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Help! 3-Year Since Celiac Diagnosis And It's Been All Downhill!

celiac disease hypothyroid hashimotos brain fog stomach ache headache fatigue cognitively sluggish balance and coordination vitamins and minerals

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#16 cyclinglady

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Posted 13 June 2013 - 07:09 PM

Holy Crap, Batman!  Your TPO is 2,000?   :o   I thought mine were bad at 1200.  

 

I am not trying to scare you but here's what I have learned.....what high antibody levels mean is that your thyroid is under attack from your immune system and is being destroyed.  The higher the number, the bigger the assault.  What I have done over the past 9 years is to suppress the TSH down to nothing, which scares the hell out of mainstream endo's.  They always think you are being over dosed. By suppressing the TSH and only going by your T3 and T4 numbers, you stop the pituitary gland from screaming out for more thyroid hormone. When T3 and T4 get low, the pituitary gland, which works in a loop with the thyroid, releases TSH...thyroid stimulating hormone, to jolt the thyroid into pumping out more thyroid hormone......only it can't because it's under attack from your immune system.

I am going to offer up a link for you to read about how this all works.  http://www.stoptheth...hy-its-useless/

 

When I suppressed my TSH down to .01, and went by my T3 and T4 only, my TPO started to come down.  It was slow but after 8 years gluten-free, my latest TPO came in at 32.  So, I went from a full scale autoimmune attack of 1200 down to 32...normal range.  Yes, that is a long while but I did it and now my autoimmune system is leaving my thyroid alone and my levels have become pretty stable.  I have NO hyper symptoms at all.  I use Nature-throid natural thyroid supplement and it is a Rx.

 

This is the biggest area of malpractice right behind the lack of a Celiac diagnosis for many.  Endo's tend to be very old school and it doesn't work if you have Hashi's.  Not only do you have to get your thyroid balanced, it is important to try and get your antibody numbers down into the normal range. You want to stop the attack.  The gluten-free diet is important but proper dosing with the right meds is also important. This is an area that really pisses me off. I won't go to endo's...they are nuts. I go to a functional medicine MD...she is a doctor, not a make believe doctor.  There are a few endo's, I have heard, who treat this way but they are rare.  Why doctors pay no attention to the antibodies once you are diagnosed makes me crazy.  Right up there with doing a tTg only to check for dietary compliance with Celiac.

 

I hope I haven't made your head spin but take a gander at the website because it has a wealth of good information.  It worked wonders for me.  The last idiot I went to years ago only checked my TSH and proclaimed that I was perfect with a TSH of 2.5. The problem was, I still had raging hypo symptoms but I guess that doesn't count.   :wacko:

Yes, my thyroid has been burning itself out.  It's almost completely trashed.  Everything's in range except for my TSH which is at a 4.  Still much too high.  I'm best around a 2.  I'm waiting to see if being gluten-free (it's been 10 weeks) will allow my thyroid meds (I take Armour) to be absorbed.  Have been hypo for the past six months.  It's slowing coming down.  It was 12 back in January. 

 

But I'm happy to be hypo.  Last fall I was hyper.  My TSH was swinging back and forth from hypo to hyper and my T3 and T4 figures remained constant.  When my TSH levels hit  .01 or .05 it was way too low for me.  I started getting Grave's Disease symptoms:  muscle weakness, extreme irritability, hyper, inability to sleep, and  vision problems.   It was scary!  My mother has Grave's and she has permanent eye damage and I don't want that! I've also been in perimenopause, so that may have contributed to my problems.  

 

So, I'm a little hypo, but I'm really afraid to become hyper again.  My doctor's approach is to be very cautious.  

 

Thanks for the links!  


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Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#17 quincy

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Posted 22 June 2013 - 06:19 PM

I am wondering if my symptoms are hypo thyroid.  My latest TSH was 3.25.  My functional medicine doctor got me down to 2.5 a few years ago but

it has gone back up.

 

I have been experiencing alot of muscle pain lately.  I wake up with stiff muscles every morning. Fatigue and listlessness.  I recently went for a trigger 

point massage and the therapist revealed painful points all over my body, thighs, butt, back and spine. He never went up to shoulders or I would have

been in worse agony if he had. 

 

Could all this muscle pain be thyroid related.  My PTH was 17, which was low.  I am taking hydrochlorothyozide 12.5 mgs for calcium leakage from the kidney's  because I have osteoporosis in my femur neck.  

