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birdie22

I'm Starting To Suspect This More And More

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I've posted a few times about my ongoing symptoms for the past 12 mos: heartburn, bloating after meals, canker sores, headaches, fatigue, fuzzy/hungover feeling, etc. My ttg IGA was neg (total IGA normal). I'm now waiting for results on my GDP and a few other things. Well I was talking to my mom today and we were updating each other on our health issues and she was telling me how she her blood work came back showing low Vit D and b-12. She's had depression for at least 10yrs and even on meds is suffering fatigue. She's also been on meds for many years for reflux. And like me she gets frequent headaches, canker sores, and is an easy bruiser. She has a follow up w/ her doc next month and I told her to demand a celiac panel.

Given how I've been feeling for the past 12mos, the fact that I started seeing improvement on a brief elim diet, and her Vit deficiencies, I'm really believing more and more that gluten is the cause of my problems.

In addition to the GDP, the doc ran AGA, ferritin, thyroid, CBC and a complete metabolic panel (including D and B). I had all but the celiac tests done in Oct 2010 and they were all normal so it'll be interesting to see if anything has changed.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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Did you and your mom decided to go gluten free? The vit deficiencies are real important. I think many times we pass vits off, many say they are a waste of money, etc. When the body does not receive the proper nutrients for whatever reason it suffers, long-term this can be hard to recover from so it is very important that you see the labwork with your own eyes. Some docs will not mention low levels (maybe because they are borderline, I don't know), it's happen to me more than once. All the other tests are great to have had run. Let us know how it works out for you.


Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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Your test results should reveal a lot. Please post your results with the ranges so we can see where you are. :)


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

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Your test results should reveal a lot. Please post your results with the ranges so we can see where you are. :)

I hope to get the results this week and I always request that they fax me a copy so I can review them myself. I am going gluten-free again (started this weekend) but my my isn't until after she does the celiac blood panel next month.

I think what bothers me most is the fatigue. Friday night I was asleep on the couch by 8pm and woke up at 6am feeling almost hungover. Yes, I'm a full time working mom with 2 kids under age 4, but I'm only 36 and I have a DH who does a great deal to assist. I shouldn't be this tired or lack this much motivation to do anything.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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I've gotten most of my results back and everything is in the normal range. Still waiting on the AGA and GDP. My CBC, chem 7, metabolic panel, thyroid, ferritin, and vit B and D were all normal and comparable to the values I got 12mo ago. In fact my D was up to 56 (was 32 a yr ago). I was hoping that hct, ferritin or vitamins would come back on the low end just to help explain why I'm so fatigued. I was also hoping that the results would show levels getting lower from a year ago to correspond with my symptoms increasing. But alas, no.

I've been gluten-free since Sunday and keeping that way until my follow up mid-Dec to see if perhaps I'm just gluten sensativ.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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You may want to consider getting a full thyroid panel done also. Tests include: TSH, free T3, free T4, and thyroid antibody tests. Low thyroid can cause fatigue and other symptoms. Thyroid problems are commonly seen with celiacs.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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You may want to ask for an adrenal panel as well as thyroid. If adrenals are not functioning properly you need to fix these first, before thyroid. Seems like only naturopaths test properly for adrenal function. You want to ask for a saliva circadian test for cortisol and DHEA. Also hormones such as progesterone could be low which could cause fatigue, or an estrogen dominance situation. Hormones are big players as well as vitamins in energy levels.


Basic bloodwork for celiac came back negative. No biopsy done.

Went gluten and dairy free November 7, 2011. Trying to figure this out myself...will update when/if I see results from gluten-free/DF diet!

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You may want to consider getting a full thyroid panel done also. Tests include: TSH, free T3, free T4, and thyroid antibody tests. Low thyroid can cause fatigue and other symptoms. Thyroid problems are commonly seen with celiacs.

T4 and TSH and antibody were run 10/2010 and were normal and T4 and TSH were run again this time and were normal and at the same level as a year ago.

