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Member Since 16 Apr 2014
Offline Last Active Aug 20 2015 01:40 PM

Posts I've Made

In Topic: Question About Gliadin Iga Result

20 August 2015 - 07:31 AM

Short update:

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. :)

In Topic: Did Iron Infusions Help You? Wanting To Hear People's Experiences...

09 July 2015 - 07:54 AM

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.

In Topic: Iron Deficiency Vs Anemia Of Inflammation

30 June 2015 - 07:23 AM

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?

In Topic: B12 Injections

29 June 2015 - 02:31 PM

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.butyoudon...e-spoon-theory/

In Topic: Tummy Troubles

24 June 2015 - 12:58 PM

I just bought a cookbook that has a rice milk mayonnaise recipe in it. It's actually this recipe: http://cybelepascal....iry-free-vegan/


I haven't had a chance to try to make it yet, but it does happen to be gluten, dairy, egg, and soy free. I thought you might want to give it a try.


I hope the therapy works. Good luck!

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