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Finally An Answer


tennyl

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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


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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.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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