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. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    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

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.