Also hormones such as progesterone could be low which could cause fatigue, or an estrogen dominance situation. Hormones are big players as well as vitamins in energy levels.

I have been curious about hormone levels. This may be my next testing request.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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I used to have normal TSH and free T4, so nobody would treat my symptoms. When I first went to my endocrinologist my free T3 was tested and was low despite the other things being normal. The free T3 is a measure of the active hormone. Free T4 in the prehormone that breaks down into the T3. I was told I was not converting well and my endo now goes more by it than my TSH.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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I used to have normal TSH and free T4, so nobody would treat my symptoms. When I first went to my endocrinologist my free T3 was tested and was low despite the other things being normal. The free T3 is a measure of the active hormone. Free T4 in the prehormone that breaks down into the T3. I was told I was not converting well and my endo now goes more by it than my TSH.

This is helpful info. Thanks. I'm pretty sure the doc didn't test T3.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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This is helpful info. Thanks. I'm pretty sure the doc didn't test T3.

I also tested "normal" for TSH and T4, though my results for Free T4 were at the very bottom of the range. My TSH was at the top of the range. I couldn't get anyone to listen for symptoms for years.

When my new doc tested my Free T3 is was well below the range. Free T3 is the one your cell receptors pick up and use for metabolism, Free T4 is the form for storage. The normally functioning body converts T3 to T4 as needed; the autoimmune one doesn't do so well at converting, and many of the antibodies destroy the proteins that carry the hormone.

Probably too much information! All to say that thyroid is very complicated, and should be tested more thoroughly in a person with symptoms.

Good luck.


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

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I also tested "normal" for TSH and T4, though my results for Free T4 were at the very bottom of the range. My TSH was at the top of the range. I couldn't get anyone to listen for symptoms for years.

When my new doc tested my Free T3 is was well below the range. Free T3 is the one your cell receptors pick up and use for metabolism, Free T4 is the form for storage. The normally functioning body converts T3 to T4 as needed; the autoimmune one doesn't do so well at converting, and many of the antibodies destroy the proteins that carry the hormone.

Probably too much information! All to say that thyroid is very complicated, and should be tested more thoroughly in a person with symptoms.

Good luck.

Thank you. Would the symptoms present similarly to hypothyroid?


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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The normally functioning body converts T3 to T4 as needed

I believe beachbirdie meant to say that the normally functioning body converts T4 to T3....


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

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Thank you. Would the symptoms present similarly to hypothyroid?

For me, yes. Hashimoto's is a condition in which antibodies attack the thyroid or the hormone-carrying proteins, and the end result is hypothyroid. Also, hypothyroid can present with symptoms some might associate with hyper-thyroid. I suffered terrible palpitations, anxiety, insomnia, yet was hypothyroid.

I believe beachbirdie meant to say that the normally functioning body converts T4 to T3....

Oops! Thanks, Mushroom! That is what I meant! :wacko:


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

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Thanks all for the continued information. Very helpful.

My T4 was 1.3 (ref 0.9-1.8)

TSH was 1.18 (ref 0.35-5.50)

I'll definitely ask about T3 next month.

Also noticed that my Ferritin, while "normal" seems to be at the low end...40 (ref 10-291). Wondering if a low normal ferritin is contributing to the fatigue.


Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

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Thanks all for the continued information. Very helpful.

My T4 was 1.3 (ref 0.9-1.8)

TSH was 1.18 (ref 0.35-5.50)

I'll definitely ask about T3 next month.

Also noticed that my Ferritin, while "normal" seems to be at the low end...40 (ref 10-291). Wondering if a low normal ferritin is contributing to the fatigue.

Yes low ferritin can cause symptoms. I just wish mine was at 40 right now. I had gotten it back up to around that level and felt decent, but its starting to drop again and I have been symptomatic. My serum iron is low too. I just started supplementing again so I'm hoping to get it back up.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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