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.

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.