It amazes me how many people with anemia or constant low iron, which is difficult to raise, have a gluten intolerance or are severly affected so as to suffer from Celiacs.
1 in 4 people supposedly have issues with gluten, which is found in a number of grains eg: wheat, rye, barley and oats. Most people notice a difference when simply excluding wheat, yet some suffer so severly that they have to exclude rye and barley, then others need to exclude the oats too.
Not all people will have symptoms, which can range from bloating right through to irritable bowel syndrome.
Gluten is used as a thickening agent, not just in breads, cakes, biscuits and pasta. It's in virtually everything and a lot of people are simply getting a gluten overload with the main culprit being wheat. My cousin can eat pure rye bread, but eat a wheat bread and she gets stomach pains and bloating.
If your low ferretin is due to gluten, going on a strict gluten free diet for some months should set your iron climbing up on it's own.
When you are low in iron, not many doctors will want to check your gluten levels. A blood test is all that's required, but you can get false positives or negatives and a bowel biopsy is the best way to gauge what damage is being done, but a blood test is a good start too.
Thanks for the info. I've been wondering about this quite a bit since I've had stomach issues for a few years. My dr told me that the blood test for Celiac's came back normal, however I looked at the results today and they say "pending". So I'm going to call tomorrow and straighten it out.
I do have a question about testing. Can an upper endoscopy tell if you have it? I'm scheduled for one next week and it would be nice to rule that between the bloodwork and the endoscopy.
The small intestine will show some sort of damage ~usually~ (or abnormal results), to the Villi, they tend to be flattened to different degrees. A biopsy is considered the "gold standard" for diagnosis not the blood test alone. However, my doctor first did the scopes and nothing was noted. Next, I kept after him about malabsorption issues so, this is the test he chose to do a year later. Audrey is right, they don't always do all the tests that are required, and some patients (like the two of us) have to stay on the docs to get them. There are 3 blood tests to get and you also have to make sure that your doctor has tested with the right ones. You can have slight gluten sensitivity that may show up on one of the three, even if it doesn't show on the other two. Something like that anyway. They don't always do the correct ones. Some people go on not to get the scope and they never really know, and they could be suffering. I can post the test names for you later on if you are interested to compare with your labs. FLFLOWERGIRL
I hope I didn't jump in on this post but yes, I would love to have the name of the 3 things they test for. I'm looking at my results (even though they say "pending") and it has 3 things listed (IGA serum, Gliadin AB IGA, Tissue Transglutaminase AB IGA).
No, you didn't jump in I was talking to you, about the tests, LOL. Audrey already knows that stuff. It looks like you got all of them. I will post my results too for you to compare.
TTG Anti, IGA--<3 range <5U/mL
IGA serum--207 81-463mg/dL
Gliadin anti (IGA)--5 <11 U/mL
This is how my tests read.
FLFLOWERGIRL
Audrey's may be a little different because of where she lives, I don't know.
I had an upper endoscopy two weeks ago; the GI doc told me she saw no evidence of Celiac or malabsorption in the small intestine, but she did take several biopsies. Everything came back clean, so that's more "final" than the blood tests, right?
I wonder if one can still have PA but not have malabsorption issues? If not, then perhaps the doc that diagnosed me with PA a few years ago did so based on other tests, b/c this is the first upper GI I've had since I was a kid.
Forensicmom, good luck on the upper GI next week! I had both (upper, lower) at the same time and was glad to get them over with!!
Thank you for your informative post...someone recently posted on the restless leg board that a gluten free diet helps people reduce or eliminate their restless leg symdrome. This was news to me but your explanation of celiac disease and low iron makes sense of the restless leg "treatment/cure" as research suggests iron supplementation helps some people "cure" their restless legs even if their iron levels are "normal".
Hi
As many as 9 in 10 people have undiagnosed gluten sensitivity tahts a lot .The tests are not always conclusive and you have to have severe damage before it shows in the gut.......Some people are not celiac as such they just cant tolerate gluten at all giving neg test results...
The best thing I found was to go gluten free for at least 3 months and see what happens ...That is what my doc told me..If you go back on it after that time and you see a return of symptoms stay away from it.....You dont always have to get a reaction straight away either I can eat some but if I eat to much its like it biulds up in my system not good....
Gluten affects the central nervous system and the brain first.....Which because I have a B12 problem I am now wonfdering which comes first the B12 problem or the gluten problem a little like the chicken or the egg I guess...
