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

Enzymes, Beta Blockers, Others

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Greetings to all of you! I am a 27 yr old type 1 diabetic that was recently tested for Celiac. Fortunately, my results have come back as negative. However, I do have a 64 year old mother who was diagnosed with Celiac roughly 4 years ago. A year prior to that she was diagnosed with Fibromyalgia, and to top things off two years we discovered that she had become a type 2 diabetic, so it's been a handful. Her endoscopies do reveal some damage to the villa consistent with Celiac Disease. Thankfully, however, her last Endoscopy in April revealed that her condition had improved, so I'm hopeful that things will be ok now. I am really thankful in that I was able to get her in for an exam with Dr. Murray at the MayoClinic this fall, so I'm hoping that we'll see some improvement for her here on out.

I have read through several of your posts, and can't help but notice that many of you speak of having pain. As I had mentioned, mom was diagnosed with Fibromyalgia one year prior to having been diagnosed with Celiac.

To make a long story short, I fought and fought with her physician to get an MRI done on her entire spine. As the years have passed, the pain she had been expierencing in her lower back and frontal region of her thighs continued to worsen. It is now to the point where she has difficulty walking, and seems to have pain throughout the better part of each day.

The MRI results came back with a diagnosis of a relatively harmless condition named Spinal Stenosis. She is due for minimally invasive surgery next month, and her Neurologist believes the surgery should, for the most part, completely take away her pain.

On the surface, it would seem that Celiac and a condition such as spinal stenosis would not have a direct correlation. Nonetheless, I felt I should mention these findings on your forum in the event any of you are experiencing similar pain and there was an unknown link between these two conditions. I have read where Fibromyalgia is commonly found in sufferers of Celiac, yet years later we discover that mom never had such a condition to speak of. It was a simple nerve problem all along, so I would have that investigated if you suffer with like symptoms.

I believe this example is also a testiment to many of the poor physicians we have out there, personally. It's the ultimate example of the "rut" so many of them get stuck in. Many will try to glance at a person and diagnose conditions with the naked eye. If you're lucky, they may run a blood test or two, etc. Now, those of you that are in here are most likely those that are best informed in regards to the disease that you have. However, based on this experience, I would urge each and everyone of you to relentlessly pursue each and everyone of your symptoms until you find comfort. Stay right on top of your physicians-be the annoying critic, be a complainer, etc. If you don't speak up, you're not going to get anywhere, afterall. In addition, continue to research your systems in your free time, if you must. In Mom's case, I learned of spinal stenosis a year before it was diagnosed through one of the many, easy to use online sources highlighting medical conditions.

Countless times I had pointed out to her physician that the possibility of the very condition she was diagnosed could in fact be a strong possibility, yet my pleas for the MRI seemed to always fall on deaf ears. Than, sure enough that's what her condition was.

I'm 27 yrs old, I work for a bank, and I had a 2.9 in college with a Bus. Adm degree. Yet, after you do some research, not only on Celiac but that of general immunity, you'd be amazed just how fast one comes to be on a relatively equal playing field as many of these physicians. I was once told that your average PA or IM physician has spent one hour learning about the hormonal system in med school. If that's the case, I guarentee you he/she spent a great deal less time on the more rare gastro conditions. Again, I urge all of you to educate yourself on your individual symptoms, your individual patterns. The information is out there, believe me. You only have to find it, and the internet makes that a very easy thing to do.

I do have a question, however, if any one of you may have some background on this issue-enzymes. Does anybody have any info on this realm of the disease? I have read that they believe Celiac Disease is more less caused by a lack of the P450 digestive enzyme. Others believe it's related to an Amylase deficiency. These may even be the same thing, I don't know.

A few weeks ago I gave her a digestive enzyme complex to take, along with Acidophillus, Apple Pectin, and another Frutcose based probiotic. She did have stomach/peptic (Not of the intestine) ulcers back about a year ago, of which she was prescribed a heavy 3 week dose of antibiotics. Because she has also been a Tylenol user, I felt that some of these probiotic and enzyme formulas would be good for her as long as they are gluten-free.

Since that time, however, I thought I came across an article that mentioned Celiacs maybe should not be taking certain enzymes. Does anybody have any suggestions on this particular dynamic?

The 2nd is more of a general question-Were any of you taking any of the beta blocker drugs (Blood pressure) at any point prior to being diagnosed with Celiac? Mom has been on one for about 5 years, and it seems that she began taking this drug shortly before all of these problems came to be in her system. Coincidentally, I was placed on one for about a year. I stopped taking the drug about six months ago, and I can't begin to tell you how much my overall health has improved. Beta blockers have the potential of causing drug induced Lupus, which goes away after you stop taking the medicine. But Lupus and Celiac are both believed to be autoimmune related disorders, so at times I can't help but wonder if it's possible some of these medications, like the beta blockers, may not interfere with the autoimmune system as a whole. Who says they have to "Pick" just one (Lupus), in other words, you know? While I was on that medication, I swear that I reacted to just about every food, med, or vitamin I came into contact with. The med didn't cause these reactions, but it seems that it opened up the door to making everything else that I came into contact with an irritant. Once I quit the med, those symptoms went away just like that. So that's why I was a little curious with that end of things.

Thanks so much for any help any of you may be willing to offer. Good luck in your battle. Thankfully, the serious risks involved with this disease are quite small if you do things right, which I'm sure most of you do. So keep up the good work and you'll be just fine. All the best to you once again. God Bless, Kevin

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That is a very interesting comment about beta blockers. I was switched from a calcium channel blocker to a beta blocker and that is when my symptoms started to appear. I have asked every doctor if there is a relationship and they all said no. My gi told me that the calcium channel blocker was constipating and thus masking my symptoms, but in the back of my mind I still wondered if there was a connection and now I am starting to get joint pain. I would be very interested in knowing about any research you might know of in regards to this.

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I have been taking a beta- blocker ( tenormin) for several reasons and

for several years. I used to have a very rapid pulse at the same time I

was developing a thyroid nodule which was later removed. Also I have

suffered from migraine headaches since the age of 13 and beta blockers

can sometimes prevent them and also for high blood pressure. A long time ago

I read a book about "How to Control High Blood Pressure without Prescription

Medication" written by a physician who criticized physicians for using beta

blockers because of the side effects on patients. I asked my MD about

this and he poo-pooed me and said I would have to be on it the rest of

my life. Since reading your post I am going to look for that book again

because there was a whole chapter about beta-blockers. I don't make a

practice of "bashing " doctors because I have been a nurse for so long

and I know and respect a lot of "good" physicians, but I believe there

is much lacking in Med schools. My own physician is so quick to send

his patients to specialists when he could probably handle many things on his

own. I think they are so afraid of law suits. In my case I was glad that

he sent me to a gastroenterologist because it led me to a diagnosis after

many years of suffering. Had I not moved to a new town, I might still

be getting sick.. :unsure:

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that is the same medication I take and it is on the list of medications causing drug induced lupus. I, too, take it to regulate my heartbeat since I am prone to palpitations. I wonder though if the palpitations are caused by celiac and now gluten-free would I still have to take that type of meds, (my blood pressure is still high though). I am going to insist on changing the medication and see if my joint pain goes away.

Here is a web page I found


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I must again make note that I am not a doctor, and I certainly have never had any formal medical education to speak of, so I could never suggest to any of you that it would be wise to stop taking beta blockers. Doing so is very risky if you have been on them for a long time, for doing so can cause one to have a heart attack. If you and your physician would agree on a replacement medication, he/she will advise you to withdraw from your medication VERY GRADUALLY. Suddenly stopping the medication can be very dangerous.

I should also note that I was on one for only a few months, not years. It may be that once you have developed the damage to the villa you have Celiac at that point, and that cannot be changed.

On a personal note, I do plan on speaking with my mom's doctor so that I may request that she be slowly withdrawn from the medication and be put on a replacement. Beta-blocker induced Celiac symptoms may well be an unlikely theory. However, based on my personal experience with that medication, and the GI symptoms I soon came to hold that went away upon withdrawal, I would be lying if I did not tell you I believe it is something worth exploration if a definitive link can be traced back to the start of the medication, and that of your symptoms.

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PS-I lost track of which one of you mentioned the irregular heartbeat (Why I was placed on the beta blocker), but I should note that I had some luck solving that problem, too.

Because I am diabetic, my doctor did perform several tests on my heart to try to figure out just why I was having the racing heart. I've had Diabetes since I was 15 months old, and I have been Blessed in that I have no known complications from the disease to the day. However, anytime something like that comes up they will examine such a symptom in great detail, which is why I had the cardio tests.

I was immediately given the EKG, along with an Echo w/stress test, all of which came back normal. However, they did catch the racing on a 24 Holter monitor.

I noted that I had consumed "Ensure" energy drinks at which both times the test revealed my racing heart over the course of that 24 hour period. As many may be aware, Ensure is nothing more than a bunch of vitamins added to a milkshake.

