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 Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

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

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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

    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.