Gluten hads been linked to many auto immune issues like thyriod and a whole heap of other cionditions even type1 diabetes,autisim it goes on and on I just wouldnt eat it its toxic in my view more than they air we breathe......
Celiac disease causes malabsorption within the small intestine. The "gold standard" is biopsy in this disease. In celiac disease the foods cause damage to the lining of the intestines.
Where as PA is an autoimmune disease where the parietal cells in the stomach are attached by your own body's defense and you no longer make IF for absorbing B-12 within the small intestine. This is only tested through blood testing, I think that is correct. Anyway, it is two different test with two different causes both resulting in malabsorption. FLFLOWERGIRL
Thanks to everyone for the contributions, i've learnt more than i knew before
I'm coming across more and more people who have gluten intolerance in some way or other and i can easily believe that it's responsible for a lot of issues. I didn't know about the restless leg issue. That is interesting. I have Hashimoto's thyroiditis and a lot of people over on the thyroid board have the gluten intolerance. A nursing home in Italy removed all gluten foods from patients who had high thyroid antibodies and when they were rechecked they were found to have much lower thyroid antibodies. They didn't specify what time frame they didn't eat gluten type foods. I do know you have to not eat gluten for a number of months to see results in a lot of cases.
A lot of people complain about certain symptoms, yet most doctors simply ignore them. My dad complained of upper stomach discomfort and without a single test or any indepth questioning his doctor gave him a script for acid reflux, which he doesn't even have. Someone else i know has been anemic as far back as she can recall and she can't get her ferretin up. No doctor has ever tested her for gluten issues until i told her to go see the doctor who diagnosed my thyroid condition. After he got her tested, she ended up off the scale for celiacs. It's sad when you hear these types of stories and people aren't getting help from their doctor or the doctor is simply prescribing them meds without even testing. I'm so glad my dad refused to take the stuff this doctor was giving him.
I had a blood test done and it was in 3 parts. My test involved these anti-gliadin antibodies:
IgG EIA 18 (<15) here i'm just a little over, but a little can still mean issues.
IgA EIA 9 (<15)
It also tested Immunology and no endomysial antibodies were detected
Another section of the test looked at Biochemistry where it was titled "tissue transgllutaminase antibody: tTG IgA: 3 U/ml and the range was (0-15)
I gather i'm fine in 2 out of 3, it's just the one where i got 18, which now i'm told they've increased the maximum to 20, so that would make me not gluten intolerant i guess. I was eating gluten at the time though. I'm thinking of eating more gluten again for a couple of weeks, then having the test repeated out of curiosity to see what comes up this time.
I think gluten intolerances are quite sneaky considering some people have no symptoms what so ever. A lady at my work has celiacs according to her test, but has no physical symptoms, but her ferretin is very low, but not anemic. I do get stomach bloating, but not consistently and i don't know what is causing it. It's been much better since i've been taking digestive enzymes, but it still flares up from time to time, but i can't link it to any one thing. I'm not lactose intolerant, but i've bought some lactose free milk and will stay on it for a while and see what develops there.
My H-pylori test came back negative, so it cant be that which is causing the random bloating or my rising and falling ferretin.
So far my doctor and i have hit a brick wall. Whose ferretin rises, then falls 20 points in a 6 week period for no reason what so ever. Then again, if it was gluten related, would it rise at all? especially considering it rose all the way to 78 over a 3 year period, then suddenly decides to bomb. I'm thinking it has to be some form of digestive disorder, but what? Oh well, back to the drawing board...........
FLFLOWERGIRL- you mentioned PA, can you tell me what this means and you also mentioned not making IF, can you tell me what that means too. I'm interested regarding my dad's B12. Thanks
Audrey can you tell me what kind of doctor you see. I have got to find someone to help me get some answers and my general doctor is not that person. Any info would be appreciated.
The doctor i see is my thyroid doctor. He has a special interest in all these things as he suffers from a lot of them himself, so he knows what it's like and all the things which can possibly be interlinked healthwise, the domino effect once one thing falls, then the next, then the next.
I've learnt a lot from this doctor, but also learnt a lot from a Trichologist who i went to see regarding my hair loss situation and he was the one who finally diagnosed my thyroid condition, he's also the first person to test me for gluten intolerance and ran a heap of other blood tests like ferretin, Vit D, B12, iodine, zinc, folate, hormone etc etc he then referred me onto my current doctor.
