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New Diagnosis And Confused


kathylea

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kathylea Newbie

hello iam new to this dont really know what i am doing. i was diagnosed with celiac about two weeks ago..... after a 35 pounds weight loss and now possible lupus.... i dont know to much about what to do to fix this disease... can i have some help please


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mushroom Proficient

Hi Kathylea. No need to be confused, but we can help you better if you tell us a little more about what you find the most confusing and what information we need to provide. There are lots of threads started by newbies, and if you start reading there they will be a help to you, but we are happy to provide specific information you request. It can all be a little overwhelming to start with, but you soon get the hang of it. Get back to us a little more specifically, would you? Tell us a little about yourself and your journey to where you are now. See you soon :)

kathylea Newbie
Hi Kathylea. No need to be confused, but we can help you better if you tell us a little more about what you find the most confusing and what information we need to provide. There are lots of threads started by newbies, and if you start reading there they will be a help to you, but we are happy to provide specific information you request. It can all be a little overwhelming to start with, but you soon get the hang of it. Get back to us a little more specifically, would you? Tell us a little about yourself and your journey to where you are now. See you soon :)
kathylea Newbie

i am 46 years old. i have had stomach problems most of my life but in december of last year i started having diarrhea 7-8 times a day. in the process of this i some how got a compression fracture of the spine. had a bone density test which came back bad. have gone back and forth to the doctor with bone pain, exhaustion, diarhea, etc. finally in may i had a egd and colonoscopy done. dr came in and said there was nothing the matter. i cried i knew better. lost 9 more pounds from may to august. saw a gi guy. another egd and colonoscopy done was diagnosed with celiac on october 8 with an ana speckled pattern and elevated so have to see a guy about possible lupus which probably came from the celiac....... any body else get lupus from celiac. thanks for listening

GFinDC Veteran

Hi Kathylea,

One thing to be aware of is malabsorption. Celiac disease damages the lining of the small instestine. The small intestine is where lots of vitamins and minerals and nutrients are supposed to be absorbed. So when it is damaged your ability to absorb nutrients can be reduced. You could eat ice cream all day and still have a calcium deficiency. Or a B-12 or other vitamin dificiency. If you search the forum for viatmin you will probably find lots of suggestions on which vitamins to take. Liquid B-12 is often suggested. Calcium and vitamin D are good. Make sure to check your vitamins for gluten like oats, rye, barley or wheat. Those are all things to avoid.

It can take a while to learn the foods/ingredients to avoid. One way to make it simpler is to eat only whole foods you cook yourself. Potatoes, onions, rice, avacadoes, eggs, etc. Avoid the processed foods.

mushroom Proficient

It is also a good idea at first to avoid lactose (milk, ice cream, cream) because the lactase to digest that is produced at the tips of the villi in your small intestine which are normally damaged by the gluten. You may be able to add this back in later when you have healed. I can tolerate milk in my capucchinos now :)

If you can do it, a gluten free household is best. If you can't, then at least keep a separate counter space on which no gluten is placed, have a separate storage area for your gluten free products in the pantry and fridge, have your own jars of spreads and whatnot so they do not get contaminated by breadcrumbs of others. Get rid of, or buy new for yourself, a toaster, for yourself use only new colander, new wooden utensils, anything that it is difficult to rid of gluten. Check your toothpaste, toiletries, cosmetics for gluten content, and if you are not sure whether or not something has gluten in it, don't eat it. You will learn as time goes on where gluten hides but you will always have to read the labels as manufacturers change their product content constantly. Don't forget to check all sauces and salad dressings--they are big culprits. Tamari is a gluten free soy sauce.

Do not be too surprised to find once you give up gluten, that you perhaps react to other foods too. Hopefully you will not :)

Keep reading on here and keep asking questions you don't find answers to. This is a great resource and the search feature is remarkable. Good luck on your new gluten free life.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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