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Finally I Get Meet You All

WendyG

By WendyG
in Meet Up Room

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WendyG Explorer
WendyG
Posted

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.

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Ursa Major Collaborator
Ursa Major
Posted

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.

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WendyG Explorer
WendyG
  • Author
Posted

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

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Ursa Major Collaborator
Ursa Major
Posted

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.

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WendyG Explorer
WendyG
  • Author
Posted

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

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Ursa Major Collaborator
Ursa Major
Posted
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.

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confusedks Enthusiast
confusedks
Posted

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.*

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WendyG Explorer
WendyG
  • Author
Posted

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

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confusedks Enthusiast
confusedks
Posted
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

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WendyG Explorer
WendyG
  • Author
Posted

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.

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confusedks Enthusiast
confusedks
Posted
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. :)

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WendyG Explorer
WendyG
  • Author
Posted

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

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