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!!
Thanks so much for the info Audrey that is very interesting about the iodine def. I just have to find a doctor that knows what they are dealing with and get on the right track with the test that need to be done and how often. Are you telling me that Thyroid test can be one thing one day and normal another. Is this why maybe mine is being misdiagnoised? Does the Endoctrine system change and flucuate. I know how blood sugars work but nothing else. Today was about the 3rd or 4th time I have had this happen to me. I get severe pain as if it is bad indigestion in the chest area and My right nerve in my jaw starts to hurt and I feel sick to my stomach. It scared me so bad the first time it happened I went to my doctor and he sent me for a stress test for my heart. Everything there checked out. I just wonder if something in my system is dangerously low triggering these attacks. It is so scary. Thank you for listening and ALL the info you give.
This is the first time i have posted on this website. I notice most people posting live on the other side to the world to me, i live in sydney australia, yes i find myself nodding along to this. I have Coeliac disease. I was sick and severly anemic for 3 years and my doctor refused to test me for anything and told my mother that i was just a typical kid trying to get out of school. He suggested anti depressants to get me out of bed. My mum yelled and yelled that i was really sick and finally he tested me for coeliac disease. My levels were terrible and i was given an emergency endoscopy and put on a gluten free diet. I only got sicker developing chronic fatigue and spending 3 months asleep. My specialist then asked how my lactose intolerance was going having come up in tests, something they forgot to mention. When i complained of still being always unwell no one was concerned saying again to my mother that i must be cheating on the diet. I have never in my life cheated the diet, i am afraid of being sick. 5 years later after several changes in GP i found a doctor who believed i was sick and not a typical teenager. She tested me for related diseases to coeliac disease, and got all my blood results for last 8 years and looked through them. She discovered my iron dropped significantly every year. No one undersands why. I become very ill on tablets so i was given iron injections which didnt help my levels at all but left a very painful tatoo on me. The IV iron had me unable to breathe, with my heart racing and admitted to emergency. No one at the hospital however informed my specialist i was in hospital unable to breathe. Im not keen to repeat the process yet no doctor can tell me why i can not absorb iron when my villi appear repaired and i have no internal bleeding. Then They discovered i had SLE lupus and thyroid disease, SLE has caused me terible arthritis in my joints and the medication causes weight gain and bad sun rashes. I am 19 and it appears the early years of my life eating this GLUTEN has given me so many diseases and health problems. I want to have energy. I want to have iron in my body and understand why i dont.. and i want to be a normal 19yr old who isnt always sick. Gluten and Anemia are totally not cool. But its just amazing how over the other side of the world people have to same extreme problems with diagnosis and GPs and how everywhere gluten is making people so sick.
robin63 - the endocrine system is changable. I recently had my dad do a bunch of tests and i forced his doctor to do the entire thyroid panel (TSH, T4, T3 and thyroid antibodies). His doctor agreed to do ALL the tests i had noted in my letter to him. In the end he only did a select few. I then had to force him to do the rest and he ended up doubling up on some of the thyroid tests.
In the first bunch of tests, my dad's TSH was elevated. 3 weeks later it was so low that the lab even highlighted this. The lab also highlighted my dad's T4 and T3, which were high. Something must be going on for his TSH to plummet in the space of 3 weeks. When we have a thyroid test, we might only have one a year or one test every few years, especially if a doctor tells us our results are fine. It was only that the doctor made a mistake so my dad got tested twice in 3 weeks. In a way this is fortunate as it gives an indication that the thyroid hormones can be very volatile if something is going on. So to answer your question i'd say 'yes' the endocrine system can be volatile, but i'd say that's only when something is going on.
My thyroid doctor believes that other issues can affect the thyroid also, like ferretin and vitamin D and insufficient iodine levels. I've got my dad on some supplements which i hope will correct a number of things, then i'll order blood testing again. Even though his doctor believes his thyroid to be fine, i'll be keeping an eye on things "just in case" as i know his doctor will simply dismiss things.
This is why it's so important to learn things and not leave it all up to your doctor. I used to think a thyroid test comprise of TSH, then on these healthboards i learnt which tests to demand. A lot of the things i learnt off here led me to one good doctor, who diagnosed my thyroid and he then referred me to my current doctor. It's not worth leaving it all up to your gp or even a specialist as they can get it wrong more than we realise.
Jazzabella - hi and welcome to the boards I too am in Sydney, Australia. There are lots of people from all over the world on these boards, which is great, as it helps to share our knowledge as well as support each other with our various health issues.
Isn't it a shame that so many of us had to take years to get to where we are today. it shouldn't need to take years to get a doctor to believe you or to want to help you.
Gluten and lactose intolerances are such a big problem and a lot of people are totally unaware. I think so many things affect our digestion, from lack of certain vitamins to foods which cause negative reactions within us. Even with the thyroid i learnt that there are thyroid receptors in the stomach. It seems the more you learn the more complex it gets and at the end of the day it could be any number of things which cause malabsorption of nutrients which then leads to other things going wrong and a whole bunch of new symptoms.
