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 An Answer


tennyl

Recommended Posts

tennyl Newbie

My name is Lynnet.

I have been anemic my whole life As a baby they told my parents I had Lukemia then went on to tell them I was Anemic and had a milk allergy..Through the years I just learned to adapt to feeling sluggish.

the last few months I knew things were getting worse. I developed heart bpalpatations, a skin rash, cramps in my legs and feet at night.

I lost interest in everything and just wanted to lay in bed and sleep. At my famlies demand i went to the DR . She told me she had never seen worse blood work in her years as a DR. My iron saturation was 2.

She recomended a new oncology hemotology DR who diagnosed me with this disease.

I NEVER heard of it. And I am shocked that I FINALLY see a light at the end of a long scary tunnel.

I had an iron infussion yesterday and I am already feeling perkier.

I will start to see the diatician on Monday an how to live a gluten free lifestyle.

ANY info that you can share with me , as I am so very new to this will be apreciated!!

Thanks!! Lynnet


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Welcome to the board! So glad that you finally have an answer, and can begin healing. It really is a dramatic change for many if not all of us. Sorta puts a whole new light on everything, doesn't it?! But the road you've turned on to is not a lonely one. There's an ever-growing crowd to accompany you along the way.

Much of what you need to know has already been stated countless times on this board. So aside from the responses that you're sure to receive, I'd encourage you to peruse the threads and glean what you can. You'll get answers to questions which you probably would never think to ask.

Aside from the obvious changes in diet, you'll need to go through your kitchen, and weed out unsafe utensils and such. This is because gluten is sticky stuff, and clings to porous and irregular surfaces. For instance, a toaster cannot be reliably cleaned of gluten, thus it is better to simply replace it. Wooden spoons and cutting boards, cast iron pans, scratched non-stick cookware, and things with nooks and crannies such as colanders and strainers must be replaced. Glass and stainless steel cookware should be fine as long as the surfaces are relatively smooth.

Watch out for dish detergents, soaps, cosmetics, and skin/haircare products, as these often contain gluten. Use self-stick postage stamps and envelopes, as the regular ones generally contain gluten. Again, gluten is sticky, which is why it is so often used to make glue (hence the resemblance between "glue" and "gluten"). Finger paints usually contain gluten as well.

Here is a list of safe and unsafe foods.

Although you can buy gluten-free breads, pastas, and so forth, it is generally easier and healthier to simply focus on foods which are whole, unprocessed, and naturally gluten-free. It is much easier to ensure that all items are gluten-free, and your body needs the nutrients anyway. Plain veggies, fruits, beans, meats, etc are the best choices. Processed foods often get cross-contaminated because they are processed on equipment that is also used for gluten-containing foods. Sometimes, even an ingredient labeled as "natural flavors" can contain gluten. While label laws require the top allergens to be listed on food packages, and thus wheat should always be listed, this doesn't guarantee it is gluten-free when wheat is not listed. This is because other gluten-containing grains like barley are often used, but are not considered a top allergen. Rye also contains gluten, and although oats can be safe for a certain percentage of gluten-intolerant individuals, CC (Cross-Contamination) makes them generally unsafe unless they are certified gluten-free. Grain mills usually handle more than one type of grain, and dust/residue from one type pretty much inevitably gets into the others. So even though there are many gluten-free grains, the level of CC might be too high for your particular sensitivity. When in doubt, look for phrases like "processed in a dedicated gluten-free facility". For whole foods other than grains, CC is usually far less a problem, but can still occur. So you may occasionally get glutened even without any changes in diet.

Restaurants are almost always a bad place to eat. Few places have the knowledge or facilities to ensure that no CC occurs.

For processed foods, it is often advisable to email or call the company when the label doesn't provide adequate information. Many food manufacturers have statements on their websites about gluten in their products, and which if any are considered safe. Unfortunately, the laws aren't perfect, which is why Rice Dream gets away with saying "gluten-free" on the label, even though they do use barley to make it. The level is apparently under the limit specified by law, which is 20ppm (parts per million), but many individuals still react to it.

Nutritional supplements are commonly necessary to get the nutrition your body needs. When choosing a supplement, look for a gluten-free statement on the label. Some manufacturers are fairly good about labeling, such as Source Naturals, and NOW Foods.

Do watch out for other food sensitivities, especially to the top allergens (dairy, soy, corn, eggs, nuts, peanuts, shellfish, etc). Dairy is often a problem, especially during the healing process, so you might find it helpful to avoid it even if it doesn't make you sick.

I'm sure you'll get plenty of helpful replies, but feel free to ask any and all questions you may have. The members of this board are very knowledgeable and helpful.

mommida Enthusiast

You should also be tested for pernicious anemia. There is a connection to Celiac disease.

Welcome to the board! Keep a food journal. It can help determine hidden gluten (maybe from cross contamination) or other food intolerances.

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 Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,376
    • Most Online (within 30 mins)
      7,748

    Citydweller
    Newest Member
    Citydweller
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.