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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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  1. Trust Express Inc. is recalling Kamy brand Salad Dressing from the marketplace because they contain milk and wheat which are not declared on the label. People with an allergy to milk or wheat, celiac disease or other gluten-related disorders should not consume the recalled products described below.

    The following products have been sold in British Columbia and Ontarioand may have been sold in other provinces or territories.  

    Recalled products:

    Brand Name Common Name Size Code(s) on Product UPC
    Kamy Salad Dressing 230 mL BAT NO: 230-11-07-79 
    Pro: 02.2017 
    Best before: 02.2019
    6 260129 410010
    Kamy Salad Dressing 680 mL BAT NO: 210-11-07-67 
    Pro: 02.2017 
    Best before: 02.2019
    6 260129 410034

    Source:

     

    • kamy-Salad-Dressing.jpg

     

     

  2. As many know I run a small gluten free cottage bakery, on Main St. in a shared building with a store next door that I help out at to keep rent low that does machine work. Anyway one of the rules that came about for that store several years ago was NO gluten products allowed inside...this came about after a worker poisoned me....that is another story. Anyway this being market season and me having to do hand rolled cheesy bread all day. I take a break to go next door and tell them the menu for the lunch I would be fixing them (I cook and serve lunch as a chef their for everyone again to keep rent low and PREVENT gluten foods and contamination from being brought in). Anyway, I walk over there and one of the workers...walks in with a motha fracking hoagie sandwich....like REALLY. I flip on him, about the building being a dedicated safe place, and I do not need him glutening the place after eating it and touching everything I might handle....then flip on him with a rant on if I touch something then do not wash it all off then make a customer sick.....would you pay the law suit?.....what if you make me sick....do you KNOW how much money I spend and time I spend cooking so you guys do not bring that s$#& in here? I fix you meals so you do not bring that poison in here.....his response...."It is just a sandwich" Yes and it is bloody poison to ME that has corn and GLUTEN in so your chancing me with a allergic reaction also. How would you like it if I handled rat poison before cooking your lunch...or if I was having to pull poison ivy then touching around your chair, the doors, knobs etc. THEN he goes and PUTS it in the fridge.....NEXT to my snacks, a OPEN sandwich....I flip and just leave. I was so close to just punching him.

  3. In Part 1 I mentioned many of the GI issues diseases I think this might help and have seen it help.

    But most people only think of an “official diagnosis” and not co-morbidities in the same person.

    Treating your Vitamin deficiency lets you treat your co-morbidities.

    It is known as a 2ndary diagnosis in Sjorgen’s diesease as Pellagra has also been diagnosed

    with SJD for example.

    https://www.researchgate.net/publication/263324686_Pellagra_in_a_patient_with_primary_Sjogren's_syndrome

    Despite the conditions responding to Niacin(amide) --- Pellagra was still considered the 2ndary disease.

    This is more common than people realize often.

    You hear often “you” the average person doesn’t need to take a Vitamin but if you are reading

    this blog you are not average. People with Celiac disease and other GI problems are known to be

    low in a range of Vitamins.

    See this link for appropriate supplementation with a celiac diagnosis.

    https://www.ncbi.nlm.nih.gov/pubmed/24195595

    Niacin(amide) was not mentioned in this study but should be added/studied since

    B-Vitamins are known to help Celiac’s.

    At 58% co-morbidity of Pellagra in Celiac’s there is better than 50/50 chance your symptom’s

    can be in remission in 6 months? If you are ONE of the many Pellagrins being diagnosed as Celiac disease today.

    Gluten free works actually summarizes this topic well.

    https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/

    But still people are afraid to take a water soluble Vitamin that is known to help digestion problems.

    Are you Afraid of a Vitamin? You needn’t bee! Praise bee to God!

    I must always say *** This is not medical advice and should not be considered such. Results may vary.

    Always consult your doctor before making any changes to your medical regimen but it helped me.

    And I think it can help you too and why I share for “Sharing is Caring”.

    2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

    Posterboy by the Grace of God,

     

    *****Addendum I mean this to be some kind of “Opus”. My story! Yours might be different.

    Now the onus is on you to try?

    What you can do is urge your doctor to have you tested for Pellagra (though I doubt very seriously

    you will test low). See this posterboy blog post that explains the difference in Primary and 2ndary Pellagra.

    https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/

    Anyone who eats a protein rich diet will not test low enough to be diagnosed as a Pellagrin

    at least in the Western world.

    You have bee near death, an alcoholic or homeless to be diagnosed as a Pellagrin today or

    maybe an alcoholic homeless fellow who has severe Psorsias. . . might test positive for Pellagra

    if they knew to test for it.

    And why it usually shows up in war torn areas today because protein is limited in war. (and Alcoholics)

    as seen in this House MD episode on Celiacs called Forever because Alcoholics have poor diets and

    thus low in protein in their diets.

    https://www.bing.com/videos/search?q=house+season+2+episode+22+forever+daily+motion&view=detail&mid=C2050653028DE02DBDE6C2050653028DE02DBDE6&FORM=VIRE

    What needs to be done to change this oft over looked fact is a study with Niacin to see if it helps Celiac’s.

    See here where other B-Vitamins were shown to help Celiac’s.

    https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

    this study was only as to how it (B-Vitamin supplementation) effects homeocysteine levels in people

    diagnosed with Celiac disease.

    Not if taking a B-complex or specifically the Niacinamide version of Niacin could help treat or

    alleviate gluten antibodies in Celiacs with cross contamination.

    A double blind study would have to be done but could be effectively tested with some time and effort.

    This is only antidotal information with no confirmed medical research unless someone else takes the

    ball and runs with it.

    Plumbago you come to mind. But it doesn’t matter who it is.

    The time has come to test this hypothesis to see if it is a “working theory”. I only know it helped me

    and helps other I give the Vitamin B-3 as Niacinamide to . . . up to and including people who have

    had an official NCGS diagnosis. Which tells’ me it would help other Celiac’s too if they would try it

    (Niaciamide) 3/day for 6 months.

    Note: No Follow up is done at two years to see if they are in remission after cross contamination

    or if they have adhered strictly to a gluten free diet. But their clinical outcomes (symptom relief) appear

    to greatly improve at 6 months including re-introducing problem foods such as dairy which they now

    tolerate without GI distress.

    I have tried to be a witness to what I have experienced.

    (I speak as a man) that no other person Pellagin being diagnosed as Celiac disease instead would be

    in the dark about this fact.

    Romans 10:13-15 King James Version (KJV)

    13 For whosoever shall call upon the name of the Lord shall be saved.

    14 How then shall they call on him in whom they have not believed? and how shall they believe in him

    of whom they have not heard? and how shall they hear without a preacher?

    15 And how shall they preach, except they be sent? as it is written, How beautiful are the feet of them

    that preach the gospel of peace, and bring glad tidings of good things!

    When you get the right/correct diagnosis (if Pellagra is correct/parent diagnosis) it’s unruly child

    Celiac will get better.