Soon I began to recognize that several of my symptoms seemed to occur anywhere from 1-4 hours after either having had consumed an Ensure, or that of the many vitamin supplements I take each day. To make a long story short, over the course of a couple of months, through a slow withdrawal pattern, I was able to determine that my heart was taking off after having taken either an Ensure, or a general multi vitamin.

I pleaded with my physician to test my serum levels for several of the common vitamins and minerals, but that, of course, fell on deaf ears. I was told that "Regardless of the human diet, it would take something extraordinary for a person my age to be deficient in anything." Little did Dr. Einstein know, however, that Thiamine and Magnesium deficiencies are quite common among Diabetics. I showed him literature on the topic, but he refused to even look at it. "Just take a vitamin supplement," he said.

Well, I finally researched this possibility in full among those that offer "Internet" testing, and I found a company that not only tests for several vitamins, but did so by going directly into the white blood cell. I'm sure many of you have been given the B12 w/folate serum test and, based on that, you have been told your absorbtion rates are just fine. Wrong!

I ended up finding a physician that was willing to draw my blood at a local lab for this test, so I had it done. As I had expected all along, I was quite deficient in Thiamine, B5, Magnesium, Inositol, and Choline. I than took high dosed supplements of these that I was able to find in a multi vitamin, and low and behold-the racing heart gone.

Why did I react so adversely to the Ensure drink or multi-vitamin, especially when given the fact that I was deficient in these? I don't know. Nobody could offer a just explanation for that, I suppose.

But as Celiac patients, you understand that malabsorbtion can be a major role player in your illness. It is among all of the autoimmune diseases. While no supplement will ever give you the amount of pure nutrition natural foods do, it may be a necessity in some cases. It was for me, anyway.

Going back the B12 w/folate test they will often perform, it is the best lab test available to gauge overall nutrition (That and the CBC), but you cannot convince me that it's the "Pure portrait" most of these amateurs believe it to be. They choose B12 because it is believed that all B vitamins, and that of several minerals, directly affect B12 in one way or the other at the cellular level, so it is thought that if your B12 levels are off, the "Process chain" isn't working properly, so you are deficient in something along the chain.

But what if you have too much Thiamine in your system, and too little B6? What happens than? Do the good doctors know what affect such would have on the B12 test? Is it enough to throw off the B12 test, or could the two possibly compensate for each other? The fact of the matter is that the world's finest chemists don't have the answer to this, so your doctor isn't about to have that answer, either.

The only way to know precisely what your nutritional levels are is by way of measuring the each of the essential nutrients. After extensive research, it is of my opinion that the most accurate measure we have available is by examining the nutrition of the actual white blood cell. The serum test is simply a measure of the circulating nutritional status in the body.

If I began taking a mega dose of B12 today, and was tested for such by serum in a month, my levels would most likely end up being very high. But does that mean that amount of the vitamin is truly at work within my organs, within my white blood cells?

We don't know the answer to that. What can be determined, however, is that direct exploration of the white blood cell in and of itself has to be the most accurate means we have available for true nutritional status.

An additional benefit is cost. The test I ordered measured for over 30 nutrients at a cost of $75 (As long as your doctor is willing to sign for it insurance pays 80%). If you don't have insurance and you prepay with the company I chose it's about $275. Compare that, now, to a serum test for each and every vitamin and mineral you have in your system through the doc, and you'd pay hundreds, if not thousands to have all of these nutrients read, and that's after insurance.

The human body is very interesting. Barring a heart defect, a child is, for the most part, born completely healthy. The only "Bad" trait he/she is born with may involve a coding that may precipitate for the development of an ailment at some point in the future. You aren't born with heart disease, you aren't born with diabetes, or celiac, etc. Those that have "Genes" for the possibility of developing this or that later in life only means that you may prove more suspectible to a breakdown in your chemistry at some point later on in life, which may or may not allow for the creation of illness.

Look at the basics involved with the growing child. Above and beyond the many matters at hand, what is needed for that child to grow and thrive beyond any other circumstance? It's water and nutrition, right? Unless you're a diabetic with out of control sugar levels, you're fine on the water end of things as long as you get your 8 glasses a day. The nutritional scope of things is a far different scenario, however. It's not always so easy.

Our medical doctors tell us to eat right, exercise, and stay away from excessive drug use. That's the key to a good life in a nutshell, isn't it. We must exercise to strengten and/or maintain the heart and pulmonary functions. We must stay away from drugs so that no major disruptions take place within the body's billion or so chemical relationships. And we must eat to "Stay alive."

