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      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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  1. Bit late, in a bit of irony as to recent conversations and a first for this. I recalled today was the day to rotate off flax seed and onto hemp seed. So I opened up a brand new canister of Jarrow Hemp, and loaded a bit into a test kit like I always do. NOW jarrow I have been using for over 6 years even before my celiac DIA. I have been testing it with EZ strips even before the Nima, reason is early dia, I kept having issues and learned the nutiva hemp protein I was using was always contaminated. SO now by paranoid default I test all hemp products. Anyway back to the subject, this time.....it came back positive for gluten.....this has never happened with this brand, I retested.....same thing. 3 stripes positive, Nima says positive.....ok I love this company. SO I sent a nice e-mail to the company telling them of my issue, saying I love them but....this is a bit unacceptable. I asked them to do some testing on their end and perhaps release a statement to fellow consumers and see if I can get a new canister of uncontaminated hemp.  ....this leaves me with a total stock of 3lbs of contaminated hemp in my house.....unsure what to do with it. SO NOW the only safe source for hemp is GERBS Allergen Friendly foods....really starting to hate these dirty farmers using shared equipment and rotating crops with wheat -_-

    Now for the rest of my life updates. On August 31st my sister had a baby boy and named him Ezra, so I am now a uncle (we are both adopted so no chance of any of my genetic defects).

    My bakery has started doing a chopped and vegan version of Thai Fried Icecream and we are chopping in Enjoy Life cookies into the icecream as a option. The catering and markets are slow but it is gaining interest. On another note the Almond butter sales have dipped so bad now days I have not had to make any in 2 weeks -__- very depressing.  My dream of the food truck is still at a standstill for the gluten free/grain free one.

    I am working on selling one of my recipes to a bakery in California, they will be marketing it and shipping it if the trial goes well with it.

    I have gotten a spice company called Big AXE Spice to take up one of my spice blends the "Vegan Chili & Cheese" one. They are looking into starting production of it soon and it will be available on Amazon. They specialize in salt free VERY flavorful spices and gluten free.

  2. Whos Afraid of a B Vitamin You needn’t Bee?

    An FAQs on Niacin(amide) and how to take Niacinamide and why you would want too in the first place.

    The very definition of a Vitamin is a Vital (life giving) nutrient needed in a minimum amount without which we become sick. 

    This is especially so for B Vitamins

    since the body does not have good way to store more than 3 months’ worth on average.

    STRESS makes us low!

    If you had Cancer and someone told you a Vitamin could help would you try to take it?

    Most people I dare say would – probably readily.

    While unfortunately this is not the case for Cancer but what if you had Beri Beri, or Anemia or (Pellagra misdiagnosed as

    Celiac Disease anyone) and the doctor’s didn’t know or recognize it in a clinical setting see and you were told a Vitamin could help you.

    Would you try a B-Vitamin?

    All these (Beri Beri, Anemia, Pellagra) are diseases (and others not mentioned here like Scurvy and Rickets etc) are disease’s that a Vitamin

    could/does help? And possibly Celiac Disease if you are in the majority of those Pellagra Patients who present as Celiac Disease or NCGS

    presenting as IBS or have Pellagra misdiagnosed. 

    Your disease profile might differentially be called something else. It is a standard practice of medicine called: A Differential Diagnosis.

    You hear this a lot but don’t think about it probably when someone is giving a horrible diagnosis such as cancer we say

    “I am going to get a 2nd Opinion” on that right.

    Well you have asked for “A Differential Diagnosis” of the diagnosis of the disease you have been said to have.

    Often today Common Vitamin deficiencies are thought to be “cured” in the modern world by enriching our foods presenting/revealing

    as Celiac Disease and/or GERD/ Heartburn.

     When stressed you often lack enough of certain B Vitamins to function properly hence disease develops. If a Vitamin could be taken to

    reverse this disease (STRESS) why wouldn’t you want too or at least try?

    We don’t think of STRESS in these terms often but High Blood Pressure is often the first sign of a Folic Acid deficiency

    – the beginning of disease.

    That really is what UN-controlled stress /inflammation is in the body.  It is disease or will become disease if left unchecked.

    What if there was a Vitamin that helped us regulate STRESS in the body. 

    Well there is!

    It is called Niacin (Vitamin B-3) regulates our fight or flight responses.

    All of this requires massive amounts of energy when a shock/trauma affects our system.

    Our body functions break down. And disease develops’.

    This is what happens when someone develops GERD/IBS/NCGS/Celiac Disease (Pellagra in disguise I believe –

    a Niacin deficiency/dependency).

    The longer or more deficient (lower) you are in this cornerstone nutrient (Vitamin) the more of your body stop functioning.

    Yet few people are willing to believe (take) a Vitamin that might help their bodies function better?

