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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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#1 gifree

 
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Posted 13 June 2013 - 01:02 PM

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

 

I was diagnosed with classic celiac disease 3-years ago and have felt progressively worse ever since. My symptoms prior to diagnosis were mostly neuro-related. I was reasonably fatigued most days, found it exceptionally difficult to focus on anything that didn't interest me, had anxiety and a somewhat sensitive stomach. I also had silent GERD. In comparison to today, I'd take that symptom profile any day of the week!

 

Now, most days are marred by bad brain fog, which sometimes blows off in the mid-afternoon or just sticks around all day. This has been exceptionally debilitating. I also am experiencing a level of fatigue unlike anything I ever experienced in the past, a much more sensitive stomach and inconsistent bowl movements. Sadly, these symptoms are consistent with a pre-diagnosis...not post-diagnosis.

 

I am somewhat at a loss. A recent follow-up endoscopy and colonoscopy provided no answers. The results indicated that my villi are healing and there were no mentioned signs of gastritis, crohns, ibs, gerd, etc. The only anomaly that I am currently managing is a sluggish thyroid, which my endocrinologist described as early onset hashimotos. I am currently taking tirosint, which I have been on for approximately a month. I also begrudgingly take achipex (ppi) for the gerd and Adderall for attention/energy. I would say the meds have provided some relief, but I have a long way to go before I can approximate anything resembling normalcy. I'd rather not be taking any meds, none of which I took prior to the celiac diagnosis.

 

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.

 

I'm not sure how long it takes for the full benefits of tirosint to kick-in, but I'd love it if these issues were mostly/all thyroid related. As for vitamin/mineral deficiencies, I take a daily multivitamin, plant-based enzymes with most meals and a near-daily regimen of probiotics. Recent blood tests indicated that I am extremely low in iron and also am not absorbing iron well, but because of my stomach/thyroid issues was discouraged from taking an iron supplement. I suspect that my gut still has a long way to go, is constantly inflamed for some reason and needs a buddy.

 

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

 

Thanks!

 

 


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#2 Gemini

 
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Posted 13 June 2013 - 01:55 PM

The fatigue and brain fog most certainly can be thyroid issues.....I have Hashi's myself.  Have you had a full thyroid panel done and if so, what where the thyroid antibody numbers?

Fatigue is unbelieveable with Hashi's.....it can be debilitating.

 

More importantly, are the meds you are currently on gluten free?


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#3 gifree

 
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Posted 13 June 2013 - 03:59 PM

Hi Gemini,

 

Thanks for the response. My thyroid #s were not horrible. My TSH has typically been between the low 2s and mid 4s. I know that's within the American range, but have read that for some, even a slight move can be troublesome. What finally inspired my endocrine to put me on tirosint was the TPO level, which I believe was 100, with the high end of the desired range in the low 30s; don't recall the T3 and T4, but suspect that they too were within the desired range.

 

The name brand meds above are all listed on the glutenfreedrugs site, but I'm not entirely sure about generic. Regardless, I am going to call the manufacturers and get confirmation straight from the horses mouth. Also, when I took that food allergen panel, I tested positive to corn; not sure how to entirely remove that from my diet, unless, I guess, I get some of the meds compounded. Think I need to go down that road?


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#4 cyclinglady

 
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Posted 13 June 2013 - 04:11 PM

The fatigue and brain fog most certainly can be thyroid issues.....I have Hashi's myself.  Have you had a full thyroid panel done and if so, what where the thyroid antibody numbers?

Fatigue is unbelieveable with Hashi's.....it can be debilitating.

 

More importantly, are the meds you are currently on gluten free?

Gemini, 

 

What's the importance of thyroid antibodies?  I thought they were just to determine Hashi's/Graves (autoimmune).  Mine are always well over 2,000 for over 15 years.  They've come down as low as 400, but always stayed high.   


  • 0
Non-functioning Gall bladder Removal Surgery 2005
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

#5 Gemini

 
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Posted 13 June 2013 - 04:29 PM

Hi Gemini,

 

Thanks for the response. My thyroid #s were not horrible. My TSH has typically been between the low 2s and mid 4s. I know that's within the American range, but have read that for some, even a slight move can be troublesome. What finally inspired my endocrine to put me on tirosint was the TPO level, which I believe was 100, with the high end of the desired range in the low 30s; don't recall the T3 and T4, but suspect that they too were within the desired range.

