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Almost Hoping I Have It...


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#16 jasondub

 
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Posted 08 November 2010 - 08:33 PM

jason- can they tell when they test your blood if your T3 is active & normal or if it's "reverse"/inactive T3?????
please explain this to me like im a 2 yr old... i would like to understand this and be able to have better communication with my doc in december.
im so confused- because im on synthroid now.. tested as Hypo. but i was confused as to why my T3, uptake, and T4 were all very normal numbers- while my TSH was 11.39. could some of my T3 be inactive???


Hey cass,

Yes, there is actually a test for Reverse T3 (RT3) that your doctor can order. One thing to keep in mind, a lot of doctors treat hypothyroid patients by numbers on a lab versus actual symptoms. They'll look at your TSH level for example and say, "oh, it's within range, you're just fine" even though you feel like crap. Some doctors don't even check RT3 yet they prescribe their patients Synthroid (T4) only medication - this can make things even worse. This medication is not right for most hypothyroid patients and many doctors still insist it is the gold standard. You do not want to be on this medication alone.

I'll try to explain a few of the important markers for thyroid state and give you some examples of questionable practices that are followed by MANY doctors.

Some quick background:

  • T4: This is a pro-hormone produced by your thyroid. A healthy body will convert this to T3 and any excess to inactive Reverse T3. This is around 80% of what your thyroid produces. The rest being active T3 and small amounts of T2 and T1.
  • T3: This is the active thyroid hormone that can actually be used by your body. This is the golden hormone.

Valuable thyroid tests:

  • TSH - Thyroid Stimulating Hormone This is a signaling hormone from your pituitary gland that tells your thyroid to produce hormones. Think of it as a thermostat for your metabolism. The higher the number, the more your thyroid is being told to produce. Many doctors use this marker alone to determine the state of your thyroid (which is wrong).
  • Total T3 This is the amount of total T3 in the blood. This could be active and inactive (already bound to something) T3.
  • Free T3 This is the amount of "free" T3 in the blood. This T3 is not bound to anything and is available for cell metabolism.
  • Total T4 Similar to total T3, this is the amount of total T4 in the blood.
  • Free T4 This is the amount of "free" T4 in the blood. This is T4 not bound to anything and is available for conversion to active / inactive thyroid hormone.
  • Reverse T3 This is a mirror image of T3. It is inactive but it fits in the T3 cell receptor, blocking T3 from entering.

    Thyroid Antibodies
  • TPOab (thyroid peroxidase)
  • TgAb (antithyroglobulin)

    If you have any thyroid anti bodies, then you likely have an auto-immune condition called "Hashimoto's Thyroiditis." When your thyroid is working, your immune system will begin attacking it, wearing it down. This is how many of us develop a hypothyroid condition. These anti-bodies will also bind to active thyroid hormones and prevent them from being able to be metabolized. Think of them like a boot on your car.

----

If you're on Synthroid (T4) now. There is a chance that a lot of the conversion from T4 is moving into RT3. The problem with this is it will create a vicious cycle because actual T3 will build up since RT3 is blocking it at the receptor site. This makes your body turn the supplemental T4 into RT3 in an attempt to prevent too much T3 from building up in the blood.

There is another component to all of this, the stress hormone Cortisol. Cortisol is a necessary component for the metabolism of T3 by the cells. If your cortisol is low, then you might not be able to metabolize T3 efficiently even though Free T3 levels are high enough. In this case, people use something like hydrocortisone to support the process. You can check your cortisol levels by doing a simple saliva test that you can order online. It is best to address any adrenal issue before treating the thyroid. It is important that you rule out any adrenal insufficiencies.

An excellent way at determining the current state of your metabolism is to take your temperature 2-3 times a day for a few days. If the average is constantly lower than 98.3-98.6 then it is likely that even though you're taking thyroid meds, you aren't getting the metabolic reactions you need to feel better - leaving you with hypothyroid symptoms. Before starting thyroid meds, my temperature was a steady 97.6F. I felt horrible. Like a zombie.