    See this posterboy celiac.com blog post.

    https://www.celiac.com/gluten-free/blogs/entry/2124-is-non-celiac-gluten-sensitivity-andor-celiac-disease-really-pellagra-in-disguise-in-the-21st-century-a-thoughtful-review-of-whether-to-supplement-or-to-not-supplement-by-the-posterboy-of-both-celiac-and-pellagra-a-fellow-sufferers-journey-to-peace/

    I only know it is a devastating delay. To ignore one disease at the expense of the other.

    https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/

    quoting the celiac posterboy again

    “A differential diagnosis is one of the best standard of medicine rarely practiced today and how

    specialists decide between competing diseases like UC or Chron’s or IBS or Celiac Disease and

    if I am right Co-Morbid Pellagra now forgotten for 75+ years since the “War on Pellagra” is now over

    according to medical professionals’ but sadly the battle rages on for at least for the potential

    3 Million American’s who are now being diagnosed as Celiac disease today instead.”

    AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them

    apart sometimes (most times).

    What we fail to understand often with any diagnosis there is continuum of disease/symptoms.

    Yet we think of them as separate diseases Right?

    I have unwittingly become the Celiac and Pellagra Posterboy .

    Learn from my mistakes!

    I have made too many (mistakes) to count.

    Take as much honey (knowledge) as you can from my mistakes so bad (lack of knowledge) health

    will not sting your quality of life.

    So let’s say. Today they find a miraculous cure for Celiac disease or NCGS. . . it would take on average

    17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac

    cases/diagnosis’s from occurring.

    Now in this hypothetical case (which doesn’t exist yet or does IT? As a differential diagnosis

    the answer is a definite YES) it would take another 17 years on average for doctors if they knew

    today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting.

    But one does exist (it is not hypothetical) – a cure for Pellagra exists today. It has in fact existed

    for 100+ years and still doctors don’t recognize it today.

    I share/write these posterboy blog post’s so that others might not have to suffer the same things’

    I have again in the future someday. . . I pray soon!

    Now that you have the knowledge of my experience what will you do with it?

    Every hour/patient/person matters.

    And why I have tried diligently to educate other Celiac’s of this maddening fact.

    All those who have ears to hear may they listen!

    Feel free to read all my posterboy blog post’s if this pique’s your curiosity/interest but there

    is only so much in a/one blog post than can be explained but it really Is not necessary

    or visit the website/blog in my profile where I have told the same story hundreds of time that

    ONE fellow sufferer like myself may/might be helped by the same wisdom, I found God being my help,

    when I learned Pellagra and Celiac disease are Siamese twins and separating one

    (supplementing one to death) will kill the other (cause the other to go into remission).

    And I believe you can too! Praise bee to God!

    2 Corinthians (KJV) 1:3,4

    3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies,

    and the God of all comfort;

    4) who comforteth us in all our tribulation, that we may be able to comfort them (fellow sufferer)

    which are in any trouble,

    by the comfort wherewith we ourselves are comforted of God.”

    Posterboy by the Grace of God,

     

    EPILOGUE

    A simple self-test is to prove this works for you and your friends.

    It is to take Niacin as NIACINAMIDE usually one 300 count bottle is enough for a 3month supply.

    I call it the NIACINAMIDE CHALLENGE.

    You and a friend/family member begin taking it at the same rate.

    Whatever that rate is – is fine.

    But it needs to be at the same rate – consistently.

    2/day or 3/day works (i.e., with each meal) works for most people.

    If so two things will happen for you/them (if Pellagra is indeed Co-Morbid presenting

    as Celiac Disease) then you/they will begin BURPING for the first time in years and years

    (if at all) and their stool will begin to SINK to the bottom of the bowl.

    ***Not twenty minutes after eating something with bloating or burping with carbonation/soda

    or beer etc. but BURPING 2 hours after a meal without the bloating you used to have.

    It will start slowly and then be your new normal. The burping within a month of each other

    will match up with your stool beginning to SINK where it did not before (or it did for me).

    A witness of two is “true”.

    Usually it takes 3 to 4 months taking the Niacinamide 1/day to notice these results

    Usually it takes 2 to 3 months taking the Niacinamide 2/day to notice these results

    Usually it takes 6 weeks to 2 months taking the Niacinamide 3/day to notice these results

    If these are your results then together ya’ll have completed a self-test to confirm Pellagra was

    causing your GI problems.

    If it is the Vitamin making the difference your GI symptoms’ will improve. It is as simple as that.

    I would recommend a 6 months regimen for most people. Two 300 count bottles equal

    $50 Dollars worth of a B-Vitamin.

    As I called this an open a letter to the many GI sufferers etc.

    It doesn’t matter what part phase (spectrum) of the disease you are in it will (should) get better.

    GERD, IBS, UC, NCGS or even Celiac disease if (low Niacin(amide) was the cause) you will have a

    cause and effect reaction.

    If you had Pellagra Co-Morbid and your GI improves with supplementation.

    This almost always works if you are not now taking PPI’s like Nexium or Prilosec etc. . . .

    If you are taking PPI’s then your “Way Back” may be a little longer but the trip back is the same.

    ****Again this is not medical advice but it is too cheap not to try and see if it works for you . . .

    I have found it work for others.

    ****Note: I am only reporting what medical journals have concluded. It is just not well understood

    today one disease is being diagnosed as the other because it can take a generation for this knowledge

    to filter down to the clinical level.

    Again a “Witness of Two” – you Both having the same reaction to the Vitamin proves Pellagra

    was causing your symptom’s and the doctor’s don’t recognize it today in a Clinical setting.

    The Journal of Psychosomatics says its well and I can’t say it better.

    https://www.sciencedirect.com/science/article/pii/S003331821070668X?via%3Dihub

    quoting the abstract

    Pellagra: An Old Enemy of Timeless Importance Author links open overlay panelThomas M.BrownM.D.

    Show more https://doi.org/10.1016/S0033-3182(10)70668-XGet rights and content

    Background

    “In the United States, pellagra is infrequently reported. Yet this disorder does occur among

    malnourished persons.

    Objective

    The author seeks to clarify diagnosis and treatment.

    Method

    The author describes various presentations and effects of this disorder.

    Results

    Knowledge of classic and atypical presentations can assist in making the diagnosis.

    The author presents two cases of pellagra that exemplify the classic and atypical presentations.

    Conclusion

    The typically robust response of the disorder to physiologic doses of niacin

    can assist in confirming the diagnosis.”

    *** This is not medical advice and should not be considered such. Results may vary.

    Always consult your doctor before making any changes to your medical regimen.

    But I am your witness people, have and do get better using this technique realizing a mistake

    has been made in your/their diagnosis. It is the time honored medical

    “Second Opinion” AKA a Differential Diagnosis.

    Isn’t it about time to see if supplementing with Niacinamide will help your co-morbid Pellagra

    symptom’s to see if your Celiac disease diagnosis was arrived at in error – no matter well intended

    has keep you from getting better from Pellagra.

