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3 Years On, Still Sick.
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You might have a look at this as well if you think it's your food.

http://www.plantpoisonsandrottenstuff.info/content/elimination-diet.aspx

That was the diet I did, I was an outpatient at Royal Prince Alfred Hospital. It took several months to complete, I was methodical in taking the notes and did it exactly as they said. I got a + for a preservative and some intolerance to amines. I've booked in to go back in November (the first appointment I could get) so I might find out something then. The dietitian there though did admit they are still finding out about these things, it's not yet a perfect science.

I do have some good news, I think the meds the dr gave me are doing something, (touch wood) that or I just happen to be having the best few days I've had this year, so much else I tried didn't work or had such bad side effects I couldn't take it. I'm not pain free but at the moment I only have the result of an Evil Kenevil lifestyle type pain, not the can't describe it, being ground into a pulp, legs in a centrifuge, frozen solid, sure I must have been exhausted from birth because I can't remember never feeling this awful, all over mind splitting headache feeling that words don't go far enough to describe. The closest I've come to feeling that way was waking up in pain after an operation, it's that kind of pain. I think it might be some type of neuralgic pain (since that's the treatment it's responding to) I didn't know such a thing existed.

You know it took me this long to think it might have been pain that was making my hands and legs shake, my whole being totally gutted after just a few hours of activity, sabotaging my cognition and making me snappy? It wasn't till I spoke to someone from chronic pain on a hunch that it started to make sense. A lot of it's been building below my level of consciousness and I've been so exhausted I struggle to think straight, I feel like a bit the frog in the boiling pot. If this treatment works it was pain causing the fatigue, I'm yet to test it to see if it has improved my number of functioning hours. I'm at least feeling better enough to be able to remember what I was like before all this.

What causes neuralgic type pain? Is it going to get worse? My biggest fear is either they find out and it's too late/untreatable or they won't find out and I'll be stuck without closure not knowing what will happen next. I still have a horrible feeling it's to do with not being diagnosed early enough.

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It doesn't sound like it couldn't possibly get worse! I'm really glad to hear the TCA is helping.

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Seems like I've read that the B vitamins can help with nerve health. b-21 etc..

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I spoke too soon on the TCA, it's stopped working (seems all it did was make me sleep better and I lost that effect once I started to get used to it), I'm on codeine to hold me over till I see the doc next week. My pain's started getting worse, I'm back to being cold intolerant, my ears are ringing really loud, my eyes are so dry the inner corners are sunken and when I wake up I have to flood them with drops or I can't open them, when I do they're bloodshot. The pins and needles and numbness are back but now total numbness and in my arms and legs as well as feet and fingers, today I had to run my thumb under hot water because I couldn't get feeling back into it, when I finally did I wished I hadn't, it felt like I'd sliced it open. My gums have been rapidly receding too (no bleeding, redness etc and no gum disease, I spent so much on orthodontists I'm obsessive about maintaining them) I do not want to lose my teeth. Everything's coming apart.

Is it possible I could have osteomalacia? I have osteoporosis and my symptoms are consistent. I have had low D before but I'm sure I was tested this time along with B, blood count etc, I'm beginning to think I need to find a new lab to go to for my bloods.

Has anyone been on any kind of intensive nutrition therapy, mega doses of nutrients/vitamins or something similar? I'm considering trying something like that, if not for an undiagnosed deficiency then at least to improve my immunity. I find it hard to believe I could fix 18 years of malabsorption with the over the counter one a day supplement I was recommended and I've got to do something about this while I can still look after myself.

Someone mentioned something in an earlier post about they got more numbness/tingling etc after quitting smoking? I just remembered today the even though smoking constricts blood vessels (theoretically causing it/making it worse), nicotine is also a stimulant so that might have something to do with it (I can think of less harmful stimulants I'd rather use than go back to smoking though).

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If your not taking a good for sure gluten free megavitamin you should be. I take a vitamin by Country Life and they are a reliable gluten-free company. Be sure to read the whole label on vitamins as some will say gluten free but contain wheat and barley grass and you don't want those. You also may still need supplementing with vitamin D. You should also be taking a sublingual B12 even if your levels appear normal it may help you a great deal.

You mentioned in a previous post that you still consume distilled gluten grains but they are labeled gluten-free. I would stop that as distilled gluten grains may be considered gluten free but a very few of us, myself included, react to them. They really flare my neuro symptoms a lot. Don't know if that is the case with you but it is worth a shot to give them up for a bit.