 

The name brand meds above are all listed on the glutenfreedrugs site, but I'm not entirely sure about generic. Regardless, I am going to call the manufacturers and get confirmation straight from the horses mouth. Also, when I took that food allergen panel, I tested positive to corn; not sure how to entirely remove that from my diet, unless, I guess, I get some of the meds compounded. Think I need to go down that road?

Your TSH seems to be swinging a bit if they go from low 2's to mid 4's.  That is common for Hashi's.  However.......the standards used by many American doctors are old.  The newer standard, which many functional medicine doctors use is anything over a 2.5 on the TSH is considered low thyroid and needs treatment. Mine, at diagnosis, was only a 7 and I could barely get out of bed to go to work and it caused a lot of additional brain fog, on top of the brain fog from Celiac. it was ugly. It is often referred to as subclinical thyroid disease.  Your numbers may seem fine but you have thyroid symptoms.  Mid 4's is too high for TSH.  The fact that it is swinging a bit will cause fatigue.

 

100 is not too bad for thyroid antibody but it is high and should be addressed.  I am not familiar with the medication they put you on so cannot comment on that.

Your T3 and T4 want to be in the upper ranges of normal range as many, including me, feel their best when these ranges are attained.

 

Do you have symptoms when you eat corn?  I know there are others here with a corn intolerance and many meds may have a corn component as a filler. You may want to consider compounding if it is a noticeable problem for you.  I guess that depends on how easy it is to find a good compounding pharmacy near you.

I have used compounded meds before and liked them.  

 

All this is a step by step process to feeling better. Most people never go this far and it's good of you to be thinking along these lines. Call the manufacturers and make sure you are not being glutened by your meds.  Generics are usually safe but you never know for sure until you find out.


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#6 Gemini

 
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Posted 13 June 2013 - 04:31 PM

I am not sure why my posts are being formatted like they are when I post....annoying!


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#7 cyclinglady

 
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Posted 13 June 2013 - 04:40 PM

I distinctly remember feeling the impact of taking Armour Thyroid back in 1997 for the first time.  Within three days I finally felt normal!  It was just what I needed to finally feel good after battling candida and food allergies.  After that, I was participating in Triathlons!

 

I think the fact that you didn't eliminate those foods that you tested high on and didn't follow the recommended rotation is what's doing you in!  

 

Despite being gluten-free for 10 weeks, I still have to address my food allergies that were diagnosed by my MD back in 1996.   They haven't gone away, but one can always hope!  I completely stopped eating those foods that I tested high on and rotated (4 day) those that I only only tested mildly to.  I also rotated the foods that I didn't have problems to prevent developing further allergies.  Took about 8 months to 1 year, but I calmed the "fire" (inflammation) down and was able to introduce some of those foods in tiny portions (e.g. eggs in baked goods only).  

 

I will not ever cheat on gluten, but when I get exposed to one of my bad foods, it's just like being gluten-ed.  I get fatigue, body aches and nasal congestion, etc.  

 

I'm low on iron too, but I'm taking 65 mg. a day, along with Vitamin C for better absorption.  The GI wanted me to take two tablets, but that's too much!  I'll work my way up to that if needed.  Being low on iron (ferritin levels) can really make you feel fatigued as well.  

 

Good luck!

 

P.S.  If I had to say which caused me the most fatigue it would be anemia, followed by my thyroid and then the allergies which is usually only temporary (two day recovery).  


  • 1
Non-functioning Gall bladder Removal Surgery 2005
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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#8 gifree

 
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Posted 13 June 2013 - 04:55 PM

I appreciate the encouragement. I wish I didn't have to continually educate myself; love the stories about folks who go on a gluten-free diet and voila...instant health!! As for me, the gluten-free diet immediately produced some rather nasty withdrawal symptoms...which I guess was a precursor to the rest of the health issues that followed. Also, I found some of the lab results you had inquired about.

 

T4: 1.12

 

and 

 

Iron Saturation: 11 (range 15 -  55)

Iron Serum: 28 (range 40 - 155)

PTH: 12 (15 - 65) This # has been low for a long time

 

among other results that are periodically outside the recommended range. I know that these #s may mean something or they may not.


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#9 gifree

 
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Posted 13 June 2013 - 05:01 PM

I distinctly remember feeling the impact of taking Armour Thyroid back in 1997 for the first time.  Within three days I finally felt normal!  It was just what I needed to finally feel good after battling candida and food allergies.  After that, I was participating in Triathlons!

