• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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

Blogs

Our community blogs

  1. Ennis_TX
    Latest Entry

    Still got a few issues lingering from that glutening issue...onions are still off the menu...as are spices. SO my mexican rotation of cuisine is put off and sticking to Italian herbs and keeping it easy. I have learned a few new things diet wise. The whole "what floats on top of my stomach will be puked up later" concept has been applied with a new testing and setting method for my foods. Works like this I put the food ingredient in a bowl of water...if it floats I need to make it sink before i eat it. This involves soaking nuts/seed meals/flour, and certain other foods 4-6 hours before a meal. Leafy greens seem to sink if nuked in the microwave to mush making them easier. NOW this did have a interesting find...animal fats are still a NO cause of the enzyme/floating effects with my system. BUT certain plant fats like cocoa nibs seem to cause a odd film to form...it breaks down with enzymes quickly I tested in a bowl and seems to disperse/sink. SO I moved it up and always consume my cocoa nibs before a meal with enzymes now and the puking has become less common. I have previously noted it was present with over consumption of cocoa nibs occurred after a meal.

    I have discovered a wonderful flavor company that makes artificial flavor drops for food/beverage/vaping. Very low to no alcohol in most flavors, no additives/thickeners, and very concentrated. About 1-1.5 drops to a oz of liquid. I used the biscuit on in my keto roll recipe .....OMFG it tasted like those Pillsbury rolls with the butter in them we used to have for breakfast every saturday growing up OMG, I love it with some cinnamon or sugar free grape jam...SOOO reminds of my childhood with my family....texture is lacking that layered fluffiness but the flavor is dead on.   The Cereal one taste like corn flakes,,,add a sweetener for frosted flakes...SOOO nostalgic, I love using it in coffee or almond milk...also great in porridge like someone used the left over milk from the cereal in the food.  The cinnamon danish one taste like those bear claws from the gas stations, the rectangle pastry with the lines on top and a filling them, Mix with either the vanilla custard, apple pie, or lemon meringue etc. for a filled pastry...SOOO much fun in smoothies and porridge.

    I have a upcoming chiropractor appointment again to fix the curve in my back and check on my osteoporosis in my neck. I went ahead and booked a hotel for a night up there since it is a 100+ mile round trip. Figured I would stay up there and have some fun shopping for a day (window shopping).

    I keep  getting more and more concerned about my mother (adoptive) perhaps having this disease so many symptoms but she refuses to get tested.

    I recently have been taking care of my cousins daughters more....OMG I feel like my grandmother on my father side must have, that perfect home, odd diet, and not really set up to entertain kids....I am trying to cater to them to the best I can but their taste change daily....and the dumb father normally feeds them instant meals, and prepackaged snacks...SOO they are spoiled and extremely picky. -_- The stuff they do like is like insane expensive, Pro Granola, Kale Chips, gluten-free muffins, gluten-free cookies...the nut based expensive ones. I am billing him for the food....I have a itemized list and they have consumed over $54 in food in 10 day...this is a 8 and a 10 year old.

  2. This is a fun blend, can be a bit thin, and consistency is dependent on a hand blender and how much you work with it. But easy to recall, and your choice of adding a extra extract and jam of choice changes it up. I made a orange one this morning.
    2 cups milk of choice
    2 cups water
    2 tbsp coconut flour
    2 tbsp ground flax
    2 tbsp almond meal or butter
    2 tbsp sweetener of choice (I use swere)
    2 tbsp Jam of choice (I use sugar free smuckers)
    2 tsp vanilla
    (Optional fun extracts for any dessert your desire, Look up http://www.lorannoils.com/1-ounce-larger-sizes[1/2tsp of their supers will do] for any flavor you could imagine cheap. Or for a premium look up https://www.capellaflavors.com/4oz)
    2 ways
    1. Blend water (not the milk), and all other ingredients in a 2 cups measuring cup
    2. Heat 2 mins in the microwave, pulse with hand blender again and pulse heat til it starts to boil, blend again.
    3.Pour into a large 4+cup pot and add your milk blending with the hand blender then simmer while stirring and it should thicken up.

