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

Gluten Free, Healed, Yet Becoming Increasingly Anemic?


DreamWalker

Recommended Posts

DreamWalker Rookie

Anyway, I suppose the title explains the gist of my topic. I've been gluten free since the beginning of Oct '08 and all my other vitamin deficiencies have cleared. Actually, my B12 came back too high last time and my calcium & vit D are peachy. However, my ferritin & RBC keep dropping (at least it explains the thigh bruises that will not leave) & my MCV keeps climbing (but I was told this is normal). It was a doctor at student health that wanted to focus in on the MCV but I'm no longer registered so I can't head back in to get her opinion. My GP's sub keeps thinking I'm not taking my supplements yet I am + I'm drinking an iron-infused nutritional shake 3+ times per day. But my iron keeps dropping. I've gone over my diet and if there's hidden gluten it's coming from Merlin's hat. Anyway, my GP isn't back in town for another week & I usually refuse to see subs (far too many bad Dr experiences) so this was a one-time exception. Weird thing is, the sub said I had a hypotensive black-out & thought it was a medication interaction. I doubted it as I've been on this particular med before without issues. Anyway, I had another one (this was weeks ago) after that initial episode. So, obviously, she was mistaken. I looked it up & it seems to correlate with anemia.

My GP admits he's stumped but is open to whatever ideas I come up with or referring me to someone who may know what's going on if he knows what type of doctor to refer me to in the first place. I'm on the wait list for a gastro-specialist (ironically, for a completely different issue) & my appt is right around the corner but I'm starting to wonder if this is gastrointestinal-related to start with. For instance, I've been asthmatic since I was a kid & am on spirivia, singulair, pulmicort, xopenex, and zyrtec yet the mucus never leaves - I just stop coughing if I remember to take my scripts. And during my EGD there was diffuse mucus throughout my stomach. Also, when I had my gallbladder removed it turned out to be chronically inflamed (as suspected) yet it too had a mucus problem. (Cholesterolosis/Strawberry gallbladder.)

If I weren't absorbing other vitamins, I'd wonder if my gut was just clogged with mucus impeding my ability to absorb iron. Yet, maybe there's something specific about iron I'm unaware of. Once again, no gluten in my life. Any insight or suggestions?

Side notes:

1) The issue I've been referred to the specialist for is PCS (postcholecystectomy syndrome). However, my GP said he had never heard a case like mine before yet was very concerned. (I was brought into the doctor by a friend of mine who witnessed an event that I can barely recall.) I'm unsure if that has any relevance. I was considering posting this in my previous thread but it seems to be a separate issue. At least that's what the sub-doc said.

2) With the gluten free diet, I found myself barely needing asthma-medications. However, I caught a mild cold & it was just like the old days - congestion, breathing issues, feeling faint/dizzy (dyspnea), and the chronic, mucusy cough I've had since I was eleven returned.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Have you tried dairy free? Maybe just lactose free?

All those meds, are you sure they are all gluten free? Do not go by some list on the internet, I find those aren't updated enough, and they do not cover the spectrum of generic drugs. You have to call the individual generic labs. I learned the hard way. www.glutenfreedrugs.com still lists Xanax as gluten free...I found out the original Xanax was never gluten free, and most of the generics aren't either. Once I finally found a gluten free Xanax, my symptoms went away.

My ferritin was reaching anemic levels, and I started taking Thorn Ferrasorb...my levels are rising.

Good luck.

jkr Apprentice
Have you tried dairy free? Maybe just lactose free?

All those meds, are you sure they are all gluten free? Do not go by some list on the internet, I find those aren't updated enough, and they do not cover the spectrum of generic drugs. You have to call the individual generic labs. I learned the hard way. www.glutenfreedrugs.com still lists Xanax as gluten free...I found out the original Xanax was never gluten free, and most of the generics aren't either. Once I finally found a gluten free Xanax, my symptoms went away.

My ferritin was reaching anemic levels, and I started taking Thorn Ferrasorb...my levels are rising.

Good luck.

I thought all generic Xanax was gluten free. I'll have to check with the company. Thanks.

trents Grand Master

Are you taling a folic acid supplement? Folic acid supplementation will mask a B12 deficiency and B12 deficiency results in pernicious anemia, as you probably know.

Your post was difficult for me to follow because it kind of rambled but why do you say the low ferritin and rbc explain the bruises on your thigh that won't go away? That sounds like a clotting issue to me, not an anemia issue.

Have had a hemacult (blood in stool) test done? Are your periods regular and do you have excessive, prolonged bleeding with them?

DreamWalker Rookie

Heh. Yeah.... I ramble a lot. It's difficult for me to follow a full train of thought. I think it's the sleep deprivation (pain) coupled with anemia. My body went haywire when they removed my gallbladder 3+ months ago.

Anyhow perhaps a list will be a bit more organized: :)

- I don't eat dairy or soy.

- All the medications are gluten-free. I called the companies themselves.

- The doctor told me the bruises were due to my iron-deficient anemia. They're about the size of my hand & dark purple.

- As for periods, I'm unsure if I'd know what an abnormal one was. Until the gluten-free diet, I never had a "normal" period. I'd have a 1-2 week space between a few periods then it'd suddenly vanish for 3-4 months. Also, they'd last anywhere from 3-7 days with rare exceptions. About two years ago, I literally had a period (heavy) for a month. I didn't have insurance at the time so I couldn't head in to the doctor. Although, that was an isolated incident & before I was gluten free. My last period lasted around 6 days yet didn't seem out of the ordinary. They come ever 3-6 weeks now.

- I had a stool test to check for parasites in July.

- Folic acid is in my Vit B supplements. Although, my B12 came back high. The doctor said to cease taking Vit B12 yet I'm exhausted without it.

To those who found gluten in their medications this site has a gluten-suspect list yet it's a bit outdated:

Open Original Shared Link

I still check with manufacturers on gluten-free status though.

Thank you for reading my rambley posts. :lol:

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.