Well, it would seem to me that maybe that should become a focal point in some of this. Maybe, just maybe, we must begin to recognize what is the key attribute for life itself, and pay a little more attention to that end of things.

Nutritional deficiencies may be caused by poor diets, illness, or a predisposed coding which doesn't allow for full absorbtion of all nutrients. Seven vitamins and four minerals are known to play a major role in digestive related illnesses. A dozen are known to cause liver problems, while 14 are known to have a connection between proper digestive and liver function.

My point is that your doctor is never going to test your levels of "Boron" or "Glutathione," but there are tests that do, and they offer profound accuracy. Once you have a deficiency in any one nutrient, it has the possibility to allow for a chain reaction, of sorts, within your system.

It is of my opinion that those with autoimmunity have just that, and nothing more. You don't have Celiac, per say, nor do I have diabetes. What we have is an autoimmune condition which has chosen its time and place to strike. You got hit with Celiac, and I got the diabetes. They're different conditions, but the cause of both is autoimmunity-nothing more, nothing less.

The best defense against autoimmunity, in my opinion, is to get to the bottom of any and all disruptions at work within the body's own chemistry, be it the evaluation of current medications, or that of the very own chemical structure, which is nutrition.

Nutritional screening doesn't go hand in hand with "Deficiencies," either. Having too much of any one nutrient in the system can lead to just as many problems as that of deficiencies, which is why I strongly recommend testing. There's this belief that "Flooding" the system with vitamins ='s good health, and that's just not the case. Toxicity is every bit as dangerous as deficiency.

Depending upon your intestinal damage, and age, I must tell you that there may be only one/third chance that you are actually deficient in anything, if you eat properly. However, in my mind, I don't understand why one would not rule out this possibility as a possible player within a solution to the autoimmunity problem at hand. We're not talking about a grand here. $300 or less may unlock the door to what I believe is a major mystery behind the majority of today's health problems.

Who's not to say that your test would reveal 7 or 8 deficiencies and three toxicities (Excess)? And who's not to say that by correcting those imbalances through precise nutrition wouldn't be a major player in getting better, improving your immunity, etc? If you're deficient in 5 vitamins, I would estimate that there are over 500,000 normal chemical reactions that are off base in your system. See where I'm going with this?

I will provide you with five links that I know of where you can have such testing done. Some of these you may be able to do on your own without physician consent if you don't choose insurance. Others will require a doctor's ok, and lab blood draw for insurance to cover 80%. -


www.balanceyournutrition.com-if you sign up as a member for just one month at $4.50, you get 15% off of their nutrition/amino acids profile. I don't know how this one works. I looked into it but I never received an answer back.



(There are many others, just search "Nutritional blood test order own" and you may find others)

One final note-the Amino Acids. There is a test on directlabs.com in which you can order a 43 panel Amino Acids profile that tests for virtually every known acid there is. I haven't had this one done yet, but I plan to.

Once food is digested, it becomes a carb or protein. Carbs supply short term energy. Proteins, however, are the building block for life. Coincidentally, celiacs struggle with breaking down proteins into "workable parts-aka, amino acids."

A few years back I seemed to develop the odd habbit of consuming 8 liters of Diet Pepsi per day. As a Diabetic, such had always been the "Ok treat" growing up, and I guess I took this habbit a bit out of hand~.

Over the years I had reached a toxicity of Diet Pepsi in every sense of the word. I finally confronted my doctors back than due to an annoying "Lumpy" feeling in my throat, along with what I must admit could've possibly been some delusional stuff at work, lol.

I recall the doctor telling me that due to the amount of caffeine I had consumed, what I was experiencing was the equivalent to a methamphetamine "Hi." That was enough for me to hear to bring me to quit~.

Up to that point, I had been diagnosed with Hypothyroidism for three years running. My TSH's were always around 9, when that measure should not surpass 5. As I slowly began the withdrawal from the soda, I began to notice increased energy again. A month later I had never felt better in my life, marking the end to that chapter with things.

Now why did my health improve so greatly, so suddenly? Within THREE WEEKS my TSH went down to a 4, disproving the theory my Hypothyroidism was diabetes related.

Why is there all of this talk out right now involving the possibility of a link between MS and Asparateme? Thousands are proclaiming that they are addicted to Asparateme, and thousands say they are experiencing MS symptoms as a direct result of the Nutrasweet. Why is that?