    NOTE ingredients bought through the Thrive  link get you a extra 25% off, great for gluten free shopping.
    Thrive Market http://thrv.me/gf25
    https://thrivemarket.com/nutiva-organic-coconut-flour
    https://thrivemarket.com/bobs-red-mill-almond-flour
    https://thrivemarket.com/p/swerve-granular-sugar-replacement
    https://www.luckyvitamin.com/p-299197-premium-gold-flax-products-100-natural-true-cold-milled-golden-flaxseed-24-oz
    https://www.luckyvitamin.com/p-435169-nutiva-organic-coconut-flour-3-lbs 
     

  3. Medical Mysteries and Shadowlands the Posterboys Story of how he unlocked help co-morbid Pellagra God being his help

    from his Celiac diagnosis. May you find the same faith in your life for to Educate is to truly Free!

    How to determine if it is a complementary or competing diagnosis? It takes faith to free yourself from a comorbidity.

    Health is like faith . . . you will only do what you believe. And you can have only faith in what you know to do.

    As some long time members of celiac.com know most/many of my blog posts’ document my trials and tribulations with Low Stomach Acid

    often being misdiagnosed as high stomach acid today).

    I have like many of you on this board had severe GI symptom’s culminating in a Celiac diagnosis after 30+ years of IBS and/or NCGS symptom’s.

    Only to find out that taking BetaineHCL (powdered stomach acid) helped alleviate many of my symptoms’.

    **** Let me say that this does not negate my positive Celiac/NCGS (really positive blood test only) diagnosis.

    I am in the medical world something termed a “Zebra” or “idiopathic” would be a more correct term/diagnosis.

    These GI conditions were happening for an “unknown reason” . . . Low stomach acid being misdiagnosed as HIGH stomach acid instead.

    Think the “House” TV show which I don’t get to see much anymore but commonly took several “differential diagnosis’s” to determine the correct one.

    While any of the previous diagnosis had a valid conclusion they ultimately were wrong.

    (But in TV land . . . . everybody finally gets the right diagnosis and gets better as if my magic it seems) but if you have ever read the Washington post’s

    “Medical Mysteries” column you know that is far, far from the real world sometimes.

    https://www.washingtonpost.com/national/health-science/a-bad-diagnosis/2015/08/24/b17606c2-12ac-11e5-89f3-61410da94eb1_story.html

    Often we/us “‘Zebras” exist in some “shadow land” as described well in this NYtime times article here discussing the difference between

    “The Damage of Bile Reflux not (Stomach) Acid”

    http://www.nytimes.com/2009/06/30/health/30brod.html

    quoting “The symptoms are similar to heartburn, and many sufferers are told they have gastroesophageal reflux disease, known as acid reflux.

    Yet treatment with popular remedies for acid reflux, like the acid-suppressing proton-pump inhibitors Prilosec, Prevacid and Nexium, fails to work or

    gives only partial relief.

    That’s because acid reflux is, at most, only part of the problem. The main culprit is bile reflux, a back-up of digestive fluid that is supposed to

    remain in the small intestine, where it aids the digestion of fats.”

    However if low stomach acid continues to be treated like HIGH stomach acid instead . . . no real progress is made and people

    become locked into a (bad) misdiagnosis.

    I have been that person.

    I know what it is like to receive one bad diagnosis after another.

    Co-morbidity is a real medical condition where more than one disease exists in a person and because of “preconceived notions”

    one disease is not being treated because the other “Primary” disease is considered secondary to the first.

    See my blog post about how this “devastating delay” can delay healing in recognizing the correct morbidity.

    Or can we identify the real/correct diagnosis in the first place.

    Maybe? Or Maybe Not?

    I am not saying this will help “All” your problems but it will help your co-morbidity.

    My co-morbidity was Pellagra occurring with/because of my Primary NCGS/Celiac diagnosis or as I said in another blog post

    I had Celiac disease and developed Pellagra.

    Or was it I had Pellagra and was diagnosed as a Celiac?

    How could I know for sure?

    I could supplement with the missing ingredient that leads to Pellagra in time. And if I got better then I had addressed a common

    co-morbidity in celiac disease.

    See my blog post where I explain how to win this two front war.

     

    I have found (digestive) peace praise be to God!

    Now I don’t’ expect this to work for everyone who try’s it but I didn’t anticipate the amount of resistance or faith it would take for people

    to consider a valid “differential diagnosis” either.

    It turns out without faith . . . people can’t get better.