Any thyroid medication you begin taking will suppress your natural thyroid production, this will lower TSH levels. When some doctors see TSH low or within range, they think you're good to go because your body isn't signaling for more thyroid hormone. This leaves many people in the dirt due to unaccounted for roadblocks as stated above (antibodies, high reverse t3).

----

Consider asking your doctor on changing you from T4 only meds to something like dessicated thyroid (Armour) which contains both T4 and T3 at a natural ratio (like our thyroid glands produce). Even the addition of synthetic T3 to your T4 would be better than just T4 alone.

An *excellent* book if you suffer from hypothyroidism / fatigue is Stop The Thyroid Madness (Google it). This book will shed so much light on this subject and it is a very easy read. If you're suffering from hypothyroid symptoms it could easily change your life.

As you can see, this can all be a little overwhelming. But, once it "clicks" you'll be able to take control of your life once again. Hope this all helps! Let me know if you have any other questions.
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#17 cassP

 
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Posted 09 November 2010 - 10:20 AM

God Bless u Jason!!!!!! im going to print this out & get the book...
this will help me a lot... plus my mom is hashimotos and she's been on synthroid 75mcg for years... she's never felt any better from it... her pcp (same as mine).. AND her doc at MAYO dont seem concerned <_<

thankyou so so so much... this is SO HELPFUL!!! :)
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#18 jasondub

 
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Posted 09 November 2010 - 10:43 AM

God Bless u Jason!!!!!! im going to print this out & get the book...
this will help me a lot... plus my mom is hashimotos and she's been on synthroid 75mcg for years... she's never felt any better from it... her pcp (same as mine).. AND her doc at MAYO dont seem concerned <_<

thankyou so so so much... this is SO HELPFUL!!! :)


No problem! The hardest part is finding a doctor that actually knows what they're doing. Thyroid medication is relatively cheap. Dessicated thyroid like Armour, Westhroid, etc is somewhere around 35 cents a pill. This is because big pharma can't patent it. This is also another reason why many doctors were pushing T4 many years ago even though dessicated thyroid was being used successfully for around 50 years prior. It's all about $. Sadly, now that patents have expired, the school of thought / training hasn't really changed.

A good bet would be to call a compounding pharmacy close to you and ask them for a list of doctors in your area that prescribe dessicated / compounded thyroid to their patients. This way you know you're going to a doctor in the know :)

Some people even go as far as self medicating, ordering meds online from overseas.

In any case, keep me posted on any progress you've made. I'd like to know if all of this helps :)
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#19 reddgreen

 
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Posted 10 November 2010 - 05:21 PM

Dear Jenny,
I sincerely wish you the best of luck getting diagnosed, and on the road to treatment. I just found this blog today, and this is my first post. Your symptoms describe mine to a tee, when I was your age. My doctors over the years have just about ignored me. My last GI specialist could do nothing but request CT scans with awful contrast dye (that I have, unfortunately, developed a horrible allergy to).
My trembling occurs when I am hungry. I get more than dizzy, and have fallen over a few times. I sweat more than usual when this occurs as well. It comes and goes.
I hear you about never having "felt right", or well. My digestive tract disorders have gotten progressively worse over the past 10 years. I'm now 50, and its gotten to the point where I can not stand the pain. I get terrible burning pain in my upper intestines, gas pain, and stomach pain, GI bloating, alternating diarrhea and constipation. I feel weak most of the time, can't sleep due to the digestive tract pain. My lactose intolerance has gotten much worse over the past 15 years. Depression, low blood sugar (and its related symptoms), as well as vitamin deficiencies, I have these as well.
Not one of the many GI specialists Ive seen ever even spoke to me about possible gluten allergies or the possibility of coeliac disease.
After reading about your symptoms, and several others on these posts, I dug out the last GI doctors phone number and will call tomorrow to ask about gluten/Coeliac related disorder testing.
Please let us know how your tests go, and best luck finding out what's wrong and lets get healthy!
Regards,
Mike
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#20 Jenny Leigh

 
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Posted 10 November 2010 - 08:02 PM

Hey everyone! Just an update on my continuing waiting game... still waiting on Celiac & IBD blood tests. As well as ultrasound on the liver/gallbladder. Should be talking to that doctor in about a week or two.

