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kvtlove

Member Since 01 Feb 2013
Offline Last Active Mar 01 2013 07:19 PM
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Posts I've Made

In Topic: The Pieces Dont Fit- Help!

13 February 2013 - 12:18 PM

In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.


thank you for that suggestion!! after looking into it though i dont think CRPS/RSD fit my symptoms. my guess is the same as yours when it comes to the temp changes with anemia. ive been gluten-free for about 2 weeks now and the only thing that has really improved is my digestion. my stool is more solid now (used to have craZy diarrhea nearly every time i ate). thats a pretty good improvement, right??

In Topic: The Pieces Dont Fit- Help!

11 February 2013 - 11:36 AM

Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --THIS IS IMPORTANT - it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.


It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!


i got more testing done including the ones suggested here. these are the results:
thyroglobulin antibodies <20 (normal)
thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)
TSH (normal)
T4, free (normal)
T3, Total 75 ng/dl (abnormal, range 76-181
vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

In Topic: The Pieces Dont Fit- Help!

03 February 2013 - 03:35 PM

thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]

In Topic: The Pieces Dont Fit- Help!

01 February 2013 - 09:07 PM

I would seriously think about doing an elimination diet (look for one that is pretty strict). Make sure you keep a journal to document everything! Make sure you are strict with inflammation causing foods - gluten, dairy, sugar, nightshades, alcohol, caffeine. It is so much work but it is so worth it! BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(. Two years later (for me) and I am finally getting it....I think/hope.


right now im going gluten free. as for dairy, i think ill hold off on that for now. i honestly dont eat too much dairy except for greek yogurt and cheese (very occasionally), so i dont think its something prominent enough in my diet to be causing all these problems. foods with gluten, however, were very prominent so im starting there. thank you SO much for your insight

In Topic: The Pieces Dont Fit- Help!

01 February 2013 - 03:57 PM

Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --THIS IS IMPORTANT - it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.


It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

WOW thank you for that information!! i do have all my results. heres the info i have:
-TTG antibody, IGA
-IGA
-HLA-DQ2, A1, DQB1
-immunoglobulin A
-thyroid peroxidase antibodes

all of the above came back negative/normal. my vitamin D has not been tested. from what i see on the report thats all the tested and based on the things you listed, it wasnt enough. even with my thyroid, it looks like it was just the "general" test. no TSH, Free T4, Free T3.

i have a full body bone scan this week. ive decided to start the gluten free diet regardless. im only on my second day so its much too early to tell anything, but im committed to it 100%. it would be comforting to see something on paper validating everything. this is all so exhausting!!