    Quoting an old friend J. Dan Gill when he talks about the power of Truth to Free us!

    Where/when he (Dan) talks about the difference between Truth and Error.

    “The Truth is Always Better

    The Truth, whatever it is,

    Is always better than error,

    Whatever it is.”

    By J. Dan Gill

    The truth is when an error/mistake is made. Admit it and move on to the correct/better

    diagnosis so you can then get better!

    And we have known how to treat Pellagra for a 100+ years but this generation having not

    seen it in their lifetimes have forgot how to diagnose it! When they see it in its earliest forms. ..

    they do not recognize it in a clinical setting anymore!

    Those that have ears to hear? Listen! You can get better from Co-morbid Pellagra.

    SADLY! Few listen. But some (Celiac’s) have heard (listened to) the good news that

    Pellagra is reversible and have gotten better. Don’t be the Last!

    ****Again this is not medical advice but it is too easy, simple and cheap not too try

    and see if it works for you too!. . . I have found it works for others. . . not already taking a

    Proton Pump Inhibitor (PPIs) like Nexium or Prilosec etc . . .

    Praise bee to God! To those who have listened and got better!

    Just trying to help those still suffering (I believe) unnecessarily.

    2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ,

    the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation,

    that we may be able to comfort them which are in any trouble, by the comfort wherewith

    we ourselves are comforted of God.”

    Posterboy by the Grace of God,

    2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

  4. Lemon Ricotta Scones
    (gluten free, sugar free, grain free, dairy free, Keto)
    2 1/2 cups (280g) Almond flour
    1/3 cup Swerve Granular Sweetener
    1 tbsp baking Powder
    1/2 tsp salt
    Zest of one lemon
    2 large eggs
    1/2 cup Kite Hill Ricotta
    1/2 Tsp lemon extract
     
    Lemon Glaze 1/4 cup Swerve Confectioners
    1 tbsp Lemon Extract
     
    Amusingly leaving out binders on this makes them a bit crumbly and is the perfect texture for scones and a great gluten free treat.
     
    1. Preheat oven to 325F and line a baking sheet with parchment paper
    2. In a large bowl whisk together almond meal, sweetener, baking powder, salt, use a sift to sift out into the bowl again and whisk in zest
    3. In a separate bowl mix the eggs, ricotta, and lemon extract.
    4. Combine the ricotta mix into the flour mix and stir until dough is well combined.
    5. Divide the dough in half. and pat into two 6" diameter circles on the parchment paper lined sheet.
    6. Cut each into 6 wedges with a dough knife or butter knife using a spatula you can spread them out on the pan a few inches apart
    7. Bake around 25mins until golden brown and firm
    8. Let cool and whisk the powdered sweetener and lemon juice and drizzle over the cooled scones.
     
    http://thrv.me/gf25 For 25% off your first order.
  5. 6 years ago I started having anxiety. Over time it got worse. Then came depression. I was treated with 50+ medications, a year of ECT treatments. Nothing helped. 

    4 years ago my doctor at the time thought I might have celiac's disease. At the time I did not have health insurance, and could not afford to see a specialist. 

    2 years ago I was diagnosed with celiac's disease.

    Since going totally gluten free. My depression is gone, and my anxiety is better. Adding vitamins and suppliments to helped due to malabsorption. Adding daily exercise helped. 

    Dispite all of this, a small amount of my symptoms still exist. When I mention these to my PCP, and ask if the symptoms are possibly from other things. Example: hypothyroid, fibromyalgia, chronic fatigue syndrome, perimenopause, PMDD, or other mental illnesses. She has no idea what to say to me. Usually it is "try this new medication for a while and come back". That medication doesn't help. I have crazy side effects. Because it is used to treat something I don't have. 

    Does anyone else relate to this?

    How do you get your doctor to recognize and help what is really going on with you?

    What helped, and what did it treat?

    Any suggestions for anything I mentioned?

     

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    Recent Entries

    This creamy blueberry banana smoothie is packed with calcium, vitamin C, B-vitamins, and iron. And, it's high in protein and fiber. Plus, all my smoothie recipes are always gluten-free and dairy-free. Let me know if you try this recipe. 

    Creamy Vanilla Blueberry Smoothie

    Yield: 2 - 4 servings; 6 cups; 48 ounces  

    Duration: 5 minutes

    Ingredients

    1.5 cups crushed ice

    2 Frozen Bananas

    2 Tablespoons Arbonne Vanilla Protein Shake Mix, (or another protein mix)

    1 ½ cups unsweetened, unflavored almond milk

    1.5 cups fresh or frozen blueberries

    Directions

    Place ingredients in the blender in the following order: ice, frozen banana, protein powder, almond milk, and blueberries. Blend all ingredients in a blender on high, until creamy and smooth, about 1 minute.

    Kitchen Tools

    Blender or Vitamix

    Notes

    I prefer to use crushed ice and a frozen banana which yields a colder smoothie. I peel and slice the banana before freezing, and I freeze the bananas at least 24 hours ahead of time. Slicing the banana helps to ensure the smoothie blends easily.

     

  6. Digestive Upset Causes Beyond Gluten

    When you have Celiac disease, you have a damaged digestive system. This requires that extra care should be taken to avoid foods and additives that are known to cause digestive side effects.

    Many of the people who successfully recover their health after going gluten free will speak about having to make other dietary changes.

    These additional changes generally involve removing other foods not thought of to have gluten. Some of these other foods do in fact contain gluten. Some of it will be in the various ingredients in packaged foods, or cross contamination during some point in the production line.

    But others will actually not contain gluten, but do contain other substances that further irritate the damaged digestive systems that those with Celiac Disease have.

    Some terms that are heard these days are:

    • Leaky Gut
    • Intestinal Permeability
    • Microbiome
    • Probiotics and Prebiotics

    These all relate to managing the digestive system. It can get a bit overwhelming when you start digging into these subjects, since there appears to be an endless amount of info to learn. Many of them don't directly speak about Celiac and gluten. Others will disregard gluten problems, and be disrespectful of Celiac sufferers.

    However, the core theories, and core research backed information coming out of these topics carry an extremely important message:

    • Put good stuff into your diet, and take damaging stuff out.

    Groundbreaking Advances in Digestive Health Importance

    Research in the last few years is really starting to get the core understanding of how this works, and realizing it's much more important than anyone dreamed of. This research is really just the beginning. The research will continue, and much more will be learned over the coming years.

    Some core concepts that have come out so far are:

    • The main part of the immune system resides in the stomach.
    • The microbiome is the core of the immune system.
    • The microbiome is the bacteria in our systems, with "ground zero" being the stomach and digestive tract.
    • Modern life as lived for the last 100 to 150 years has seriously changed the composition of the microbiome, and not for the better.
    • The microbiome can be "changed" via diet. (The details of this are still in their infancy, so much more will be learned in the coming years.)
    • Every person has a unique microbiome, thus meaning solutions will be unique to every single person. (This is why some treatments, diets, etc. have such dramatically different results from person to person.)

