View Full Version : Chronic Fatigue Syndrome & Fibromyalgia and its connection to Celiac's disease


Lebatron
10-26-11, 04:27 PM
For anyone that does not know this having undiagnosed Celiac's may(probably) explain these two issues. I suffered from both until I figured out I had Celiac's. Going Gluten-free has compleatly cured the fibro and while I still do have some fatigue issues they are going away as well. It's takes time for the villi to heal before you start getting more absorbsion out of you food. It's like starving even while you stuff your face full of food.
Go check out the Celiac's forum for more discussions from poeple who once had fibro and fatigue to see the relation. The fibro in your tendons and joints is due to your body having an alergic reaction to Gluten.

The fatigue and lack of vitimin absorbsion is due to villi damage. You will also learn from this forum that many have gluten problems but just don't know it. The science is there but the fmaily doctors are way behind in making the connections. In time they will order a test to check for Celiac's right away when patients comnplain of fibro and fatigue but currently they are not trained to do this first thing yet. In Europe Dr's have been routinely checking this problem at an early ege, but here in the US they never make the connection.

The problem is your 40+ year old Dr went to med school at a time when they tought Celiac's was super rare. Well they are leaning that it is quite common and therefore should be routinely checking for it by this point. But we are still a few years from that I fear. It will be a huge wake up call for the millions that have a Gluten intolerance to discover they had had this problem their whole life and that explains so many of their issues. ADD, IBS, CFS, fibro, rickets, itchy skin, failure to gain weight, ect.

This gut problem accounts for so much. There was a wise Dr who once said that all good/bad health starts in the gut. Sadly most Dr's are very poorly educated about nutrition. You would be better served in most cases to see a nutritionist/holistic medicine pratitioner than a regular family dr.

FYI check out mercola.com for the best source of health info out there. MedMD is a bad site. Its in bed with big pharma and that has been exposed many times. So don't use that site because of the conflict of interest there. It's primarily a front to sell more pills to the public. mercola.com is instead out to educate you about eating the right foods and how to overcome or prevent disease in the first place. Anyway sorry to get off topic but I thought it was important to steer you guys towards a good source for health info. Anyway, as I said look into Celiac's you may just discover that it is the root of your problems because Gluten intolerance is more common than traditional drs think.

Lunacie
10-26-11, 06:36 PM
For anyone that does not know this having undiagnosed Celiac's may(probably) explain these two issues. I suffered from both until I figured out I had Celiac's. Going Gluten-free has compleatly cured the fibro and while I still do have some fatigue issues they are going away as well.

It's takes time for the villi to heal before you start getting more absorbsion out of you food. It's like starving even while you stuff your face full of food. Go check out the Celiac's forum for more discussions from poeple who once had fibro and fatigue to see the relation.

The fibro in your tendons and joints is due to your body having an alergic reaction to Gluten. The fatigue and lack of vitimin absorbsion is due to villi damage. You will also learn from this forum that many have gluten problems but just don't know it. The science is there but the fmaily doctors are way behind in making the connections. In time they will order a test to check for Celiac's right away when patients comnplain of fibro and fatigue but currently they are not trained to do this first thing yet.

In Europe Dr's have been routinely checking this problem at an early ege, but here in the US they never make the connection. The problem is your 40+ year old Dr went to med school at a time when they tought Celiac's was super rare. Well they are leaning that it is quite common and therefore should be routinely checking for it by this point. But we are still a few years from that I fear.

It will be a huge wake up call for the millions that have a Gluten intolerance to discover they had had this problem their whole life and that explains so many of their issues. ADD, IBS, CFS, fibro, rickets, itchy skin, failure to gain weight, ect. This gut problem accounts for so much. There was a wise Dr who once said that all good/bad health starts in the gut.

Sadly most Dr's are very poorly educated about nutrition. You would be better served in most cases to see a nutritionist/holistic medicine pratitioner than a regular family dr. FYI check out mercola.com for the best source of health info out there. MedMD is a bad site. Its in bed with big pharma and that has been exposed many times. So don't use that site because of the conflict of interest there.

