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

Anemia And celiac disease - How Long To See Improvement?

sammie210

Recommended Posts

sammie210 Newbie
sammie210
Posted

I've not been officially diagnosed with celiac disease but I've been eating gluten free for a month. For the last 18 months, I've had to have IV iron infusions and transfusions because of very severe iron deficiency anemia. All GI tests found no bleeding and I'm post menopausal by 10 years, so there's no bleeding there, either. Once the docs figured out there was no abdominal bleeding, no one was trying to find the cause of my problems: Nexium for the reflux, live with the stomach pain, and get the infusions for the anemia but don't worry about WHY. :angry: So, I did my own research into all my weird symptoms, and the one thing that kept coming up was celiac disease and so I'm going gluten-free.

I'm in the middle of a series of infusions right now and I'm wondering, if anyone has been through this, if going gluten free helps, how long will it be before I see results in my blood tests. Will my body already start absorbing and using the iron to produce red blood cells?

I'm sorry now that didn't insist on the celiac disease tests before I stopped eating gluten, but now that I have, I really don't want to go back on it to get an official diagnosis. The two times I've goofed and eaten some gluten, I was in pretty bad pain. Any real reason why I should go back on it, or can I just keep eating gluten free and not worry about a diagnosis.

Any inisight would be greatly appreciated and thanks in advance, :D

Sammie

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi and welcome :)

I was anemic before I was diagnosed--my hemiglobin was 8. Oral suppliments wern't making a difference, but I was never given iron infusions.

Six months after beginning the gluten-free diet, my hemiglobin was 14.6. It's been fine ever since, I've been gluten-free for 3 years.

sammie210 Newbie
sammie210
Posted
  • Author
Hi and welcome :)

I was anemic before I was diagnosed--my hemiglobin was 8. Oral suppliments wern't making a difference, but I was never given iron infusions.

Six months after beginning the gluten-free diet, my hemiglobin was 14.6. It's been fine ever since, I've been gluten-free for 3 years.

Thanks for the info and the welcome! My hemoglobin was down to 4.9, which is when they finally decided to do a transfusion. The hemotologist said it's a wonder I wasn't in a coma! Even after all the infusions, the highest it's gotten up to is 11.8, which is still below the reference range. :( I sure hope being gluten free helps. I'm tired of being sick and sick of being tired!

TipTip Newbie
TipTip
Posted

Hello!

I too had unexplained anemia from age 5 until this past January - so about 23/24 years. Never resolved with iron supplements - in fact rarely even got a bit better. This January, went in for well woman physical and the Hemoglobin was around a 5 and they were talking about immediate iron transfusions, which I adamantly did not want - so they tried the endoscopy first and found the celiac.

I have been slightly remiss in getting my blood drawn again recently, but I can say after five months on the diet, I truly do feel better - I don't need the sleep I used to, I don't get as fatigued as I used to and the weird blotchy, gray skin has gone away for the most part as have the circles around my eyes and my hair and nails are better - I do believe my iron levels are good now.

ShayFL Enthusiast
ShayFL
Posted

Yes, my dark circles are disappearing too. :)

munchkinette Collaborator
munchkinette
Posted

Same here- anemic for 3 years, nothing helped. I did my own research and found the diet. I never got a biopsy and some of my tests came out negative. I feel better when I can stick to the diet.

Ab-Normal Rookie
Ab-Normal
Posted

I'm another anemic celiac...

1) My low # so far has been 9. I can't imagine what 4.9 feels like. Wowzers. :o

2) I am a very lucky nerd; it was the hematologist/oncologist who sent me to the gastroenterologist for the endoscopy after my first visit. (Of course, she was thinking cancer, which made hearing celiac instead almost a relief.)

3) Six months, you say? I can make it that long.

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

Celiac.com Sponsor (A8-M):


sammie210 Newbie
sammie210
Posted
  • Author
I'm another anemic celiac...

1) My low # so far has been 9. I can't imagine what 4.9 feels like. Wowzers. :o

2) I am a very lucky nerd; it was the hematologist/oncologist who sent me to the gastroenterologist for the endoscopy after my first visit. (Of course, she was thinking cancer, which made hearing celiac instead almost a relief.)

3) Six months, you say? I can make it that long.

4.9 feels REALLY bad. I worked and slept. That was it. I couldn't walk across the room without getting winded. My mouth was full of sores. My heart beat so hard and so fast, it would actually wake me up from a sound sleep. I really thought I was going to have a heart attack. It was amazing when I got the transfusion. They gave me 3 units and by the time the first one was done, I could actually feel a difference!

So, as you can guess, I'm REALLY hoping and praying that eating Gluten Free makes a difference. We'll see in another 6 months I guess! :)

cruelshoes Enthusiast
cruelshoes
Posted

Pre-DX I was anemic enough to require frequent iron infusions. I was like you - the doctor said "why are you walking around? you should be passed out!" It would get to the point where I could not walk up a flight of staris without holding on to my husband's arm and stopping in the middle to rest. Since I went gluten-free, I have had iron in the normal range and have not needed an infusion in 3 years.

jerseyangel Proficient
jerseyangel
Posted

I can't imagine 4.9--at 8, I literally couldn't keep my job as I had to stand a lot. I kept passing out. I tired easliy, and was pale as a ghost--my husband once said back then that I wasn't pale, I was transparent. :o

  • 3 weeks later...
marie06 Rookie
marie06
Posted

Have you been tested for thalassemia? Im hoping that if you are in the care of a hematologist he would have checked, but one never knows.

mommida Enthusiast
mommida
Posted

There are many things that can cause anemia. You still need tests to find out what is causing the anemia. Since you've started the gluten free diet - any tests for Celiac will be inconclusive. Pernicious anemia is connected to Celiac disease. Find a doctor that will work with you to find out what is causing such severe anemia.

Good luck. :)

For your question "How long until you see an improvement?" The rates are variable. It could take up to a year for you to start feeling better. If you were suffering from extreme "D" you could notice improvement is one week.

Salem Rookie
Salem
Posted

I quit gluten May 1/08. My iron count had been slightly low for years, in late April it was 5. Everyone I've told that to gives me a look like it couldn't have been possible. I felt "fine" (other than my gluten-induced hell). I get tested again August 1st, we'll see if the iron supplements have helped. I do feel so much better and have more energy, but is that because I'm gluten-free or because of the iron?

VioletBlue Contributor
VioletBlue
Posted

It took me about six months being gluten free to see an improvement. No infusions, just oral supplements and an odd craving for pate that I indulged, go figure. Going gluten free is the best treatment though. It allows the damaged villi to heal so they can start absorbing the iron you consume.

Thanks for the info and the welcome! My hemoglobin was down to 4.9, which is when they finally decided to do a transfusion. The hemotologist said it's a wonder I wasn't in a coma! Even after all the infusions, the highest it's gotten up to is 11.8, which is still below the reference range. :( I sure hope being gluten free helps. I'm tired of being sick and sick of being tired!
hawaiimama Apprentice
hawaiimama
Posted

My ferritin was 2 at one point and all I was told to do was take more iron. Doc didn't believe me that the stupid iron pills were doing NOTHING for me. I was so anemic I had no color at all the the inside of my eyelids.

I'm waiting for the boost out of anemia too. I'm hoping the diet with the iron pills finally does something in that dept

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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.