    As people with Celiac disease, who still struggle with not feeling well, we can use this to tailor a truly unique diet plan for our life, and for our wellness.

    We all must start with removing gluten, ALL gluten, from our diets.

    Unfortunately, that does mean some dramatic lifestyle changes. If we all lived in Utopia, we could just snap our fingers and have a proper gluten free product available for everything we're used to eating. But we don't live in Utopia. We live in a culture that is obsessed with gluten. It's everywhere.

    As many of you are aware, first hand, eating gluten free is being treated like a fad. That means that your need for 100% gluten free foods are being disregarded, and not truly taken seriously. By restaurants, food manufacturers, your friends, your family, etc. Far too many people think "just a little is okay."

    If you REALLY want to get well, then you need to control your food 100%. That can be inconvenient. It involves a big learning curve. However, it's vital to understand that with practice, this truly will become second nature. But only if you take the initiative to educate yourself fully. If you rely on someone else to make some or all of these decisions, you will not get better. You will continue to be sick, and you will continue to suffer.

    As you learn about taking control of eating gluten free, you'll run across a lot of conflicting info. You'll just have to work through the conflicting info, to find what's actually true.

    A Core Step in Recovery

    A big first step in getting control is to eat only food. That may sound silly, but there's a ton of stuff in the products that we buy that isn't really food, and the vast majority of them can irritate various parts of our bodies. Manufacturers use a lot of additives to mimic the taste, texture and actions of more expensive food ingredients, and to allow them to sell items that if made with real foods would not be able to be packaged and sold long after they were made.

    If you're still struggling with feeling well, and feeling frustrated that you can't eat "normal" then it may be time to get back to basics for a while, until you can learn more.

    It really is better to feel well and have what you may think of as a restricted diet. When you feel well, you can make better decisions, plan more, get a bit more creative in your meal planning, etc.

    Change Our Attitudes, Change Our Destiny

    A change in our attitude about food will also go a long way to help us deal with the needed changes. 

    For example, we may think we're being deprived by not being able to eat "normal." However, if you think the "Standard American Diet" (the SAD diet) is "normal," then it may be time to rethink the wisdom of that. The SAD diet has come to be known as one of the worst ways to eat that the world has seen. It causes severe chronic illness, and is massively contributing to decades of illness for many Americans.

    Earlier I said that our culture is obsessed with gluten. This is clearly seen when you look at the last several Food Guides that the USDA has put out. The current version recommends 5 to 8 servings per day of grain products (for adult women and men). That's a LOT of grain. That's a LOT of bread.

    We're being told that we must eat grains to provide the following (per current USDA MyPlate site):

    • fiber
    • some B vitamins - folate / folic acid; thiamin, roboflavin, niacin
    • iron
    • magnesium
    • selenium

    When we cut out gluten containing grains, we pretty much cut out getting these above nutrients from grains. It's almost impossible to get these nutrients in the same quantities from non gluten grains.

    However, all is not lost. It's very easy to get these nutrients in other common foods in our diet (if we don't follow the USDA MyPlate recommendations).

    You can get a ton of fiber from adding leafy greens, vegetables, some fruits, nuts, and seeds.

    All of the B vitamins in the processed grains, those mostly used in the US and other developed countries, are added. The fact is that the processing of foods strips out most of the natural B vitamins. It's super easy to get these vitamins from meat, dairy, nuts, seeds, beans and vegetables. Be sure to eat all of those foods. If you have some other reason to exclude some of those foods, then get some proper advice from someone who properly understands eating gluten free AND your other limitations.

    Remember that part of the reason we think we must have these very high levels of grains is that's what the marketers have told us. Even the USDA is really just a group of growers in the US that grow mostly grains (along with a large portion raising livestock). The USDA's food guides have been shown repeatedly to NOT be based on truthful, valid research.

    Take a Step Back, Keep it Simple to Start

    So, when you're planning your gluten free diet, remember that you don't have to fill your plate with as many grains as you may be used to.

    Get back to the basics. Plan out some home cooked meals, made with pure, fresh foods. This may be something you haven't done much of, since our culture is so used to buying mostly prepared foods, but with some practice, and some basic planning, you'll be well on your way to making significant progress in getting well.

    Here's a super simple dinner plan, to get you started, when you have no idea how to start:

    1. Choose your favorite PROTEIN - meat, beans. Pick your favorite single herbs to prepare them with. Add some diced onions or garlic. Cook.
    2. Choose 2 different colored VEGGIES, steam them, or cut up and eat raw - have one be green, the other one be a nice vibrant color.
    3. Choose a STARCH - brown rice, potatoes, yams, etc. Boil and serve with butter.
    4. Make a SALAD, with a base of leaf lettuce, and at least 4 other veggies, all different colors. Make a salad dressing from scratch: 1 crushed garlic clove, 1/4 c apple cider vinegar, 1/2 c olive oil, 1 tsp raw honey, 1/4 tsp salt, 1/8 tsp pepper. Place in a container and shake.

    You can take this basic plan, and adjust one thing at a time by finding a recipe you like that fits the gluten free, processed food free criteria. Over time, you'll start to build a wonderful collection of recipes that suit you and your family.

    Be sure to let us all know in the comments below when you try this, how it went, and be sure to tell us what you ate!

    Bon Appetit!

    Thora Toft

    - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

    References and further research:

    Time to Run - Recommended dietary allowance (RDA)

    USDA - Choose MyPlate website

    Excerpt from “Sugar Crush: How to Reduce Inflammation, Reverse Nerve Damage and Reclaim Good Health” by Richard Jacoby and Raquel Baldelomar

  7. badcasper
    Latest Entry

    has anyone tried surgi cream hair remover. i havent found any information as to whether it is glutenfree.

     

  8. Breyers Italian Gelato Ice CreamI e-mailed Breyers Ice Cream Consumer Service Department last week to ask if their very decadent and delicious Italian Gelato (ice cream) was gluten free. It is more expensive, definitely creamier, contains more calories which I need, but Oh so good! I received a very nice e-mail from them two days later:

    "New Productions of Breyers Ice Cream will have a gluten-free symbol on the box. Breyers also has a gluten-free program which includes the segregation of gluten containing ingredients, specific production schedules with gluten-free products made on different days than regular products, superior cleaning procedures, and regular verifications and audits."

    Some of the containers of ice cream at your local store may not yet state "gluten-free" as the new boxes are still rolling onto store shelves and any packaging produced prior to this new update will still be available through this year. BUT, at this time if a product does not have the "gluten-free" label on the packaging, but it is listed on their website: (www.breyers.ca/product/category/757004/glutenfree) as gluten free and the ingredient panel does not list any gluten containing ingredients, (for example: wheat, barley, etc.), you can be confident that it is gluten free.

    "Always read the ingredient labels for the most up to date information, as recipes may change from time to time and gluten will ALWAYS be called out on the label."