It's primarily a front to sell more pills to the public. mercola.com is instead out to educate you about eating the right foods and how to overcome or prevent disease in the first place. Anyway sorry to get off topic but I thought it was important to steer you guys towards a good source for health info. Anyway, as I said look into Celiac's you may just discover that it is the root of your problems because Gluten intolerance is more common than traditional drs think.

I have a friend who has Celiacs, Fibro, CFS, and Chemical Injury Illness.
She's been gluten free for years and still has the other issues. She began
the Marshall Protocol but I haven't heard whether that helped with the
other issues. But going gluten free didn't seem to make much difference
for her.

PS - please add paragraph breaks (blank lines) to those big blocks of text
so they're easier to read. Thanks.

radiohead
10-26-11, 08:04 PM
My daughter went 10 years before being diagnosed with coeliac disease and i have had stomach pain all my life till i realised i was wheat intolerant feel way better for givin it up.I can tolerate crusty bakery bread way better than shop bought bread think thats down to what they use to bulk it up and make soft bouncy fresh for longer etc... Definately not enough awareness out there by GPs my daughter was told she had IBS but even so one would have thought that an educated gp would have realised that something must have been irritating the bowel!!!So many people have IBS and I think it all down to food allergies caused by the pesticides sprayed on our food

radiohead
10-26-11, 08:17 PM
Also the way Coeliac disease was described when i read about it on the internet was the worse case scenario of children not thriving vomiting and severely bloated stomachs. It is worth noting that like a lot of things there is a spectrum of severity which means you may have milder symptoms but still have the illness that is why so many people are so late in getting diagnosed

ryan4745
02-03-12, 10:24 AM
I have a friend who has Celiacs, Fibro, CFS, and Chemical Injury Illness.
She's been gluten free for years and still has the other issues. She began
the Marshall Protocol but I haven't heard whether that helped with the
other issues. But going gluten free didn't seem to make much difference
for her.

PS - please add paragraph breaks (blank lines) to those big blocks of text
so they're easier to read. Thanks.

My story is is remarkably similar to this. I have Celiac Disease (diagnosed at age 20, when i was very ill and exhausted), and gluten free diet helped a lot --but not enough. I continued having CFS symptoms even after villi fully healed (confirmed via biopsy), and many other common remedies including vitamins & healthful, hypoallergenic diet were implemented.
At that time I started the Marshall protocol, assuming the CFS would be aided by antibiotics, which it always had in the past (when i had taken them for acne, for example).
The Marshall protocol helped some, but not enough, and it was difficult to tolerate-- i was already at such a low level of functioning there was no way i could be a hermit for several more years like that. It was clear something else was wrong.
I then began full treatment for CFS with my doctor, using a lot of tietelbaum's "fatigued to fantastic" book as guidance. Off and on through all of this, I was on adderall for adhd-pi (since age 18, well before the celiac dx). The adderall, too, was not enough (nor any of the other adhd or depression meds).
The CFS treatment, (SHINE protocol is what he calls it-- Restoring Sleep, Hormonal, Infections, Nutrition, & Exercise). Every piece of it has helped in some important way, but the most dramatic impact was **thyroid**.
Apparently, thyroid issues are somewhat common in celiacs too! After trials with many thyroid meds, I settled with my dr on cytomel 50mcg daily, which made an enormous impact on my fatigue and cognition- brain fog reduced a lot.
Then, testosterone was the next piece. Also huge impact for me.
And so on.
Although its been a lot of focused effort and cost me a lot of money, I am greatful to feel relatively 'normal' these days, probably at a 8 out of 10 on average..whereas I was at a 4/10 before.

Waterbegone
06-02-12, 01:37 PM
Hi,
Your story is a lot like mine! I'm gluten free andhypothyroid as well. I've been on adderall for idiopathic edema, cfs, fibrom. I now take cytomel 15 mcg 2x s a day, 100 mcg synthroid. 5 yrs I was on t3 only and had no pain and lost weight. My new dr says I need more adderall not t3. First 6 months on adderall and adding t4 synthrooid felt good,lost weight but now I gained 20 lbs and have horrible joint pain. I've raise adderall to 60 mg but no help. I think it's thyroid and I only need cytomel. Did that book help you with cytomel? Do u take it all at once? Are u on t4? Did u lose weight on cytomel only? Did u have pain? Are u still on adderall? Any help, ideas would be great!