 

I think the fact that you didn't eliminate those foods that you tested high on and didn't follow the recommended rotation is what's doing you in!  

 

Despite being gluten-free for 10 weeks, I still have to address my food allergies that were diagnosed by my MD back in 1996.   They haven't gone away, but one can always hope!  I completely stopped eating those foods that I tested high on and rotated (4 day) those that I only only tested mildly to.  I also rotated the foods that I didn't have problems to prevent developing further allergies.  Took about 8 months to 1 year, but I calmed the "fire" (inflammation) down and was able to introduce some of those foods in tiny portions (e.g. eggs in baked goods only).  

 

I will not ever cheat on gluten, but when I get exposed to one of my bad foods, it's just like being gluten-ed.  I get fatigue, body aches and nasal congestion, etc.  

 

I'm low on iron too, but I'm taking 65 mg. a day, along with Vitamin C for better absorption.  The GI wanted me to take two tablets, but that's too much!  I'll work my way up to that if needed.  Being low on iron (ferritin levels) can really make you feel fatigued as well.  

 

Good luck!

 

P.S.  If I had to say which caused me the most fatigue it would be anemia, followed by my thyroid and then the allergies which is usually only temporary (two day recovery).  

Interesting. So, you are taking an iron supplement. I guess it doesn't upset your stomach? I can't decide which sucks more, the fatigue, the stomach aches, the brain fog or...I'll just go with D: All of the Above!


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#10 Gemini

 
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Posted 13 June 2013 - 05:04 PM

Gemini, 

 

What's the importance of thyroid antibodies?  I thought they were just to determine Hashi's/Graves (autoimmune).  Mine are always well over 2,000 for over 15 years.  They've come down as low as 400, but always stayed high.   

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:


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#11 Gemini

 
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Posted 13 June 2013 - 05:11 PM

I'm low on iron too, but I'm taking 65 mg. a day, along with Vitamin C for better absorption.  The GI wanted me to take two tablets, but that's too much!  I'll work my way up to that if needed.  Being low on iron (ferritin levels) can really make you feel fatigued as well.  

 

 

Your thyroid plays a roll in the production of red blood cells so if your thyroid is not balanced, you can become anemic from that too.  

 

My cousin is a triathlete...she's 57 and kicks butt!  :)


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#12 Gemini

 
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Posted 13 June 2013 - 05:14 PM

I appreciate the encouragement. I wish I didn't have to continually educate myself; love the stories about folks who go on a gluten-free diet and voila...instant health!! As for me, the gluten-free diet immediately produced some rather nasty withdrawal symptoms...which I guess was a precursor to the rest of the health issues that followed. Also, I found some of the lab results you had inquired about.

 

T4: 1.12

 

and 

 

Iron Saturation: 11 (range 15 -  55)

Iron Serum: 28 (range 40 - 155)

PTH: 12 (15 - 65) This # has been low for a long time

 

among other results that are periodically outside the recommended range. I know that these #s may mean something or they may not.

What's the normal range given by the lab for your T4?


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#13 Gemini

 
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Posted 13 June 2013 - 05:16 PM

And here's another one just in case your head isn't spinning enough.....http://www.stoptheth...s.com/ferritin/

 

:)


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#14 cyclinglady

 
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Posted 13 June 2013 - 06:21 PM

Interesting. So, you are taking an iron supplement. I guess it doesn't upset your stomach? I can't decide which sucks more, the fatigue, the stomach aches, the brain fog or...I'll just go with D: All of the Above!

 

No it doesn't upset my stomach.  I think increasing my dosage would cause constipation (I'm borderline now).   My intestinal tract is already slow either from celiac disease or the Hashi's.  


  • 0
Non-functioning Gall bladder Removal Surgery 2005
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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#15 cyclinglady

 
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Posted 13 June 2013 - 06:26 PM

Your thyroid plays a roll in the production of red blood cells so if your thyroid is not balanced, you can become anemic from that too.  

 

My cousin is a triathlete...she's 57 and kicks butt!  :)

Hmmm.... I attributed my iron deficiency anemia to celiac disease and not to my Hashi's.  I do have another anemia -- Thalassemia.  It's genetic and can't do much about that so I've always been slightly or mildly anemic and can never get my hemoglobin levels in the normal range.  But the iron deficiency anemia really compounds things and when my hemoglobin really drops, I can't even talk without getting out-of-breath.  

 

 I'm going to do more research on thyroid and anemia.  


  • 0
Non-functioning Gall bladder Removal Surgery 2005
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





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