    From this information we are assured that Breyers will be segregating their gluten containing ingredients, and having specific production schedules with gluten-free products made on different days than regular products, and they will have a superior cleaning procedure and regular verifications and audits to check By that I believe they mean they will have regular checks of the products coming off the gluten-free line of ice creams to ensure no gluten is present.

    They show pictures of their ice creams with the notation at the bottom:

    **Carefully read the ingredients statements on all food labels each time you make food choices and to ensure you are choosing Gluten Free Breyers

    BASICALLY THEY ARE ENSURING US THAT GLUTEN FREE PRODUCTS ARE MADE ON DIFFERENT DAYS THAN REGULAR PRODUCTS AND SUPERIOR CLEANING PROCEDURES AND REGULAR VERIFICATIONS AND AUDITS ARE DONE REGULARLY.

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    My daughter was just diagnosed with Celiac Disease.  She is only 12 yrs. old, so you can imagine how hard

    this has been for her.  This is new for all of us as well.  My question to anyone:  Is it normal to have discomfort

    in the stomach after you change diet?  It has been over a week now and stomach still hurts.  Does it take time

    for the body to get use to new diet change?  Thank you.

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    How to Stop the Hidden Autoimmune Damage That Keeps You Sick, Fat, and Tired Before It Turns Into Disease.

    The Autoimmune FixOn September 20th, with the launch of Dr. Tom O’Bryan’s first book, an entirely new conversation will begin around Autoimmune Disease. THE AUTOIMMUNE FIX: How to Stop the Hidden Autoimmune Damage That Keeps You Sick, Fat, and Tired Before It Turns Into Disease (Rodale Books; ISBN: 978-1-62336-700-8; September 2016; $26.99; 352 pages) highlights the new world of predictive autoimmunity and shines a light on the present medical approach: to wait until millions are suffering from full-blown autoimmune disorders and put them on a lifetime of immune suppressants.

    In THE AUTOIMMUNE FIX, esteemed expert Dr. Tom O’Bryan provides a powerful and cogent examination of the mechanisms underlying this modern-day epidemic, with over 80 million people affected by autoimmunity in the US alone, including top celebrities like Selena Gomez who suffers from Lupus and Michael J. Fox, the well known face of Parkinson’s Disease.

    A broad spectrum of life altering disorders, Autoimmune Disease includes diseases such as Hashimotos Disease, Rheumatoid Arthritis, Ulcerative Colitis, Irritated Bowel Disease, Crohn’s Disease, Multiple Sclerosis, Lupus, and conditions such as chronic fatigue, muscle and joint pain, and memory and cognitive dysfunction. The list is alarmingly long, and all tolled, adds up to the 3rd leading cause of death in the nation.

    Already on it’s way to many bestseller lists, and hitting Amazon #1 New Release in four categories, THE AUTOIMMUNE FIX takes a cold hard look at the failure of the medical community to adequately identify, diagnose and treat the numerous degenerative diseases whose roots lie squarely in autoimmunity. It is Dr. O’Bryan’s belief (backed up with more scientific data than most could absorb without a medical team at our side) that, with the right tools, we could identify diseases years before their symptoms are obvious.

    Dr. Tom O’Bryan is seen as a hero to many and contributed much to the field of non-celiac gluten sensitivity and celiac disease. THE AUTOIMMUNE FIX is cutting edge, creating a comprehensive, evidence-based overview that is a veritable reference manual for health practitioners and a roadmap for patients.

  9. I am proud to be part of this video:

    'What's With Wheat' documentary, the silent global growing epidemic of gluten intolerance!

    There is a free Online Screening available tomorrow –

    More and more people are diagnosed with coeliac and non-coeliac gluten sensitivity than every before! You have to ask the question, WHY!

    Cyndi O'Meara, nutritionist and founder of Changing Habits, went on a global quest to find out the reason why! She could not understand why after millions of years of eating wheat, that we now have this growing epidemic of wheat and gluten intolerance.

    The14 experts, including Dr Perlmutter, Sarah Ballantyne, Dr Terry Wahls, Dr Natasha Campbell McBride, Pete Evans, Dr Rodney Ford, Sayer Ji, Sally Fallon and others, weigh in on the subject and provide chilling answers.

    REGISTER FOR THE FREE SCREENING BY FOLLOWING THE LINK BELOW

    https://www.changinghabitsaffiliates.com/117-1-5-3.html

    FREE 7 DAY ONLINE SCREENING. Commencing June 24 - July 1, 2016.

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    I've been in a really bad place this week. I've struggled a lot with the Celiac diagnosis. I was doing better and then this week hit me like a ton of bricks.... I think because I officially transition to gluten-free on Monday..... I am scared. Scared of losing the convenience I'm used to. Scared of losing the food I'm used to and love. I don't care how it sounds.... I'm fat because I eat bad. I like bad food. I no longer will be able to eat that food. Not just for a short time-not just for a year-forever.

     

    I look at #celiac on instagram and the food doesn't appeal to me. I love salads/fruits/veggies but I don't love all the other stuff I see pictured. I literally am terrified of having nothing to eat.

     

    The cost of eating gluten-free is also astronomical. I'm putting my family in such a bind... we're struggling and I feel so much guilt.

     

    So... I'm struggling but that wasn't the point of my message. My message was to say that I stumbled upon a story of a little girl who just passed away last month from DIPG (incurable brain cancer). It kills kids ages 5-9 usually.

     

    I cannot even imagine.... It breaks my heart...it kills me inside...and it puts into prospective that while Celiac sucks for me... it'll be hard for me... it's not the worst thing in the world.

     

    If my mom were here she would be amazingly supportive, she would hold my hand and hug me and promise to be there for me all along the way but when I sank too low and was too depressed she would say "Someone out there has it worse than you Chanda". And she would be right....

  10. Both examples were originally posted on another forum, where I discuss a topic of my initiated.

    1. Are doctors able to perform a proper differential diagnosis? 

    An example about the incompetence of human brain would be medicine. Did you know that the average time that goes for diagnosing Sjogren's Syndrome (an autoimmune disease most often prevalent in middle aged women) is 7 years!? Those poor women suffer years with dry eyes, mouth, and tiredness, but because the symptoms are vague the patient often doesn't notice them, because she thinks they are normal (she has got used to them) and only goes to doctor when more severe symptoms begin. OK, this erroring is not that bad, because it can be really hard noticing a gradual change in sth that you see every day (in this case yourself).

    What's really frustrating though, is when you go to your GP, mention her your "dry eyes", "dry mouth" and "constant fatigue", and then the GP says you have depression. Her mind is biased toward picking one symptom (fatigue) which's some causes she can remember, and chooses the most common of them. Probably she'll do the basic blood test to exclude the other causes she can recall, and of course they all come back negative, because she didn't add "ANA" to the list. Or she did add it, and ANA comes back negative, and the doctor concludes the patient doesn't have Sjogren's Syndrome. Wrong! Statistically only 2/3 of Sjogren's patients have positive ANA. What she should do is refer the patient to rheumatologist, who would perform the tear measure test.