In my case, the mental confusion and what had amounted to be semi "Delusional status" was most likely due to the caffeine. Amazingly, however, upon withdrawal, I never experienced one headache after consuming what was the equivalent of a case of Diet Pepsi per day.

So was my problem more to do with caffeine, or more to do with Asparateme? But what is Asparateme? Well, if you'd examine one drop of it under a microscope, it is determined that Asparateme is a compound made up of 25% Methyl Alcohol (Isn't toxifying like standard booze, thank God), 2% undefined elemental compound, and 73% l-Phenylalanine, which is a "Harmless" amino acid (one of the 52 active proteins, or so).

After I went through that debacle, I decided to research some of the amino acids. It was at that time I discovered that l-Phenyalaline is the precursor to l-Tyrosine (Meaning l-Phenylalanine is converted into Tyrosine, which is than absorbed into the system).

I knew that name, I had heard of it. So I decided to grab the raw glandular thyoid extract I had purchased years back, and low and behold-the first ingredient in the supplement was l-Tyrosine.

Now on the surface, it would seem that by drinking as much soda as I was that contained a substance which is thought to be beneficial for the Thyroid gland, that would be a good thing. But it wasn't. In fact, it caused havic in my system as far as thyoid function and energy levels go, etc.

What I do know is that I have never once had an abnormal TSH, T4, or T3 since quitting that habbit, and I doubt that I ever will again. Even though it seems that the opposite variable was at work in relation to the standard beliefs involving Tyrosine, this all just further proves my point-the medical profession doesn't have all the answers, folks. What they do know, however, is what our levels of nutrition SHOULD BE at, for the most part. You don't want to consume too much or too little of any one thing, regarding nutrition. The mediun range for testing is there for a reason, afterall, so try to get to those levels with as much as you possibly can for optimal health.

Further proof of this involves something else that took place with me at that time. About a year before I quit drinking the Diet Pepsi I had begun to lose small patches of hair all over my head, a condition called Alopeecia Areata, a condition that has never returned to me after I have quit the soda.

The Dermatologist I saw for that condition simply said it was due to inflammation. Well, what causes inflammation, at least within the epidermal-scope of things? Cortisol, or I should say, off levels of Cortisol. And what produces Cortisol? The Adrenal Gland. And isn't it true that the Thyroid and Adrenal Glands are romantically involved? Of course they are.

So you see, it's all linked. THough it's all autoimmune related, the entire process always becomes one that's the same in all of these things. Foreign agent causes widespread breakdown-that's how it always works.

Another of the amino acids, l-glutamine, is related to proper digestive function moreso than any other natural compound we have. l-glutamine, along with l-cysteine, are precursors to l-glutathione. Glutathione just happens to be the most powerful, NATURALLY OCCURING (Big difference between this and vitamin C, e, etc) detoxifying agent at work in our system. There should be no mystery between Celiac Disease and abnormal liver function, as far as I'm concerned. The answer is right there. The test I ordered that tested for the vitamins and minerals does test for glutathione and a select few other amino acids, btw, so you wouldn't have to order both an amino acid test, and a seperate vitamin panel. It's all in one.

Now, as a Celiac patient, you are unable to fully digest several of the elemental compounds of protein properly, which in turn become amino acids, which in turn are responsible for virtually every dynamic of proper function that's known.

Amino acids are fully responsible for neurologic, cardiovascular, and digestive functions. They are believed to be at the heart of many autoimmune conditions. All this, yet our doctors refuse to even begin to educate themselves on the delicate relationships involved with these essential building blocks for life.

People with depression are given anti depressants left and right, yet their amino acid levels are never investigated. As is the case with vitamins and the potential for disruption within imbalances of those, would it not be a little more intelligent for some of these docs to consider the chemical attributes of the very individual they are suppose to be helping? Knowing of the high correlation between amino acids levels and the effects they have on neurologic function, and acknowledging l-glutamine's high correlation between intestinal wellness and the natural detox process, why isn't that investigated in medicine, regarding Celiac Sprue? You have something right there in the amino acids that could explain for a lot of things, yet they refuse to even look at it. Sadly, doing so appears to require too much effort for most of our medical professionals. Medication is now the only answer for them, and much of the time such leads to just as many problems as the patient had to begin with. They treat this, than they treat that, all the while they never get to the true heart of the problem.

Well, that's what I have for you for now, folks. I hope some of you may find some help with it. May the Lord Bless you in your journey. You'll find your way. Kevin

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