Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

gifree

Recommended Posts

gifree Apprentice

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!

 

 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gemini Experienced

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?

Link to comment
Share on other sites
gifree Apprentice

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?

Link to comment
Share on other sites
cyclinglady Grand Master

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.   

Link to comment
Share on other sites
Gemini Experienced

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.

Link to comment
Share on other sites
Gemini Experienced

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

Link to comment
Share on other sites
cyclinglady Grand Master

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).  

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gifree Apprentice

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.

Link to comment
Share on other sites
gifree Apprentice

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!

Link to comment
Share on other sites
Gemini Experienced

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.  Open Original Shared Link

 

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:

Link to comment
Share on other sites
Gemini Experienced

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!  :)

Link to comment
Share on other sites
Gemini Experienced

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?

Link to comment
Share on other sites
Gemini Experienced

And here's another one just in case your head isn't spinning enough.....Open Original Shared Link

 

:)

Link to comment
Share on other sites
cyclinglady Grand Master

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.  

Link to comment
Share on other sites
cyclinglady Grand Master

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.  

Link to comment
Share on other sites
cyclinglady Grand Master

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.  Open Original Shared Link

 

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!  

Link to comment
Share on other sites
  • 2 weeks later...
quincy Contributor

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.

Link to comment
Share on other sites
GFinDC Veteran

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.

Link to comment
Share on other sites
cyclinglady Grand Master

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.  

Link to comment
Share on other sites
Alwayssomething Contributor

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.

Link to comment
Share on other sites
  • 3 weeks later...
gifree Apprentice

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.

Link to comment
Share on other sites
Gemini Experienced

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!

Link to comment
Share on other sites
1desperateladysaved Proficient

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

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,463
    • Most Online (within 30 mins)
      7,748

    shadowblackwood
    Newest Member
    shadowblackwood
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @LimpToeTheTimeless Bone growth plates close in the late teens to early twenties, so it's doubtful you'll grow much taller, but you may start to bulk up in muscle.  Remember to boost your absorption of vitamins and minerals needed to build muscle by eating a nutritionally dense diet and supplementing with essential vitamins and minerals, especially Thiamine B1, to counteract the malabsorption caused by Celiac Disease. Keep us posted on your progress! References: The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/ A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/
    • B1rdL0ver
    • shadycharacter
      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
    • LimpToeTheTimeless
      I am M 21 and I diagnosed myself after a week of fasting and slowly reintroducing stuff in my diet except gluten, I had terrible eczema scars ,dandruff and brain fog, now I am free after 6 years of just pain, I am 6'2, will I grow taller? And since I am a gymnast will my muscles grow like quicker, cause before no matter how effort I put in I just couldn't. 
    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
×
×
  • Create New...