CheekyMonkey
06-02-12, 03:49 PM
I was diagnosed at 24 and am 28 now. I was extremely sick before getting diagnosed and going gluten free made all the difference. However, I was still getting sick occassionally and then my gallbladder was having attacks. I also had to cut out dairy and stick to a low fat diet. I'm doing so much better now.

I also started taking probiotics, digestive enzymes, l-glutamate (to heal intestines/gallbladder), and milk thistle. Those help a lot too.

Drewbacca
06-03-12, 12:29 AM
Apparently, thyroid issues are somewhat common in celiacs too! After trials with many thyroid meds, I settled with my dr on cytomel 50mcg daily, which made an enormous impact on my fatigue and cognition- brain fog reduced a lot.
Then, testosterone was the next piece. Also huge impact for me.
And so on.

Did the blood tests actually show a thyroid problem, or did you just have an experimental doctor willing to play around with meds?

ryan4745
06-03-12, 11:10 PM
Hi,
Your story is a lot like mine! I'm gluten free andhypothyroid as well. I've been on adderall for idiopathic edema, cfs, fibrom. I now take cytomel 15 mcg 2x s a day, 100 mcg synthroid. 5 yrs I was on t3 only and had no pain and lost weight. My new dr says I need more adderall not t3. First 6 months on adderall and adding t4 synthrooid felt good,lost weight but now I gained 20 lbs and have horrible joint pain. I've raise adderall to 60 mg but no help. I think it's thyroid and I only need cytomel. Did that book help you with cytomel? Do u take it all at once? Are u on t4? Did u lose weight on cytomel only? Did u have pain? Are u still on adderall? Any help, ideas would be great! Fatigued to Fantastic did give some insight with thyroid and cytomel. Another book, which is cited in FTF, is "The Metabolic Treatment of Fibromyalgia" by the late John C Lowe. He also has a website www.drlowe.com (http://www.drlowe.com). His point is that high dose cytomel is often the key to resolving fibro. Where measurement of tissue metabolic state is more important than labs.

I have taken cytomel in all sorts of different dosing regimens and doses. Currently, splitting it so i'm taking 25mcg in am, and 25mcg before bed (making sure not to take iron or calcium supplements or foods within 6 hours). It worked pretty well for a while when i was taking all at once, but currently this half and half regimen feels more stable for me. Although who really knows, I suspect the all at once dosing, for me, was doing something negative perhaps spiking shbg (sex hormone binding globulin) and thus decreasing the amount of free-testosterone, combined with just a bigger surge in active t3 in the body -- and i experienced a bit of mental slowness, poor memory, weakness, mild confusion -- from about 2 hrs after to 5 hour after dosing, but then would have great clarity 6-15 hours after dosing.

I do not take any T4. I did try armour in the past, but it was not working, since t3 was really the only thing that was helping me. Then i tried some OTC dessicated products, 2 or 3 different ones. but that caused issues, extremely dry skin and eyes, etc. T3 is the only thing that has worked.

I do still take adderall, but lately, i've been taking less of it. 10-15 mg in am, then 7.5 mg every 3-4 hrs, total = 30-45mg. I do b12 shots 3-6 times per week (500-2000mcg methyl b12 per time, subQ). This makes it so i need less adderall, and in fact they seem to interact somehow so if i take normal adderall dose the day after a 2000mcg b12 shot, I feel worse than no adderall at all. The b12 does something very positive to cognition.

For you, it seems that if you felt better on cytomel alone in the past, its worth trying that again. It has definitely resolved a lot of the problems i've had. Luckily, I haven't had any weight issues before cytomel or after. It didn't cause me to loose any weight, but has kept my body fat very low.

If there's any way you can try higher cytomel, seems thats your next step?

ryan4745
06-03-12, 11:23 PM
Did the blood tests actually show a thyroid problem, or did you just have an experimental doctor willing to play around with meds?