    Now, I am not a doctor, neither a med student, but when adding those three symptoms in the symptom list of webmd.com, it gives you all possible causes, tests performed for confirming a hypothesised cause, and everything else I need to know. This would be an example of stupid computer database performing better than a doctor. I truelly can speak from my heart here, because I've experienced it over and over again. Doctors should admit the errors of their mind, and take an advantage from the existence of such web programs: start using them as your aid to perform a proper differential diagnosis! People suffer due to their constant errors. 

    2. Another example of the stupidity of doctors

    I just asked a web question from an endocrinologist. The purpose of this was to get an advice on my still undiagnosed disease. The question included all my symptom list and all the laboratory blood tests I have performed on myself within the last 12 months, which by now has piled itself up into a 3 page long Word document.

    Now, the tests show that I have 7/8 times high androgen hormone levels (testosterone, estradiol and SHBG), and 2/2 times elevated renin-angiotensin hormones (renin and aldosterone), which regulate the blood pressure by affecting blood potassium density. However, I did mention in my question that my blood pressure has always been okay, also (as I naturally had predicted) my potassium levels.

    Now, the doctor gave me an answer that was very academic and scientifically true in overall, which is a good thing. She said that 7/8 time elevated androgen levels definitely show a pattern, and for some reason something undeterminable (from simply seeing my test results) causes them to be elevated. However, they can't cause my symptoms. Which basing on the scientific research done in past is also true.

    She also noted that 2/2 consequently tested elevated renin-aldosterone is not enough to say it wouldn't be a random spike, caused by the combination of pre-existing genetic feature of mine + this feature reacting to environmental changes. If I waited, there is a handgraspable chance those two hormones would subside. Especially because my blood pressure and potassium are and have always been normal.

    Nor is there scientifically any relation between those two hormone groups (angiotensins and androgens). One being elevated can't cause the other jumping over the borderline.

    All correct. Statistically she would make a good doctor.

    But not in my case. What she didn't consider was the probability of {me having strong and long symptom list, lasting already for seven year} AND {me having two groups of elevated hormones} being/not-being related to each other. The probability of them not-being related would be near to zero. Thus, whatever science says about my test results, one would have to conclude that "I am statistically a rare case". Science is made by observing a large group of people, and conclusions usually made out of correlations, not from individual cases. Thus I say it is much more probable that I have a rare or cleverly-hidden disease, rather than "I am a healthy person who has nothing to worry about", which was the statement the doctor concluded her answer with.

    I will not let myself be affected by her judgement, and continue my search for the real answer. 

    .......

    Hope these two posts give you courage to keep going. Always second guess what people tell you. 

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    DevynJoy
    Latest Entry

    When I was in cross country we would travel to compete and it was a huge hassle to find something I could eat. Everyone always wanted fast food or pizza. Well i made it through by packing food  or just being hungry until i could find something. Well tomorrow I have a banquet and they are serving pizza.. so again I get to be asked why I'm not eating and "just get over it" , "are you doing this to loose weight" Im tired of people thinking I'm just not eating gluten to get slim! 😡

  11. My sister and I joke around a lot about the creative ways we hide our symptoms from the world. From carrying strong ass perfume, or wearing pads in our shirts, we create laughter and ideas that would send any normal person walking away shaking their head. But at what point does hiding your symptoms take every inch of strength from you?

    I realized just how weak I was when my symptoms showed on a place I couldn’t hide… My lips. I have been diagnosed with eczema for a while now and I have found creative ways of hiding it from the world, and more importantly “those girls” when I was in high school. Just recently, however, the eczema moved to my face and the world began to fall apart.  

    I had been dealing with a long list of internal undiagnosed problems along with symptoms that would make anyone cringe, but I was always able to hold down the fort with one sentence: “If I am beautiful on the outside, no one can tell how broken I am on the inside”.  What a terrible though to push through my head every morning at the age of 19, but it worked. I was confident calm and a pretty face to look at, even though 20 min earlier I was throwing up blood.

    When the eczema could no longer be covered with my tricks of the trade I had a meltdown. My boyfriend held me as I blurted out “now I’m as ugly on the outside as I am on the inside”. He was shocked. He knew what I was going through on an outward level, but failed to realize the extensive damage it had done to my confidence. All he could do was hold me and listen to the sounds of me weep, until I was ready to get up and face myself again in the mirror. 

    I had cracked, all of those years hiding everything came out in one sudden moment and it took everything away from me. About a week has passed from that moment and I am on medication to help my lips heal, but at what cost? When I am done, I will put an X on the bottle and throw it into the box full of empty medications. As I close the lid to that box, I will once again push all of my symptoms back into the depth of my body and out of the eyes of the public.

    Looking in the mirror, every morning and telling myself, “If I am beautiful on the outside, no one can tell how broken I am on the inside”.  

  12. We have all been warned about tricksy stunts included in fine print.  We all know someone who has been duped by a some technical legal speak.  But what about the in your face statements that are just plain misleading?  When it comes to gluten free statements, errors whether accidental or intentional can be harmful.  The sad thing is that as more companies want a piece of the gluten-free pie, not all companies take due diligence in understanding gluten-free.  

    Just yesterday I experienced this not once but twice!!

    My friend brought over a box of meatballs that said in big letters on the front GLUTEN FREE…luckily I read the back label.  The ingredient list for the meatballs was gluten-free, but the separate mango sauce ingredients clearly identified wheat as an ingredient.  What if she had not brought the box?  What if I had not double checked and just believed the marketing? How could this product be labeled gluten-free if everything in the box was not actually gluten free?  This is poor and dangerous marketing.

    Later I was shopping online for a gift basket and "Oh joy!" the company had a link to their gluten-free products.  Unfortunately, the statements made on their webpage were clearly done by someone who had a limited understanding of celiac needs.  I was very angered, not because it misled me, but these kind of errors mislead the well-meaning friends and family who sometimes don't quite "get the gluten thing".  

    Following is my letter to the company:

    I am disturbed by what you have written about your gluten-free offerings.  Your description gives me ZERO confidence that your products are actually gluten free.  I and two of my daughters are Celiacs.  Your ignorance and misinformation in your write-up distinctly says you do not understand gluten free.  First of all, you say that your funnel cakes are 100% celiac-free…WHAT?  They are either "Celiac-Safe" or "Gluten-Free".  Then you go on to say that the lucky gift recipient doesn't HAVE to be gluten-intolerant…WHAT?  Like we can decide to just not be gluten sensitive.  Its an autoimmune disease!  Would you advise other autoimmune sufferers similar advice…juvenile arthritis-you don't have to avoid sugar… MS-you can control your muscles if you choose... rheumatoid arthritis-you can master the swelling and disfiguration of your joints...alopecia-you don't have to be bald… If you think these statements sound ridiculous then think what you are saying to celiacs and especially our friends or family who may want to purchase a well meaning gift but are misadvised by your marketing rhetoric.   Your statements leave me with three varying degrees of thought: #1 your company is insensitive,  (or worse yet) #2 your company is ignorant (or worst case of all) #3 your company is deliberately negligent.  It would be great to get a response from your company and even better if your company fixes the egregious error on its webpage.

