What allergies? Could have food allergies, sounds like alot of stomach problems and especially fatigued after eating. Wheat/gluten is a common one that could cause alot of your symptoms. I would check that out.
Well I am going to see if I can't get in to see the doctor this week because I am starting to lose it. As far as allergies I am allergic to cats, dogs, grass, dust, pollen, ragweed, and probably some other stuff I have forgotten. I am going to try a gluten free diet this week and see if it helps at all. It's really hard for me to stick to it though because basically all the foods I enjoy have gluten and I can be a picky eater sometimes. So I will be eating chicken dogs w/no bread, Heinz ketchup which is gluten free, carrots, fruits, and whatever I can come up with rice wise. Definitely going to be an interesting week so I will keep everyone posted.
May be worth a try. Just make sure the Chicken dogs are gluten free, lots of the processed meats/foods have gluten fillers. It was very hard for me, but personally I felt so much better. I was eating chicken breast, fish, steak, rice, baked potatoes, corn tortillas, corn chips, vegetables. There is actually more than you would think; just real hard to eat out. And Great Value brands for the most part will say "gluten free" on all products that are gluten free.
The hard part to tell since you will be eliminating other substances is that it could be another food allergy that you have, like wheat or something. Or could be candida which will be alleviated with a decrease in the carbs/sugary foods in a gluten free diet.
Also if you are going to get tested for food allergies, don't cut out the foods for a prolonged period before the test or a reaction may not occur; especially in celiacs/gluten testing in which the antibodies will not be present during the test if you have been gluten free for a period before the test.
Sounds like the same exact symptoms I have! I am being tested for Celiac disease. I would hold off on the gluten free diet until you see a GI doc because it can alter your test results. Check out csaceliacs.org for detailed info.
Laughingman how are things, did you find anything out?
Babblingfool have you gotten your test results back? If so please share, I got tested and have the DQ2 gene, which 90% of celiacs have but does not mean for sure I have it. With that result and the positive results of the gluten free diet for one month, that is all I need...but I think I am going to get tested for other food allergies and candida to make sure there isn't another possible cause.
My blood work came back negative IgA, negative Celiac panel, high levels of Thyroid Antibodies. (possible Hyperparathyroidism so my Rheumatologist tells me.) My Rheum also wants to put me on Plaquenil (a lupus drug) even though I have not been diagnosed with lupus at this point. My rheum labs suggest an autoimmune disease, but not definitive on which one. I am waiting to get in with my internist to further check my thyroid and discuss referral to GI doc. Once again left waiting, waiting, waiting and no answers. I also have had a skin rash present for about 8 years on my fingers/hands. Cleared up once for almost 1 year during the pregnancy of my second child. In reading about Celiac, I happened upon Dermatitis Herpetiformis. Describes my hands to a T and the pics look just like my hands. Anyone else have a strange rash along with the above list of symptoms????
Glad you found out the thyroid antibodies, maybe that will be of some help. I don't remember the name but I think there is an autoimmune disease that attacks the thyroid, maybe hashimoto's. If you still feel celiacs could be I would go for the biopsy it seems the only sure way to diagnose it.
dude that is weird! i've been looking around and this seems like the kind of symptoms i have!
i have pretty much every symptom you've been showing! i don't get the blood boiling or neck pain though, although i do get very angry at stupid things! I have noticed knee joint swelling that i though might be arthritic! I don't drink anymore cos even 1 pint makes me feel like **** and sick as hell for the next day or 2 days!
my thyroid tests came back normal apparently but your symptoms are just like mine! The thing that made me notice was the rash on the hands, i get it around the base of my thumbs on the top of my hands(opposite side to the palm)! This appears mostly when i feel sick (which can last days to weeks)!
it's weird how similar you seem to be! my mum is pretty intolerant to a lot of foods like wheat etc so i always wondered if i was!
