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
      104,357
    • Total Posts
      920,528
  • Topics

  • Posts

    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
    • Hi there, I hope you're all having a good day! I'll be heading on a week-long Carnival cruise shortly and had a few questions: -What is the tipping protocol? I've prepaid gratuities, but feel like the food request will warrant something extra. Should I tip the headwaiter? Hostess? Regular waiter? Chef? Those cooking at, say, the sandwich or pasta bars? If so, how much is appropriate, and should I tip at the beginning of the cruise, the end, or split it up? -It looks like the main dining room will be closed during lunch hours on most days. Any recommendations on safe bets for midday meals? I'll be on the Carnival Sunshine, for what that's worth. Thank you so much for any information you can share!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined