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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.


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  1. Prologue I never know what to call a post. What Else Could it Be; Co-Morbidity in Celiac disease and what else could be causing your Celiac like symptoms or I had Celiac Disease and developed Pellagra. This is my story yours may be similar. I have tried to write as much as I could of this beforehand to summarize some of my experience and research since I was first serology confirmed a Celiac and why I think Pellagra explains if not all the complications a Celiac develops at least many of them seem common in undiagnosed Pellagra but I find formatting and links can be a challenge.

    This is not meant to be an answer to all your questions but a beginning,

    posterboy by God’s Grace. See post that follows “I had Celiac disease and developed Pellagra”.

    Good luck on your journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”.


    I had Celiac Disease and developed Pellagra

    I try and educate about how Pellagra can be confused for Celiac disease and/or GI problems like IBS, GERD, Ulcer’s, UC etc. after having received a Celiac diagnosis and my symptom’s improved greatly after taking Niacinamide (the non-flushing form of Niacin).

    And almost without fail people do not see the connection. They say but I have … . fill in the blank.

    They don’t see the connection.

    But if I say it this way maybe it will help you “I am a Celiac who developed Pellagra” or fill in the blank … . heartburn, IBS, UC, Chron’s etc.

    I named this post this because another board/forum member said as much in a thread post on this forum and it struck with me. She had the digestive problems of a Celiac but also the dermatitis issues of DH and her itching got better after taking Niacin.

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

    Since this happens gradually you develop heartburn first then you have IBS, and Constipation and diarrhea then maybe an ulcer etc we don’t often see the connection.

    But all along it was the same disease in a more pronounced condition.

    If we catch it early enough say at IBS then the ulcer or UC might not develop.

    When we think spectrum of disease it helps us to understand these diseases’ can be and are more related that we often understand.

    They are all bound by STRESS. Do not all these conditions worsen when you are stressed does not the heartburn turn into IBS i.e. your constipation and diarrhea flare up?

    Yet we think of them as separate diseases Right?

    No there is a continuum of disease bound by STRESS and TIME.

    The longer the stress the more your symptom’s Right!

    You just haven’t stopped to think about the relationship.

    Relationship and time is important to a proper diagnosis.

    So how are these related?

    Our mucus membranes are always in a constant state of repair either of repairing or rebuilding what is broken or maintaining our bodies defenses.

    This takes energy and lots of it and one is not able to make enough energy to repair the lining of our stomach without enough Niacin and Pellagra develops.

    I am not even saying I have been cured of Celiac disease. I say my GI symptoms are in remission which leads me to Pellagra as a cause and effect relationship of stress and our environment — Epigenetics.

    I am saying I was/am a Celiac who developed Pellagra.

    The International Journal of Celiac disease notes that both Pellagra and Celiac disease does often occur in the same person.

    How do we know this?

    The Journal of Celiac in an issue entitled Celiac Disease Intestinal Heart and Skin Interconnections when listing common aspects of both diseases’ says and I quote “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease.”

    Which also explains why a Genetic disease can increase in two or three generations because our stress changes our genes.

    There is a trigger. Stress — it is not your day to day stress. We can handle all that kind of stuff but TRAUMA lasting 3 or 4 more months at a time. Think when Celiac disease was first studied as a Disease? It was during and directly after WWII and I dare say a stressful time to say the least.

    Not to mention all the energy needed day to day to just survive. Europe almost starved after the war.

    So much so he U.S. government had to step in and help deliver/air drop humanitarian aid to Europe.

    It was called the Marshall Plan named after the man who devised the relief plan and it is credited with keeping Europe alive after WWII and averting another possible world war because of the infighting that would have developed from a starving Europe.

    3 to 4 months is approx. the exact time we can store B Vitamins. Anything that triggers the fight or flight high energy response (TRAUMA) that depletes our bodies reserve’s.

    Stress is coincidently what Niacin helps us control. It (Niacin) helps control our stress response’s in the body without which cellular disfunction happens (are membranes brake down). Like the alternating constipation and diarrhea you have had for years if you have developed Celiac disease.

    Things like a Car Accident, difficult divorce, injury to our kids, extended care giving, surgery etc. can and often does trigger GI problem’s. And yes the stress of pregnancy.

    And it (STRESS) is common with with/before a pregnant lady gives birth triggering heartburn.

    A good example is pregnant women in their 3rd trimester often develop heartburn that’s goes away when the child is born.

    Those who are predisposed continue to have heartburn and GI problems because their body couldn’t meet their need. Half of pregnant women develop heartburn during pregnancy that goes away in all but about 1/3 of those who get heartburn when the child is born.

    Think of Heartburn as infant Celiac disease if it helps you to think in these terms. The older/longer the heartburn persists or the more GI symptom’s (heartburn/GERD/IBS, Constipation, diarrhea, ulcer etc) reoccur the more serious the conditions and diagnosis becomes.

    The genetic component is that 1/3 are predispose to high Niacin consumption when stressed.

    It is those1/3 of us who had Pellagra and Celiac disease developed is who I am trying to help.

    But it should be noted up and until your Celiac diagnosis things like the Ulcer, UC, IBS etc can/could be helped also if Pellagra is the Parent diseases and all these other diseases are its children.

    Co-Morbidity is the term.

    A B-Vitamin deficiency can be inherited but does not have to be permanent. It is a reversible condition.

    See this new research that ties eczema in babies to low Niacinamide in the mother during pregnancy. Nicotinamide is usually the way Europeans spell Niacinamide. Both names refer to the same amide form of Niacin.

    The very definition of a Vitamin (especially in the case of B vitamins) a vital (life giving) nutrient/substance needed in a minimum amount without which we become sick.

    Your continuum of diseases are completely reversible if your symptom’s look like Pellagra (digestive, dermatitis and dementia’s) in nature and your respond (BURP in 3 to 4 months) to Niacinamide you might have Pellagra and the doctors have not figured it out in a clinical setting (they are sub-clinical) yet or at least you (may) have Pellagra and Celiac Diseases Co-Morbid.

    If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Really there are 4 D’s more on that latter but we are trying to catch Pellagra before it gets that far.

    The International Journal of Celiac Disease notes this co-morbidity when they note in 58% of Celiac -- Pellagra ALSO occurs.

    See this link

    Quoting their paragraph 3 on the Co-Morbidity of Celiac and Pellagra together

    3. Pellagra and Celiac Disease

    “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]. “

    58% of the time (that is a majority folks) Celiac’s go on to develop Pellagra too!

    Or is it really the other way around? Have you had Pellagra all along and now you have developed Celiac from it (Pellagra) undiagnosed.

    The later may be more true than you know.

    Ask your friends if they have ever heard of Pellagra. I dare say it a low percentage that knows Pellagra a once rampant disease especially in the rural south can cause many of the GI problems you are now experiencing as a Celiac disease patient or even the Non-Celiac Gluten Sensitivity (NCGS) patients that have not yet received a Celiac diagnosis.

    And it maybe a lower percentage today that know what Pellagra (or even that they could have it) is than have heard of Celiac disease or think they have Celiac disease instead.

    Think beri beri, rickets, scurvy etc all complex diseases completely forgotten about today that were/are completely reversible conditions.

    As Dr. Heaney points out about Pellagra today!

    That as Creighton’s University Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine post here at this link

    The knowledge of Pellagra (if you have ever heard of it) is in that same state of forgotten diseases now thought relegated to the history books.

    If you have Pellagra co-morbid then you just have to take a Vitamin to get rid of this morbidity.

    This is a summary of my 10 year journey.

    I researched these things for 3 to 4 year (2 Tim 2:7) before I had the courage in my conviction to test this Pellagra theory.

    But I think most people would rather hear from some who has suffered like them and has been able to help themselves. This is not theory anymore for me. It is my story.

    In case this is the only post you read I will repeat here for knowledge sakes ****** the number one mistake people make when taking Niacinamide is they don’t take it often or long enough. It should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 3 to 4 months or less taking it 3/daily — ie with each meal.

    What do I mean by burping? This confuses some people sometimes.

    I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated.

    But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp -- Burping without the bloat and distension (pain from gas) that comes later.

    When your stool begin sinking your body is digesting the carbs and proteins that were causing you the backwash (heartburn/GERD/IBS) before when you only burped a little or occasionally or when you drank something carbonated.

    Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 3/day for 3 to 4 months at a minimum.

    Dr. Prousky proved this 15 years ago this past November that Niacinamide treats digestive problems.

    Yet 15 years later people still are bemused when you mention Pellagra let alone that Pellagra could be contributing to your Co-Morbid Celiac disease.

    I for one will tell those will listen. I am a Celiac who developed Pellagra.

    Learn from my mistakes so you don’t have to repeat them and get your doctor to test you for a Niacin deficiency.

    Pellagra once rampant early in the 20th Century is now known TODAY as Celiac disease in the 21st Century (I believe) or at least in a good majority of cases could be.

    To paraphrase William Shakespeare “Disease by another name hurts just as much” and maybe more because if you get the right disease you can get better!

    You know have the power to help yourself forum reader (because knowledge is power) the question is what will you do about it?

    This blog post is a store house of 10 years of research learned from life experiences. The blog’s author has been stung so you don’t have to be.

    Learn from my mistakes.

    No man is so dumb as the man who won’t learn from other people’s mistakes. Take as much honey (knowledge) as you can from my mistakes so bad health will not sting your quality of life.

    Is it any wonder God’s promised land was described as a land flowing with milk and honey?

    Where knowledge flows there is health of mind and body.

    Feel free to ladle and dollop your life with the sweet stickiness of the truth (knowledge) found/ gained today. For honey like truth stick to you once in contact and you can’t just wash it away.

    Don’t let them the doctor’ almost kill you before you are willing to take a Vitamin to see if it is really the Co-Morbid Pellagra as the International Journal of Celiac Disease notes that could be causing your Celiac symptom’s in the MAJORITY of Celiac patients if the International Journal of Celiac disease is correct.

    Quoting again from the IJCD “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38].”

    See this link provided again for easy reference

    Stop the madness! Admit the MAJORITY of Celiac Patients today are Co-Morbid with Pellagra and if you treat the co-morbid disease you can get better from that morbidity.

    The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!”

    If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.”

    See Dr. Heaney’s Professor of Medicine discussion about why Pellagra is not diagnosed today here at this link

    This blog post is about the ignorance (of) Pellagra cost’s you when the doctor’s diagnose you with Celiac Disease/NCGS when 58% of their patients is/are Co-Morbid with Pellagra and they get the wrong “key” diagnosis.

    **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found and my friends have found if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) and your stool SINK then 95% of your GI stress will be in remission.

    You could still have other things that are bothering you but it won’t be Pellagra. If you take fiber and still have GI trouble then eliminating supplemental dietary fiber for 30 days (like you did to see if gluten was your’ problem) might help you figure out whether the fiber is helping or hurting your GI problems. People do have bad reactions to fiber sometimes that can be confused for IBS problems and unless you try eliminating it for 30 days you won’t know for sure if it is causing or contributing to the remaining GI problems you might still be having after taking Niacin until burping if any.

    As I am fond of saying “To Educate is to truly Free”.

    But do not do as I did! Learn from my mistakes.

    DO NOT take Niacin or Niacinamide or any form of Niacin UNTIL you have your doctor’s test you for it (Pellagra).

    If you notice the IJCD link these were clinical observations only.

    Quoting the IJCD again “It is the first description of celiac disease . . . .and Pellagra in the same person, however, only associative linkscan be established, but not cause and effect relationships. Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated.”

    You probably know this by now if you are a Celiac or even a NCGS patient the diagnosis rate for Celiac disease can be a horrible and if you have Pellagra it is even worse because the doctor’s like Celiac disease 15 or 20 years ago are not even looking for it today.

    One more test needs to be done to differentiate Pellagra from Celiac and it is not being done today as Dr. Heaney correctly noted. Doctor’s don’t know to look for it (Pellagra) much less in a Celiac patient.

    See this link to the Merck Manual a commonly used traditional desk reference for Physician’s when they need to look up a diagnosis.,-dependency,-and-toxicity/niacin

    Quoting from the Merck Manual “If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency.”

    No, doctors don’t know everything they have to look things up from time to time too. And when they do look up Pellagra when you ask them to test you for it the way some people on this board went to their doctor’s to have them test for Celiac disease instead of accepting as Gemini on this board said and say you had IBS instead “I Be Stumped” they learned/were taught by their patient’s that Celiac is not as rare as once thought.

    And neither is Pellagra.

    Quoting the Celiac Posterboy “Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!”

    Why is this?

    The pellagra disease blog explains why this is

    Quoting Niki Frost “Since pellagra is (thought to be my words) such a rare disease today, few people recognize it based on their symptoms alone (any of the three D’s: dementia, dermatitis, and diarrhea). Pellagra patients are consequently (constantly being my words) referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.”

    So the cycle repeats. Since these specialists don’t consider you in a subgroup that is prone to be diagnosed with Pellagra then Celiac/NCGS disease is diagnosed if you are lucky and not some other GI problem like chrons, IBS, UC etc because in these cases the GI specialists is not even looking for Gluten as a possible trigger.

    This is not to even mention the other D’s of Pellagra today being diagnosed as various degrees’ of Dermatitis like ezcema, psorsias, Dermatitis Herpetiformis (DH) etc which are related to skin presentations of Pellagra. Pellagra when it was first named means rough/sour skin in Italian and people forget that today.

    Or the dementia’s of Pellagra like depression (40 percent of Celiac’s are depressed) or the “brain fog” a Celiac develops after being “glutened” I could go on and on but you get the idea.

    But unless you are tested for it your doctor’ won’t know to look for it in their next Celiac patient because they do not know to look for it in GI patients today remember the war on Pellagra ended 75+years ago so they don’t look for (see) Pellagra anymore in a clinical setting unless you are in a subgroup like being an alcoholic etc . The same way they didn’t or might not of known to test their IBS patients for a Celiac diagnosis 10 or 15 years ago.

    I am not saying this will help you the way it seemed to help me. But I am saying have your doctor verify these things for you before doing these things because if you are a Celiac that has developed Pellagra also then it needs to be documented.

    If you want to read more about my story search for the posterboy on this board to read my other forum threads or visit the website in my profile.

    I have specifically left out dosage amounts because the frequency you take a B-Vitamin is more important than the amount you take of it.

    Because B-Vitamins are water soluble 2 or 3 hours later if one is deficient in that Vitamin then the body can absorb more of it. So taking higher doses don’t necessary help you any more than lower doses. They (higher doses 500mg) can be easier to find especially if you are taking it (Niacin) for cholesterol management but it doesn’t help you any quicker than smaller amounts more frequently and higher Niacin causing flushing (which can be mitigated to some degree by taking Niacin with food) where the Niacinamide form doesn’t.

    In fact taking smaller amounts frequently 3/day with meals will help approximately 40 percent faster than one larger 500mg capsule/tablet only once daily.

    And why if given a specific amount and you retain it (is low in the urine) is a sign you are low in Niacin. I do prefer the Niacinamide form because it is a naturally flush free form.

    The Merck Manual notes this quoting “Nicotinamide is usually used to treat niacin deficiency, because nicotinamide, unlike nicotinic acid (the most common form of niacin ), does not cause flushing, itching, burning, or tingling sensations. Nicotinamide is given in doses in doses of 250 to 500 mg po daily.”

    But a Slo-Niacin can work just as well.

    The Townsend Letter makes note of this in their Feb/Mar 2003 edition.

    This will be a cycle. You will take it until burping 2 hours after you finish your meal and your stool sinks where before it floated and even water now causes burping without bloating or gas or distension.

    It might be 3 or 4 months for some people or it might be even 6 months or longer for some people. But it is a cycle. Usually people feel better when they begin burping for the first time in years and their stool now sinks when before it always floated.

    I do not now take Niacinamide and haven’t for several years since my symptoms’ are in remission.

    I stopped taking it when I had rebound acid reflux. By that I mean I begin to have acid reflux symptoms when I had no food in my stomach that when away when I ate something.

    Timeline is important in any diagnosis.

    All heartburn is not equal.

    IF your stomach acid was HIGH as you often hear then eating food (carbs, greasy things or your other triggers) wouldn’t bother you because it would only weaken it.

    BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight you are in and things (carbs/fats) become to ferment, rancidify and cause heart burn.

    The excess pressure from fermented carbs push open the trap door allowing the low acid you have burn the lining of your esophagus.

    TRUE heartburn from too HIGH acid happens between meals when there is no food in your stomach to tamp it down and will occur if you take Niacinamide too long and how I knew I needed to stop taking Niacinamide.

    When low in stomach acid for too long in time this can lead to Non-Celiac disease first and with enough injury to Marsh lesions qualifying you for diagnosis as a Celiac candidate/patient.

    How do we know this?

    Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. reports these findings

    Note how the researcher’s starts the article

    “Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.”

    If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what they are postulating.

    They go on to say without being very technical (read the whole article for yourself) that

    “The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.” . . .. Summarizing their findings

    “The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship”.

    Now the term causal is not used lightly. To prove causal is much harder than casual (occurring with) like the 58% of Celiac who are also casually observed as having Pellagra.

    Gluten Free works summarizes a casual association of a Niacin deficiency very well at this link

    They only note a casual association only noting similar symptoms occur in Pellagrin’s too.

    Quoting “ Inadequate levels of niacin slows metabolism and impairs functioning of the brain and nervous system, digestion, skin, DNA repair and other key cell processes, and steroid and sex hormone production. Severe deficiency of niacin causes the disease pellagra.2 “

    I can not prove that Niacin helped me because I did not know to test for it or have the doctor test me for it but you can teach your doctor to look for i it in you if you are an IBS, NCGS, or Celiac patient by sharing the information in the Merck Manual with him/her.

    To prove causal you will have to have your doctor test you for a Niacin deficiency verifying the International Journal of Celiac disease casual observation that the majority of Celiac are co-morbid with Pellagra establishing if not a causal link that it at least contributes to your concomitant GI conditions in at least the 50 percent of Celiacs’ who are low in Niacin and don’t know it.

    Taking the Niacinamide as the Merck Manual notes in their key points for doctors can confirm the diagnosis.

    Quoting “Use nicotinamide/Niacinamide to treat the deficiency; a favorable response can confirm the diagnosis.”

    If you want to research more about Pellagra and how it can present as so many different diseases and its clinical presentation(s).

    I say presentation(s) because if it begins with a “D” i.e., dementia, dermatitis or Digestive Disorders(s) (I added the S to Digestive Disorder because I think it speaks to the spectrum of diseases) that Pellagra can and is often confused for in modern medicine. And could be added to dementia(s) and dermatitis (s) see above about depression and Celiac and Pellagra meaning rough/sour skin in Italian and the Hindai link below to do more research on Pellagra if this blog post is not enough to answer all of your questions.

    Read this great Hindawi article linked below for a great synopsis of Pellagra

    where they pose the question what role does Pellagra play in contemporary disease (today)

    In one of their breakout paragraphs talking about Pellagra today! They discuss how Pellagra is still prevalent today in contemporary disease pathways entitled “Is Subclinical Pellagra Relevant to Contemporary Disease?”

    And they list a dozen plus ways it is and I whole-heartily agree and I hope you do too after reading this post. And doing some of the research listed therein.

    It bears repeating though I said it earlier **** Note: 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.

    Good luck on your journey and I hope it helps you the way it seemed to help me.

    Posterboy by God’s Grace!

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

    Blessed are those who will hear and take a Vitamin for their health or at least have their doctor check their Vitamin levels so they can get better from that morbidity if indeed as the International Journal of Celiac disease notes – Celiac’s are co-morbid with Pellagra in the Majority of celiac patients and the doctor’s don’t know yet to test for it but by having your doctor test your urine for low levels of Niacin it indicates you are retaining Niacin to maintain and repair your membranes the doctor can treat you for this morbidity a sign of undiagnosed Pellagra today.

