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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).

Thanks
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!!

Cheers,
Nancy
AudreyB,

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".

Again, thanks for the info.

Bethsheba
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......

Cheers
Nancy--

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.
[QUOTE=bethsheba;3872997]...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[/QUOTE]

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.

I don't know...what do others think?

Bethsheba
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.
Audrey,

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.

Again, thanks for the info.
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.
[QUOTE=robin63;3876301]... Its a shame I'm trying to come up with the answers and not my doctors. ....[/QUOTE]

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.

Bethsheba
[QUOTE=Audrey-B;3873473]
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 :)[/QUOTE]

Audrey--:wave: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.

[B]Antibodies to IF may be either binding /or blocking antibodies:[/B]
*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 :)
[QUOTE=Jazzabella;3879152]... 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. ....[/QUOTE]

Jazzabella,

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…

[url]http://www.health.nsw.gov.au/factsheets/general/ticks_factsheet.html[/url]
Regarding gluten intolerance/allergies...

I found this thread of interest, in particular, the very last post...

Looking for someone with a similar story
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.
This is all very interesting.

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 :confused::)

Thanks for the welcomes into the group, it is so interesting to read so much information about conditions no one around me understand!
[QUOTE=Jazzabella;3880167]...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. ....
[/QUOTE]

Wow, you must have a dynamo doc, but I'm not surprised as she is a woman, ;):angel:

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, :bouncing:
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.
Thanks for the info, I will look into it further.
My GP is Great!! She's my 6th GP and we finally found someone who does everything in her power to solve problems and then last week she moved to America.
Once again I am Without GP so i now need to find someone else. I have quite the team of specialists, some good, some not so that i ask for advice too, so i shall look into it and talk to them and let you know if anything comes out of it :)
[QUOTE=Jazzabella;3881438]...
My GP is Great!! She's my 6th GP and we finally found someone who does everything in her power to solve problems and then last week she moved to America.[/QUOTE]
Oh, how very frustrating to say the least! And yes, it does take some time, and trial and error to find a good one. I always thought I had a "good" one until I had blood pressure issues, and all of the med side effects that come with that.

The medical community in the US acknowledges that we have a Lyme epidemic along the coastal areas in the NE (there is some thought that Lyme carriers fall off of migratory birds), and in some parts of the midwest...they also have documented cases of this disease in all 50 states in our union. [I]Despite this, some of the best clinics/specialists in our country have the worst reputation for diagnosing and/or treating this disease[/I].

You live in a country that is still denying a problem even though evidence of Lyme exists there...keep that in mind when picking the brains of your medical team...if you can, do some independent research as it helps to go "armed" with sources of data to back up your case, should you think you have one.

Good luck, and good health!
jazzabella - did you know your gp was moving to America? sometimes one good doctor knows another good doctor and can refer someone else equally as good. I'm sure you have learnt a lot so as to enable you to weed out the bad gp's.

I couldn't find a good gp or specialist. I had a range of symptoms but my main one which bothered me was abnormal hair shedding. I found myself a Trichologist after doing loads of research. My research and new found knowledge helped me pick what i felt was a good one, and he was. He knew more than all the gp's put together and diagnosed my problems.
[QUOTE=Audrey-B;3881980]jazzabella - did you know your gp was moving to America? sometimes one good doctor knows another good doctor and can refer someone else equally as good. ...[/QUOTE]An excellent suggestion, which I am going to use, by the way.

Bethsheba
It's a good trick ;) My Trichologist new my current thyroid doctor. Connections are a wonderful thing!!





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