Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,788
    • Most Online (within 30 mins)
      7,748

    Cookieldy
    Newest Member
    Cookieldy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • K6315
      Hi Lily Ivy. Thanks for responding. Did you have withdrawal? If so, what was it like and for how long?
    • trents
      Welcome to the forum, @Doris Barnes! You do realize don't you that the "gluten free" label does not mean the same thing as "free of gluten"? According to FDA regulations, using the "gluten free" label simply means the product does not contain gluten in excess of 20 ppm. "Certified Gluten Free" is labeling deployed by an independent testing group known as GFCO which means the product does not contain gluten in excess of 10 ppm. Either concentration of gluten can still cause a reaction in folks who fall into the more sensitive spectrum of the celiac community. 20 ppm is safe for most celiacs. Without knowing how sensitive you are to small amounts of gluten, I cannot speak to whether or not the Hu Kitechen chocolates are safe for you. But it sounds like they have taken sufficient precautions at their factory to ensure that this product will be safe for the large majority of celiacs.
    • Doris Barnes
      Buying choclate, I recently boght a bar from Hu Kitchen (on your list of recommended candy. It says it is free of gluten. However on the same package in small print it says "please be aware that the product is produced using equipment that also processes nuts, soy, milk and wheat. Allergen cleans are made prior to production". So my question is can I trust that there is no cross contamination.  If the allergy clean is not done carefully it could cause gluten exposure. Does anyone know of a choclate brand that is made at a facility that does not also use wheat, a gluten free facility. Thank you.
    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
    • Manaan2
      I realize I'm super late in the game regarding this topic but in case anyone is still reading/commenting on this one-does anyone who is especially sensitive have their personal observations to share regarding Primal Kitchen brand?  My daughter was diagnosed almost 2 years ago with celiac and within 6 months, her follow up labs were normal and a year later vitamin levels significantly improving, but we are still battling GI symptoms; particularly, constipation, so much that she has been on MiraLax every day since she was 3.  We've managed to get her down to a half cap every other day but without that, she continues to have issues (when she has a known, accidental ingestion unfortunately it takes a lot more MiraLax and additional laxatives to help her).  I was searching for something else and found this and am wondering if anyone has any specific comments regarding Primal Kitchen.  I feel like we are so incredibly careful with diet, logging diet and symptoms to look for patterns (we've had multiple dieticians help with this piece as well), not eating out, contacting companies and of course, there is always room for improvement but I'm running out of ideas regarding where her issues could be coming from.  Even if the Primal Kitchen is contributing, I'm sure it's not the only thing contributing but I can't help but think there must be handful of things that are working together and against her.  The ingredients list distilled white vinegar, but also white wine vinegar and balsamic, then "spices" which I'm always cautious about.  However, after contacting the company, I felt more comfortable allowing her to consume their products but over time I've realized that the front-line customer service support people don't always provide the most accurate of information.  Thanks for reading to anyone that does.   
×
×
  • Create New...