  2. I have for a long time considered expanding my gluten-free bakery from a cottage home bakery to one where I can sell my snacks, baked goods, and almond butter at other venues and start shipping orders. Pretty much everything is in place aside from having a separate cooking area from my huge home kitchen to make the stuff in. And Finally I worked it out, comes out much cheaper and I found a brand new trailer with a full kitchen set up and concession selling window for under $15k locally. I just need to raise the money somehow and get it then I can work at selling at other farmer markets, conventions, events, and start shipping my almond butters and snacks.

    The trailer even has some things I do not need in it that will be donated to my local church such as a brand new hotdog, and popcorn machine, which my church can use at fund raisers and camps they run all the time for the kids. As it is right now they rent them anyway so this would be a huge help to them. I then plan on replacing those spots with my Almond butter stone mill and a counter top convection oven/roaster for roasting almonds and making baked goods. It already has a brand new huge freezer, smoothie mixer, fridge, microwave, and a new soft serve machine that will be perfect for making my vegan sugar free ice creams that I make for myself daily anyway. This is truly the perfect set up and similar builds from others look like 17-23k usd so this is a bargain, almost like god is showing this to me.....I just hope he can give that helping hand with the funds now and helping me to help others. Lets face it what sucks about having celiacs disease at conventions and out in public places is that food trucks always have cross contamination issues......imagine a fully dedicated food trailer ran by a celiac for celiacs and those with gluten sensitivities. Not to mention it will also be free of dairy, peanuts, soy, and corn, with a goal of providing low sugar/starch gluten free food and snacks.

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    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 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....

  3. 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, 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! 😡

  4. 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”.  

  5. 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!

  6. 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 asshole, DON'T be an asshole. 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]

  7. 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.

  8. 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 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.

  9. 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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  10. [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
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    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
  11. 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 never really knew what was wrong with me, but I always knew I didn't like a lot of foods. Some I didn't like because I had strange reactions to them. I have not been diagnosed but the change in my diet is amazing. I just changed my vitamins and wow, its like they work. My aches and pains have improved. my energy level is back to normal. Im trying very hard to learn every food that gluten is hidden in or even cross contaminated. I have been glutenwed twice since I went gluten free. I have been having issues with constipation although I drink prune juice and eat prunes. I just tried eating an avocado and that really seemed to help. Does anyone have suggestions for brand foods that are pure and or better and what not to buy? I'm tired of buying foods that I have to give away.I am 50yrs old and have arthritis as well. I'm currently taking birth control pills because my period has amnesia, it can't remember to stop. Hopefully in time I won't need those either. I haven't eaten out since and I'm scared to. Lucky for me, I haven't suffered from the vomiting or diarrhea. Im sure it has a lot to do with the bland diet I have been on for years [ rice, kidney beans, pure pumkin puree, ect.] that got boring and I started eating a lot of junk food- none which was gluten free. I had symptons like mouth sores, burning throat, nausea, tiredness, excessive gas all the time,migrains all the time, bad periods even while on the pill, depression, insomnia and I think that's everything.
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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 shit and not having any of the doctors believe me. Any advice is greatly appreciated!
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    Latest Entry
    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?
  12. 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.
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    Gluten Free Pioneer
    Latest Entry
    Last night I made a pot of spaghetti sauce.

    Ingredients: two pounds of ground round beef, one whole red onion, one green pepper, Mccormicks garlic salt, kroger brand oregano, kroger brand basil, salt, pepper, hunts tomatoes, tomato sauce and paste. (Tomato sauce and paste were Hunts)

    I felt glutened after eating a bite of the sauce, but from what I've read I wouldn't feel the effects that soon.

    I also read that some basil could be cross contaminated.

    I was glutened badly 4 days ago so some of the effects could still be lingering.

    Anyone think any of these ingredients contain gluten? I don't want to eat another bite until I am sure.