened. Appears to be *quite* common.

CMCM Rising Star

Absolutely.....gluten reactions do NOT have to be digestive in nature. If you read the book "Dangerous Grains", it has a list of over 200 symptoms that are often a result of celiac disease or gluten sensitivity. The majority of these 200 symptoms are not digestive in nature!

The problem with doctors and their feeble attempts to recognize celiac disease is that they only know the "classic" textbook, most extreme version of celiac disease: a wasted body condition with distended belly, D, foul stools, etc.

I have read about celiac sufferers whose only symptom was seemingly incurable heartburn/reflux.

Others might have migraines. Sinus issues. Seemingly arthritic joints. The list is long...you mentioned having a great many which are on that list!

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.