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The Pieces Dont Fit- Help!


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#1 kvtlove

 
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Posted 01 February 2013 - 12:32 PM

i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms
-high ANA
-joint pain throughout my entire body
-hair loss
-inconstant stool
-one hand cold while the other is warm
-in and out of anemia for quite some time
-extremely low iron stores
-low b12
-foggy mind

ive tested negative for
-lupis
-rheumatoid arthritis
-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.

Edited by kvtlove, 01 February 2013 - 01:16 PM.

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#2 GFinDC

 
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Posted 01 February 2013 - 01:09 PM

Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#3 beachbirdie

 
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Posted 01 February 2013 - 02:59 PM

i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms
-high ANA
-joint pain throughout my entire body
-hair loss
-inconstant stool
-one hand cold while the other is warm
-in and out of anemia for quite some time
-extremely low iron stores
-low b12
-foggy mind

ive tested negative for
-lupis
-rheumatoid arthritis
-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.


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!
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#4 kvtlove

 
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Posted 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!!
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#5 anonymous_123

 
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Posted 01 February 2013 - 04:35 PM

Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html


Could you please explain what nightshades are? I've been wondering this for a while. Thanks.
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#6 mushroom

 
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Posted 01 February 2013 - 05:07 PM

I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 anonymous_123

 
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Posted 01 February 2013 - 05:36 PM

I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.


what is it about them that causes the issue? i noticed i am ok with bell peppers. but potatoes mess me up. i think eggplant does too. i haven't payed much attention yet to how i react to chili peppers or paprika. i think tomatos are starting to bother me too. the night i broke out in hives, i had pizza, a couple beers, and some cherry tomatos from my friends garden. perfect mixture for a hive breakout i guess. funny thing is they started out on my stomach. it was as if my belly was on fire and felt toxic from the inside out and the hives were just a way of sending that message as well. it took me months to figure out what was happening as i did not understand if the bloating, hives, fatigue could all be food intolerance. of course dr's were clueless.
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#8 mushroom

 
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Posted 01 February 2013 - 06:24 PM

Yes, the nightshades give me hives, too. They also promote inflammation within the body. Don't ask me the biochemistry of it because I flunked chemistry in school :D
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#9 janpell

 
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Posted 01 February 2013 - 07:29 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.
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#10 GFinDC

 
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Posted 01 February 2013 - 07:52 PM

The nightshades have alkaloid type chemicals in them. Alkaloids are also used in some medicines. Tobacco is a nightshade. Potatoes, peppers, eggplant, tomatoes are the food nightshades.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 mushroom

 
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Posted 01 February 2013 - 07:59 PM

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:(.


Ah yes, the solanines, that rings a bell. I have problems with all the defense mechanisms of plants - solanines, lectins, everything they throw up to keep the bugs out.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 shadowicewolf

 
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Posted 01 February 2013 - 08:25 PM

I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.


You're missing one: tomatillos :)

Here's more on the family in general http://en.wikipedia....wiki/Solanaceae

I'm allergic to tomatos so i limit my intake on potatos and the like for just because reasons.
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#13 kvtlove

 
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Posted 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
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#14 janpell

 
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Posted 02 February 2013 - 06:35 AM

"so i dont think its something prominent enough in my diet to be causing all these problems."
Please don't dismiss it though. If it is gluten you could have created enough damage that it made other foods a problem. Or maybe other foods were a problem all along? Who know, I don't think anyone does. My symptoms prediet.
-very thin, weak, fine hair
-psoriasis
-Psoriatic Arthritis (every joint affected)
-possible Ankylosing Spondylitis
-Reynauds Syndrome
-Sgorgens
-Mortens Neuroma
-very thin dental enamel and gingivitis
-cold hands, purple knuckles
-chronic UTI's
-jaundice
-chronic inflamed lymph nodes
-anemia
-poor circulation/very low blood pressure
I am gluten free but because I did overindulge in nightshades and too many carbs in the past month I am getting a couple of spots, have swollen knuckles and I am feeling a bit of pain in my large joints and upper neck.
I know everyone is different but I wouldn't dismiss an elimination diet for just 10 days. It may be too hard to think about right now but in the future if things get bad, it's worth it to consider - just to see. I am very impressed with the power diet holds on my body. My younger sister has some autoimmune conditions too and she also is able to control her conditions. My older sister takes medication for her and they come back as soon as she stops them. I did medications too. I have been on medication since I was 13. It never helped (for long). I am so happy I started to react to them and started an alternative route. So glad for this board too as I see so many others have been helped by modifying their diet alone. It keeps me inspired and makes me feel like I am not crazy, lol. Good luck and I hope you get things figured out. BTW, all the conditions I listed - full remission! A coincidence according to my GP and Rheumatologist. I wish they were interested in tracking because when I cheat (over a period of 2-3 weeks) everything slowly comes back.
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#15 nvsmom

 
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Posted 02 February 2013 - 01:48 PM

Good luck with the gluten-free diet. Be sure to give it a few months; I'm still noticing improvements after 6 months, and things like my migraines took a few weeks to go away.

I would like to encourage you to get the full thyroid testing done too. Your symptoms scream hypothyroid.

I am hypothyroid, but my TPO Ab was "normal"... it was 33.8 and the range was 0-34. LOL It is fairly common for TPO Ab to fluctuate, and to drop off a bunch once the thyroid is almost, well... dead. Don't trust a "normal test" statement without seeing your actual results and consulting sources other than your doctor's "say-so".

Consider testing:

TSH (should be close to a 1)
Free T4 and Free T3 (should be at 50-75% of the normal reference range)
TPO Ab (should be almost non-existant)
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