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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
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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