This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thank you for reminding me about the airborne flour issue. I'm not usually at her house when she's baking. When I mentioned it to her she had a response that made me laugh: "Yeah I'm sure I'm covered in a fine layer of gluten at all times, but as long as you don't lick me you're probably safe."
I might hold the record for being in denial the longest. After five years I'm just now coming to the realization that gluten is a problem for me after all. As difficult as it has been for me personally to reach a point of acceptance, now I find that I will have to persuade my friends. They mean well and they just want me to retain some skepticism. I get that. But I feel like I've already fought a battle with myself (and lost) and that I shouldn't be obligated to convince anyone else of my need to be gluten free. On the other hand, I would like them to understand and accept that I am making the healthiest choice I can for my body. Naming my gluten issue has been a challenge for me. I feel like the perception in the general population of the term 'gluten intolerant' is that it is less serious than celiac and that corners can be cut. But I've also been told repeatedly that I don't have celiac so I feel like I can't use that term. I think I feel more comfortable using the term 'gluten ataxia' since it seems to get to the heart of my problem, even if nobody knows what it is. Using that description will also remind me that I really can't become lax about cross contamination since the damage I'd be doing to myself would likely be permanent. I can sort of understand where my friends are coming from in their resistance. One of them bakes and it means I can't taste-test her creations anymore. Others have a tendency to hold social gatherings at restaurants and they'd find it inconvenient to accommodate my need to eat either before or after their get together when the restaurant they've chosen doesn't have anything that is safe for me. It also means that I can't just spontaneously go out to eat somewhere with any of them (and none of us are good at pre-planning). Still others just want there to be more solid science to back up my claim. I understand all of this. I don't know how to make it easier for any of them. Is there anything I can do? On top of all of that, I still have a lot to learn about navigating gluten free as a permanent lifestyle. And, at some point, I will need to grieve a bit...
Is "borderline celiac" similar to being "only a little pregnant"? Can you have only a little of an autoimmune disease? There is a small portion of actual wondering in my question as well as some facetiousness. I think you're probably justified in calling it celiac. It sounds like both of those doctors are acknowledging that gluten is the cause of the damage. I don't know why they would avoid the word celiac, but it sure sounds like that is what they are saying.
You mentioned that you're vegan. That coupled with the malabsorption of nutrients that goes along with celiac disease puts you at a high risk of being deficient in vitamin B12. B12 is essential to the human body. Not only is it needed for blood production, it is also responsible for repairing/maintaining the myelin sheath that coats every nerve in the body, allowing them to successfully send signals. It is also known to affect fertility. Basically it's needed all over the body for multiple things. I had wildly irregular periods for over 20 years before my B12 deficiency was discovered. It took less than a year for my cycles to correct themselves, without any additional measures, after I finally started getting treatment. Chances are good that your B12 level has not been tested, because it is not a test that is frequently requested. You may want to check your records to see if you've been tested, or just ask to be tested. Do keep in mind that the common reference range of "normal" is huge. It goes from around 200 to 900 pg/mL. However, symptoms of deficiency can develop with levels below 400 pg/mL. Symptoms can include things like: Fatigue (extreme fatigue where you sleep for hours on end but are still tired when you're awake) Dizzy spells/Balance problems/Vertigo Peripheral neuropathy (sensations of burning or tingling or numbness in the extremities) Mental confusion/Lack of concentration/Short-term memory loss Tinnitus (ringing in the ears) Anemia symptoms such as breathlessness (even small amounts of exertion lead to something collectively referred to as 'the sighs'), heart palpitations/arrhythmia, weakness, pallor, etc. It can be a good idea to also have a folate test done at the same time, because high levels of folate can mask some of the markers of low B12. Low iron levels can cause similar problems with interpreting test results. But the two tests that would be most helpful (along with the typical standard CBC) are serum B12 and MMA (methylmalonic acid) tests. An active B12 test does exist, but it is usually not covered by insurance and most doctors would not be willing to order it done. Untreated B12 deficiency eventually becomes fatal, so it is a good idea to at least get it checked out so you can rule it out as a cause of your continuing misery. Sorry for the long response, but I hope it is helpful.
I'm a little bit frustrated with not really getting clear answers from my own body.
I had to wait a bit longer to go back on gluten than I had planned because I came down with a cold at the beginning of September and I didn't want to miss or mistake any symptoms from that.
Despite waiting until I'd gotten over a cold, it still seems like I have some symptoms that could either be from gluten or could easily be attributed to other things. In fact, the only symptom that I'm certain comes from wheat is heartburn, and I only get that in the morning so, if I stick to the gluten free toaster waffles I've been having for breakfast, it's not really an issue.
Maybe I'm trying to hard too attribute my symptoms to other things. Here's the timeline:
12th Saturday evening: I went back on gluten (yay, Oreos!)
13th Sunday: Everything was fine.
14th Monday: I had mild nausea which I assumed was from PMS, because that's one of my typical pms symptoms.
15th Tuesday: Still had nausea.
16th Wednesday: The nausea turned into a stomach ache.
17th Thursday: I was totally fine. Mostly.
18th Friday: My primarily wheat breakfast gave me heartburn which eventually turned into a stomach ache.
19th Saturday: I was fine. I mowed the lawn.
20th Sunday: I'm allergic to grass, so I had a stuffy nose from mowing the lawn. I was also really dizzy.
Yesterday and Today: I'm still dizzy.
Now the one thing I didn't really pay attention to while I was gluten free was the frequency (or lack thereof) of the dizzy spells that I've had intermittently since my mid-twenties. I've never been able to pinpoint the exact cause of them but they are sometimes severe enough to lead to fainting spells. I just looked back through my records and realized that they don't mention any dizzy spells for 4 months - slightly longer than the entire time I was gluten free. Could gluten be the cause of dizzy spells I've had for more than 10 years?
It's been a little over 3 months of gluten free. I've been keeping a journal and see no difference in symptoms. Additionally, I seem to be having a flare up of the anemia of inflammation that I was originally investigating when I started down this path. That leads me to believe that the anemia problem stems from some other cause. Finding that cause is still my primary goal.
I plan to reintroduce gluten starting in September and see if I notice any sort of symptoms occurring when I reintroduce it. If not, I think I will have to assume that gluten is not a particular problem for me. I'm not that great at internet searching but, so far, I can't find any confirmation of such a thing as asymptomatic non-celiac gluten sensitivity, so I have to assume that a lack of symptoms equals a lack of sensitivity.
I do want to thank you all for your information and support. It has been extremely helpful and I am grateful for this forum.
If I start showing symptoms after I go back on gluten, I'm sure I'll be back.
I have not had an iron infusion (the IV version of iron), but I have had an iron injection and I am happy to describe that experience if it will be helpful.
To start off I will point out that I had a form of anemia that doesn't respond to oral supplementation and that it took me about three years to convince a doctor to actually bother giving me an iron injection to address my continuing symptoms. I also have B12 deficiency. The injection I received included 1ml of iron and 1ml of B12 injected into my hip using the z track method (a method that keeps the iron from causing a permanent stain/tattoo at the injection site). (Z track method is not needed for iron infusions which is one of the reasons infusions are more popular than injections.)
The injection itself was about as painful as an injection normally is, however soreness at the site lingered for about a week and caused an adhesion (I think that is the word) which feels like a lump at the injection site. It has shrunk with time (I had the injection about 2 months ago) but is still there.
It took about two weeks for me to actually feel a benefit from the injection (which makes sense considering how long it take the body to generate new blood cells). When it really kicked in, I felt increased energy and no dizzy spells or weakness for the first time in a long time. I was told at the time of the injection that I might need another one to get my levels to a good place where they will hopefully stay. I've been a bit reluctant to book another injection because my symptoms haven't become as bad as they previously were and those injections do actually hurt.
Obviously an infusion is a bit different. You wouldn't experience an adhesion from IV iron so you probably wouldn't have as much lasting discomfort as you would from an injection.
Yes, it's very true that anemias can co-exist. And, worse yet, if you have a microcytic anemia (like iron deficiency) at the same time as you have a macrocytic anemia (like B12 or folate deficiency) it can actually cause blood tests to show a false normal results. I had never even heard of false normal test results until I was pretty much in that situation. It's crazy. (And it also sucks because you have all these anemia-like symptoms and your doctors look at your blood tests and try to tell you it's all in your mind when it really isn't...)
I realize now that this topic should probably have gone under the 'related disorders' section. Maybe a moderator could move it?
Do you know which form of B12 the injections are? Cyanocobalamin is the form most often used in the US and is usually given once a month. Hydroxocobalamin is the form more commonly used in parts of Europe. Generally speaking, cyano works more quickly but is not retained as well in the body as hydroxo.
Methylcobalamin is the newest form of B12 to be developed. It is not commonly in use by doctor's offices, although some are starting to warm up to it because it is the "active" form of B12 and doesn't require as much conversion in the body as cyano and hydroxo do. (But it's also more expensive than either of the other kinds and is not mass produced as an injectable the way the others are.)
Cyano manufacturers have stated that between 50%-98% of injected cyano is lost (excreted through urine) within the first 48 hours after an injection. So, if you received a 1ml injection, which is equal to 1000mcg, two days later only 20-500mcg remain for your body to use for the rest of the month. A typical person needs about 6mcg of B12 a day to replace what is naturally lost.
Another complication that you may or may not have, has to do with how B12 is recycled through the body in the methylation cycle. B12 is such a complicated molecule that the human body has developed a really complex system for dealing with it. If anything anywhere in that system messes up, the B12 never reaches its destination and is never used. That can sometimes mean that a bunch of inactive B12 is floating around in the blood, never able to be turned into active B12 for use. That is one of the reasons that tests of serum B12 after injections have been given are not considered reliable. There is an 'active B12 test' that has been developed but it is not widely available and is probably not covered by insurance. Once a person is on injectable B12, their treatment should be based on symptoms.
It would be a good idea to talk to your doctor and ask that your injections be based on your symptoms (in other words closer together than once a month) because you shouldn't have to suffer needlessly. There is no known upper intake limit for B12. That means you can't ever overdose on it (unless you have a pre-existing kidney condition/failure). Many doctors are not very knowledgeable about B12 and B12 deficiency. Some mistakenly believe that it is possible to overdose. If your doctor turns out to have that mistaken belief, ask him or her to provide you with scientific documentation to back up their belief. They won't be able to because it doesn't exist.
Unfortunately, getting B12 deficiency correctly treated is a bit of an uphill battle. Keep in mind that B12 works best in tandem with other nutrients such as folic acid and iron and that large amounts of B12 can lower potassium levels. Ideally everything would be measured and brought into correct balance. Realistically, sometimes you have to choose your priorities.
I'm sure the nurse means well, but she is probably not well-informed on the subject and you should really be talking to the doctor about increasing the injections. The nurse won't have the authority to do that.
One other thing to keep in mind, which is not a fun thing to think about, is that it is really important to know your limits when you are getting B12 shots. It is very tempting, once you finally have a burst of energy, to take as much advantage of it as you can. However, if you go full out, you are likely to overdo it and use up the B12 more quickly. Things that make your body use up B12 more rapidly are: stress, exercise, alcohol, and sugar.
Are you familiar with the Spoon Theory? It's a fairly good explanation of how you have to keep track of things in order to keep from running out of B12 before the next injection: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
This is something I'm mildly curious about because I was just reading a thread about dizziness. I wasn't sure where to post this question. I'm not even sure exactly how to word this question.
I know celiac can cause iron deficiency because iron is just not getting absorbed. But I've also heard a few people mention having low iron that they can't seem to improve even after going gluten free. My question is: Do many celiacs suffer from Anemia of Inflammation (also known as Anemia of Chronic Disease)? The only way to know is to have complete iron panels done, rather than just serum iron levels. I'm sure that, for most people, a complete iron panel isn't ordered.
Unlike iron deficiency, anemia of inflammation is an immune system response. As I understand it, it can be triggered by an autoimmune condition such as celiac disease.
The book these excerpts are taken from is called Understanding Anemia by Ed Uthman, M.D. The following excerpts start at page 126 and relate to anemia of chronic disease (the italics are part of the original work):
"Briefly defined, anemia of chronic disease (ACD) is that anemia which accompanies general systemic illnesses, especially those characterized by inflammation. The underlying disease can be any from a long list of chronic ailments, including infections, collagen-vascular diseases (such as lupus and rheumatoid arthritis), and cancer (even though a cancerous tumor is not an inflammatory process, the body’s immune system may react to the tumor with some manifestations of the inflammatory response). Under our cytometric classification, ACD is a hyporegenerative normocytic/microcytic, normochromic/hypochromic anemia. This means that the reticulocyte count is low, the MCV is normal or low, and the MCHC is normal or low. Before going into more detail, let us consider the inflammatory response; for this we have to break away from our exclusive interest in the red cell and visit the even more complex world of the white cell.
White cells, or leukocytes, are the individual instruments in the great symphony that is the immune response. There are three major types of leukocytes involved in the inflammatory response, all of which not only circulate in the blood, but also reside and work in the solid tissues throughout the body. These major categories of white cells are neutrophils, monocytes, and lymphocytes. Neutrophils, the most numerous of the circulating white cells, are considered the shock troops of the inflammatory response. When a microbial invader enters a normally sterile area of the body, millions of neutrophils accumulate at the site and attempt to destroy the invader by engulfing it and exposing it to an armamentarium of highly toxic substances. In the process of doing this, the neutrophils also fall victim to their own weapons. The innumerable dead neutrophils pile up and break down, to the point where their mass grave becomes visible to the naked eye as a creamy yellow material, called pus. One of the deadly chemicals produced by theses turned-on neutrophils before they die is an iron-containing substance called lactoferrin. When the inflammatory response is activated, neutrophils respond by markedly increasing their synthesis of lactoferrin and secreting it into the plasma (more on this later). Monocytes, the least numerous of the three main leukocyte types, circulate around in the blood until they are needed at the battlefield to combat an unfriendly microbe. When they leave the circulation and enter the tissues, they transform into macrophages. (Remember from chapter 5 that macrophages are also a part of the reticuloendothelial system, charged with getting rid of aged red cells and readily scarfing up red cells coated with antibodies.) Macrophages are equally enthusiastic about engulfing and destroying infections agents, especially those that are coated with antibodies. Another function of macrophages is to take some of these engulfed organisms and “present” them to the cells that actually make the antibodies. You can think of the macrophage as the big goon who picks up the trouble-making punk by the collar, drags him before the local kingpin, Mr. Lymphocyte (see below), and then beats up his hapless victim at the behest of the boss. Another function of macrophages in the marrow is to store iron and transfer it to developing red cell precursors for hemoglobin production. For the marrow macrophages to get their iron in the first place, they have to receive it from transferrin, the major iron transport protein in the blood. In conditions where the immune response is turned on, much of the lactoferrin produced by the neutrophils ends up going into the macrophages. Presumably this lactoferrin will be put to good use by the macrophages out on the battlefield, because lactoferrin is quite capable of killing bacteria. Back home in the marrow, however, the lactoferrin competes with transferrin for receptor sites on the macrophages. The iron in lactoferrin is not available for transfer to the developing red cells, so these go hungry, while more and more iron is piling up unused in the macrophages. The result is that, in ACD, the amount of storage iron is increased, but the transfer of that iron to erythroblasts is blocked. This explains why some cases of ACD resemble iron deficiency to the extent that the red cells are small and pale. In true iron deficiency anemia, of course, storage iron is absent. Because of the marked difference between iron deficiency and ACD in respect to the disposition of iron, evaluation of the amount of storage iron in a marrow biopsy can be a very valuable test in distinguishing between the two conditions. Lymphocytes are the second most numerous of the three major types of white cells. They not only circulate in the blood but also reside in large numbers in so-called “lymphoid tissues” throughout the body. The classic example of lymphoid tissue is the lymph nodes, which are solid packages of lymphocytes. Other prominent areas of lymphoid tissue are found in the upper throat and digestive tract.
If the neutrophils and monocytes are the brawny enforcers in the war on microbes, then the lymphocytes are the brains. These little cells cannot engulf bacteria and other germs directly, but they can perform two other functions that are just as deadly. First, one class of lymphocytes, called B cells, can produce antibodies specific to the molecules sticking out on the surface of the invader. When functioning properly, these antibodies stick only onto those specific molecules that signify an enemy. Macrophages and neutrophils respond to the antibody tag by eating whatever the tag is attached to and leaving untagged cells alone. This is why the immune response can kill outsiders while leaving our own tissues untouched. The second deadly weapon at the lymphocyte’s command is the lymphokines, a motley assemblage of substances secreted by lymphocytes involved in the inflammatory/immune response. Lymphokines act as intermediaries among lymphocytes, variously hiking up and toning down inflammatory activity so as to meet infectious threats with measured response and minimal collateral damage. Several of these lymphokines have the property of being able to inhibit cell growth. The influence of these cells on erythroblasts is to make them less responsive to erythropoietin stimulation. The effects of this growth-inhibiting property of lymphokines are not limited to RBC precursors; other cells are similarly affected. For instance, during periods of acute or chronic inflammation, nails and hair also grow more slowly. Finally, some lymphokines inhibit the excretion of erythropoietin by the kidney, further enhancing the slowdown of red cell production.
As a result of the combined effect of these manifestations of the inflammatory response, anemia of chronic disease is characterized by:
(1) Accumulation of iron in macrophages, causing lack of iron for hemoglobin synthesis.
(2) Decreased responsiveness of red cells to erythropoietin stimulation.
(3) Decreased production of erythropoietin by the kidney.
From the above, it is easy to see how a hyporegenerative anemia can develop, and how such an anemia may impersonate iron deficiency by showing microcytosis and hypochromia. Another phenomenon reflecting the hoarding of iron by macrophages is that the serum iron level is typically low, as in iron deficiency. Unlike iron deficiency, which is characterized by a compensatory increase in transferrin in the serum, ACD is accompanied by a decrease in tranferrin (or, as is measured in many labs, total iron binding capacity, TIBC). The serum ferritin, which is an indirect reflection of body iron stores, is elevated as expected (cf. iron deficiency, in which ferritin is low).
The diagnosis of anemia of chronic disease is usually straightforward, but does require clinical judgement and a few strategically selected lab tests. Typically the patient has a history of some chronic disease. The hemoglobin is low, but usually above 10 grams per deciliter. The reticulocyte count is low. Serum iron and transferrin/TIBC are low, but ferritin is high. Rarely it may be necessary to perform a bone marrow biopsy to assess iron stores, but this is necessary only in complex or confusing cases (for instance, just because a patient has a chronic disease does not mean iron deficiency anemia could not also occur as the result of a bleeding ulcer or other significant abnormality).
A summary of typical lab test results in ACD is given in the following table. This should be compared with the similar table in chapter 3.
MCV---------------------------------normal or low
MCHC-------------------------------normal or low
serum iron -------------------------low
serum transferrin (or TIBC)------low
percent iron saturation-----------normal
Anemia of chronic disease is usually so mild that it does not require treatment. Cases severe enough to cause symptoms may respond to injections of recombinant erythropoietin. Doctors mainly need to know what not to do in treatment of ACD: blood transfusions should almost never be used, and oral or injectable iron should not be given."
I disagree a bit with the author about treatment. It is true that oral iron is pointless, but iron injections or infusions do work well. http://informahealthcare.com/doi/abs/10.1185/030079906x100096
Here is the table from chapter 3 showing the typical results in iron deficiency anemia:
serum iron -------------------------low
serum transferrin (or TIBC)------high
percent iron saturation-----------low
I thought this information might be helpful, so I wanted to share it.
To jump tracks a bit,
You have mentioned that you have both chronic gastritis and borderline low B12. Have you been tested for Pernicious Anemia?
There are myriad symptoms related to B12 deficiency and you don't have to become anemic before experiencing them. This is just something to consider. Do you have any relatives who have had B12 deficiency or Pernicious Anemia? Like celiac, it often runs in families.
One thing I've learned is to request print outs of all of the lab results and make sure they include the reference ranges. That way you can see exactly what was tested as well as what the actual results are (not just a doctor saying all is normal).
Back in 2012, after a particularly bad episode of anemia-like symptoms (I couldn't get out of bed for three days), I went to my doctor and requested an iron panel be run. Those tests included serum iron, ferritin, transferrin, TIBC, and saturation %. A standard CBC was also done at the time to complete the picture.
When my doctor looked at the results, she interpreted them as iron deficiency and advised me to take oral iron. I am not a doctor, but when I looked at the results I realized her interpretation was mistaken. In iron deficiency serum iron and ferritin are low but transferrin is high. In my case the serum iron was low but the transferrin was low also and my ferritin was still normal. I had anemia of chronic disease (also known as anemia of inflammation) which is an anemia triggered by the body's immune response. And, more importantly, it can't be treated by oral iron. When I questioned my doctor about it, she realized the mistake and agreed with me. That is why it is important to get print outs and look them over.
Notice that I said all of that occurred back in 2012. I finally received an iron injection just a month and a half ago. It took me about 3 years to convince someone to actually treat the problem. I think a lot of doctors are wary of giving iron injections because they are uncomfortable and, if the doctor administers it incorrectly, it can produce a permanent dot on the skin. Iron infusions are considered superior to injections. If iron injections aren't available, are iron infusions available?
As cyclinglady said, it is possible to have more than one type of anemia.
With such a low ferritin level, I'm surprised there is not more urgency from her doctors to do something to treat it. The first step to figuring it all out is getting copies of all the lab results.
I will try to do better to avoid cross contamination.
I'm struggling to accept gluten as the problem. This forum is the only place where I hear the message that I should not ignore the one positive test result. That message is in direct contradiction to all the instances of being told that I don't have celiac because the ttg results keep coming back negative.
Adding to my struggle to accept is that, by comparison, when I gave up dairy the difference was immediately apparent within the first few days. So far I'm not experiencing anything similar with gluten and that makes me less confident about it. So I'm simultaneously trying to accept and adapt to no gluten while also thinking, "but wait, I don't really have this problem because all the tests say so..."