I also learnt a lot from this healthboard as well as learning a lot from the naturopathic place i get my herbs from to keep my menstrual cycle regular and normal. It's a health/beauty teaching school. You get to see a graduating student, while 2 newer students sit in. You get to state your case and they ask you a heap of questions and it takes an hour. They then discuss my case with a head teacher and if it's complex the head teacher will discuss my issues with me. Being a trianing school it made consultation fees so cheap.
So basically you can learn a lot from virtually everywhere and anywhere. Actually i found out about the health/beauty school from another health forum some years back when someone asked whether anybody knew of a good naturopath in my city.
You just have to keep your eye open, keep doctor shopping if you dont like the one you are seeing or if he/she is unreasonable, keep researching.
...This was news to me but your explanation of celiac disease and low iron makes sense of the restless leg "treatment/cure" as research suggests iron supplementation helps some people "cure" their restless legs even if their iron levels are "normal"....
Bethsheba
The poster on the Restless Leg Boards has informed me that she experienced immediate results of relief from her RLS when she switched to a gluten free diet...it doesn't sound like iron was the factor given it takes time for iron to build up in the blood.
Thank you so much for the info. I am going to start by calling and getting my last bloodwork reports from my regular doctor and the ones from my gastro. doctor. I am going to find someone who knows what they are doing. I do not need a doctor that thinks a pill fixes everything. I'm like you I like the more natural way. I do not need his Xanax. I'm not crazy. My symptoms are very real. I have definitly found all my info. on the boards and research online. I have had no help from my doctors. Thank god for all of you out there willing to help each other. I do appreciate everyone's help. Thank you. I am going to keep the appt. they made me in May with the Dermatologist. I am having alot of the DH outbreaks. I have not had any gluten so I am not sure what is up. My eyebrows are growing back and I am so glad. I have no idea what happened there. I may never know. My doctor seemed to think that the Xanax would help. Ha!!!
robin63 - sounds like your doctor thinks xanax can fix everything!! Well we know which payroll he's on
Sometimes skin issues can be dairy related, not just gluten. Why don't you try lactose free milk for a month or two (not sure how long it takes). It's normally the lactose in the milk which is the issues and not being able to digest the lactose falls under a carbohydrate digestive issue.
A lot of people have also said their skin improved after using goats milk soap. That's the only soap i use when i shower. I don't have a skin issue, but i like the fact it doesn't have the chemical detergents in it (or at least not as much, if there are chemicals in it).
You must also make sure you get copies of ALL test results. I got myself a folder and some plastic sleeves. I put each new test result into a plastic sleeve in date order so they are easy to refer back too and to take to appointments with me.
bethsheba - the RLS could be a gluten issue or related to something else which is used in gluten type foods. When you look at the ingredients in breads, cakes, biscuits etc there are a lot of potential things to cause allergies and other issues.
In my case, it's not just the gluten, it's the soy i'm steering clear of, but it's hard to find a bread, cake or biscuit which doesn't use soy flour as it's sooo cheap. Then there's canola oil too. Both the canola and the soy are always genetically modified which makes it worse.
All i can say, elimate one thing at a time and if you see an improvement then it's got to be one of the ingredience in what you once ate.
Thanks for the info...fortunately, I do not have a problem with gluten but my friend suspects she does. I'm trying to learn what I can to help her while she awaits testing. Years ago only a few foods bothered her, but now she can't tell which foods trigger her problem at all. Doctor doesn't want her changing her diet until she has then necessary tests done.
Hi Audrey, Yes I am definetly going to find a new doctor and hopefully get some answers. These symptoms are very real and I just don't know if it serious or not. I have gone all this time not knowing about the Celiac and I see where that has gotten me. I am having jitterness, nervousness and very tired, yet all the bloodwork is good. I can't understand what the problem is. Your eyebrow do not just fall out for no reason. They are growing back. I am just wondering if after stopping the gluten, if your body has to go through withdraws and this could be what is happening. Sometimes I wonder if it is blood sugar problems. The Celiac diet reminds me of the Adkins diet. That messes with your blood sugars and thats how the weight comes off. I may get one of my sons meters and start monitoring it. Its a shame I'm trying to come up with the answers and not my doctors. Thank you for all your help. Have a great day.
... Its a shame I'm trying to come up with the answers and not my doctors. ....
Yes, it is a shame but because you're actively involved in your health care, you may find answers/treatments/cures...those who do not seek answers on their own, often end up with chronic illness and sometimes death, very high prices to pay for apathy.
