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

Newly Diagnosed


kschmitz

Recommended Posts

kschmitz Newbie

Hi, I have recently been diagnosed with celiac disease. I have been treated for various symptoms for years, anemia, GERD, early onset osteoporosis, low thyroid, etc; but finally know the source of these problems. Unfortunately, I have been given very little help for managing a gluten free life. I started with a hospital dietician who knew less than I have learned from forums like this. In addition, I asked my pharmacists about the prescriptions and over the counter medications that I must take, and they had no answers for me. I e-mailed several pharmaceutical companies about their products and have received no replies. Please help!! I am severly anemic and need an iron supplement. Can you recommend a gluten free one? What about a calcium and Vitamin D supplement? Is Viactive ok? What about a multivitamin? Where can I find out information about prescription medicines - Nexium, Levoxyl, Fosomax? Thank you.


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



Celiac.com Sponsor (A8-M):



clanning Rookie

I am also new to this forum but do have a few answers. Nexium is gluten-free, not sure about the others. Your pharmacists should be able to give you the drug companys 800# to let you call to see if the others are gluten-free. I looked at Viactive the other day, I don't think that it is but you should be able to call and find out. Also, you probably can take all the iron tablets you want but you will not be able to absorb the mineral. Been there done that. Took 1000 mg a day, no change in my iron levels or anemia. I just recently had a iron infusion. Most people don't have a reaction to the infusion but I did. If your WBC, Hgb, Fe, and other labs are that low... your doctor should recomend an iron ifusion. You do it as an outpatient takes about 8 - 10 hrs.. Its been 7 months since mine and my labs are still good.

The best advice I've ever received is from this group. They've sent me receipes and encouraged me to go buy a gluten-free cookbook, I did.

I'm not sure where I got it but I printed of a list of forbidden ingredients and one of allowed. The forbidden is a lot longer than the allowed.

Try whole food stores, nature's pantry, Hy-Vee if one around. You can get a big book from the Celiac Association that will give you a list of all food products in grocery stores that are gluten-free. (they tell you the grocery stores) My local store (Hy-Vee) bought the book for me to keep me as a customer.

It's very hard as an adult to change your diet. Very depressing at times. But all you can do is try. Read a lot of the other postings here and you'll get more info than you could ever imagine.

Charlotte

jendenise Rookie

Slow FE slow release iron supplements are on the gluten-free medications list. I was in your exact shoes for so long, I am so sorry that you have to deal with this kschmitz! Fortuantely now that you know what is the problem you can fix it. First thing: try glutensolutions.com they have Gluten free vitamins. Also, on the Celiac.com home page is the Celiac.com Site index print out the Safe & Forbidden Lists for Gluten-Free Diets and make it your "Diet Bible", there's also a list of gluten free medications under mainstream gluten free products, print the entire list and keep it in a 3 ring binder w/ other printouts. Basically just check out the site index and print everything out and keep it close at all times.

jendenise Rookie

Viactive IS glutn free

kschmitz Newbie

Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.

judy04 Rookie

Hi K,

Just wanted to add that Levoxyl is gluten free.I took a calcium

supplement from Freeda vitamins, just do a search and you will

find it, it was gluten free but bothered my stomach so I

quit taking it. If you have anymore questions let us know.

This board has been a godsend for me.

hthorvald Rookie

Does anyone know if the iron supplement, Ferro-Sequels, are gluten free? I called the company and they said it is, but my stomach is always upset. Any other recommendations for getting the iron into me are greatly apprecaited.

Thanks in advance.


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular

Iron can be very harsh on your stomach to begin with. If the company says it is gluten-free, it most likely is. I would bet it is just the iron giving your problems.

Other ways to get iron are drinking some orange juice or other vitamin C filled drink along with eating a piece of iron filled meat like beef. The vitamin C helps with the absorbtion and breaking down of the iron. You might also give that a try.

Hope it helps!!

-Jessica :rolleyes:

hthorvald Rookie

Hmmm. Maybe that explains my upset stomach. I had severe anemia, which is why I was tested for celiac disease, and told to take these Ferro-Sequels and start a gluten-free diet. I have assumed all this time that my sour stomach was due to the diet change and that I was doing something wrong - maybe not eliminating all glutens.

I'll take your advice about the Vitamin C, because I want to be sure I'm getting enough anyway - especially with cold and flu season around the corner. I'll also check to see if there is a liquid form of iron that might be a little gentler on my tummy.

By the way, I've just had a blood test revealing that I'm not anemic anymore, but my iron stores are still low. So, I have to continue taking the iron at least for 6 months or so.

Thanks for your input, Jessica. Have a great day.

lovegrov Collaborator

If you like liver it has tons of iron.

richard

hthorvald Rookie

You know, when I was a kid I was always anemic (I guess I know why, now) and my mom force fed me liver, chicken liver, raisins, spinich, and anything else that contained iron. Being from England, it was all fried - except for the spinich, it was just over cooked and slimy. So, you can imagine how I feel about liver :)

However, raisins have resurfaced in my diet, as has spinich - in the form of salads, not cooked, but I doubt liver will ever pass through these lips again. Curiously, my mom still fries up a mean helping of liver and onions. Yum!

Helen.

babiesatemydingo Newbie

if you fry food in cast iron pans you will also get some amount of iron in your diet just by using that type of pan.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,868
    • Most Online (within 30 mins)
      7,748

    Tess24
    Newest Member
    Tess24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
    • Scott Adams
      I am so sorry you're going through this. It's bad enough to fight for a diagnosis and manage this disease, but to have your partner use it as a weapon against you is truly devastating. What you're describing isn't just a lack of support; it's abuse, full stop. Controlling your food and money is cruel, and his pleasure in your misery is chilling. Please hear this: the kindness from that woman at the food pantry is what you deserve. It's a glimpse of the real world, where people care. You deserve to eat, to heal, and to have peace. His actions are the biggest barrier to your health right now, and you are not broken—you are surviving in an impossible situation. Don't give up on that lifeline you've found.
    • Colleen H
      Thank you.. Christina My anxiety is through the roof.  I think it was from eggs.  I really don't know because my eyes feel sore. Like I'm allergic to them.  I was defient in B12.   My heart is pounding and it won't stop.  Not sure what to do.   I don't have much support other than this forum.    Colleen 
×
×
  • 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.