I am sorry the TCA hasn't helped, they didn't help me at all either.

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I spoke too soon on the TCA, it's stopped working (seems all it did was make me sleep better and I lost that effect once I started to get used to it), I'm on codeine to hold me over till I see the doc next week. My pain's started getting worse, I'm back to being cold intolerant, my ears are ringing really loud, my eyes are so dry the inner corners are sunken and when I wake up I have to flood them with drops or I can't open them, when I do they're bloodshot. The pins and needles and numbness are back but now total numbness and in my arms and legs as well as feet and fingers, today I had to run my thumb under hot water because I couldn't get feeling back into it, when I finally did I wished I hadn't, it felt like I'd sliced it open. My gums have been rapidly receding too (no bleeding, redness etc and no gum disease, I spent so much on orthodontists I'm obsessive about maintaining them) I do not want to lose my teeth. Everything's coming apart.

Is it possible I could have osteomalacia? I have osteoporosis and my symptoms are consistent. I have had low D before but I'm sure I was tested this time along with B, blood count etc, I'm beginning to think I need to find a new lab to go to for my bloods.

Has anyone been on any kind of intensive nutrition therapy, mega doses of nutrients/vitamins or something similar? I'm considering trying something like that, if not for an undiagnosed deficiency then at least to improve my immunity. I find it hard to believe I could fix 18 years of malabsorption with the over the counter one a day supplement I was recommended and I've got to do something about this while I can still look after myself.

Someone mentioned something in an earlier post about they got more numbness/tingling etc after quitting smoking? I just remembered today the even though smoking constricts blood vessels (theoretically causing it/making it worse), nicotine is also a stimulant so that might have something to do with it (I can think of less harmful stimulants I'd rather use than go back to smoking though).

Your dry mouth and eyes made me think of Sjogren's syndrome. Have you looked into it?

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Sjogren's syndrome did cross my mind, could dry mouth be what's causing the gum recession? Apparently Sjogren's can also attack other parts of the body too but I haven't found much online that goes into that to see if my symptoms are similar. I've been getting chest pain and heart disturbances too but normal resting ECG, low BP, cholesterol etc. Low absorption though is going to give atypical results for heart problems unless they're looking at it from the perspective of starvation.

I don't know how I can be quality low calorie, gaining weight, taking the specialist recommended supplements and starving all at the same time, something is off and I'm definitely gluten-free. I was thinking along the lines of a mega dose vitamin injectable regime or IV nutrients to get my system back on track. When I took over the counter calcium after my osteoporosis diagnosis it didn't show in my bloods and came up in my urine instead, so straight through. My D went up with supplement but maybe it wasn't the right kind of D and maybe not enough. There is a risk of shock if it is malnutrition and I go taking mega doses and a risk of toxicity if I don't need them so I'm at a bit of a loss as to how I'm going to get that sorted. Given the aging population and the number of absorption and eating disorders around surely there must be a clinic or something somewhere for treating people who have been severely malnourished.

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Check out the Lyme Disease thread in the leaky gut forum and see if any of that sounds familiar.

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Well the official line is that Australian ticks don't carry Lyme disease, but here's a local article http://www.portnews.com.au/news/local/news/general/diagnosis-positive-tick-disease-is-here/1944198.aspx if it isn't here yet I'm sure it's only a matter of time.

I don't think it's that though, considering 2 gastrointerologists and multiple GPs missed coeliac for 18 years when in hindsight it was blindingly obvious I had it (anemia, electrolyte disturbances, wasting, classic toilet habits with excruciating pain, osteoporosis, vitamin deficiency and a + genotype, but apparently "it's VERY rare" :blink: ) I think given my history and the shoddy public health system here an autoimmune and/or complications is more likely and they are again missing the obvious. Problem is the symptoms are so common to a lot of things (and a lot of things there aren't definitive tests for) it's probably going to end up a process of elimination that drags on for years which I'm not at all happy about. No help most of my tests keep coming back clean while my health just keeps getting worse. You know I really would not be surprised if my GP's first instinct was right, if later I have another attack, they do a more comprehensive workup and it does turn out to be MS like he thought it was, I've heard that happens a lot.

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Yes, Ohio's ticks don't have Lyme either. That's basically the party-line almost everywhere. Many, many MS patients have Lyme as an underlying cause. You are right, any systemic illness can look similar. In my Lyme doc's differential diagnosis, he even tests for celiac disease because the two can be so similar. In fact, at first they thought I had celiac and the doctor was shocked that I did not. I went three more years before I got a Lyme Diagnosis and was bedridden by then.

I'm not saying you have it, I just wouldn't rule it out without looking into it first.

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What's the treatment for Lyme? I've already had several kinds of antibiotics for various other things (keflex, flagyl, doxycyline, and trimethoprin) and multiple courses including long term low doses. This started after I got out of hospital when I was on trimethoprin, the first symptoms I had sound like viral encephalitis before it suddenly turned into what I have now.

At least one thing's in my favour, as well as the symptoms of a lot of the diseases/disorders being similar the treatments for a lot of them are also very similar so as long as they're in the right ballpark I should end up getting the right treatment, eventually. My GP has taken a very conservative approach in that respect and I've had a very conservative response to it, I've had to resort to over the counter pain relief so I hope he starts me on something soon before he ends up treating me for the complications of taking too many of them. I already went through the heartburn business with ibuprofen.

Does anyone know anything about selective igA deficiency? I read something about it causing false negatives on the antibody test and predisposing people to infections and autoimmunes.

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Somehow drs always manage to make me feel like a criminal pleading my innocence.

That description is absolutely PRICELESS--and so true for so many of us!

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Up Late, When you say your Thyroid is fine - do you have the results ? Do you know what thyroid tests were done? There are several but many Drs only test TSH and FT4.

Have you had B12 checked? You may need injections. The B12 injections are the only thing that works for me. Sublinguals do not work. If you have this problem then you will have symptoms of MS... nerve zaps, tingles in feet, memory problems, fatigue etc Go to the forum here http://www.pernicious-anaemia-society.org/ And remember that Neo B12 injections are available in Australia without a prescription.

You have low Vit D. Have you considered Parathyroidism ? What are your calcium levels like? http://parathyroid.com/low-vitamin-d.htm Symptoms http://parathyroid.com/parathyroid-symptoms.htm

Remember not one result but several - and look for a trend. It is NEVER normal to have an abnormal calcium level.

Perhaps you need FODMAP diet as well as Coeliac? Have you consulted a FODMAP trained dietician and been tested for Lactose and Fructose malabsorption?

Hope some of this helps

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What's the treatment for Lyme? I've already had several kinds of antibiotics for various other things (keflex, flagyl, doxycyline, and trimethoprin) and multiple courses including long term low doses. This started after I got out of hospital when I was on trimethoprin, the first symptoms I had sound like viral encephalitis before it suddenly turned into what I have now.

Long term antibiotics. It took me three years to get better. Did you see any changes on antibiotics? I mean either good or bad .... some people just start feeling better slowly, others have herxheimer reactions where they feel worse before they feel better.

I think most, if not all, of us with chronic health problems have several issues that are wrong - parasites, bacteria, fungus, hormonal, etc. All these other things take advantage of the fact that our health is compromised.

Bacterial overgrowth in the intestines of the bad kind of bacteria can also wreak havoc and cause systematic symptoms. I had klebsiella and citrobacter along with horrible parasites. It took me years to fix my gut issues of those problems. Low stomach acid also makes it hard to digest food. I still have to supplement HCL on occasion.

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I go back to the GP tomorrow. I expect the next referral will be to a rhumatologist who'll likely check my thyroid again, I'm pretty sure my GP didn't do T3. B and parathyroid were fine. Could my ovaries have anything to do with it? My free testosterone is slightly high (cholesterol, BP, estrogen and progesterone normal) I've had problems with cysts before but told not PCOS. It wouldn't explain the neuro symptoms but might account for some of the other ones.

I didn't notice much of a difference either way with the antibiotics. I had them for over a year so my GP is trying to avoid having me on them again, I've already had repeated infections. I'd need a culture for specific bacteria to know what ones to take, as far as the insect borne illnesses go Ross river fever would be a more likely culprit than Lyme, it's a public health warning kind of local, mosquitoes for some reason think I'm more tasty that everyone else in a 10 mile radius, my cousin had it and I was living in an area when it had an outbreak. I didn't have symptoms but I've had glandular fever too and didn't have symptoms with that either. I've been chronically sick for so long when I do get an infection I barely notice if that's any kind of measure of how much trouble my general health has been. Problem with Drs here too is you have to be 1/2 dead before they find anything wrong with you, by that stage the last thing I feel like doing is dealing with Drs.