A *new* development... I had my first internal medicine dr appt today, and she is currently leaning towards some sort of hypoadrenal disorder (like Addision's Disease) and has ordered the following blood tests:
Cosyntropine stimulation test (adrenal gland test)
Serum ACTH level (adrenal)
CBC (complete bloodcount)
CMP (overall health test of some kind)
TSH/FT4 (thyroid)
ESR (inflammation)
C-RP (inflammation/liver)
ANA (autoimmune)

She is of course interested in whatever comes of my tests with GI doc. I pressed going on an elimination diet and she said she wanted to wait and see what all these results came out to be. I go for testing this Friday, and follow up with her on the 24th.

No matter what comes of all of this, I think I want to go on an elimination diet anyway. Food has hated me for so long I now hate it back... I'm scared to eat anything. Had some chicken and rice earlier and it sat in my stomach like a sack of rocks. Oh, and this weekend I ate a big baked potato and wanted to vomit for 3 hours. I'm thinking that even if I do not have any food intolerances at all... at least an elimination diet would help ease my fear of eating.

110.8lbs and counting... down 3 pounds from last week. I nearly have the anorexic runway model look down. :/

~~~~~~~~~

And Mike,

Thank you for sharing and I hope you can figure everything out soon! Just keep in mind, even if you test negative on everything you could still have some sort of food intolerance... so consider a special diet no matter what anyone says. Might want to schedule an appt with a dietitian or internal medicine as well. Good luck at getting better!
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#21 cassP

 
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Posted 11 November 2010 - 08:57 AM

jenny- keep in mind that eliminating gluten may still be one of your major answers.
even if you came back positive for Addison's or Hypoadrenals or adrenal fatigue- you could still have Celiac or Nonceliac Gluten Intolerance on top of that..
many of these conditions go together or cause eachother.
ie: i have Celiac.. and just tested as Hypothyroid.. next i want them to check if it's Hashimoto's and ALSO to check my adrenals. all these conditions can be caused by GLUTEN
an elevated ANA can mean ANY autoimmune disease- whether it's celiac or Addison's or both

good luck with all your results and hope u feel better & get answers :)
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#22 Jenny Leigh

 
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Posted 12 November 2010 - 08:55 AM

Okay, got some results. Celiac blood panels are negative. IBD panel is negative. Ultrasound is normal.
Follow up with GI doc on 12/13/10

Here are the numbers... reference range in (xxx)

Celiac Serology:
Anti-Gliadin IgG ELISA (AGA IgG) -- 6.9 U/ml ( < 16.3 U/ml)
Anti-Gliadin IgA ELISA (AGA IgA) -- 1.1 U/ml ( < 9.3 U/ml)
Anti-Human Tissue Transflutaminase IgA ELISA (TTG IgA) -- 0.4 U/ml ( < 10.3 U/ml)
Anti-Endomysial IgA IFA (EMA IgA) -- Negative (Negative)

Total Serum IgA by Nephelometry (TOTAL IgA) -- 63 mg/dl ( >13 years to adult: 44-441 mg/dl)

IBD Serology:
ASCA IgA ELISA -- 14.3 EU/ml ( < 20.5 EU/ml)
ASCA IgG ELISA -- < 12.0 EU/ml ( < 22.2 EU/ml)
AntyOmpC IgA ELISA -- 7.1 EU/ml ( < 28.8 EU/ml)
Anti-CBir1 ELISA -- 25 EU/ml ( < 34.9 EU/ml)
IBD Specific pANCA...
AutoAntibody ELISA -- < 12.1 EU/ml ( < 18.7 EU/ml)
IFA Perinuclear Pattern -- Not detected (not detected)
DNAse Sensitivity -- Not detected (not detected)

Also picked up some labs from my GP regarding my thyroid:
12/04/09 TSH -- 7.020 (0.450-4.500 ulU/mL)
Started levothyroxin 125 micrograms daily
12/18/10 -- Woke up with dizzyness, hot flashes, diarrhea, fever, nausea, nystagmus etc, etc (migraine the night before). I cut back a little on the levothyroxin thinking it might be the cause
12/24/2009 TSH -- 4.800 (0.450-4.500ulU/mL)
Still ill. Stop taking levothyroxin. Got to Endo doc in February, says TSH is normal. Take no levo at all..
8/26/2010 TSH -- 3.34 (0.25-5 IU/ml) On *NO* meds

Vitamin D 8/26/10 -- 34.0 (32.0-100.0ng/mL)

Awaiting testing on adrenal system, various others, and another TSH. Follow up with Internest 11/24/10

So, let me know what you think of all this... also is 125 micrograms of levothyroxin a normal starting dose?
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#23 cassP

 
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Posted 12 November 2010 - 04:53 PM

OMG, now i am very new to all this thyroid stuff- i just got dx with Hypo (TSH 11.39)... but i am PRETTY SURE that 125mcg is way too high for a STARTING DOSE... no wonder u felt sick and dizzy.

but i am confused at how your TSH dropped to 3. something with no meds??? idk.. im still learning about it.

and all your gluten antibody tests are so negative- were you gluten free before your test??
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#24 Jenny Leigh

 
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Posted 29 November 2010 - 09:11 AM

Okay... more test results in. The new stuff is down below and everything is on my profile page. They tested my adrenals and thyroids. Everything came out negative of course. There was some errors made by the lab, so I'm getting it redone on 12/13/10 as well as a more thorough screening of my thyroid (TSH is 4.44 per latest test).

The only blip on the radar with these tests were in the Automated Differential blood test. My neutrophils was a bit low and my lymphocytes was a bit high. This suggests infection of some kind, and perhaps dietary deficiency or Addison's. The internest didn't even mention it or point it out... so obviously it is no cause for concern to her.

ANA is borderline...

Her diagnosis was vestibular neuritis that I just can't seem to kick. So, then I broke down into tears telling her that it isn't matching many of my symptoms, and if all my tests results are normal/negative... how can I feel like such **** all the time?? Of course all the blood tests were done when I felt pretty good. So there is that...

Tomorrow I'm testing my B12 and I'm beginning an elimination diet for Gluten, Casein, Soy, and Nightshades.

If I'm not significantly better by end of February from this... the interest is talking about sending me off to Mayo Clinic. Oh joy.

