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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Anaemia Caused By Malabsorption - How Long Does It Take To Start Absorbing It After Going gluten-free?


KCG91

Recommended Posts

KCG91 Enthusiast

I was badly anaemic at diagnosis (blood iron levels 3gl/l and transferrin saturation 3%) and have been taking iron supplements to try and correct this (210mg ferrous fumarate 2x daily). I'm fed up with the supplements as they give me bad C but if I miss even one or two tablets I really feel it. Has anyone else been anaemic at diagnosis and eventually come off supplements? It would really help me to hear other people's experiences (I know it'll be different for everyone) because after three months gluten-free my body doesn't seem any more able to absorb iron - I hadn't expected a total recovery yet but I'm surprised by how bad missing a tablet or two makes me feel. Many thanks! 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cristiana Veteran

One thing to consider might be trying ferrous gluconate - it is much kinder on the stomach.  I had awful trouble with other iron supplements but find that taking a couple of gluconate tablets with water on an empty stomach first thing, an hour before eating, and things are pretty much normal in that department!   I started supplements six months before my DX as they thought it was women's stuff that was causing the anemia (level was around 7) then I think from memory around 19 at DX in May 2013.   It has gone up to about 30 now and my consultant said I should be able to come off supplements in the Spring if things continue as they are

.

Link to comment
Share on other sites
1desperateladysaved Proficient

I had 30 years of symptoms.  My anemia went away between a year and 18 months gluten free.  My red blood cells became normal at that time.  I feel digestive enzymes, supplements, and IgG helped in healing along with the gluten free diet.  I also dealt with a major number of  food intolerances.  I have never had trouble with the natural iron supplements that I take.  I currently am using reacted iron by Metagenics.

 

If you will optimize the nutrients you are getting in your diet/supplements, you will heal as quickly as possible, whatever that means in your case. Digestive enzymes helped in my trek.   I can tell you that it feels really good to lose the anemia and get more oxygen to every cell in your body!

 

I have also been using functional exercise in the form of sit-ups, push ups, and squats to help my body heal.

 

D

Link to comment
Share on other sites
KCG91 Enthusiast

Thank you Cristiana - I actually have some ferrous glucanate lying around so I will try it. Do you have any idea of the equivalent dose? 

Desperate lady you are so right about the oxygen thing - I run a lot and nobody could understand why I could run long but not fast (which requires your muscles to use a lot of oxygen efficiently). Now I feel like I want to run with a big sticker on my head announcing that it isn't my fault and that they should watch out over the next year or so :D 

Thanks for the stories guys - I am having an impatient-with-my-body phase (and it's the anaemia which affects my daily life the most) so it really helps to know that a year to 18 months isn't unusual. 

Link to comment
Share on other sites
kareng Grand Master

I was extremely anemic.  Taking the iron correctly is important. Follow the directions. Take with vitamin C or juice.  It needs to be the only thing in your stomach for a period of time.  Never eat or take calcium or another medication with it.  You need B12 to help your system use the iron properly.  Get the sublingual B12 -  it bypasses the intestines.

Link to comment
Share on other sites
anti-soprano Apprentice

I have been gluten free for 17 months and am still taking the supplement.  But given Kareng's advice- maybe I'm just not doing it right!  I'll try those suggestions.

Link to comment
Share on other sites
cristiana Veteran

Thank you Cristiana - I actually have some ferrous glucanate lying around so I will try it. Do you have any idea of the equivalent dose? 

Desperate lady you are so right about the oxygen thing - I run a lot and nobody could understand why I could run long but not fast (which requires your muscles to use a lot of oxygen efficiently). Now I feel like I want to run with a big sticker on my head announcing that it isn't my fault and that they should watch out over the next year or so :D 

Thanks for the stories guys - I am having an impatient-with-my-body phase (and it's the anaemia which affects my daily life the most) so it really helps to know that a year to 18 months isn't unusual. 

 

 

Hi.  I'm in the UK so the dosage is in mgs - but my box if ferrous glucanate is labelled 300mg and I take two a day.  The instructions are as follows...

 

"Adults (including the elderly) and children over 12 years

For the prevention of iron deficiency: take two tablets daily

For the treatment of iron deficiency: take four to six tablets daily in divided doses"

 

You do have to be careful with iron, as has been pointed out here, because you can take it alongside things that actually stop its proper absorption.  Also, I think it is important to have levels monitored as I gather too much iron is a problem too.   Hope that you are finding it easier on your tummy. 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I have been gluten free for 17 months and am still taking the supplement.  But given Kareng's advice- maybe I'm just not doing it right!  I'll try those suggestions.

 

 

 

Open Original Shared Link

Link to comment
Share on other sites
  • 2 weeks later...
KCG91 Enthusiast

Thanks kareng, I followed those and it obviously began to work better because it made me very C! (Enter flaxseeds). Thanks cristiana, too, I'm seeing my doctor next week for my three month check up so I'll try and get some out of him. 

Link to comment
Share on other sites
pricklypear1971 Community Regular

I have issues raising my iron, also.

I didn't know this, but tea and coffee (without milk) can interfere with iron absorption when ingested within an hour or so around a meal/supplament.

I started taking my iron last thing at night (stomach is almost always empty) with a small amount of oj or lemonade. I hope it's helping.