    I will say it again “Health is like faith . . . you can only do what you believe”.

    What do I mean by that?

    Read most any post from Ennis_Tx and he will faithfully tell you about Magnesium. . . though few believe him (often) he

    faithfully tells it (because it helped him).

    I didn’t know what was happening at the time. I was witnessing the Pike Syndrome in action . . .until it happened to me.

    I naively believed . . . tell other’s and they will believe.

    Not so young padawan . . . you can have the knowledge to help other’s but until they know how much you care . . .

    they don’t care how much you know.

    I had come up against the greatest force in the (medical) world)) and maybe the world in general (I speak as a man) . . .

    inertia/apathy also called “learned helplessness”.

    Better known as the “Pike Syndrome”

    (Anybody who has received a misdiagnosis . . .. later on to find out your IBS is now NCGS or your NCGS is now Celiac disease this post is for you.

    Think if you had received a Celiac diagnosis in the beginning how much suffering you could of avoided over all these years.)

    Explained well here at a motivational coaches site https://jcrowcoaching.com/2012/02/01/that-pike-experiment-is-downright-chilling/

    I will quote short pieces/clips to explain quickly what I mean but read it all for your selves for a more comprehensive understanding of this concept.

    “Known as the Pike Syndrome, it’s a great, albeit depressing, example of learned helplessness.

    There’s a pike in a tank of water along with a dozen doomed minnows. Sure enough, the pike darts and snaps and gorges.

    Poof, the minnows are nowhere to be found and the pike is pretty satisfied. Enter these two exceptionally perky researchers who proceed

    to lower a glass barrier into the tank and slip in another dozen minnows. Like any self-respecting pike, this fish is thinking “lunch,” and goes after

    them with gusto. Except he smacks his nose against the glass and comes up empty-handed (so to speak). Again. And again. Finally, the pike sinks

    to the bottom of the tank, suspends himself in the water and stops trying.

    That’s when these researchers (and really, they’re so happy they’re scary) remove the glass barrier, freeing the minnows to swim wherever they like.

    And where they like includes all around the motionless pike, right in front of his nose, even bumping into his head. And the pike? He just sits there and

    never again tries to eat a minnow.

    And he starves.”

    To many times in life there are “invisible barriers” in our lives’ holding us back. . .

    This is to those who have lost hope or are still searching (hopefully) if you are reading this blog post for yourself or a friend who

    has developed NCGS or Celiac disease.

    Gluten is your minnow (with good reason) but if you have Pellagra too (that invisible barrier) can be removed by supplementation.

    IF your now suffering from Celiac and Pellagra the way I was then taking Niacinamide will remove the Pellagra barrier in your GI quest

    to get better and find GI peace from Pellagra for yourself the way I have.

    How do we know if it really can be Pellagra instead?

    It is as simple as Occam’s Razor.

    From Wikipedia

    1. “Occam's razor is a problem-solving principle attributed to William of Ockham (c. 1287–1347), who was an English Franciscan friar

    and scholastic philosopher and theologian. The principle can be interpreted as stating Among competing hypotheses, the one with the

    fewest assumptions should be selected.”

    The correct diagnosis is the simplest one to diagnose.

    Pellagra can be simply treated by supplementation.

    AND (a witness of two is true) IF you have developed a CORN allergy in addition to your gluten allergy you have met the medical definition

    of Pellagra 75+ years ago lost now to medical history.

    See Dr. Heaneys’ great blog post summarizing this fact about Pellagra and the 4 Ds.

    http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

    I will say it again “The correct diagnosis is the simplest to diagnosis”/simplest to treat in a co-morbid condition. . .

    where there is some doubt as to the true diagnosis.

    And supplementation removes that barrier if indeed you have also developed a corn allergy I beg you to consider taking Niacinamide 2 or 3/day

    (whichever is easier/ with each meal or morning and evening) for 6months to see if your GI problems don’t improve the way

    mine did after 30+ years of suffering from a Vitamin deficiency.

    Or if you are still suffering from a “poor prognosis” and poor dietary compliance (seemingly) though you have tried your best (you really have)

    and are still failing at achieving remission then consider the differential diagnosis of Pellagra is all I ask.

    Also see this thread about a Celiac starfish/zebra who is suffering still from Pellagra misdiagnosed as Celiac disease (I believe) and

    is shocked her Ttg levels are still elevated.

    quoting/paraphrasing from the earlier Pike Syndrome article christina this post is for you.