~~~~~~~~~~~~~~~~~~~~~~~~
Lab results
~~~~~~~~~~~~~~~~~~~~~~~~

11/15/10 Adrenal Testing NEGATIVE
ACTH Stimulation Test
Cortisol Base ACTH -- 20.2 ug/dL (4.0-22.00) time: 8:34
Cortisol 60 Min Post ACTH -- 30.8 ug/dL (no ref range given) time: 10:22
Errors by lab made... redoing test on 12/13/10
I also don't think the doctor gave me all the pages


11/15/10 Analyzer/or Components NEGATIVE
ANA Screen -- 0.94 Units (0.00-0.99)
1.0 and greater is positive
Screens for autoimmune

11/15/10 CBC (Complete Blood Count) NORMAL
WBC -- 4.2 1000/ul (4.0-11.0)
RBC -- 4.67 mill/uL (3.8-5.3)
Hgb -- 13.4 gm/dl (12.0-16.0)
Hct -- 39.5 % (37.0-47.0)
MCV -- 85 fl (80-100)
MCHC -- 34 gm/dl (31.0-37.0)
RDW -- 14 % (12.1-14.9)
Plts -- 230 1000/ul (150-375)
MPV -- 8.7 fl (6.5-12.0)

11/15/10 Automated Diff
Neut% -- 36 (44-81) LOW
Lym% -- 49 (21-47) HIGH

Mono% -- 10 (2-11)
Eosin% -- 3 (0-7)
Baso % -- 2 (0-2)
Neut A -- 1.5 1000/ul (1.5-10)
Lym A -- 2.1 1000/ul (1.3-2.9)
Mon A -- 0.4 1000/ul (0.1-1.0)
Eos A -- 0.1 1000/ul (0.0-0.7)
Basos A -- 0.1 1000/ul (0.0-0.2)

11/15/10 Chemistry Panel NORMAL
Na -- 139 mEq/L (136-145)
K -- 4.1 mEq/L (3.5-5.1)
Cl -- 109 mEq/L (100-109)
CO2 -- 26 mmol/L (22-33)
Gluc -- 87 mg/dL (70-100)
BUN Level -- 17 mg/dL (5-25)
Creatinine Level -- .85 mg/dL (.57-1.25)
Calcm -- 9.8 mg/dL (8.8-10.6)
TotPrt -- 6.8 gm/dl (6.0-8.3)
Alb -- 4.0 gm/dL (0.2-1.2)
Bili T -- 0.5 mg/dL (0.2-1.2)
AlkP -- 47 unit/L (40-150)
AST (SGOT) -- 15 unit/L (10-58)
ALT (SGPT) -- 24 unit/L (5-50)

11/15/10 Immunology/Serology NORMAL
C Reactive Protein -- 1.5 mg/L (0.0-5.0)

11/15/10 Other Cellular Testing NORMAL
Sed Rate -- 5 mm/hr (0-15)

11/15/10 Thyroid Group NORMAL
TSH -- 4.441 mIU/L (0.350-4.940)
Thyroxine Free -- 1.28 ng/dl (0.70-1.48)

HIV Test - Negative
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#25 Jenny Leigh

 
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Posted 29 November 2010 - 09:12 AM

Also, I've read a clinical guide to thyroid disease, "Stop the Thyroid Madness", and two gluten books... all of this is making me want to scream at doctors...
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#26 Gutsy Girl

 
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Posted 13 December 2010 - 08:52 PM

Hi, my name is Jenny and this is my first post here... and it seems as though it certainly won't be my last.

I am 26 and I have never felt "right". Ever in my life. My health problems came to a head last Christmas, from a sudden vestibular problem that I am still battling. It started to dawn on me that all of my health problems might could be rolled up into one package - Celiac disease.

Tomorrow afternoon I have an appointment with a gastro doctor and I am specifically going to ask for Celiac testing. Considering everything I have gone through over the years, and the rapid deterioration of my health during the last year, it has gotten to the point where I hope I have Celiac... *THAT* I can treat.

I want to write out a quick run down of my various problems and am hoping I am not completely insane for thinking this might be Celiac. Any input would be appreciated (as well as any alternatives I should be trying), and if I do turn up positive, I'm sure I will be on these boards much more often.

History:
Psoriasis - Diagnosed at age 6, finally dormant at age 24
ADHD, inattentive type - Diagnosed at age 8, battling ever since
Unexplained trembling - All my life... 24/7. Worse when hungry, ill, or stressed
Low blood sugar - Age 14 the symptoms became apparent and progressively worse through the years. From age 23 to now it has become a serious problem
Prone to depression since age 14, put on anti depressants for this and ADHD at age 16
Generally sensitive stomach since 22
Lactose Intolerant (self diagnosed) shortly after turning 25 (mid last year).
Extreme blood sugar crashes, Vitamin D deficiency, hypothyroidism around Thanksgiving last year. Sensitivity to food increasing (not pain, but nausea, full to fast, slow digestion, diarrhea, constipation... etc).

Dec 18, 2009 - extreme migraine. Vestibular Neuritis. Nystagmus, Vertigo, hot flashes, fever, diarrhea, nausea, palpitations, numerous worthless ER and Doctor trips. Lose 20 lbs in two weeks flat. I am the walking dead.
January 2010 - Catscans; MRI - nothing

I have been horribly ill ever since then, always hungry, and either unable to eat, or unable to fill up. I look anorexic having lost so much weight. My breasts have shrunk to just below an AA and I can barely make it up a set of stairs without my heart rate elevating. Lately I have been re-diagnosed with Vestibulopathy after an ENG, which is an autonomic (peripheral) disorder. I have numerous other symptoms I have not listed, but everything seems to be stemming from these problems.