Blood tests did not show any thyroid problem. After trying many many other things, and all of the signs and symptoms pointing to thyroid issues, we tried it on a trial basis. The improvement was dramatic. My current blood levels of t3 are sky high, dramatically out of range. Tsh is < 0.01. However, as dr John C Lowe (drlowe.com) writes in scientific detail, there is likely some kind of 'peripheral tissue resistance' to thyroid hormone that requires higher doses like this. Although my blood tests suggest t3 is too high, my tissue metabolic status indicates thyroid levels are just right.

Drewbacca
06-04-12, 12:14 AM
Blood tests did not show any thyroid problem...

I'm hearing that response more often than I feel comfortable with. I don't know enough to declare that the current tests are inadequate, but it sure feels that way. Thus, why I asked. Thank you for responding.

I'm getting to a point where I'm hoping to find a doctor that is willing to experiment or try some different tests. Maybe I'll start reviewing the current system in the academic journals and see if I can find any criticism of the blood test from a reputable source... It would be nice to have something that we could all print out and show to our doctor.

I'll look into doc Lowe. Thanks for the suggestion.
Your links are broken though, perhaps this is the same thing? http://www.stopthethyroidmadness.com/category/dr-john-c-lowe/

CheekyMonkey
06-04-12, 12:23 AM
I'm hearing that response more often than I feel comfortable with. I don't know enough to declare that the current tests are inadequate, but it sure feels that way. Thus, why I asked. Thank you for responding.

I'm getting to a point where I'm hoping to find a doctor that is willing to experiment or try some different tests. Maybe I'll start reviewing the current system in the academic journals and see if I can find any criticism of the blood test from a reputable source... It would be nice to have something that we could all print out and show to our doctor.

I'll look into doc Lowe. Thanks for the suggestion.
Your links are broken though, perhaps this is the same thing? http://www.stopthethyroidmadness.com/category/dr-john-c-lowe/


(I'm celiac) My GI thought I was probably having hypothyroid issues, but my blood test came back negative. Who knows?!

Drewbacca
06-04-12, 02:34 PM
(I'm celiac) My GI thought I was probably having hypothyroid issues, but my blood test came back negative. Who knows?!

If the gluten-free diet works, then I think you already have your answer... unless the celiacs is somehow contributing to thyroid disfunction.

Unfortunately for me, the no gluten diet didn't seem to help. I'm currently reevaluating my diet. My next experiment is to reduce sugar/carbs and watch for blood spikes. I've already started a food diary, but I'm going to add frequent blood-glucose level checks to my data and start to look for patterns.

Waterbegone
06-04-12, 03:33 PM
Blood tests did not show any thyroid problem. After trying many many other things, and all of the signs and symptoms pointing to thyroid issues, we tried it on a trial basis. The improvement was dramatic. My current blood levels of t3 are sky high, dramatically out of range. Tsh is < 0.01. However, as dr John C Lowe (drlowe.com) writes in scientific detail, there is likely some kind of 'peripheral tissue resistance' to thyroid hormone that requires higher doses like this. Although my blood tests suggest t3 is too high, my tissue metabolic status indicates thyroid levels are just right.

Do you have high pulse when you take the cytomel andd adderall together? My pulse since adding adderall is over 105 when standing.

Waterbegone
06-04-12, 03:44 PM
Do you find your fibro, joint pain are gone on the cytomel? Does your dr let you use cytomel only? I wish I could find a doctor that uses dr. Lowes treatment! Yes, I am going to dropthe t4 and do cytomel only tomorrow. In the past, when I used t3 only it was slow release compounded from dr. Wilson temperature syndrome but dr Lowe doesn't suggest slow release so I'll try the cytomel.

I am on adderall for idiopathic edema from my doctor that has done alot of research on this. The first 8 months the adderall caused weight loss (fluid loss) but 3 months into it i started having terrible joint pain that has gotten worse as I increase the adderall. It's like fibro pain. Now, after 2 years on the adderall I have gained 20 lbs! Also, my aldosterone is really - sodium and fluid retention hormone. Since, I have never weighed this much before and never had high aldosterone, joint pain, or high pulse I am thinking the adderall has messed my system up. However, I can't find anyone that's experienced weight gain on adderall or amphetamines! I am wondering if it's messed with my electrolytes - potassium , sodium, etc and in some way the dehydration from adderall is raising sodium, aldosterone and lowering potassium and magnesium.