    “The thing is, unlike that starving pike, we have the power to change our perspectives, challenge the accuracy of our beliefs,

    and question our views. It’s not necessarily easy. Sometimes it takes an outsider to help . . . .who will push and prod and challenge.

    If we’re lucky something inside of us nudges at our unconscious until we move, and try, and change our views”… /belief(s) about our/your bad diagnosis.

    You will only know if you try! I pray you will have the faith to try!

    If it could help why wouldn’t you at least try?

    You are not a Pike!

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

    Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before

    making any changes to your regimen

    Change is not easy . . especially if you have developed/are suffering from the Pike Syndrome I grant . . . but possible with education

    for with education comes understanding.

    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 (Pike/sufferer still suffering),

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

    Posterboy by the grace of God,

     

    *****Note: I have said all I have intended to say. I speak as a man.

    Badly misquoting Romans 10:14 How then shall they change their stars/diagnosis in what they have not believed/heard?

    and how shall they believe in what they have not heard? and how shall they hear without a preacher?

     

    Romans 10:14 "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?"

    I have spoken/preached to other’s still suffering with/about a diagnosis I did not receive that helped me. I hope it helps you too the way it did me.

    Pellagra – Like Celiac Disease has existed in the Shadowlands as a Medical Mystery for way too long!

    Find out which is the correct diagnosis is by supplementing with Niacinamide 3/day for 6 months I beg of you until BURPING two hours

    after a meal is your new normal and the “Natural Order of Things” have been restored.

    If this has "Piked" your interest you can read best how to take Niacinamide by reading this blog post.

    You are not a Pike! You can decide for yourself. Knowledge is power! Now that you know what else Celiac Disease could be what

    will you do with this knowledge?

    Will you sink to the bottom of the tank or try to bust through that glass barrier (which isn’t there) but in your mind if Pellagra is now

    being diagnosed as Celiac disease and the doctors have badly misdiagnosed this Medical Mystery (Pellagra) and you have been found to exist in the

    Shadowlands of Medicine.  Then there is hope!

    This is not as far off as it might sound on a first hearing.

    See Season 2 Episode 22 “Forever” listed as episode 44 see link below of the medical TV drama “House” the “Differential Diagnosis”

    /Final Diagnosis was Pellagra for the Episode on Celiac Disease.

    https://en.wikipedia.org/wiki/House_(season_2)

     

    Feel free to comment and add your success stories when you begin burping w/o bloating for the first time in years and years

    so others too can be helped from your experience.

    Like I am sharing now.  Praise bee to God if you have considered what I said and are willing to try it (taking Niacinamide)

    for yourself or your little pike if you are a parent and still searching for answer's for your little one until . . .

    burping is their/your new normal.

    I only know it helped me.  I can't be the only one.  If I am let it not be because I did not share!

    A witness of of two is true!  Both you and your tyke take it (Niacinamide) at the same rate/amount 2/day or 3/day (whichever is easiest) and you will

    begin burping together -- a confirming sign that the Vitamin is making a difference and Pellagra is fading away into medical history for you in approx. 3 months.

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

  4. 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

  5. badcasper
    Latest Entry

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

     

    • 1
      entry
    • 3
      comments
    • 530
      views

    Recent Entries

    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.

    • 1
      entry
    • 4
      comments
    • 1536
      views

    Recent Entries

    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....

  6. 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. 

    • 2
      entries
    • 6
      comments
    • 2752
      views

    Recent Entries

    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! 😡

  7. 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”.  

  8. 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!

  9. 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?

    • 1
      entry
    • 1
      comment
    • 1931
      views

    Recent Entries

    [size=4][font='comic sans ms']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.[/font][/size]
    [size=4][font='comic sans ms']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.[/font][/size]
    [size=4][font='comic sans ms']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 "Fucking 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 :)[/font][/size]

     

    [size=4][font='comic sans ms'][b]Shoulder Pain![/b][/font][/size]
    [size=4][font='comic sans ms']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.[/font][/size]

     

    [b][size=4][font='comic sans ms']Weight Gain...yes you read that right...GAIN![/font][/size][/b]
    [size=4][font='comic sans ms']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. [/font][/size]
    [size=4][font='comic sans ms'][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][/font][/size]
    [size=4][font='comic sans ms']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! [/font][/size]

     

    [b][size=4][font='comic sans ms']So What Now?[/font][/size][/b]
    [size=4][font='comic sans ms']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.[/font][/size]

     

    [b][size=4][font='comic sans ms']What's One To Do While Waiting?[/font][/size][/b]
    [size=4][font='comic sans ms']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!![/font][/size]

  10. 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.