And another thing... Alzheimer's runs in my family on my father's side and I have read of a recent connection made between Alzheimer's and Celiac.

Let us hope I am not insane. If I don't have Celiac's I honestly don't know where to go from there. :( I'm so anxious!! I feel like I am slowly dieing. I'm sorry for such a long post. Thank you for reading and any thoughts you may have.



Hey Jenny,
I'm 26 as well. I need to go to bed soon, but here are a few thoughts for you to take with a few grains of salt and chew on before swallowing. LOL.

We share a lot of similar symptoms, but I don't have the thyroid problems that I know of. My bloodwork came back negative for celiac disease after I went gluten free for more than one year. I found out I was either Gluten Sensitive or Celiac after I was committed to a mental institution following being EXTREMELY SICK for months in 2009, not eating, not sleeping, ready to commit suicide. God had other plans for me, gratefully, and His grace has been sufficient. My GI doc (I haven't had INS and I'm poor so no docs for me until late 2010) recently said he believes I have Celiac with gluten ataxia. I kinda knew that since 2009, as the diet has confirmed that clearly for me (as well as a few CC incidents), but....

Check out gluten ataxia. I've written a fair amount about it on this forum, so I'm sure you can easily look up some of my posts and you'll find it.

Also, you said...
"I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels."

My experience with blood tests for Vit deficiencies is that blood tests aren't very accurate. Example: I've been low in Magnesium a number of times. Only once did they give me an IV, but I've had heart, breathing, muscle spasm, and fainting issues from the deficiency. Probably also mixed with Vit B-12 deficiency. But anyways, I know when my Mag is low - it's very clear to my based on my symptoms and remembering how I've felt before. But only a small percentage (very small) of your entire body's store of Magnesium and Calcium actually resides in the bloodstream. Most is stored in bones and tissues. Therefore, it is possible with some Vit's and Minerals to be deficient but have bloodwork show that you're good. B-12 can also show false high reading because of a lack of intrinsic factor. I'm still fighting with my GI doc over that one. :P

You also said...
"Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly."

I think we should properly warn you about GLUTEN WITHDRAWAL. It's worse for some more than others, but for me the gluten withdrawal was really intense. Like drug withdrawal - fever, migraines, you name it....it was B-A-D. Took me literally a few months before my body started to calm down after removing gluten. And that always-hungry despite just eating feeling started to subside too. That's a sign that you're not absorbing nutrition well from what you eat. But I'd say don't give up right away until you've tried it for a few months at least. Get through the withdrawal and then see how you feel.

Hope this helps a little...I don't know. Best wishes to you. Feel free to message me; I'm glad to help as much as I can.

Sarah
  • 1
Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#27 Jenny Leigh

 
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Posted 14 December 2010 - 10:17 AM

Hey Jenny,
I'm 26 as well. I need to go to bed soon, but here are a few thoughts for you to take with a few grains of salt and chew on before swallowing. LOL.

We share a lot of similar symptoms, but I don't have the thyroid problems that I know of. My bloodwork came back negative for celiac disease after I went gluten free for more than one year. I found out I was either Gluten Sensitive or Celiac after I was committed to a mental institution following being EXTREMELY SICK for months in 2009, not eating, not sleeping, ready to commit suicide. God had other plans for me, gratefully, and His grace has been sufficient. My GI doc (I haven't had INS and I'm poor so no docs for me until late 2010) recently said he believes I have Celiac with gluten ataxia. I kinda knew that since 2009, as the diet has confirmed that clearly for me (as well as a few CC incidents), but....

Check out gluten ataxia. I've written a fair amount about it on this forum, so I'm sure you can easily look up some of my posts and you'll find it.

Also, you said...
"I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels."