Definitely get checked out and I would say try gluten free diet for a month or so and if you feel better that may be all you need. Especially the rash there is a condition known as Dermatitis Herpetiformis, usually very symmetrical like on both hands, that is very common in celiacs or people with gluten allergies
The knee joint swelling makes me think you might have lyme disease. That is one of the major symptoms so get tested. Get both the western blot and the elisa test. I have been super stressed out with new job but I am finally getting some time off to see the doctor. I am going in Wednesday after work and handing him my list of symptoms. He is probably going to look at me like I am crazy but might as well give it a shot.
That is quite a list of symptoms, and I would be interested to hear what tests your doctor ordered. Some of them are quite general (eg. fatigue), but others, like hair loss, are quite specific for a number of things.
As a doctor myself, I'm dismayed (and irritated, I'll admit) when someone's first thought is to suggest that someone has either fibromyalgia or CFS (chronic fatigue syndrome). The symptoms of both those disorders are extremely general, but the main thing is that they are diagnoses of exclusion, meaning that you must have excluded other more likely causes. For instance, the diagnostic criteria for CFS would also be met by someone with end-stage terminal cancer - but that person doesn't HAVE chronic fatigue syndrome; they have cancer! The point is, the symptoms have to be unexplained by another illness.
Your symptoms could well be explained by an autoimmune disorder of some kind, and this will very likely show up on the bloodwork. Until you have done those investigations, I wouldn't be going on a gluten-free diet - trust me, my partner has Celiac disease and sticking to this plan long-term is no picnic (literally). The point is, there's no end of "ideas" for what the problem might be - a gluten allergy, a "candida" problem (very trendy these days), an intolerance to aspartame, to flouride, to lead in the pipes, and on and on. Just ask and you'll get several thousand suggestions of "what this sounds like."
Re: Notquiteright's symptoms, knee swelling should NOT make you think someone has Lyme disease - yes, it's all the rage these days, but it's still not THAT common; he'd be much more likely to have septic arthritis from gonorrhea than Lyme disease! Seriously, a much more common cause of a single swollen joint (along with his new intolerance to alcohol) is good old gout.
To: Babblingfool - Plaquenil is not a "lupus drug" - it's an anti-inflammatory drug used to treat a wide range of rheumatologic conditions, of which lupus is one of hundreds. The reason your doctor is leaving you "waiting and waiting" is because the average autoimmune disease (and it DOES sound like you have one) takes an average of 3 years to fully "declare" itself. In most cases, there is not single blood-test that confirms an autoimmune disease (the way we can confirm, say, AIDS or Hepatitis B); these diseases are diagnosed on the basis of a constellation of symptoms, some of which may take years to appear. As an autoimmune sufferer myself, I know this from personal, as well as professional experience (and I took Plaquenil for years before I knew what I had). So please do not think your doctor is dismissing you; I doubt very much this is the case.
Yes, dermatitis herpetiformis is very common in people with celiac disease (used to be called celiac disease of the skin) and to a lesser degree in people with autoimmune thyroid disorders. It is also seen in people with other autoimmune diseases including vitiligo, Type I diabetes, Sjogren’s syndrome, dermatomyositis, and rheumatoid arthritis. Ultimately, a skin biopsy will tell if your rash is really DH - if so, it may take time before you know what (if any) other autoimmune disease might be present with it.
Right on about CFS and fibromyalgia. But some people just want a diagnosis.
However it sounds like you have shut out the possibility of some common problems (gluten and candida) that can cause a variety of chronic symptoms and that are easy to test (both by a doctor and yourself through elmination diets) and easy to fix. And to recommend against gluten free is odd especially since your "partner" (who I am sure is much better gluten free regardless of the "hassle" of having to eat healthy) is allergic to gluten. There is no harm in going gluten free and in fact it requires healthy eating, so I can't imagine why it wouldn't be something you would be all for trying. The same goes for candida, easy to try and good for you. I hope you aren't just another doctor that only sees cures by magic pills/medications and of course money that just treat the symptoms.
I know lyme disease is rare but if I remember from reading in the past joint pain especially in the knees can be a symptom of the later stages of lyme as well as neurological symptoms. It is true though that I would love a real diagnoses because its killing me to suffer with all these symptoms and not know what is causing them.