  11. 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.

  12. 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.

    • 2
      entries
    • 3
      comments
    • 2134
      views

    Recent Entries

    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

    • 1
      entry
    • 0
      comments
    • 1973
      views

    Recent Entries

    mfarrell
    Latest Entry

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

  13. [size=5]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[/size]

     

    [size=5]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. [/size]

     

    [size=5]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.[/size]

     

    [size=5][size=5]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[/size]. 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.[/size]

     


    [size=5]Keep on keeping on fellow battlers. [/size]

    • 1
      entry
    • 4
      comments
    • 1910
      views

    Recent Entries

    [font=tahoma][size=3]I was anemic, had severe abdominal pain, and my bowel movements were a combination of diarrhea and constipation. When I finally went to the doctor, I was diagnosed with IBS and given medication. The medication intensified my abdominal pain so I re-visited my doctor. His new diagnosis was ulcers so new medication. After a week and with no improvement, I called my doctor and he referred me to a gastrointestinal specialist. [/size][/font]
    [font=tahoma][size=3]My first appointment was simply to explain what was going on. After examining my abdomen, the doctor said it could possibly be my gallbladder or colon but we would start with an EGD to get a better view. My second appointment was my EGD and there were no visible abnormalities but they would know more when the results from my biopsy came back. [/size][/font]
    [font=tahoma][size=3]The phone call…”you have celiac disease.” The doctor didn’t elaborate on my condition, other than start eating gluten free and schedule an appointment. I was relieved and happy but it didn’t last long. In fact within hours, I was crying and scared. It was clear my life was about to change and I had no idea what kind of damage had already been done. I didn’t even clearly understand what it meant to be gluten free. [/size][/font]
    [font=tahoma][size=3]Now almost a year later, I’m still learning and doing my best to remain gluten free. [/size][/font]

    • 1
      entry
    • 2
      comments
    • 1870
      views

    Recent Entries

    Holly F
    Latest Entry
    So happy I found you guys!! I was searching to see if anyone was feeling like I do right now, I need to talk to ppl that understand what I'm going through. I was glutened and im in so much pain right now! It seems like the more clean I get my system, the more sensitive I am?!?!
    When I tell my family my systems, they are all like, maybe it's this or maybe it's that. UGH it's frustrating that they don't listen!
    My intestines are on fire, my back is killing me, I'm irritated, ackey all over and I'm foggy. The stomach and back is what is making me want to cry!
    I was diagnoised in 2012 and I have to admit that I have been the worst patient but I'm getting better, not because I want to but because I have to! Like I said before, it' seems like the more I stick to my diet, the more sensitive I am.
    Does anyone have advise on how I can feel better NOW?? I took charcoal but only after I was in my second day of symptoms. I've taken charcoal in the past when I knew I was getting cross contamination and it worked great!! I ran out so I wasn't able to take them beforehand and boy am I paying for it now.
    I hope someone can give me some good advise
  14. Just made this last week and cooked our teriyaki chicken in it (and marinated in it too)

    Makes roughly 2 Classico Jars ( I save glass jars and reuse them) full of yummy yummy time sauce!


    [img]https://s3-us-west-2.amazonaws.com/media.gatheredtable.com/recipe_photos/cf4ef3cb-0f50-48b6-b4ff-758272dd238f.400x300_q85_crop.jpg[/img][list]
    [*]1 cup coconut aminos (or gluten-free soy sauce if you can find it, but I cannot!)
    [*]1 cup honey
    [*]1/2 cup juice from fresh oranges (or same amount of frozen concentrate!)
    [*]4 tbs rice vinegar
    [*]2 tbs fresh grated ginger ( I freeze the ginger and then grate it on the small side of my grater, this removes the "stringy" issue)
    [*]3-4 garlic cloves, pressed or minced
    [*]2 tbs sesame oil
    [*]Pinch or 3 of red pepper flakes
    [*]Optional: Add 2 tsp arrowroot flour to make the sauce thicker
    [/list]
    Combine all above teriyaki ingredients in a saucepan over medium heat When mixture begins to boil, stir for another 2-3 minutes Remove from heat Cool and serve! OR... Fill your glass jars and leave to cool on the counter top before putting on the lid and... hmm I refrigerate it for 1-2 weeks and i do no tkno whow much longer it can go because WE EAT THAT UP OH YEAH!
    • 1
      entry
    • 3
      comments
    • 3100
      views