My experience with blood tests for Vit deficiencies is that blood tests aren't very accurate. Example: I've been low in Magnesium a number of times. Only once did they give me an IV, but I've had heart, breathing, muscle spasm, and fainting issues from the deficiency. Probably also mixed with Vit B-12 deficiency. But anyways, I know when my Mag is low - it's very clear to my based on my symptoms and remembering how I've felt before. But only a small percentage (very small) of your entire body's store of Magnesium and Calcium actually resides in the bloodstream. Most is stored in bones and tissues. Therefore, it is possible with some Vit's and Minerals to be deficient but have bloodwork show that you're good. B-12 can also show false high reading because of a lack of intrinsic factor. I'm still fighting with my GI doc over that one. :P

You also said...
"Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly."

I think we should properly warn you about GLUTEN WITHDRAWAL. It's worse for some more than others, but for me the gluten withdrawal was really intense. Like drug withdrawal - fever, migraines, you name it....it was B-A-D. Took me literally a few months before my body started to calm down after removing gluten. And that always-hungry despite just eating feeling started to subside too. That's a sign that you're not absorbing nutrition well from what you eat. But I'd say don't give up right away until you've tried it for a few months at least. Get through the withdrawal and then see how you feel.

Hope this helps a little...I don't know. Best wishes to you. Feel free to message me; I'm glad to help as much as I can.

Sarah



Hi Sarah! Thank you for your reply. The newest developments aren't terribly exciting. I've canceled my adrenal and thyroid tests, because I feel too "good". I want my adrenals tested when I'm doing bad. All my vitamins came back normal. Whoopdedoo.

I've been gluten free for a few weeks now and feel pretty good in comparison to the usual. I've dropped to about 106lbs and am reacting to foods I've never had a problem with. (I am buying everything whole and making everything with just salt, pepper, and butter. Also revamped my personal care products). Because of the continuing drama with my stomach and my fear of eating I've decided to do a LEAP MRT test... if for no other reason than to remove my fear. Going to work with a dietitian to come up with an elimination diet based on that. I'll know more after Christmas.

LEAP MRT has a note of controversy around here, but at this point, I figure it can't hurt anything but my wallet. If anything comes of that I'll start a new thread.

So far I am gluten, soy, and nightshade free for two weeks. I've reintroduced casein (lactose free) and feel a bit off but I don't know yet if that is because of casein or just me lapsing on my vestibular exercises. Of course I've been eating butter so I haven't been too strict on that. I figure I will give the gluten free diet around 2.5 months to show improvement. I've found a cousin of mine is gluten intolerant (she has skin problems, no GI symptoms)...

My thyroid is slipping back into a hypo state, which is not too much cause for concern for me. Hoping I can use it to my advantage and gain weight. Come February, I'll get it retested and start on sheep thyroids and adrenals and see if that helps... plus stay off the soy.

I don't have much else going on regarding everything. I just hope I can gain some weight. Overall I am doing much better... but this is how it does. I get better for a while, then eat or do something that triggers a relapse and I am back to square 1 shaving off 5 pounds each time.

We shall see!
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#28 Gutsy Girl

 
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Posted 15 December 2010 - 07:56 PM

I've been gluten free for a few weeks now and feel pretty good in comparison to the usual. I've dropped to about 106lbs and am reacting to foods I've never had a problem with. (I am buying everything whole and making everything with just salt, pepper, and butter. Also revamped my personal care products).

Because of the continuing drama with my stomach and my fear of eating I've decided to do a LEAP MRT test... if for no other reason than to remove my fear. Going to work with a dietitian to come up with an elimination diet based on that. I'll know more after Christmas.

LEAP MRT has a note of controversy around here, but at this point, I figure it can't hurt anything but my wallet. If anything comes of that I'll start a new thread.

So far I am gluten, soy, and nightshade free for two weeks. I've reintroduced casein (lactose free) and feel a bit off but I don't know yet if that is because of casein or just me lapsing on my vestibular exercises. Of course I've been eating butter so I haven't been too strict on that. I figure I will give the gluten free diet around 2.5 months to show improvement. I've found a cousin of mine is gluten intolerant (she has skin problems, no GI symptoms)...