Oddly enough, I am getting a crash course in iron, iron content of foods, absorption, etc. I admit to being surprised at what I'm learning....

Link to comment
Share on other sites
somanyquestions Newbie

I am responding to someone that sent info about RBCs and anemia in celiac disease. My bloodcells were so out of whack IDK how I didn't keel over or something. MCV, MCH all wrong and I had 25% teardrop cells and 25% ovalocytes. Low D, low wbcs, anemic and nothing helped. I'm still anemic now and my heart pounds and I'm extremely short of breath doing minor normal things. Like I can't walk but about half a block or stand long enough to do dishes etc. Much of the rest of my bloodwork is or has been abnormal. Sodium goes low on me alotand almost had to be hospitalized for that. It's good to know finally what's going on.

Link to comment
Share on other sites
cyclinglady Grand Master

I am responding to someone that sent info about RBCs and anemia in celiac disease. My bloodcells were so out of whack IDK how I didn't keel over or something. MCV, MCH all wrong and I had 25% teardrop cells and 25% ovalocytes. Low D, low wbcs, anemic and nothing helped. I'm still anemic now and my heart pounds and I'm extremely short of breath doing minor normal things. Like I can't walk but about half a block or stand long enough to do dishes etc. Much of the rest of my bloodwork is or has been abnormal. Sodium goes low on me alotand almost had to be hospitalized for that. It's good to know finally what's going on.

It might have been me.  I was stating that, in my case, Thalassemia a genetic anemia that I've had my whole life and peri-menopausal issues/thyroid (heavy bleeding), caused my doctors to over look Celiac Disease for years (decades).  I actually had that second iron-deficiency anemia and in my case, taking iron and being able to absorb it (and my other meds) by being on a gluten free diet has helped tremendously!  

 

Are you under a doctor's care?  Your anemia sounds severe and blood transfusions are one form of treatment.  Have you been diagnosed with Celiac Diease?  If you are self-diagnosed and just starting a gluten free journey, it will take months to years to heal and to properly absorb nutrients.    As others posted on this thread, their particular anemias were resolved in a few months to a year or longer.  A low white blood cell count could be many things and I'm not a doctor so, I can't comment on your health issues, but only share a bit of mine.

 

I hope you start feeling better soon and that you get to the bottom of your illness!

Link to comment
Share on other sites
somanyquestions Newbie

I am under a doctors care and no I don't know what I'm doing, and being disabled I don't have access to a lot if medical care I need. Most things I've had to learn by trial and error. My reactions to wheat go back to childhood and I have been aware of the anemia since 2010 when I stopped being able to tolerate any kind of physical exertion. What treatment is available for Celiac besides Gluten-Free??? Milk, eggs, and a few other things upset me. .too. I have such bone and muscle pain (fibro) that I am very discouraged at this point. My daughter has gotten involved and is going to help me

Link to comment
Share on other sites
cyclinglady Grand Master

So, sorry that you are feeling so bad!  Fibro is awful -- my mom has it and I hope that I don't ever get it…….

 

The only cure for Celiac Disease or a gluten intolerance is strict avoidance.  I highly recommend that you review the newbie section under coping with celiac disease located on this forum.  Here's the link:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I suggest that you learn about supplements on this forum.  Everyone has so many good suggestions.  I started taking calcium after I had a vertebrae fracture a few months after my celiac disease diagnosis.  A bone scan revealed osteopenia and my doc thinks I have osteoporosis in my upper back (I'm just one point away from a full-blown osteoporosis diagnosis anyway).  With strictly adhering to the diet (a few accidental glutenings and intestinal healing, my bones are no longer hurting.  I used to have to get out of bed because my hips and rib cage would hurt from laying down.  My mattress is awesome, so it must be bone healing not much, but enough.  That's just a guess!

 

I also take iron (advised by my doctor) for my iron deficiency anemia.  That is better too.  I'm finally absorbing it.  Again, intestinal healing.  I'm on hormone replacements even though I'm post menopausal but then I wanted to try building bone without bone drugs (last resort) and cancer does not run in my family.  Mostly autoimmune disorders!

 

I take a general multi and some B-12 and magnesium which has helped with the tingling and muscle aches.  That's not all gone, but I understand that neuropathies difficult to resolve.  

 

I am glad that your daughter can help you.  It's very difficult to go at this alone (but you have all of us on this forum).  Even though my husband has been gluten-free for 13 years and he can sympathize, it's still a difficult journey to start.  But, it does get better!  celiac disease has taught me patience, an attribute I am highly lacking!  

 

Take care.  

Link to comment
Share on other sites
somanyquestions Newbie

Thank you cycling lady

I am on supplements D,B12, magnezium, and was on iron for a long time. I am still anemic but not as bad, partly because I realized about 6 months ago NY problems were related to food and stopped eating processed food and fast food and anything with more than a few natural whole ingredients. It was a good change. It did not help the diarrhea or fibro or the severe bone pain in my thighs and upper arms or the confusion / brain fog. I will read the newbie stuff because I know I need to be taking calcium, folate, and a general multivitamin /mineral and hope I can absorb them. Thanks for your reply and support

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,502
    • Most Online (within 30 mins)
      7,748

    Nadaly100
    Newest Member
    Nadaly100
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...