CheekyMonkey
06-04-12, 07:19 PM
If the gluten-free diet works, then I think you already have your answer... unless the celiacs is somehow contributing to thyroid disfunction.

Unfortunately for me, the no gluten diet didn't seem to help. I'm currently reevaluating my diet. My next experiment is to reduce sugar/carbs and watch for blood spikes. I've already started a food diary, but I'm going to add frequent blood-glucose level checks to my data and start to look for patterns.

Celiacs have a higher chance for having hypothyroidism.

jiffyPOP
06-04-12, 08:41 PM
Unfortunately for me, the no gluten diet didn't seem to help. I'm currently reevaluating my diet....

drewbacca,
How long did you do gluten free diet? I keep making mistakes and consuming gluten :o, however I feel great when I do well on the diet for as short as 7 straight days. But I read it can take 6-9 months to feel the real benefits of the diet.

I am unorganized in my grocery shopping. I am REALLY trying to cut out gluten but making mistakes when out enjoying my social life :doh:. I don't want to be 'that guy'. I need to get over it and stop all gluten for 6-9 months.

CheekyMonkey
06-04-12, 11:18 PM
drewbacca,
How long did you do gluten free diet? I keep making mistakes and consuming gluten :o, however I feel great when I do well on the diet for as short as 7 straight days. But I read it can take 6-9 months to feel the real benefits of the diet.

I am unorganized in my grocery shopping. I am REALLY trying to cut out gluten but making mistakes when out enjoying my social life :doh:. I don't want to be 'that guy'. I need to get over it and stop all gluten for 6-9 months.

Once you do it for a while it is pretty easy. Maybe I'll start a gluten free thread where people can put their recipes, ideas, insights.

Drewbacca
06-05-12, 12:33 AM
drewbacca,
How long did you do gluten free diet? I keep making mistakes and consuming gluten :o, however I feel great when I do well on the diet for as short as 7 straight days. But I read it can take 6-9 months to feel the real benefits of the diet.

I am unorganized in my grocery shopping. I am REALLY trying to cut out gluten but making mistakes when out enjoying my social life :doh:. I don't want to be 'that guy'. I need to get over it and stop all gluten for 6-9 months.

My diet lasted a little over one year. I was gluten/gliadin free, dairy/casein/egg free as well as a handful of other things.

I won't lie it's a pain. Depending on where you live, it may be difficult or it might be easy. Urban areas tend to have safe restaurants that you can visit.
Once you figure out what works, find a few recipes, etc. it's not too bad.
You can get creative. I had put together a coconut based white sauce to use with mixed grain noodles and make a beef stroganoff, and it was good enough that company would eat seconds. ;)

CheekyMonkey
06-05-12, 02:01 AM
My diet lasted a little over one year. I was gluten/gliadin free, dairy/casein/egg free as well as a handful of other things.

I won't lie it's a pain. Depending on where you live, it may be difficult or it might be easy. Urban areas tend to have safe restaurants that you can visit.
Once you figure out what works, find a few recipes, etc. it's not too bad.
You can get creative. I had put together a coconut based white sauce to use with mixed grain noodles and make a beef stroganoff, and it was good enough that company would eat seconds. ;)

It isn't so bad, but I definitely wouldn't volunteer myself for it. :lol:

ryan4745
06-18-12, 07:24 AM
I'm hearing that response more often than I feel comfortable with. I don't know enough to declare that the current tests are inadequate, but it sure feels that way. Thus, why I asked. Thank you for responding.

I'm getting to a point where I'm hoping to find a doctor that is willing to experiment or try some different tests. Maybe I'll start reviewing the current system in the academic journals and see if I can find any criticism of the blood test from a reputable source... It would be nice to have something that we could all print out and show to our doctor.