    I ask again who’s afraid of a (water soluble) Bee Vitamin that is known to regulate stress in the body?

    Ok great? A B-Vitamin can help me.

    How do I take it and how much?

    Here is where I have been conservation and have recommended (anyone who has read my other posterboy posts) 500mgs of Niacinamide.

    This is for 2 reasons mainly.

    1    The Niacinamide version does not flush the way higher doses of Niacin does.

    So it is inherently easier form to take without feeling you have “overdosed” (Flushed) on this Vitamin (Which is a misnomer) --

    Flushing when understood properly is a healthy response to the Vitamin.

    Niacin is a natural vasodilator allowing more oxygen into our capillaries indicating a sufficient dose of the vitamin has been

    achieved to cause capillary relaxation.

    (This is most pronounced on an empty stomach)

    But since people mistakenly take this as an adverse reaction and why I emphasize the Niacinamide form it is the Non-Flushing

          Amide form of Niacin.

       Since 500mg is the most commonly found size of Niacinamide I recommend(ed) it out of defense mainly.

    Smaller doses work as well indeed -- As a matter of fact smaller more frequent doses works 40 percent better than larger one time doses.

     And the reason I am writing this FAQs about Niacin.

    B-Vitamins by their nature are hard to store by the body so even in larger doses (500mg) as much as half the dose is essentially wasted by the body

    – excreted through the kidneys’ since the body has no long term way to store excess amounts of B-Vitamins.

    And why smaller more frequent doses help 2X to 3X times quicker because the Vitamins serum level’s are maintained for longer periods

    thus enhanced absorption.

    It is not the size above about 250mgs that is important but the frequency of the Vitamin.

    If Niacinamide was widely available in smaller doses 100mg I would of have recommended that instead.

    Niacin is available in100mg doses but can still mildly flush at that dose (especially on an empty stomach without food to compete for

    absorption) and again why by default I recommend the Niacinamide form.

    Medical doctor’s know this and use the smaller doses more frequently when treating Pellagra.

    See this link from the American Journal of Clinical Nutrition


    See their “subjects” paragraphs on how smaller doses effectively treated the symptoms’ of Pellagra.


     The patients were treated according to the standard local clinical protocol and received a 100-mg nicotinamide supplement

    and a B complex tablet 3 times daily for 17 d if an adult or a 50-mg nicotinamide supplement and a B complex tablet 3 times daily

    for 15 d if aged <15 y. In addition, all patients received a weekly food supplement—400 g of a fortified blended food

    (corn soy blend, oil, and sugar)—for 3 wk. Families of the pellagra patients were also eligible for a food ration from the

    World Food Programme, which was distributed monthly for 3 months.”

    **** Note: This is a much shorter time than I often (have) advocate(d) because I want to be absolutely

    100 percent sure these symptom’s will never EVER come back (unless you have more STRESS more on that later).

    But as you can see much lower doses for a much shorter time than 4 to 6 months can works as well.

    I/posterboy say conservatively 3 months (see the time a rich niacin and protein rich food plan was provided) to avoid remission because

    that is the time your body can store most B-Vitamins.

    But the amount is not important it the FREQUENCY that is key!

    By being conservative (some might say aggressive) with how long I recommend to take it (Niacin(amide)) (and the amount see

    above about why I recommended this amount in the first place) people are reluctant to take Niacinamide at ALL.

    And this in turn leads to disbelief that taking a B-Vitamin can help people with GI problems.

    But we see in this study (above link) by the American Journal of Nutrition that even low doses in divided doses as quickly as

    (or as little as a month’s time) can dramatically help people  with the trifecta of Pellagra symptom’s.

    Note: Read the whole article for yourself when you get a chance because it explains in detail how to have your doctor

    check your Niacin levels’ and why this can confirm your diagnosis (but taking the Vitamin can too! As confirmed by

    clinical remission in less than a month on/of divided 100mgs doses)

    But instead Pellagra 3 D’s are diagnosed as separate diseases today.

    See their discussion section (a great read for anyone doing nutritional/medical research) the discussion section is

    most always the “real story” and not the headlines (title) often.  Whatever you are researching beeeeeeee! sure

    to get all the facts of the story not just the headlines by reading the discussion section.

    The American Journal of Nutrition (AJN) summarizes


    “The lack of knowledge about pellagra was slightly surprising given the endemic nature of the disease. However,

    it may be that the symptoms of severe niacin deficiency are so diverse that people do not understand them as a single disease

    and account for them separately using other terminology.”

    And I believe that is why Pellagra explains most of the symptom’s of a Celiac Disease patient experiences today because of the “Lack of Knowledge”

    about how Niacin treats digestive problems today!

    But you won’t know if you are not willing to try it and the reason for the Who’s Afraid of a B-Vitamin post or this FAQ blog post on Niaicin

    and the best way to take Niacin(amide)

    I hope this is helpful.