You are fortunate your mother stood up to the doctors and believed in you and the fact that there was something wrong. I can imagine how it would get you down, not being believed by a doctor and then when you do finally get diagnosed, you end up with long standing symptoms of a condition which wasn't treated when it ought to have been. That's why i often wonder if i ended up with so many issues due to not being medicated in 2000 for my thyroid, instead of 8 years too late.
Now that you have found these boards, i hope you find a lot more answers to help you get much better in the future
... She discovered my iron dropped significantly every year. No one undersands why. .... Then They discovered i had SLE lupus and thyroid disease, SLE has caused me terible arthritis in my joints and the medication causes weight gain and bad sun rashes. I am 19 and it appears the early years of my life eating this GLUTEN has given me so many diseases and health problems. ....
These are symptoms/conditions that often accompany people infected witht the organism Borellia burgdorfei or gernii, which is now thought to be common on the Eastern seaboard of Australia! I would suggest that a number of posters on this board are from Down Under and are experiencing symptoms caused by this disease...anemia, celiac disease, arthritis, thryoid problems, Lupus, ALS, MS, bowel problems, yeast infections, and etc. Some doctors think that 1/2 of all chronic disease is caused by these Borellia burgdorfei and/or its coinfections.
Australian government websites (like US government websites) are often outdated, and can perpetuate myths and misconceptions…please keep in mind the following BEFORE you read the Australian government link at the bottom of the page:
1. Although these infections can be transmitted by at least 5 different kinds of ticks, flies, fleas, and other insects can transmit them as well.
2. These infections can be transmitted in the womb so babies can be born intected.
3. Some think these infections can be transmitted sexually.
4. Theoretically, it is possible to get these infections via a blood transfusion, although this has not been proven.
5. Although a bull seye rash is a definitive sign of infection, most people do not remember getting one.
6. Just because you didn’t get a rash or don’t remember a rash, doesn’t mean you haven’t been infected.
7. Lyme and it’s coinfections have been known to lay dormant for over 10 years, making the connection to the initial symptoms and the chronic symptoms difficult.
8. Antibiotic treatment (especially Doxycycline as it is used to treat Lyme) can bring about a massive Herxheimer reaction, which means that symptoms may get worse or change with antibiotic treatment. This means the antibiotic is working!
9. Steroids may temporarily ease the symptoms, but the symptoms may change or get worse after steroid treatment because steroids suppress the body's immune system and an active immune system is needed to fight a bacterial infection.
I have included the following Australian Government Website. Please keep in mind that it contains some info that is thought to be incorrect or misleading, but at least it’s a place to start…
Audrey, That is very interesting to know. How do you convince the doctors to repeat the test so often? It would really be great if they came up with a system like checking your thyroid levels like you can blood sugars. If you could check it often we would know how it changes. I know I have alot of the symptoms that point to Thyroid but my bloodwork makes me look like nothing is wrong. And maybe its not. I just know my symptoms are very real. Thank you so much for all of you help and info.
As for the information on Borellia burgdorfei or gernii, i had actually discovered that during my own research and contacted my doctor when i discovered it. She thought that could be the cause and we went through a bunch of tests and research and she said that she could rule it out, and that it was very clearly not the cause of my iron deficiency. But it did seem to fit for awhile and was almost unfortunate to be an unsuccessful outcome.
So i guess every condition is different, and unfortunately i seem to fit no profile! Very frustrating
Thanks for the welcomes into the group, it is so interesting to read so much information about conditions no one around me understand!
...As for the information on Borellia burgdorfei or gernii, i had actually discovered that during my own research and contacted my doctor when i discovered it. She thought that could be the cause and we went through a bunch of tests and research and she said that she could rule it out, and that it was very clearly not the cause of my iron deficiency. ....
Wow, you must have a dynamo doc, but I'm not surprised as she is a woman,
I wouldn't rule Lyme out just yet...from what I understand it is one of the most complex organisms of its type known and that there are several hundred strains (which is just one of many reasons it is difficult to test for). The strains vary depending on what area of the world one lives in.
On what basis, may I ask, does she say it is clearly not causing your anemia?
Have you and your doctor considered contacting Igenex Labs to see what they might recommend?
Again, I just wouldn't rule it out, there's just too much at stake.
Thanks for your response and welcome to the boards,
robin63 - i have to get checked so regularly as i only began thyroid meds in may 2008. They start you off on a very low dose as they don't know how you will respond to it and this is why the tests are done so regularly. If they were to put you on one dosage of meds you could go from being hypo thyroid to hyper which would bring on a whole set of new issues.
Once i get to where he wants me to be he'll put me on a particular dosage and i wont have to have such regular tests.
In your case, having the symptoms, but being told the blood work is ok, is quite a regular occurance. This is why it took me 8 years as not many doctors will medicate unless your TSH gets into "extreme" levels, when at the end of the day it's not solely the TSH they should be looking at, but your other thyroid hormones. They should also be checking whether you have thyroid antibodies, which would mean you have an autoimmune disease, not just a condition.
You can see just how many disgruntled people are over on the thyroid board with doctors pronouncing them healthy, when clearly they aren't, or simply pushing them onto antidepressants, when they don't need them. A lot of the people on the thyroid board went years without being medicated until they found a good doctor who looks outside the "square" and once they began treatment all/majority of their symptoms went away.