15 replies to this topic

[joolsjewels]

Does anyone have CFS? What are your symptoms? Who long did it take for you to get diagnosed? What other health problems do you have?  Have you seen any improvement?

One by one, my dr is ruling out problems and adding minor things to my ever growing list. In researching CFS, it sounded eerily familiar. The symptoms are naerly word perfect.

Please share any experiences. I would surely appreciate it.

[burdee]

I do not have CFS, but I have an autoimmune condition, which is often misdiagnosed as CFS. Hashimoto's thyroiditis (hypothyroidism) often manifests in fatigue and depression. Doctors who are not familiar with symptoms of low thyroid function may overlook the possibility of Hashimoto's, which is highly correlated with gluten intolerance.

Have you had recent thyroid test panel, not just TSH, but also free t3, free t4 and TPOab (thyroid peroxidase antibodies)? If not, consider asking your doc for those tests.

[1desperateladysaved]

As I understand it, part of the defination of CFS is that you are pretty much bed bound. I wasn't that, but I decided, that I had Fatigue that was overwhelming me nearly all the time in a chronic fashion. My current guess it that my fatigue comes from not absorbing nutrients well. This perhaps caused my high blood pressure and strained heart and body.

My thyroid was normal just for comparison.

[joolsjewels]

I just had my thyroid tests done last week. They ran a full and complete set of tests. Everything was "normal". I am bed bound. For instance, its takes me hours just to work up the strength to take a bath. I just did that. Now i feel worse than before. I can not get off the couch and it will take hours before i can do anything again. My arms and head feel like lead weights.

[GottaSki]

I have not been diagnosed with CFS, but have been diagnosed with Fibromyalgia. The two are very similar. My research has found nothing that differs in the conditions other than CFS lists fatigue as main symptom and Fibro lists pain as the main symptom. Since both pain and fatigue are subjective I don't see the difference. I can tell you I've been horizontal for months at a time from fatigue.

I firmly believe that Fibromyalgia is caused from the lack of proper nutrients being absorbed in undiagnosed Celiac Disease. When the gut heals - health improves and symptoms disappear.

The fatigue in Celiac Disease can take a very long time to improve. For me, fatigue worsened over the first months post celiac diagnosis. I have had two separate periods of with very few symptoms over the past three years. The first was about six months where I felt pretty darn good. The second was for almost nine months where I felt excellent - better than I had in my ENTIRE life.

How long have you been gluten-free? If it has been some time without improvement, I suggest looking at other possible food intolerances. Do you have joint/muscle pain? Removing nightshades (tomato, potato (sweet potato is fine), peppers (except peppercorn) and eggplant can help reduce pain.

Big HUGS to you...not being able to pick yourself up and do what you normally are able to sucks

[GFinDC]

Sorry you aren't feeling well. Many people with untreated celiac have vitamin and mineral deficienices at first. Has your doctor tested you for them? A, B, D, K Iron, and magnesium?

[joolsjewels]

I do have fibromyalgia, but this is weakness rather than just pain. Other conditions include: pcos/infertility, sinus probs, migraines, high blood pressure, joint pain, dry eyes, photosensitivity, acid reflux, nights sweats and chills, swelling in my feet and pain without redness, endometriosis, low vit d, low iron, gluten intolerant, lactose intolerant, and msg hates me. My SED rate and ANA mildly elevate occasionally. I also have cognitive problems like seaching for the right word, even very simple words, the inability to spell correctlly (hence the title of the topic-i knew it was spelled wrong, but did not know how to correct it) , and i am unable to do simple mental math computations anymore. I have forgotten most of my times tables even though i have tried several times to rememorize them. My latest headaches are just constant rather than say a migraine which is slamming or pulsating. These do not go away no matter what i take..

[joolsjewels]

Oh, someone asked how long i have been Gluten-Free-3 1/2 yrs. I am very consistent about it. The only times i have been contaminiated are accidental. About different foods eggplant-the oil makes my stomach sick. I use to eat sweet potatos a lot, but now there is something about them i just do not like.

[GottaSki]

Goodness Gracious - I have many of the same symptoms - don't have infertility or sinus issues and my SED rate has never elevated (when tested) - ANA has often throughout my life. Have you seen Rheumatology to rule out Lupus and other AIs? Are you effected by heat/cold besides photosensitivity - like cold or warm/humid days or during exercise?

