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

Kinda Of A Rant....kind Of A Question....


Gen

Recommended Posts

Gen Rookie

I made the Dr's office give copies of my recent bloodwork. Of course they had told me that everything was normal except for my WBC was elevated. It has always been elevated...I have always been given the excuse that it was because I smoked...( dont lecture I quite a month ago). But they ive me a copy cause I have to go to the hemo Dr because I have been diagnosed with leiden factor 5. I start looking and my MCV is elevated among other things....After researching here and other places...it seems this points to a b-12 deficincency...

Why has everyone ignored this for years?

Since I expect my celiac panel to be negative because I went gluten free about 4 weeks prior to the tests, I was hoping this might help point them in the right direction. Either way I am staying gluten free. It's so nice to be rash free. Plus when I paniced about the bloodtest and tried to eat gluten for two days prior to the blood test I felt awful and had GI symptons I have never had before.

Sometime in the near future I will be having a scope and maybe that will show something...


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



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

You can ask your doctor to run a b12 test and that'll answer your b12 deficiency question. If you are deficient then your doctor should also test for pernicious anemia.

mushroom Proficient
I start looking and my MCV is elevated among other things....After researching here and other places...it seems this points to a b-12 deficincency...

Why has everyone ignored this for years?

My MCV had also been elevated for years--I have had frequent blood tests because of my RA meds. Nobody was bothered by it. I finally looked it up and had them run B12 and folate (they were done once a year ago and were low normal at that time). B12 had dropped even further and folate was several points below. I told my PCP I needed B12 injections 'cos I can't do the sublinguals, and folate with a B complex. Then my rheumy sends a note to my PCP (she gets copies of all my bloods) telling her that I need B12 and folate supplements--at least she is hep. My PCP was quite smug, saying I'm already on to that, when she wouldn't have been without my prompting.

Why do they bother with the ranges if the docs continually ignore them and say because you are just a little bit over or under it doesn't count. From what I understood of what I read, the B12 reading is not all available to you at the time of the test; you are actually getting less than is tested out so you are more deficient than is shown.

Gen Rookie

I went home and checked....I should not be deficient in B-12. I take a multi plus eat plenty of healthy greens. And prior to going gluten free I at more than necessary of foritfied bread...

I just hate that they don't listen or concern themselves with any thing out of the ordinary.

quietmorning01 Explorer
I made the Dr's office give copies of my recent bloodwork. Of course they had told me that everything was normal except for my WBC was elevated. It has always been elevated...I have always been given the excuse that it was because I smoked...( dont lecture I quite a month ago). But they ive me a copy cause I have to go to the hemo Dr because I have been diagnosed with leiden factor 5. I start looking and my MCV is elevated among other things....After researching here and other places...it seems this points to a b-12 deficincency...

Why has everyone ignored this for years?

Since I expect my celiac panel to be negative because I went gluten free about 4 weeks prior to the tests, I was hoping this might help point them in the right direction. Either way I am staying gluten free. It's so nice to be rash free. Plus when I paniced about the bloodtest and tried to eat gluten for two days prior to the blood test I felt awful and had GI symptons I have never had before.

Sometime in the near future I will be having a scope and maybe that will show something...

Some doc's send the lab work to me through the mail. All of my current doctors do except one - I've requested that this one start doing this routinely.

I think the reason they overlook things is because of their limited time and focus on looking for something specific. I've caught several things through out the year, bring it to their attention in form of a question - I saw this, what does this mean for me and what can I do to help myself with this. They rarely take offense if I pose it like that.

Diagnosis is difficult for just about anything - and sometimes those extra set of eyes coming from the body that has to live with it is necessary. They are, after all, only human - contrary to popular belief (theirs) **wink**

I also find that doc's have specialized SO MUCH that it's hard for them to really make a diagnosis in another discipline. So, I take the responsibility myself, research, and speak up. I have to live in this body, they don't. I have more invested in being well than they do with THIS body. They are GOING to miss stuff. Kudos to you for rechecking and getting the ball rolling on your needs!

I do refrain from diagnosing myself. Doctors often have to be quite definitive to me now to prove what they are telling me I have or don't have. I've been misdiagnosed too many times for me to just say 'ok'.

My WBC has been elevated since I was a young child. I've actually had doctors MAD at me for it!! **laughing** - like. . .what do they expect ME to do about it, huh? I think they get very frustrated when they can't figure out the puzzle. . .not everyone is HOUSE . . .and even HE kills patients every once in a while! :) What I don't stand for are docs telling me it's all in my head. Going there even for a moment gets them fired.

I hope you get the treatment you need. If your doc can't get over herself, I hope you are able to find a new one.

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):
  • 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.