I don't have much else going on regarding everything. I just hope I can gain some weight. Overall I am doing much better... but this is how it does. I get better for a while, then eat or do something that triggers a relapse and I am back to square 1 shaving off 5 pounds each time.

We shall see!


Jenny,
I know next to nothing about thyroid and I've never heard of the LEAP MRT so will have to google that when I have time and am more rested and alert. :)

Glad you've gone gluten free. But so sorry you're having trouble. *Compassionate smile.* I feel for you.

So...you said you're cooking with butter and doing simple stir-fry sort of deals with fresh veggies. I do this a lot too! Oftentimes, to avoid the butter and dairy, I will use a Tablespoon of olive or canola oil. I don't know if those will agree with you, but if you think there's hope in using that in leiu of butter, that may be an option to consider.

Are you able to eat any meat of any kind? Protein seems to be quite lacking in your diet with no mention of it so far. For me, I really like red meat but I have to just about BURN it before my GI system is able to digest it. I do only a little better with chicken. I've started increasing the dose of my probiotics and digestive enzymes lately, however, and I'm seeing some improvements in how I digest meats. I also bloat a lot less with these meats than I do when I eat any carbs, fruit, etc. I hate seafood, but it doesn't seem like many people here have mentioned bad reactions to it, so that could also be a good source or omega-3's. With digestive enzymes, if you take them, don't take more than recommended because some have Hcl added to increase stomach acid to improve digestion...but too much of a good thing can go sour (pun intended).

Staying away from soy is just good nutritional advice in general. It doesn't do kind things to humans. Even moreso, it can throw hormones outa whack because it mimics estrogen. I cut it out and have been glad I did - my guts, face (acne), and joints all thank me.

Wow...hope things work out for you, dear. I know it can feel overwhelming (especially around the holidays!!). If you think I can help, give me a holla! :D

Sarah
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Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#29 Jenny Leigh

 
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Posted 01 January 2011 - 08:57 PM

I've decided to start a new thread based on my LEAP MRT test results. You can see it here: http://www.celiac.co...t-test-results/

I'm beginning to think I *might* not be gluten intolerant due to no reaction from a gluten binge after 4 weeks of being completely gluten free... and yes... I'm certain I guarded against all cross contamination even through the holidays. I wonder if 4 weeks was long enough of a test.

I'm updating this post in case anyone ever researches my thread and because I *HATE* unresolved threads whenever I do net research.

Happy new year and best of luck to everyone!
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#30 Marz

 
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Posted 04 January 2011 - 12:54 PM

I'm beginning to think I *might* not be gluten intolerant due to no reaction from a gluten binge after 4 weeks of being completely gluten free... and yes... I'm certain I guarded against all cross contamination even through the holidays. I wonder if 4 weeks was long enough of a test.


Hi Jenny,

Hope you find out what's wrong :/ Keep in mind that symptoms from a gluten- binge can happen several days after eating it, or only after several days of eating gluten consistently. The classic "gluten challenge" involves eating wheat 3 times a day for a week or two to see what effect it has on you. Eat a single-ingredient item, like cream of wheat, to keep it simple and ensure the reaction is due to gluten not something else.

It may also take a few weeks gluten-free to really start feeling better. You've already said you're feeling a bit better being gluten-free?

Thirdly, keep in mind symptoms can change after going gluten-free. My main symptoms before gluten-free were upset stomach, D, pain, nausea etc. Now stomach is great, but I get other reactions, like panic attacks, dizziness, extreme itchy skin without any stomach symptoms if I slip up.

I know how it feels to feel anxious over food, whether eating something is going to make you sick. I also suffer from a few weird food intolerances. :( After being gluten free for 6 months now, I've been able to start tolerating certain foods I could absolutely not eat before. So there is hope, if this is your problem it can get better!

Hope you get some answers soon!
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant




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