Have you tried removing other foods besides dairy and gluten? You might want to research "lectins" or "lectins + autoimmune". Researching those while horizontal led me to the complete elimination diet I completed last year. During the elimination I was healthier than ever in my life - almost all my symptoms improved or disappeared all together - I slept well (only seemed to need about 6 hours) and exercised for hours - was only restricted by my severe heat intolerance. I had a severe flare in March and ended up horizontal once again - I'm currently improving since I returned to my base/safe foods - mental fog has cleared, memory has returned and there are some days I have an hour or two of energy. I have been frustrated that I didn't improve more when I returned to my safe diet, but I remain hopeful for more improvement.

One very important thing is exercise. If you can only walk to another room in the house - then do it often. Eventually you'll be able to walk around the block and beyond. Don't overdo - but do move.

[CeliacAndCfsCrusader]

I was diagnosed with CFS at the age of 24. It took more than 6 months before I found a doctor that would verify "it wasn't in my head". Something I already knew.

I was young, buff and strong as an ox. Within days after coming down with something similar to Mono, I couldn't walk up a flight of stairs without sitting down.

You will find many, many people who can and will relate to your situation. Unfortunately, for me, I had to figure it out for myself.

Here's my two cents:

If you're not sleeping, this is paramount that you get this figured out. Your body cannot heal without proper sleep. I take 50 mg of Doxepin each night and I saw an immediate improvement in my sleep (I was no longer feeling "wired" while trying to sleep).

I made the mistake of "pushing myself" physically and thought I was invinceable. I should've dialed everything back immediately.

I was an "A" type personality, I learned to only worry/think about things that are truly important, not petty issues. I avoided stress and drama, it makes a world of difference. I became more selfish, because I had to be. It's ok, take care of yourself first.

I should point out this happened almost 25 years ago. I was very sick for about 2 years. I limited myself for another 2 or so. Everyone is different, trust your own instincts.

I would occasionally have "flare-ups", but since my Celiac diagnosis 5 years ago, I have had none. I can't draw a conclusive correlation between gluten and CFS, but I always felt it "was something chemical within me", as opposed to arthritis or something.

Good luck. I'd be happy to assist you in any way. Just ask.

[joolsjewels]

CeliacAndCfsCrusader,
Thanks for the info. I currently take ambien and feel like i have been beat up. I have had fibro for about 13 yrs, but it intensified a few years after having walking pnuemonia. Recently, the symptoms stepped up again. In the past year, i had two severe sinus infections ehich require strong antbiotics and steroids to clear up. I am wondering if it is b/c a few drs are stepping me down off some meds. Maybe taking those meds for so long had masked some of the symptoms. Idk.

I have a stress test set up for wed at 9:45am. I hope that the symptoms do show up so the drs see how i feel.

[mushroom]

I currently take ambien and feel like i have been beat up. I

Have you ever tried diazepam for sleep. I took it when I quit smoking, and I have gone back to taking it since celiac. Just 5mg at bedtime, totally non-addicting, and it works like a charm for me.

[joolsjewels]

My gp is waiting to change any of my meds until after my stress test and then another sleep study. But i will keep those meds in mind.

Gottaski, you asked about exercise- i was able to walk 4 mi everday until feb. All of a sudden my fingers turned blue. That night i woke up in the worst pain of my lfe and my feet were swollen. Since then, i can only wear flip flops due to swelling and pain. Drs have tested me for lupus, sjogren's, RA, etc. Nothing ever fits completly nor i do test positive.

[kittty]

Have you ever tried diazepam for sleep. I took it when I quit smoking, and I have gone back to taking it since celiac. Just 5mg at bedtime, totally non-addicting, and it works like a charm for me.

Diazepam does have a dependance warning on the label.

[mushroom]

Diazepam does have a dependance warning on the label.

But I believe that is for a maintenance/continuous dosage, not just once a day. I have forgotten to take diazepam and still slept (well, except for the night when I took it in low light light and it turned out to be lasix, not diazepam -- same size and color) The john and I were well acquainted that night.