    I hope that those who continue to speak up can make a difference for the entire gluten-free community.  We have already seen strides in laws and labeling, but I advise everyone to always read the fine print…our bodies do!

  13. I am a 56 yr old male who was recently diagnosed in March by Endo,Colon and Blood Test. My Blood work was 249 but I have gotten it down to 23. I have been staying on a strict gluten diet and now I am having Swallowing issues. Went back to my Gastrologist and he stretched my Esophagus and said it was due to Muscle Spasms in my Esophagus. He put me on Blood pressure meds which I questioned. This caused more problems with legs swelling which I have never had high Blood pressure and did not at the time he diagnosed me. I went back to him and told him the issue of swallowing was getting worse and asked him to take me off the blood pressure meds. He did but said he would send me to a Specialist ENT/Head and Neck Doctor.
    I saw the new Doctor last month and he ran a series of Barium test on me. Test Showed that my food as I swallow goes to the stomach but backs up before emptying into the stomach. Still no news on what they plan on doing about this issue. I was also told that I have a white blood count issue but have not been told how they will treat this or who.
    He did tell me that My Salvia Glads are Swollen so he has me going to another specialist next month for the out come of this issue.
    It is causing me to think that my issues may be to Lymphoma but they have not diagnosed me with this.
    Has anyone had similar issues?

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    Since this is my 1st Blog, I thought I'd share a little bit about me and my "off-colored" sense of humor (some people use the words morbid, inappropriate, shocking, wonderful, etc...) to help everyone understand why I might say things.
    I was diagnosed with Celiac Disease in 2013. It was a long road of mis-diagnosis and frustration. I just happened to get an amazing Gastro Dr because he was the one on call on a particularly awful trip to the local ER. My Dr himself has Celiac and is a very good support to me. Unfortunately my current story is all related to what seems to be an under-charted area.
    I am often the person that, when jokes are rolling out and everyone is playing off each other, "goes there"! You know when there's that unspoken line of comfortable joke intensity that seems to be set by average people, and there's that one person who says the line people were thinking, but would never say...that's me! The most spoken phrase about me is "very Keisha". I believe that because I am above average that my sense of humor must be too. This sense of humor has taken most of the medical professionals taking care of me by surprise. I can take things seriously when needed, but usually there is a silver-lining to everything and I like to point that out :)

     

    Shoulder Pain!
    The kind of shoulder pain that wakes you up at night because you've drooled yourself into a position that has made your hand more like a "stranger". The burning and prickly feeling have become a familiar friend to me and wakes me up more than my cat who can't decide whether he wants his huge butt on my pillow or my husbands (he has the hardest choices in life. BE an ass%$@#, DON'T be an ass%$@#. To be honest he takes after me. I struggle with the same issue daily). I have been dealing with this issue for 17 years and have tried various treatments, but usually each quits working as effectively over time. I stopped cortisone injections about 2 years ago and just put the pain and issues on the back burner while I tried to figure out what was going on with my guts. You see I am NOT independently wealthy and can only afford to treat one thing at a time. It's like my bank account wants to be a triage nurse. So my husband has been getting on me to get my shoulders looked at again. I was like "yeah, I'll call tomorrow...or next month, whatever" Well the pain as become constant and has affected my "extra curricular activities" with the hubby. I'll be honest here. That is the only reason I even made the appointment. When a person's sex life if affected, that will usually get your booty into that Dr. It's fun and awesome and shouldn't be painful or difficult right?!? So I finally go in and what is unfolding is stuff I don't understand.

     

    Weight Gain...yes you read that right...GAIN!
    During the last 2 months alone I have gained 21 pounds. 21 POUNDS!! Making my total weight gain since my dx 42 pounds! I eat better than every single person I know. I have a very active toddler that keeps me on my feet when I'm not working. I get to the gym at least 2 days a week (I strive for 3 but that doesn't always happen thanks to my overwhelming exhaustion that I am experiencing for the 1st time ever in my life). I have been more active over the last 2 months compared to the 2 months before that. How does this happen? Why does this happen? Thyroid issues? Most likely since it is enlarged and has been painful from time to time. Do I just forget everything I know and quit eating all together. Because EVERY SINGLE Dr I have talked to seems to think I just have a eating problem, then are shocked when I tell them what my meals consist of. I get puzzled looks and mostly looks of disbelief.
    [A little background for all the nosy people, like me, who want to understand the 4 W's - My mother had her Thyroid removed because it was so large it started to effect her breathing. Up until that point, like myself, her blood tests for her Thyroid always came back 'within normal range' and they didn't see any reason to treat it until it grew and grew. They still don't know what caused it, but now hers in gone and she is on replacement meds and doing well]
    The only thing I can think of is that I need to find a Endo Dr that will listen to me when I say "Ok. But what if 'within normal range' isn't normal for MY body?" The last Dr I said that to asked me if I had been to medical school, I replied no, he proceeded to tell me that I should probably listen to someone who has studied it. I then asked if he received a 'C' in medical school? Well needless to say, we are no longer seeing each other!

     

    So What Now?
    Here's where I am. I made the appointment to see an Ortho for my shoulder. On the x-ray there was a weird and concerning dark spot on the upper part of my right humerus. This is NOT the reason he was taking the x-ray, it just happened to be on it. This is why I say "this is how the story always starts". He asked if I had recently broke my arm? No. Ever broke my arm? No. The spot looked like a large tear drop, a very weird one that reminded me of a prison tattoo. You know the one's on the face that let everyone know that they can't adult, because they make bad life choices. (fyi I have nothing against tattoos and all that...blah blah blah. If you get easily offended and can't just enjoy humor for what it is, then MY blog probably isn't the right place for you, bye-bye). He had already ordered an MRI for my left shoulder, because that's the one that has been hurting me the most. Well you know how insurance is, If they approved a LEFT shoulder MRI, then we have to get another approval for the RIGHT side. So I had my left side done. I am waiting to get the one on my right side, where this spot has appeared.

     

    What's One To Do While Waiting?
    I decided to google celiac and bone disorders. Not the most uplifting results. If you want to get depressed really quick, I suggest doing that! It's sure to do the job. I have not attended medical school, as was pointed out earlier by my EX-doctor, but I have been in the medical field for about 10 years in various roles. I have learned that I am my best chance at getting the right diagnosis. I am my very best advocate. It is perfectly fine to seek out a Dr that is on the same page as me about MY body and what I am feeling/experiencing. I am currently on the hunt for an endocrinologist in my general area that is knowledgeable about Celiac patients and the uniqueness of our bodies, or at the very least a smart Dr who isn't afraid to learn more to help me and be a member of my team. My gut tells me that all my issues are somehow connected. To what extent? I don't know for sure yet. But I'll be damned if I'm going to let anyone stand in my way of finding out. I want my body and playful sex life back!!

