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

Overwhelmed


mnbrave

Recommended Posts

mnbrave Newbie

HI,

I was just diagnosed with severe ( actually she said profound) iron and vitamin D deficiencies, malabsorption syndrome probably due to Celiacs. I was told to eat red meat 3 times a week, take prescription strength vitamin D and become wheat and gluten free. I am so confused from all I have been reading. It's not all black and white. There are many shades of gray. Is everything with artificial coloring and flavoring made with gluten? Diet soda? Is there someplace where there is some sort of list? Any advice and/or thoughts would be welcome. Please help.

Mara


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Mara,

Welcome to the board.

First, meat, chicken, fish, eggs, fruit, vegetables, rice and potatoes are naturally gluten-free so start there. Then, if there is a particular food you like, you can look for a gluten-free replacement for it.

Nini (a board member) has a newbie kit. If you see one of her posts, click the link to her website and you can download the kit. That is the best place for you to start, then start asking questions! It takes time, and it's hard to learn in the beginning, but it becomes second nature as you are on the diet for a while.

Ursa Major Collaborator

Hi Mara, and welcome to this board.

If your doctor thinks that eating red meat three times a week will bring your iron levels back up to normal, she is wrong. It will take a lot more than that.

First off, your gut can't absorb iron right now, and you may need iron injections to bring the iron up to where you can function. Also, you need to get that vitamin D up fast, because without it your body can't absorb calcium and magnesium, which will lead to osteoporosis (which you may have already, you need to have a bone density scan done to find out). You may want to consider taking cod liver oil for your vitamin D. Butter is also high in vitamin D, plus, good old sunshine every day will be good, too.

You doctor seems to still hang onto the myth that red meat isn't good for you, hence eating it only three times a week. For iron, you should first of all eat red meat more often than that, plus you might want to eat liver regularly.

It will be best and easiest to start out with eating naturally gluten-free foods, until you get the hang of the diet. Diet sodas don't necessarily have gluten (even though I believe some do), but are generally bad for you, and you really need to make what you eat and drink count towards getting better now. So, it would be best to cut out all junk for at least a while.

Also, you need to check all your personal care items (shampoo/conditioner/mousse, soap, lotions, lipstick, bubble-bath, toothpaste etc.) for gluten, as you can gluten yourself with those. Look for things like wheat germ oil, barley extract and oat bran, plus vitamin E might be derived from wheat germ oil. If in doubt, call the manufacturor to find out if it has gluten.

I hope this isn't too overwhelming, and that you'll feel better soon.

Guest nini

You will also need to take a good gluten-free multivitamin and probiotics and digestive enzymes... the newbie kit is on my website, link in my signature, then at the bottom of my webpage.

tiffjake Enthusiast

HI,

I was just diagnosed with severe ( actually she said profound) iron and vitamin D deficiencies, malabsorption syndrome probably due to Celiacs. I was told to eat red meat 3 times a week, take prescription strength vitamin D and become wheat and gluten free. I am so confused from all I have been reading. It's not all black and white. There are many shades of gray. Is everything with artificial coloring and flavoring made with gluten? Diet soda? Is there someplace where there is some sort of list? Any advice and/or thoughts would be welcome. Please help.

Mara

Hi Mara! Welcome! Stay Brave, you can do this! You have great advice so far! I second CarlaB, sticking to naturally wheat/gluten free foods will be the best for now. Fruits, Veggies, Meats (that you cook at home, simple, no frying). You may feel like a rabbit for a little while. There area lot of great gluten-free meal ideas, and when you want to be adventurous, you can find them on this site or many others.

You soda, made in the US, should be fine. It is the caramel coloring that is a concern, but in the US, it is not made from gluten sources.

There are lists, and often, you can find the info on the companies’ website! Just take it one step at a time, and ask anyone here (through the postings) if you have other questions!

A good vitamin is important. I take prenatal, because they are LOADED!

daffadilly Apprentice

Hi Mara, & welcome you will soon get the hang of eating gluten-free, it is a little hard at first.

I second the suggestion to ditch the diet sodas - the artificial sweetner and all the other junk in them are jsut not good for you.

also, do not forget to clean the gluten out of your kitchen, maybe that info is in the newbie packet.

Hope you are much better soon

Matilda Enthusiast

..


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast
kabowman Explorer

I loved the cleaning out all of the gluten (and for me all the rest of stuff I can't eat) out of the cabinets. I only kept a few things for the kids and hubby but the baking stuff all went. I was very cathartic!!!!

Ditto to checking out beauty products. Watch kissing if your significant other (maybe yes, maybe no) has been consuming something with gluten.

All this gets better, once you get past the learning curve. Also, I had my oldest son help me read the ingredients (he started on his own so I just started including him) and he would find stuff that I missed or skipped over. That extra set of eyes was very benificial in the beginning especially.

Anything porous we use for my foods is dedictated, meaning the kids and hubby don't contaminate it with their foods - teflon pots and pans, wooden utensils, cutting boards, sponges, towels, and cast iron (I have mine and we have theirs). Stainless steel can be shared.

We cook our meals gluten-free and occasionally I add something as a side that is not for the kids and DH. But mostly, it is all gluten-free. Sauces are added at the table or on a special section of the counter where my food is NOT and is considered a shared area that I rarely use.

Many charcoals (sp?) have gluten...we had moved to a new house and decided for us, it was time for a grill change so our new grill, gas, is clean and only my food goes on there - no BBQ unless I make it.

Guest nini

the newbie kit does contain the April Delphi list, I haven't had a chance to change it to the August Delphi list yet, BUT I have uploaded the August Delphi list to the web page under the Files for the newbie kit where you can download the individual files instead of one zip file...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,085
    • Most Online (within 30 mins)
      7,748

    M A Humphries
    Newest Member
    M A Humphries
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.