 

I say all this because my point is similar to gifree's.  Since going gluten-free 3 years ago, it's been one thing after another, a downward trajectory rather than an upward one to better health.  This really sucks I have to say.


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#18 GFinDC

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Posted 23 June 2013 - 11:52 AM

Greetings All: I wish this were a feel-good post...

 

....

 

I have had numerous allergen tests and tested slightly positive to certain airborn allergens and a whole bunch of foods. The food test was conducted by alletess shortly after diagnosis, but my GI doc dismissed the results. I'm wondering, now 3-years later, if I should have the test done again and closely adhere to the recommended foods/rotation, etc. I never knowingly consume gluten, but do occasionally consume other common allergens...soy/egg/lactose/nuts. Since my malaise/pain is constant, it's been very difficult to associate symptoms with specific foods...if that's even the problem.

 

....

 

Does the above resonate with anyone? Does anyone have any suggestions? I'm all ears.

 

Thanks!

 

Hi Gifree,

 

Maybe you should try eliminating those common allergens for a while?  Nightshades, corn, eggs, dairy, and soy are often enough trouble makers for people.  taking them out of your diet is the best test to see if they are affecting you.  Corn starch in your meds may be ok.  It is the proteins in foods that people generally react react to.  I don't know that anyone tests their meds for corn proteins though, so it is kind of an unknown if you will react or not.

 

Thyroid hormone being low (hypo) can cause plenty of fatigue, sore joints etc  So that's definitely another possible issue.


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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

#19 cyclinglady

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Posted 26 June 2013 - 09:08 AM

I am wondering if my symptoms are hypo thyroid.  My latest TSH was 3.25.  My functional medicine doctor got me down to 2.5 a few years ago but

it has gone back up.

 

I have been experiencing alot of muscle pain lately.  I wake up with stiff muscles every morning. Fatigue and listlessness.  I recently went for a trigger 

point massage and the therapist revealed painful points all over my body, thighs, butt, back and spine. He never went up to shoulders or I would have

been in worse agony if he had. 

 

Could all this muscle pain be thyroid related.  My PTH was 17, which was low.  I am taking hydrochlorothyozide 12.5 mgs for calcium leakage from the kidney's  because I have osteoporosis in my femur neck.  

 

I say all this because my point is similar to gifree's.  Since going gluten-free 3 years ago, it's been one thing after another, a downward trajectory rather than an upward one to better health.  This really sucks I have to say.

Yes, it could be thyroid related.  But, have you read the side effects of the hydrochlorothyozide?   It sounds like it could interfere with your thyroid or be adding new symptoms (e.g. muscle pain, weakness, etc.)    It would be worth researching.  Read the manufacturer info sheets and Google the drug and thyroid.  Others may have experienced the same issues.  


  • 0
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




Celiac.com - Celiac Disease Board Moderator

#20 Alwayssomething

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Posted 27 June 2013 - 02:40 AM

I have Hoshi's and have been hypo since diagnosis 2 years ago, even though my TSH was down to .11 (my dr wanted it here becuase of nodules and not wanting them to grow) I was still have signs of being hypo.   THEN I started was some more neurological issues, ones I had had before I found out I had Celiac, but now they were happening more often.   Extensive research lead me to low vitamin B12, so my next dr visit I told him my symptoms (again, I had complained a couple times before) and he suggested and tested my B12.   It was indeed low, which according to eveything I seen online it goes with Hoshi's and anemia and a few other issues.    Anyway I am getting B12 injections right now and they are helping soooo much.    I looked through all my previous bloodwork for the last 4 years (2 years prior to celiac diagnosis) and not once did anyone ever test my B12.   Based on all the years I complained about fatigue, nerological issues, burning feet....not one of them just added this simple check mark to my blood test.   It boggles my brain. 

 

Also, I seem to be one of these people that when my numbers are just barely out of range I get all the side affects.  My TPO was only 60 (should be <30) and TSH was only 2.95 when I was diagnosed and my B12 was only 192 and a minimum should be 200.   We are all very different and those numbers on the lab sheets do not fit every person.  

 

I encourage everyone to get your B12 checked if you have not done so already, I can't imagine how much better I will feel when we finally get my numbers in a nice place within the normal range.