    Recent Entries

    katiesalmons
    Latest Entry
    I was diagnosed with Celiac July 2014, so very sick for about 6 months prior to that, vomiting, fatigue, you name it. So once I was diagnosed it was time for a change. GLUTEN FREE! Well that couldn't be to hard right? Well that's what I thought but not so easy. I still struggle with it some days it's so easy other days hard as ever. We have pot lucks and well for a person with Celiac this is not a pleasant occasion, but you get together with friends and some will just make only the food you can eat and you feel blessed that they would do such a thing. I have gotten a little off topic. My point was to look back before my diagnosis.
    Things come to light now that I have the disease and know that I have it. I look back to a 5 day hospital stay where not one Dr. could figure out my abdominal pain. Was it Celiac? Less than 5 years I ran into "acid reflux" or was it Celiac? My last pregnancy I had sickness vomiting normal pregnancy stuff but it would take every ounce of energy out of me, was it celiac not just pregnancy? Stuff used to randomly make me sick, Celiac? Somethings I look at now just make me wonder how long have I been unknowingly dealing with Celiac simply because there was no diagnosis?! Interesting concept. Many ah-ha moments have come up when I find out some type of symptom Celiac gives you that I had one time or another that only now makes sense.
    • 1
      entry
    • 4
      comments
    • 6114
      views

    Recent Entries

    I have had irregular movements since As long as I can remember. Stressful situations caused loose stool and any other time they would be stuck. I did not realize how screwed up they were until I went gluten free when I was 17. I went gluten free for 3 months and it was the most regular I had ever been.
    Fast forward to this year I just turned 20. I had bloody bowel movements from july till December with no associated pain. I decided to go gluten free again. They stop being bloody within one week. I made an appt to see a GI doctor in november but they couldn't see me till now. So I go in and she says she wants to do a colonoscopy since we have a lot of polyps and colon cancer in my family. So I have scheduled one and I read that if you change your diet it can mess with the results. So three days ago I started eating gluten again to keep from getting inaccurate results. The first day after eating gluten I felt like I was dying with hot sweats, abdominal cramping, loose stool, nausea and fatigue. Yesterday I had a sandwich and thought I was going to vomit and had a super bad migrane and then I had blood in my stool again. I told my mother (who is a nurse) all of this and she still does not see the correlation. The doctor doesn't think that it is enough proof to do an endoscopy to see if I have celiacs... I got my blood taken and tested again today and wont know the results for a week. However it may be a false negative since i have only been eating gluten for two days. Am I crazy for making the association between my GI issues and gluten/wheat?

    Also my dad has had bowel issues forever an they just said he has IBS and when he drink beer with wheat he has an allergic reaction (gets itchy and bloated).

    I have been blood tested for celiacs once when I was 17 and first noticed the correlation, however I was gluten free at the time and they came back normal. I am also borderline anemic 0.1 point away from being considered anemic and have been since I was 8.

    I have plans to see a naturopathic doctor after my colonoscopy and hope to get the Cyrex testing done to see if maybe it is some gluten or wheat antibody they aren't testing for at the GI doctor. I also really like the taste of gluten so I dont want to stay gluten free forever unless I know for sure it is what is causing it and not a reaction to something else that gets cut out while cutting out gluten. I dont eat cheese or milk either, im not allergic I just dont like what it does to me.

    So my question is if anyone has any ideas what could be causing these symptoms or if anyone has had similar ones. If so what did you do to figure it out? Im really tired of feeling like s$#& and not having any of the doctors believe me. Any advice is greatly appreciated!
    • 2
      entries
    • 1
      comment
    • 9167
      views

    Recent Entries

    Steph1
    Latest Entry
    I wish all of my responsibilities besides sleeping and going to the bathroom could disappear.
  •