FLFLOWERGIRL- you mentioned PA, can you tell me what this means and you also mentioned not making IF, can you tell me what that means too. I'm interested regarding my dad's B12. Thanks
Audrey--Vitamin B12 is absorbed in the GI tract (in the presence of gastric hydrochloric acid and pepsinogen) when IF, (which is secreted by the parietal cells in the lining of the stomach), binds to B12 in the small intestine where it is absorbed.
Pernicious anemia (PA) is an autoimmune condition of anemia caused by B-12 deficiency. Vitamin B12 deficiency can have many causes, as you know, that also include; PA, malabsorption syndromes, and food cobalmin deficiency. In PA, the autoimmune process that damages parietal cells lining the stomach and/or their proton pumps lead to the disease process. B12 deficiency in PA happens when autoantibodies to (IF) intrinsic factor or parietal cells reduce levels of (IF) intrinsic factor inhibiting absorption of B-12.
PA doesn't necessarily cause anemia, but it leads to anemia when gastritis (gastrointestinal inflammation) and lack of (IF) intrinsic factor prevent intestinal absorption of vitamin B12.
*Tests*-- that you may be interested in for diagnosing PA are; CBC, B12, folic acid level, methylmalonic (MMA) and Homocysteine is also used and can be elevated in PA..
Also, antibody tests for antibodies to IF and parietal cells. The ~blood test~ for MMA is considered superior to the urine testing.
Tests for holo-transcobalamin II (Holo-TC II) are also used to determine the amount of vitamin B12 that is directly available to cells. A low result is an early, sensitive marker of vitamin B12 deficiency. Tests for serum gastrin and pepsinogen are also used to help diagnose PA. In PA, low levels of stomach acid stimulate gastrin production and gastrin levels are elevated. Low total pepsinogen levels or low levels of pepsinogen I compared to pepsinogen II are seen in PA.
Antibodies to IF may be either binding /or blocking antibodies:
*Binding* antibodies bind to the IF binding site and interfere with the absorption of intrinsic factor.
*Blocking* antibodies bind to the receptor of cells in the ileum preventing intrinsic factor absorption.
Only some patients with PA have IF antibodies, while all patients with IF antibodies have PA. These antibodies, have a greater specificity for PA. More patients with PA have parietal cell antibodies, but these antibodies are seen in other autoimmune conditions as well such as atrophic gastritis. Antibodies to intrinsic factor are considered superior for diagnosing PA.
PA and atrophic gastritis are the two most common autoimmune disorders to develop in patients with Graves' disease, especially in patients with ongoing immune stimulation, including Graves' disease patients who have had radioiodine ablation.
Your father should have these test with a low B-12, but I can't remember off hand how low he was. Perhaps we should start a new thread on this. Be Well. FLFLOWERGIRL
Thank you so much FLFLOWERGIRL for that explanation . I must copy/paste that someplace where i can refer to it at a later date. Hmmm, to think when i first arrived on the anemia board i thought "at least B12 is one thing i don't have to worry about". How things have changed.
robine63 - i've done some research recently and accidentally came across hair/eyebrow/eyelash shedding/loss and this article claimed that when your thyroid hormones return to normal the hair/brows/lashes will grow back.
I also emailed my doctor about this recently and he also says it's mainly a hypothyroid related issue but can also be iiodine deficiency. He said hypothyroidism affects people in different ways due to the variety of thyroid receptors in the body. He said each patient is a little genotypically different and therefore will have a different phenotypic presentation.
Thyroid, ferretin, low vit D, low iodine and gluten intolerance issues seem to go hand in hand. I only learnt recently that there are thyroid receptors in numerous places in the body, from the stomach, ovaries and liver and can't recall where else. No wonder we have malabsorption, menstrual issues and our liver detox isn't the best. That's the other thing, if the liver can't detox correctly you will end up with tiredness, possible skin issues and who knows what else as the liver can't send of successfully all the bad stuff which it need to eliminate, instead it stays in your system.
Today i learnt you can take Glutamine powder to assist in liver detox as well as for fuel for growth of immune cells and especially for intestinal lining cells which helps to better enable abosrption of nutrients.
At the end of the day, gluten intolerance is likely just one thing, but there could be other issues tied in. It's a real jigsaw puzzle!!
Vitamin B12 is absorbed in the GI tract (in the presence of gastric hydrochloric acid and pepsinogen) when IF, (which is secreted by the parietal cells in the lining of the stomach), binds to B12 in the small intestine where it is absorbed. 