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#21 gifree

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Posted 18 July 2013 - 07:21 PM

Thanks all for the feedback. I wish this wasn't all so confusing. Frankly, I felt a 1000% better before being diagnosed. It's as if switching to a gluten free diet started a downward cascade of autoimmune-associated conditions. My plan is to have a second food allergy panel and this time, follow it. I loosely followed the original results because my highly regarded GI doc totally dismissed the food allergy panel. However, at this point, I am not dismissing anything. I would also like to more aggressively pursue other possible endocrine-related conditions: diabetes and adrenal function (addisons, etc). I mention these two areas because:

 

A: I have had extreme brain fog, feeling both extremely fatigued and wired at the same time, waking-up feeling exhausted (no matter how much sleep I get), extreme thirst, excessive urination, etc,

B: I have had elevated blood glucose levels for a while (100 - 108) and an elevated ACTH (70.3); plenty of other labs outside the range, in the bottom quartile or upper quartile too.

 

The symptoms are very disturbing and have made it impossible for me to work a full-time job. It's been a long slide since 2010. I need to figure out what the heck is going on and do so quickly! Maybe consulting an alternative/integrative medicine doctor will help?

 

Any and all suggestions welcome.


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#22 Gemini

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Posted 19 July 2013 - 11:48 AM

I think you definitley need to look into adrenal fatigue and diabetes, with those symptoms you are having.  Sometimes, when we go gluten-free, other things surface because the symptoms are no longer hidden by the Celiac.  I had no idea I had a problem with dairy until I went gluten-free because the symptoms are similar and by eliminating the gluten, the dairy problem became apparent.

 

Finding an alternative doctor may be of great help but you need to find a good one, obviously, and one who is a real MD.  Functional medicine doctors can be very good for problems such as yours.  They tend to do the whole body thing while mainstream docs just look at each organ separately and think they are not connected.  :rolleyes:   I know this is frustrating but even when you were eating gluten, damage was being done, regardless of how "well" you felt.  You would have crashed at some point.

 

Good luck and I hope you can find a doctor who can help you!


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#23 1desperateladysaved

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Posted 20 July 2013 - 04:28 AM

I felt much better after avoiding foods that tested as having antibodies on my blood tests..  My toe fungus began to heal.  I got detox rashes, possibly yeast.  Maybe you should dig out those old papers and give it a whirl.  I had to bring in some unusual foods to substitute for old favorites. I had become intolerant to nearly everything I had been eating.  However, I found new vegetables, different meats, and had some 0 antibody foods that I could keep in my diet.  I also was allowed to eat any food that wasn't tested.  I tried to avoid foods  I had consumed frequently while sick, even if they were not tested.

 

I had the foggy, fatigue symptoms which you described.  My thyroid TSH was tested recently and is normal.  I am now feeling well, so I believe I did not have a thyroid issue.  It is certainly something to be considered as you are trying to heal. 

 

I did have an adrenal gland problem.  We knew this from information gleaned by taking ortho-static blood pressure and from extremely detailed nutritional tests.  These tests showed that I had nothing to make cortisol with when I had the test.  Cortisol is what your body needs to handle stress and is produced by the adrenal glands.  The doctor felt that my 30 years of celiac symptoms caused this depletion.  My Functional Medicine Nurse recommended taking an herbal supplement to support the adrenal glands.  Over a day or two I noticed that my body responded well to this and I began to feel rested.  I once took these supplements during the evening.  At 3 am I woke up with an adrenal rush.  I discovered these herbs are powerful,  I didn't go back to sleep that night!  After that, I took them early in the day.  If you have a problem with your adrenals you might be helped by adrenal support herbs.  While I was foggy and fatigued I would drag myself up about 7am and fall into bed at 10pm.  Lately, I have been rising before the alarm and stretching  the day out at night.

 

B12 and Folic acid seemed really helpful in my recovery.  I also have taken an aggressive supplement program for several years.  Most of these years, I didn't know I had celiac disease.  I have  gotten into all natural and organic foods.

 

 I am just tossing out ideas to see if you will find some things yet to try.  Your treatment may be different from mine.  Have you tried eating only food produced in gluten free facilities?

 

I have learned to enjoy only the foods that are good for me.  Is that what you have done? This is a result of 30 desperate years of trying to fight celiac with good food.  I learned more and more about careful nutrition and cut out all sweets.  I became really un-American diet wise for sure.  I even learned to eat black eyed peas!

 

So sorry, that you haven't yet got to the root of all your problems, or feel better yet. I am living proof that there is hope.  I haven't listed all of my ideas, yet, and I bet many reading this also have some.  I don't want you to give up, keep trying to find the light at the end of the tunnel.

 

Get Well,  * * *

D


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