I'll look into doc Lowe. Thanks for the suggestion.
Your links are broken though, perhaps this is the same thing? http://www.stopthethyroidmadness.com/category/dr-john-c-lowe/

Wow, yes the link to his site is broken because sadly, he passed away just recently. The link you provided from stopthethyroidmadness should be a good resource. STTM integrates some of his beliefs, and is a good resource for thyroid on its own, so you should be able to refer to that.
Its really unfortunate to hear he passed away. I followed his site for many years, and used his book to educate myself on the topic ("The Metabolic Treatment of Fibromyalgia").

ryan4745
06-18-12, 07:28 AM
Do you have high pulse when you take the cytomel andd adderall together? My pulse since adding adderall is over 105 when standing.

For the most part, I do not have a high pulse being on both of them. Resting HR with both of them is about 70-80 bpm. Sometimes it can get a bit high like 100-120, but thats not when resting-- only when very stressed/ hurried or walking fast or whatever.
When I tried on my own to increase the cyt dose slowly up to 62.5, 75, 85mcg/day-- it did increase to 100+bpm resting, and for me that was a bit high esp with adderall. So that helped titrate the dose.

tudorose
06-18-12, 08:54 AM
I have RRV which presents like CFS and Fibro (and can be a precursor to CFS). I find that stress is the biggest issue.

Diet wise it's not just gluten but dairy for me. If I eat dairy I end up in a lot of pain in the joints and muscles and lymph glands.

Waterbegone
06-18-12, 08:58 AM
For the most part, I do not have a high pulse being on both of them. Resting HR with both of them is about 70-80 bpm. Sometimes it can get a bit high like 100-120, but thats not when resting-- only when very stressed/ hurried or walking fast or whatever.
When I tried on my own to increase the cyt dose slowly up to 62.5, 75, 85mcg/day-- it did increase to 100+bpm resting, and for me that was a bit high esp with adderall. So that helped titrate the dose.

Good point my pulse is over 100-115 but I just had coffee and the meds just kicked in- I think mine has to do with not having enough electrolytes and sodium bc I sweat a lot, drink coffee and wine - I notice when I used electrolytes or add sea salt it drops down.

Over the last 3 days I've cut back the cytomel and yest and today didn't take any to see if my dr was right- he said I may not need t3 and it could be causing temporary hypert so I'm trying it and I am less bloated and not as stressed but pulse still super high...but I'm on. T4 as well

Drewbacca
06-26-12, 02:15 AM
I'm a bit skeptical regarding NDs and I haven't reviewed the cited sources...
But this link seemed related to this thread: http://www.vrp.com/stress/the-many-faces-of-serotonin-deficiency-linked-to-gi-disorders-depression-asthma-and-fibromyalgia

Lunacie
06-26-12, 10:45 AM
I'm a bit skeptical regarding NDs and I haven't reviewed the cited sources...
But this link seemed related to this thread: http://www.vrp.com/stress/the-many-faces-of-serotonin-deficiency-linked-to-gi-disorders-depression-asthma-and-fibromyalgia

I've been wondering for quite some time about the link between ADHD and
Migraine Disorder - this article says the link may be low levels of seratonin.

Looks like I got a double whammy genetically. My mom's family has a
history of ADHD and ASD, while my dad shared his genes for Migraines.

It looks like 5-HTP costs more than the generic zoloft I'm taking now, so I
don't know if I could afford to give the supplement a trial run.

Drewbacca
06-26-12, 11:28 AM
I've been wondering for quite some time about the link between ADHD and
Migraine Disorder - this article says the link may be low levels of seratonin.

Looks like I got a double whammy genetically. My mom's family has a
history of ADHD and ASD, while my dad shared his genes for Migraines.

It looks like 5-HTP costs more than the generic zoloft I'm taking now, so I
don't know if I could afford to give the supplement a trial run.

There's definitely a migraine-serotonin connection, I keep stumbling on that in the academic resources too. I was going to suggest that my brother try one of the supplements. He's the only one that suffers an outright migrane problem... most of my family only has a problem with red wine which probably isn't related to serotonin... but then, maybe it is. More stuff to research! LOL

http://www.achenet.org/resources/serotonin_and_headache/

After adjusting to my sertraline, I've noticed a significant decrease in my IBS symptoms. I now only seem to have a reaction when I consume dairy or get dehydrated.