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

Finally I Get Meet You All


WendyG

Recommended Posts

WendyG Explorer

Hi there I feel like I know some of you. I have been glued to this site for the last week but was unable to post. Here is just a little background I was diagnosed with Celiac in Jan of 03 after deliviering my son in October of 02 I was sick in the hospital and never got better. After loosing almost 50 pounds went to the dr and she tested me right away. I Did better after finding out I wasn't dying. I kinda... well I quit my diet after awhile and just lived with my symptoms which seemed to lesson. I would get bloated and sick after pizza but that was about all. I just learned that I am severly anemic.... iron stores are a 2 and hem is 7. I decided for myself and family to get better and stop hurting myself with food.

You all have been lifesavers I have had so many qestions but the longer I read on the borads the more answers I found. I am so happy to be here and thank you for all your knowledge and willingness to welcome new members.

I too thought the Fench Toast comment was funny, about not being able to taset the bread.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Hi Wendy, and welcome to these boards. I am glad you have come out of denial and are on the road to recovery by sticking to a gluten-free diet.

Is your doctor doing anything about your iron? You may not be able to absorb iron pills at this point and may need iron injections for a while until your intestines heal enough to just take the iron from your food.

You also should be tested for other nutritional deficiencies, like vitamin D, vitamin K, magnesium, calcium, vitamins B12 and B6, potassium. Those are notoriously low in people just diagnosed with celiac disease.

Also, are you still consuming dairy and soy? It would be best if you would eliminate those for at least a few months to give your intestines a chance to heal.

WendyG Explorer

Thank you so much, I will call on Monday. Now I am on suppliments. How do I know I am ready for dairy?

thanks,

w

Ursa Major Collaborator

You can try dairy after three to six months on a gluten-free diet. If you react, you shouldn't keep having it. Some people here took a year before they could have dairy again, but many are casein intolerant (not just lactose intolerant) and can't ever have it.

WendyG Explorer

Hi, forgive my ignorance but what is casein exactly? I just returned from Wall Mart and I am encouraged. I think I can do this!!!! I am working on adapting my favorite recipes. Any suggestions?

thanks,

w

Ursa Major Collaborator
Hi, forgive my ignorance but what is casein exactly? I just returned from Wall Mart and I am encouraged. I think I can do this!!!! I am working on adapting my favorite recipes. Any suggestions?

thanks,

w

Casein is the protein found in dairy. It is in all dairy, milk, cheese, yogurt, butter....... anything made from milk. And it also hides in a lot of processed foods, unfortunately.

So, when I say it would be better to eliminate dairy for a while, that is what I mean. ALL of it.

Wal-Mart seems a good place to start, I hear that in the States you can get a lot of gluten-free food there. And their brand is clearly labeled, too, no guessing.

confusedks Enthusiast

You need to do something about your iron! That is DANGEROUSLY low! :o I have to get iron IV's because mine gets that low sometimes (long story!)

With hemoglobin that low, you may need a blood transfusion! Mine was at 8 and they wanted to send me for one! You really NEED to follow up on this! :(

If you have any questions, you can PM me and I'll help you. This is seriously dangerous. ;):o I don't want to scare you, but that needs to be checked on and followed *closely.*


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



Celiac.com Sponsor (A8-M):



WendyG Explorer

Thanks for your concern I am working on this. Dr didn't was concerned but only told me to take 325mg twice a day. I am going to call on Monday to check to see if there are any other options. I am a mess and my hair is very thin... which is how I found out how bad my iron is :( I am a busy mom with three active children and need to take better care of me.

I will let you know what he says.

w

confusedks Enthusiast
Thanks for your concern I am working on this. Dr didn't was concerned but only told me to take 325mg twice a day. I am going to call on Monday to check to see if there are any other options. I am a mess and my hair is very thin... which is how I found out how bad my iron is :( I am a busy mom with three active children and need to take better care of me.

I will let you know what he says.

w

Let me know what happens. That is very worrisome. My Dr saw my hemoglobin which was at 8 and he totally panicked! They re-tested me and it had gone to 9 in about 7 days so I couldn't get a blood transfusion, unless I really wanted one. But, I ended up finding out I had zero ferritin (iron stores) so I had to go to a hematologist and he gives me iron IV's every once in a while.

You must be EXHAUSTED! I used to sleep almost 20 hours in a day! I can't imagine having 3 kids! :o

WendyG Explorer

My iron stores are 2. You know, I guess I have no idea who it feel to feel good. I just keep going....

so how do the iron Iv's work? does your hem go up right away? He hasn't mentioned a hematologist. I know I am not absorbing because my GI tract is so damaged from the celiac.... I am looking forward to feeling better.

confusedks Enthusiast
My iron stores are 2. You know, I guess I have no idea who it feel to feel good. I just keep going....

so how do the iron Iv's work? does your hem go up right away? He hasn't mentioned a hematologist. I know I am not absorbing because my GI tract is so damaged from the celiac.... I am looking forward to feeling better.

Iron IV's *do* raise your hemoglobin, right away. You may want to ask about them. The reason I went to the hematologist was because I took more oral iron than anyone should take in a lifetime and I still couldn't raise my numbers, plus it KILLED my stomach! Oral iron is very hard to digest/absorb, especially for a healing Celiac, like yourself.

I believe they use the Iron IV's mainly to raise all other iron numbers (there's WAY more that determine if you're anemic than just your hemoglobin and iron stores). I was going to have a blood transfusion because I had a tremendous amount of blood loss, so my Red Blood Cell count was also really low, which I don't think usually happens with anemia. Like I said, we didn't do that.

But, Iron IV's are usually given in a hospital setting, on an out patient basis. You go every day for usually 10 days and they start an IV, give you benadryl (to reduce the possibility of an allergic reaction...well at least my Dr ordered it) and then the iron. It takes a couple of hours. Not really a big deal. There weren't any negative side effects for me....just raised my iron. :)

You may want to ask your Dr if he suggests you seeing a Hematologist because you are concerned about absorbing iron while you're healing. (Does he know you weren't gluten-free for a while? Were you diagnosed with blood work? Or just dietary response?) Iron IV's just go right into the bloodstream. No need to digest anything, so your GI tract can be screwed up and you will still get the benefits. :)

WendyG Explorer

I had a positive blood test and then the endoscopy for a definite diagnosis in 2003. Thanks for the advice. I will call and talk to him on Monday and see what he says. Anything else I should be thinking/asking about?

w

Archived

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

  • 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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.