  14. I noticed that Chex has come out with a gluten-free instant oatmeal and tried it out. Don't know if it is a coincidence or whether they contain the gluten that doesn't like me, but the 2 times I tried it, I have had the cooks 2-step. I usually eat Bobs Red Mill Instant Oatmeal or GlutenFreeda and haven't had any problems with those brands.

  15. So...

     

    Oncologist doctors and Licensed Naturopathic doctors are still not respecting each other in this valley at least. Doesn't surprise me. I the client am in the the middle. It's like a tug-o-war game really. One person says this, another person says that. There is absolutely no reason under the sun why a oncologist doctor can not respect nutrition. There is equally no reason why a Licensed Naturopathic doctor can't speak with the oncologist doctor before referring a patient.

     

    Yup. That's fun for me. I'm trying to explain things after being gluten-ed for a week by the wrong tea (my fault) and am messing up the words. It doesn't help that the oncologist doctor is of eastern origin and likes to verbally start conflict with female patients. Not cool in this country. I won't be seeing him after the CT scan.
    This oncologist also said there isn't anything significant about celiac disease to be concerned about.

     

    I assumed he was a moron and had not taken professional classes on celiac disease.

     

    I don't like to switch physicians. The family practicing nurse could not handle all my health history. I filled out that stupid paperwork and answered TOO honestly about health history and that is OVERWHELMING for them. Simple, don't fill all the paperwork out. Don't tell them everything.

     

    Another unfortunate thing is; gossip doesn't not know no bounds within the professional organization.

     

    So when someone has labeled a patient a hypochondriac, it gets passed on. Or if a patient sees one doctor that talks to the radiology department, the nurses, or other physicians then the rest of the department hears of that one doctor's personal opinion of the patient. Not professional. If the patient wants to get a scan, let them. It's their health.

     

    Oh wait...here is why. Said one doctor; "I don't have a legitimate excuse to get you a scan, it will make me look bad on the insurance company."
    I the patient was going in for a scan of where my old tumor site is, I've never checked up on the tumor site and it's been 11 years. Now I'm having chest pain and fluttering, difficulty sleeping on my side again like when I had cancer. The doctor says "It's been too long, lymphoma wouldn't be your issue, being a stay at home mom is probably what's really going on, your just imagining your symptoms."

     

    I think I need to report that oncologist. But I'm going to have mercy and let him do the CT scan. After that we'll see if he belittles me again. Then we'll see if I report him.

     

    OTHER THAN ALL THAT....

     

    My father-in law has asked his church for donations to help Matt and I with the bills. Out medical bills are getting pretty steep. The church, people we don't even know, have donated about a thousand dollars! WOW! So we are hoping to repay them some how. To say thank you more than just emailing a letter for the pastor to read. It's a Lutheran church so I'm not sure what's kosher. lol

     

    Now....
    I'm going in for a CT scan on the 19th.
    I'll return to my Licensed Naturopathic doctor until we move.
    We'll continue to boost my health and work with the information we have to help me be able to sleep on my side at night, maintain my diet changes and supplement anything that I'm lacking in so my body and repair better.

  16. Well... yesterday I had my second endoscopy performed. My GI doctor wanted to check up on my small intestine to see how its healing, as well as check my esophagus to rule out eosinophilic esophagitis. He took multiple biopsies and said my SI looked atrophied but otherwise I looked good.
    The combination of versed and demerol is powerful and I did not remember much of the discharge except for the fact that I Don't think I was ready to be discharged I was so out of it. But I slept it off and now I'm fine. The lidocaine prep that i had to gargle was absolutely disgusting! I do not remember having to do that the first go around... blegh!
    Today I got a phone call from the scheduling nurse saying my doctor ordered a hydrogen breath test. I do not recall that being discussed at discharge (no surprise I was so out of it) but neither does my husband. So anyways, based on our discussion I guess he is looking for SIBO.
    Everything I have read thus far says antiobiotics, probiotics, low FODMAP or SCD diet to manage this.
    I am guarded about this whole thing. On one hand maybe this will finally solve my ongoing symptoms but on the other hand seriously?! another thing!!?

     

    Really really really really tired of being sick and tired. Did I mention I turn 30 next month? I feel like I should be in retirement.

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    I had surgery two weeks ago for my parathyroid and elevated levels of calcium in blood tests. Surgery went very well except within 24 hours I developed a strong allergic reaction at the incision site. The area got very red , swollen and began to weep quite a bit. Sleep became impossible,went to the doctor and he removed the glue that is commonly used to cover the incision and stitches. Started on, anti-biotics and a steroid. I contacted the mfg of the glue and asked about possible gluten in the product. I was told no gluten. It is a blend of formaldehyde and a polymer, its common name is Durabond. Still have residual itching and redness but much better. Would hope no one else needs to go through that less than wonderful expierence, Has anyone else had that situation ever develope? thanks, pasqualeb

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    mfarrell
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    BOSTON MA IS EXTREMELY CELIAC FRIENDLY AND I JUST WANTED TO SHARE THAT FACT WITH ALL!

  17. At the grocery store the other day, I checked out the meats. I noticed a package of turkey breast, which I use to frequently buy before I found out I had allergies to it. I absently passed on by.. I got a few feet away and stopped dead. "Wait" I told myself; I can have turkey! I turned and took a couple of steps back. Oh, right, I thought as I turned away again, but what fun are turkey nuggets without breading? I haven't had breading for months. I walked away. "But wait!" I got almonds back and can make breading with that! Tears in my eyes, I bounced over to pick some out! I felt like I had won a big contest. :P

     

    Maybe it was worth losing foods, so that I won't take them for granted when they get them back. :unsure: I had antibodies to nearly everything I ate over the years. I tested out super-sensitive to nearly everything. NAET started addressing these sensitivities beginning with basic nutrients such as vitamin B, Vitamin C, and sugar. At the end of the basic treatments I started multiplying foods back in.

     

    Several months back now, I told of a plan to try NAET treatments for my allergies. Quite a few things happened with that and I have been off while I am busy learning and talking about NAET. One readded food is coconut water, which last summer's attempts to drink brought immediate noises from the tummy and a rush to the bathroom. Now, when I drink it, the tummy is silent. Last year, my skin reacted for weeks when I got scraped by raspberry bushes. This year no reaction. Thus I am experiencing profound changes and feel hopeful I will be able to eat most anything (but gluten) in the near future.

     

    Yesterday my brother in law declared. "Dee, you look like you are so much better than a couple of years back. You just look like you feel so much better." Indeed, I sat watching the soccer game with a ready smile on my face. I felt good. Many things have worked together for my healing. I am happy that NOW extended family and family alike can see the blessed changes in my life. Recovery, has been complicated and long, but I have been carried through.

     


    Keep on keeping on fellow battlers.