Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Iron Defency Anemia & Iron Infusions
0

6 posts in this topic

I am q 29 year old female who has suffered from Iron Defency Anemia for 2+ years before finally being diagnosed with Celiac two weeks ago. My diagnosis was severe malnutrition due to Celiac. It has effected my B12, calcium and other nutrients as well. My only symptons of Celiac have been my nutritional defencies. No other GI symptoms.

I am slated for a bone density test this week, but my Iron Infusions are not set for another 2 months. I am feeling extremely exhausted, and can barely function, however they dont seem to feel like my iron infusions require fast tracking. Anyone else have such low iron and wait that long for infusions? How long did it take before your body started absorbing iron from food again? (FYI my iron has consistantly been at 1 for the last year + no improvement what so ever with large dose oral iron.)

Edited by KristenS
0

Share this post


Link to post
Share on other sites


Ads by Google:

I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

0

Share this post


Link to post
Share on other sites

Hi Kristen, I have had Chronic anemia all my life and I have been taking 325 mgs of iron 3 times a day and told to eat liver every night but I kept getting worse and worse. Finally went to a Nuerologist and she said I have Lupus on top of needing a blood transfusion. My GP Doc didn't think I needed anything else done because it was chronic. But I cant get the transfusion until I have my Ablation procedure on Thursday because of Endometriosis, heavy bleeding.

My going gluten-free only helped for a little while, like a year before I started going down hill again.

You've only found out 2 weeks ago. It will take a little while to start feeling better. Try to be as strict as you can, for some it can take just a couple of weeks for some they didn't start feeling better until a year in. It took me 6 months before I started feeling better. Not to mention you may go through withdrawals which will make you feel worse.

0

Share this post


Link to post
Share on other sites

I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

Hi Diana! Thanks for your reply.

My B12 is non exhistant as well. My extreme fatigue didnt really start untill the B12 dropped (I lived with the anemia for almost 2 years before it really took its toll.) Theres quite a few things I am low on, and am waiting for my appointment with my deitition to discuss how to get the rest of my nutrients up.

I wish my iron infusions were happening sooner, but hopefully I can get other things up in the interim and feel a bit better. I havnt had any withdrawl that I can discern, but its hard to tell as my symptons before gluten-free were fatigue, lethargy, irritability, mood swings and forgetfull/foggyness, so in essence I am a bit used to that already! Its hard not having any GI symptoms. I am being super anal retentive about contamination and such, but still fear that I am injesting unknown gluten and harming my body. I dont want to be come a person whos afraid of food!

0

Share this post


Link to post
Share on other sites

Hi KristenS,

I went gluten-free the end of October and life has been a roller coaster ride ever since. One good thing is the anxiety has lessened since maintaining the gluten-free diet (I've been glutened 5-6 times since going gluten-free and that has made it frustrating and difficult).

My hemoglobin was at 7.9 in '09 and I received iron transfusions (10 w/n about a month's time which is ENTIRELY too many!). Really, respect your body and don't try to push them through. That was a mistake. The first infusion was done in the doctor's office and after that, the hospital because my body reacted to the fast drip. Be sure to wait 30 minutes in the doctor's office after your first infusion so that you're not tearing down a freeway and have a reaction (like I did).

The iron infusions did not hold my hemoglobin at a normal rate for long. I changed hematologists and the new doc put me on oral iron which worked better. I stopped taking it in May '12 because I was on anti-vitals for shingles. My Ferritin & hemoglobin both declined.

I just got my lab results back since going gluten-free. My Ferritin is on the uphill climb with no vitamin support which seems to be a miracle.

I have started taking Floravital (liquid iron) from the health food store instead of going back to the Rx which I hope will boost my Ferritin to a desirable level.

I still do not feel well. There have been a few days of glory once I get pretty far past the glutening symptoms but I keep having trouble (w/CC?) and have stopped eating in restaurants or other people's food altogether. This is my plan for the next three months. This is my 11th day in from being glutened for a week (thought I'd go for testing but became too sick to continue with that plan). The longest I've made it is 15 days. Dairy has been eliminated from my diet and will reintroduce in July. It seems to give me symptoms as well. I also stay away from soy, MSG, GMO sources...

There's a great app called NxtNutrio that scans barcodes and tells you if any "offenders" are in the product. I don't know what I would have done without this app quite frankly. My house feels very safe as nothing comes in that isn't scanned (if it has a barcode, that is).

I'm relieved to see the post above saying that it took quite a while to feel better after going gluten-free. Like I said, the anxiety is better but I guess I have quite a ways to go still. With cold & flu season in swing, it's difficult to know how I'm doing.

Hang in there and good luck with your infusions.

Cali

0

Share this post


Link to post
Share on other sites




:) (accidentally posted twice so here's a smiley face for you)
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,354
    • Total Posts
      920,511
  • Topics

  • Posts

    • Welcome!   You were smart to think about cross contamination.  Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better.  The learning curve for the gluten-free diet is steep.  It is better for you to get everything down before letting others feed him.   When I was diagnosed, my hubby had been gluten free for 12 years.  I thought I knew the drill and converted right over to those gluten-free goodies I baked him.  Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage.  So, additives like Xantham gum made me think I was getting glutened, but I was not.  So, again, try to stick to naturally gluten free foods that are less processed for a while.  When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! )   Here are some great tips from out Newbie 101 thread:  
    • I have the same problem. Was told it was psoriasis but no treatments worked even injections. I was daignosed celiac in may, and noticed a year ago the palm of my hand would itch intensely then get small blisters. I believe they are both dh. Have been gluten-free since diagnosis but still have issues with both areas. Thankful digestive issues cleared but would love to know how long before they clear up? I hope we both get feed back and best wishes to you!
    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,423
    • Most Online
      1,763

    Newest Member
    Kimmieellis
    Joined