I'm definitely getting opportunistic infections, thing is I'm resting, taking vitamins and eating properly so there's really nothing else I can do about it, all it takes is a little stress and I crash. I thought selective igA deficiency might be behind it, I don't know if I have that though.

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I go back to the GP tomorrow. I expect the next referral will be to a rhumatologist who'll likely check my thyroid again, I'm pretty sure my GP didn't do T3. B and parathyroid were fine. Could my ovaries have anything to do with it? My free testosterone is slightly high (cholesterol, BP, estrogen and progesterone normal) I've had problems with cysts before but told not PCOS. It wouldn't explain the neuro symptoms but might account for some of the other ones.

I didn't notice much of a difference either way with the antibiotics. I had them for over a year so my GP is trying to avoid having me on them again, I've already had repeated infections. I'd need a culture for specific bacteria to know what ones to take, as far as the insect borne illnesses go Ross river fever would be a more likely culprit than Lyme, it's a public health warning kind of local, mosquitoes for some reason think I'm more tasty that everyone else in a 10 mile radius, my cousin had it and I was living in an area when it had an outbreak. I didn't have symptoms but I've had glandular fever too and didn't have symptoms with that either. I've been chronically sick for so long when I do get an infection I barely notice if that's any kind of measure of how much trouble my general health has been. Problem with Drs here too is you have to be 1/2 dead before they find anything wrong with you, by that stage the last thing I feel like doing is dealing with Drs.

I'm definitely getting opportunistic infections, thing is I'm resting, taking vitamins and eating properly so there's really nothing else I can do about it, all it takes is a little stress and I crash. I thought selective igA deficiency might be behind it, I don't know if I have that though.

You can test false negative with the Celiac blood tests and you can also have a biopsy come back "clean" - I did - 3 of them, as a matter of fact. There is a test for the IGA deficiency, too. You sound so much like me. I've had shingles 3 times, now. Although, I'm not getting as sick as I used to, but I think that is because my immune system is in hyper mode right now. Also, the anti-rheumatoid drugs (methotrexate and the like) won't work against the Celiac auto immune symptoms. I had a Rheumy once who knew a lot about Celiac and its' treatments. Basically, she told me that it is still such a newly recognized illness (old disease, but they just realized it is not at all rare), that doctors just do not know all of the symptoms and what all could be happening besides the gluten intolerance. For many, staying off gluten does the trick. For many others, it does not. But, the ones who it seems to affect the worst, as far as not getting better being gluten-free, are the ones who were sick for a long time and went undiagnosed. I once had a really good veterinarian when I had horses. He said "if I waited for anything to show up in my patients' bloodwork, they'd all be dead". I wish more doctors were aware of that.

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A Rheumy does not test Thyroid. A good thyroid specialising GP is the best. One of the holistic style GPs that you find from here would be a good place to look. http://www.acnem.org/modules/mastop_publish/?tac=23 Some people go to Endos but lots find an Endo so old fashioned that it is a useless appt. I saw 4 Endos and they were all terrible and my GP is much better. You need Free t3 and Thyroid Antibodies tested. Do you have your paperwork? The holistic GPs usually search and then treat Fibromyalgia with thyroid meds.

What was your B12 result? Did you have Homocysteine and MMA tested as well? The B12 test is not that reliable. Have you read Sally Pacholok's 'Could it Be B12". I think it is Chapter 3 that is all about the link to MS symptoms. Was your Parathyroid tested at the same test as the calciums and were they ALL mid range at the same time?

Go over your papers and results and look for areas that the Drs are missing the trend.

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How did you fix the SIBO ? I now realise that a previous breath test I had - is only 60% accurate!

Long term antibiotics. It took me three years to get better. Did you see any changes on antibiotics? I mean either good or bad .... some people just start feeling better slowly, others have herxheimer reactions where they feel worse before they feel better.

I think most, if not all, of us with chronic health problems have several issues that are wrong - parasites, bacteria, fungus, hormonal, etc. All these other things take advantage of the fact that our health is compromised.

Bacterial overgrowth in the intestines of the bad kind of bacteria can also wreak havoc and cause systematic symptoms. I had klebsiella and citrobacter along with horrible parasites. It took me years to fix my gut issues of those problems. Low stomach acid also makes it hard to digest food. I still have to supplement HCL on occasion.

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You can test false negative with the Celiac blood tests and you can also have a biopsy come back "clean" - I did - 3 of them, as a matter of fact. There is a test for the IGA deficiency, too. You sound so much like me. I've had shingles 3 times, now...

I was negative for the antibodies but positive for the genotype, apparently that's something that happens with the igA deficiency. A Dr I spoke to recently said they have a new blood test they do when they test antibodies because the one I was negative for wasn't reliable.

Shingles could be a possible, my grandmother used to get it, she was actually hospitalized a couple of times because of it. There is an atypical presentation that doesn't have a rash and has neuro symptoms. Having said that I have been getting rashes, I assumed DH because of the itch but maybe it's not. I only used to get it on my wrists and ankles pre gluten-free, this looks more like the lupus rash or rosacia. I'm also getting sparse little dots/lumps everywhere, they come up like little insect bites.

...I had a Rheumy once who knew a lot about Celiac and its' treatments. Basically, she told me that it is still such a newly recognized illness (old disease, but they just realized it is not at all rare), that doctors just do not know all of the symptoms and what all could be happening besides the gluten intolerance. For many, staying off gluten does the trick. For many others, it does not. But, the ones who it seems to affect the worst, as far as not getting better being gluten-free, are the ones who were sick for a long time and went undiagnosed.

The dietitian said the same, they're finding out new things all the time. I was undiagnosed 18 years, or rather it was 18 years that I was actively seeking a diagnosis due to symptoms, I had an osteoporosis diagnosis at 38 so as you can imagine it's done a lot of damage.

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Georgie, I took Humaworm, which kills parasites - bacterial and others. It helped immensely.

I also took oregano oil, grapefruit seed extract, Nutramedix enula, coconut oil, plant tannins, etc. at various times.

I ate a lot of cultured (not pasteurized is important) foods like kefir, kombucha, and fermented veggies/sauerkraut.

I took HCL when I ate to help digest. Sometimes the pathogens in our guts can be from low stomach acid, which also makes food hard to digest.

I avoided sugar and simple carbs. I ate plenty of carbs, just avoided things like white rice, etc.

I took VSL#3, a probiotic with 450 billion organisms, also Theralac and Ultra Flora, to rebuild the gut with good bacteria.

I still do much of this stuff, but at this point, after a three years of this, my gut seems to be healed. If I eat too many raw veggies at a meal though, or combine a lot of different types of foods, I still need the HCL.

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Don't give up! You've gotten lots of ideas here.

That said, I don't think that Western medicine is very well-equipped to deal with this kind of illness. I wouldn't want to go without it, and it is amazing at many things, but not at dealing with autoimmune disease(s). I hope that as more people are diagnosed with this kind of illness, Western medicine will get better at dealing with it. In the meantime, I am getting better (primarily) thanks to Traditional Chinese Medicine (TCM).

I was really, really sick, like you. I had seen multiple specialists and finally a celiac specialist. I had had too many expensive diagnostic tests to count and probably had blood drawn for labs ten times in the last nine months. The celiac specialist had gotten to the point where she suggested that it was chronic fatigue or fibromyalgia that was making me sick, even though I didn't have other associated symptoms. Her other suggestion was Lyme's, but I didn't test positive for that. Meanwhile, my acupuncturist was saying that she understood what was going on and I was starting to get better.

I can't explain how the Chinese herbs and acupuncture are making me better. The Chinese medical concepts do not translate into Western terms. My primary diagnosis for example was "imbalances". My acupuncturist believes that my digestive issues from gluten led to complications throughout my body, hence "imbalance". She has spent the past 3 - 4 months addressing these.

As an example of how this has helped me: when I complained of insomnia, my acupuncturist gave me herbs to mix with warm water and soak my feet in before bed. (I couldn't take herbs by mouth, because my digestive system was upset.) Now, this seemed absurd to me, since insomnia to me meant being awake all night some nights or sleeping at 4 or 5 am. I slept immediately after soaking my feet in this herb mixture! It worked, almost every night. My insomnia is now a distant memory.

I really hope you can find something that will work. If you can, I do encourage you to explore TCM.