    By all means please check with your doctor before taking megadoses of any Vitamin even when you think it might help.

    But what could a relatively low dose of Niacinamide 250mg (if you can find it) or Niacin 100mg  with food hurt when it used in

    much higher doses (500mg day to start titrated up to 3 grams a day in divided doses) to treat Cholesterol already by doctors.

    See this link by the mayoclinic that discusses dosing recommendations for Niacin(amide)


    People regularly are prescribe/take Niacin for over a year with no side effect (see Mayo clinic link) and often for twice that time or longer. 

    So I hardly think taking Niacinamide in divided dosages for 1 to 3 months is mega dosing but I understand why people think it is.

    I am not trying to diagnose of treat your condition(s) I am only trying to share/educate you on what helped me.

    For to Educate is to truly free!

    How can you know (learn) these things (about Pellagra) or how/why Celiac Disease could be being diagnosed as Pellagra today if you do not hear!

    And if it helps (your symptoms’) improve in as little as a month (in divided doses) up to 3 to 4 months (to be conservative) then you had Pellagra Co-Morbid

    and now at least your Pellagra is in remission and you can concentrate on just getting one disease better.

    But you say I don’t live in Angola (how does this affect me)????

    I am glad you asked!

    Remember what I said about STRESS


    Stress makes us low! Think car accident, surgery, pregnancy, divorce, medical emergency etc. and so it goes.  Anything traumatic can lower

    our B-Vitamin levels and cause us STRESS! Some of us which will/do not recover from without eating nutrient rich Niacin foods or supplementing

    with Niacin(amide) as they did in the Pellagra outbreak discussed.

    And the doctors have forgotten the old phrase “STRESS KILLS” and surely war kills people but many (most) of those who die don’t die immediately

    from a gunshot or wound but stress of surviving has harmed them.

    But we forget before STRESS kills us it maims us first.

    So too does it (harm/ maim) us first us too the same way!

    In our doctor’s eyes they see the same thing.  It is just stress you will live.

    But not recognizing this condition soon enough can lead to death in time.

    See this link that discusses why this is commonly misdiagnosed in most doctors’ office’s today.


    Quoting from the Dermatology Online Journal

    "Pellagra is a nutritional disease caused by the deficiency of niacin. It presents with a photodistributed rash, gastrointestinal symptoms,

    and neuropsychiatric disturbances. In the Western world, this disease is mostly confined to alcoholics or the impoverished.

    However, this condition must be recognized in other clinical settings because it is easily treated and can be fatal if not identified."

    And this great summary of Pellagra and the 4 D’s which I think now are the 3 D’s of Celiac Disease.


    YOU will only know if you are not afraid of a B-Vitamin. You needn’t Bee!

    And by writing this (if) I put this dosage information all in one post maybe I won’t have to write it again and again in each thread I comment on.

    I repeat for(e) emphasize. For to Educate is to truly free!

    How can you know (learn) these things (about Pellagra) or how/why Celiac Disease could be being diagnosed as Pellagra today if you do not hear!

    Good luck on your continued journey.

    I could write many more pages on this topic because it has helped me soooooo! much but need to quit so as to not bore you too much

    and it is getting longer than I planned. (sorry about the formatting every time (I try to import a post it messes up my formatting) and thank you in advance for

    anyone who reads this.  I truly hope it helps you the way it did me!

    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 which are in any trouble (starfish those still suffering),

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

    **** 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.

    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,


  3. badcasper
    Latest Entry

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


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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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    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....

  4. 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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    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! 😡

  5. 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”.  

  6. 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!

  7. 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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    [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]

  8. 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.

  9. 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.




    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


    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.

  10. 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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  11. [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]

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    [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]

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    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
  12. 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!

    [*]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
    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!
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    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.
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    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!
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    I wish all of my responsibilities besides sleeping and going to the bathroom could disappear.
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    Is anyone using the Celiact Gluten-free Vitamin Support supplements finding them beneficial?
  13. Hey, everyone!

    So, I went to the doctor's yesterday with my loving boyfriend and I got diagnosed with Turner's Syndrome *sigh* My karyotype tested positive much to my dismay :unsure:

    And, also, I tested positive for osteopenia from my dexa scan as well. So, I have to get my bones back into shape so it doesn't progress into fractures and such. Anyone have helpful advice for me? I would appreciate anything!

    I have more testing coming up back with my normal clinic, but, it's just double checking things because of my brand new diagnosis. My thyroid tested fine and well as my adrenal glands too so that's good. I was also told that I do have a chance for children so that made me really happy!

    Also, I'm being re-tested for Celiac with IgA and IgG testing. My endocrinologist didn't like the other test (which I've posted the results on these forums) or something - that was a confusing part of the appointment.