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

On Going Problems Celiac Related?

SivaK

Recommended Posts

SivaK Newbie
SivaK
Posted

Hi there, this is my first post ever, on any forum. I just don't know what to do anymore. I was diagnosed with celiac disease about 2 years ago. Blood test showed positive twice then a positive endoscopy. I have been able to keep my symptoms (fatigue, anemia, hair loss, anxiety) under control with a strict gluten free diet, until a few months ago. My symptoms started coming back, at first I thought I was accidentally ingesting wheat, but I can't seem to pin point what I was eating. Finally after a few weeks and some serious crashes (including bad cheats pains and being dizzy to the point of blacking out every time i stand as well as often when i am just sitting), I went to my doctor. He ran blood work, and said my celiac seems to be under control, he said when i was diagnosed my number was at 156, and now is at 11. Unfortunately, my blood cell counts were down, low red and white as well as two other blood related counts. He said my iron is fine, as well as all my other vitamins and nutrients. He does not think my symptoms are related to my celiac. I am now permanently off work, and waiting for more tests to be referred to a hematologist. The problem is when I am not doing any physical activity, my symptoms subside(I even had a second blood test when I was feeling better and my numbers were back to normal), but as soon as I go back to activity (walking, doing the dishes, act..) The symptoms come back(and the blood cell count goes back down). I realized today that I have been eating oats I got from a gluten free store recently. They say wheat free on the bag, but are they gluten free? I also work with hair dye that all contains wheat on a regular basis (when i wash it out it is on my bare hands about 4 times a day 5 days a week). I just want to get back to my regular life, and currently this is not an option. I still think this has something to do with my celiac, as the symptoms are very similar to the ones I was having before I was diagnosed, but my doctor thinks it has to do with my blood or an unrelated auto immune deficiency, and not the celiac. Has anyone had a similar experience? Can celiac result in a low blood cell count? Should I seek a second opinion from another doctor? Please help. Thank you.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Some Celiacs react to the gluten in oats.

If the oats were made in a dedicated gluten free facility then this might be the case for you.

If they were not made in a dedicated gluten free facility then they likely contain gluten, as virtually all oats are contaminated with wheat unless they say they were made in a gluten free facility.

I would only eat certified gluten free oats to do the experiment to see if you still feel sick.

Can you wear gloves when you are working with wheat containing ingredients at work?

Unless you are able to clean all of the dye off your hands and from under your nails, your food could be getting contaminated from the gluten residual on your hands.

Just a couple of thoughts for you before the hematologist weighs in.

Good luck.

SivaK Newbie
SivaK
Posted
  • Author

Thanks for your thoughts, i really appreciate it, i never thought about the dye under my fingernails. I am going to cut out the oats and since I'm not currently working, no dye either, and see if i start feeling better. thanks again.

kareng Grand Master
kareng
Posted

I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quite manageable.

SivaK Newbie
SivaK
Posted
  • Author

I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quiet manageable.

I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

ravenwoodglass Mentor
ravenwoodglass
Posted

I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

SivaK Newbie
SivaK
Posted
  • Author

It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

Yeah I was actually thinking about getting one of those food allergy tests done to see if I do have anything else but I've been researching them, and it seems they may be somewhat inaccurate. Have you heard anything about these testa? I might just get one done anyway, some people seem to find success with it. Going on a food elimination diet may be best. It looks like soy, lentils, dairy, and eggs are pretty high on the list. I am 27 and have never consumed meat in my life (parents are vegetarians, raised that way), I would like to avoid it at all costs, any thoughts on other forms of protein? I also can't seem to find any research pointing towards the drop in blood cells being related to food allergy. Everything seems to be related to gastronomical issues, but even with my celiac that has never been a major problem for me, who knows? I'm willing to try just about anything.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

If gluten free oats turn out to be a problem for you then be aware some gluten free products can have cross contamination from them also. I am EXTREMELY sensitive to gluten free oats and even slight cross contamination from them. The CC kept me sick for 8 months before I figured it out. I already knew I couldn't eat the oats but didn't think about CC from them. If I carefully source gluten free products that don't use any gluten free oats then I'm fine.

SivaK Newbie
SivaK
Posted
  • Author

I don't know if anyone is still paying attention to this thread, just thought I'd let ya'll know that since going off the oats, and not being at work therefore not being in contact with the wheat containing hair dye, as well as being extra careful with my diet (no eating out) I am finally starting to feel better. I did a lot of research on what was going on, and it turns out celiac disease can cause a temporarily low blood cell count, and if you're not consuming large amounts on a regular basis, you blood will test negative for celiac disease (I'm sure everyone knows that). Why am I not a doctor?...and Why does gluten want to ruin my life?... :(

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
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    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.