Best,

Lucia

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I went back to the Drs, he thinks it's most likely Fibromyalgia, I'm not just going to accept a diagnosis if I can't see sufficient evidence that I have it though. Especially when it doesn't fit the profile, doesn't respond to treatment and is progressing, so for what it's worth I'm off to a rhumatologist next. I'm going back to the allergy clinic later as well. I could also go back to the neurologist and have him take a closer look, the symptoms that are bothering me most are the CNS ones. Next step after that would be the pain clinic which I probably should make an appointment for now since it takes so long to get into. So there's a way to go yet, in the meantime it's over the counter pain relief and rest.

As far as conventional medicine's going it's looking very much like the best I can hope for is pain management, I don't see myself getting anything other than symptomatic treatment. I've done all I can with reducing stress, eating well etc and I've tried a lot of different alternative healing methods, I've seen Chinese herbalists, had laser acupuncture, acupressure, cupping, it didn't work on me. When I had reflexology it actually seemed to inflame things. I used to swear by my Chiropractor though, he was a magician when it came to fixing migraines but with neuro symptoms getting adjustments right now would be a bad idea. One thing I wouldn't mind trying that I haven't yet is juicing.

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I HAD fibromyalgia, very badly, all but one point. Took Lyrica for sleep, couldn't sleep without it. Fibro is simply a set of symptoms with no known cause. I would encourage you to keep searching for the underlying cause of your symptoms. Something causes fibro, it doesn't just happen. Mine was a bacterial cause. I treated the bacteria and managed the pain. After treating the underlying cause, the fibromyalgia went away. I haven't had it for about two years now. It took months to wean off the Lyrica though because I had become reliant on it for sleep, the pain was gone, but I couldn't sleep without it.

My chronic fatigue is also gone. Same thing, a syndrome with no known cause.

Keep searching for answers. Don't just settle in on pain management. Good luck! I remember being where you are about 5 years ago.

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I had chronic fatigue and fibromyalgia symptoms that went away on a whole foods gluten free diet. They continued on a standard gluten free diet. So did my other symptoms. Some of us are more sensitive to trace cc than others. That might be your problem. Take care.

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I have been reading all these posts and really feel for you. My daughter has celiac disease as well and has been gluten-free for a year like you the stomach issues resolved but the pain, fatigue, mood, and concentration are still present. A few things I would check out:

1. Get another endomysial antibody test done if you are not getting contaminants this test should be negative.

2. I am a practitioner and many of your symptoms can be viral or bacterial. What I am seeing in many celiac disease patients is they are positive for Lyme disease. So get a test done by either Igenx or Neuroscience these are the only 2 companies that accurately test for TBD that is chronic.

3. If this is absorption getting an IV cocktail called a Meyers Cocktail should produce relief of your symptoms within 24 hours. It will not last long only about 36 hours max but it will show you that your symptoms are coming from nutritional deficiency.

4. Get to a functional or integrative medical doctor or you will be on a roller coaster ride of pills and no answers.

5. Find someone who does intra-dermal allergy testing they can neutralize your reaction to wheat so when you do get a contaminant your symptoms will be minimal but more importantly it will help the immune system become stronger and your reactions will not be so severe to small amounts. It actually works to heal the immune response.

5. You many also respond better to homeopathic remedies instead of vitamins or herbs because they have so much stuff in them and you cannot tell where they come from. Homeopathic remedies are based on the theory like treats like. They work wonderful!

Good Luck to you remember it is your body you are the advocate and the driver not the medical system.

I'm wondering about Myalgic Encephalomyelitis (ME) because of your overwhelming fatigue and pain. The disease is neurological and can appear MS-like. It starts with a viral encephalitis infection, so your post-op headache/virus really makes me wonder. Thing is, I think there is damage on MRI. Still worth a look.

http://www.hfme.org/ looks like a very informative website.

http://www.name-us.org/ is another with a lot of information.

You may have a more "typical" chronic fatigue instead, though it doesn't explain the foot drop and ataxia. Maybe fibromyalgia? If your doctors think that's the case, pick up From Fatigued to Fantastic by Jacob Tietelbaum. He became an expert in CFS when he came down with it himself in medical school.

http://www.endfatigue.com/

Even if it's not ME or CFS, you might get some nutritional ideas from these websites as to what might be missing.

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    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
    • You could ask the allergist to give you a starting point for an elimination diet. You would start out with 5 or so foods and then add in one new food a week to see if you react. If you react you of course drop that food. It is a bit of a pain as everything has to be basically single ingredient to start.  My allergist felt that was the best way to go and more accurate than blood testing.
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