Soonerman - you're probably right that there's no harm in trying to eliminate something from the diet; I often encourage patients to try elimination regimens, though usually only after I've done MY job and worked-them up for potentially dangerous causes for their symptoms. I don't agree that either the gluten- or candida- free diet is "easy to try" (earlier, you commented yourself on how this was really hard for you) - I'm familiar with both, and they each require an enormous commitment! But hey, if someone wants to try it, I'm all for that.
I can assure you that I'm not a doctor who sees cures only in pills and FYI, I'm in Canada, and I can assure you that Canadian doctors do not have money on the brain as do many of our American counterparts; to be blunt, a doctor in Canada receives about $17 to see a patient and this is strictly controlled by the government; medicine isn't "a business" in Canada - it's a social service.
Laughingman - yes, you're completely right that knee pain is a late symptom of Lyme disease; the point is that it's not a common cause of single-joint arthritis. It's certainly something worth considering, though, if the person has other symptoms suggestive of Lyme. I completely empathize with you wanting a real diagnosis - I've travelled to 3 different countries and seen dozens of doctors in search of a clear diagnosis, and I can guess at the frustration you might be feeling. It's doubly hard to try and sort out your symptoms when you feel so crappy and have so little energy for the whole thing. I often say it: being sick is a full-time job!
I have a number of patients with chronic, as-yet-undiagnosed illnesses and I feel my own experience has made me even more understanding of their plight. I hope you can find a good doctor willing to go with you on this difficult journey. Things may get better on their own over time, or they may get worse - the good news about that (if there is any!) is that if often brings you closer to an answer.
PLEASE check out the symptoms of hyperparathyroidism...if you haven't, have an ionized calcium level done...if that comes back elevated, have a PTH (parathyroid hormone level) done...If this is what's going on, you are going to get sicker...Last year I had a parathyroid tumor the size of a chicken egg removed...parathyroids only control your blood calcium levels...If you have a tumor, even a pea sized one, it makes your bones give up calcium...You get symptoms of what docs call groans, psych moans and bones...You will get kidney stones, high blood pressure, joint/back pain, constipation, heart burn, fatigue, and so much more...also depression, sleep probs, blood sugar problems and constant headaches...Sound familiar?if your tests come back positve for the parathyroidism, have a sestamibi scan done...and get a surgeon that has done hundreds of these operations..Not just any surgeon will do...good luck...
I am glad to hear that and wish so much that there were more doctors like you, especially in America. You definitely seem to know alot about alot and have the patients health in mind; I admire that very much. You are right, there is no substitute for a good doctor and testing aimed at potential problem areas. I wish I could rely on the doctors I have had (several) to do Their Job like you do yours; but doctors here (not all, but probably most) can't be relied on. In fact I have always had to suggest relevant tests (like thyroid, adrenal...), and had to go through three doctors till one even noticed low B12 (even though the results were from years before). I have hated feeling like I need to take matters into my own hands and do some of the doctors job for them, but unfortunately it seems that if I don't no one will.
Thank you for your input here, as it is very helpful in seeing what things might need to be looked into; I would pay for your time. Its nice to have some professional thoughts, in fact i would appreciate it very much if you would give me some suggestions if you had time.
Thanks for your nice comments. I've had my own struggles with the medical community and what most doctors don't realize is that eventually - one day - each of them will be a patient, too! Being a patient is tough work and it's no fun to feel like you're relying on people who don't care all that much about something so critically important. Like others, I've ended up doing a lot of my own doctoring, though I guess I've had the advantage of having more knowledge and I can usually get what I want a little easier than others. It helps to know what to ask for (and to have contacts). I'm always happy to share what I know, and would certainly be happy to hear what's going on with you and give you some suggestions on what to do next. I'm wondering - did your celiac screen come back positive? - I think it's the antigliadin and antiendomesial antibodies. It was interesting that DQ2 was positive, but I can't imagine someone testing for that without testing for the other two.
Thanks for offering to help. I sent you a message with my symptoms and testing/results. I am not convinced it is Celiacs and my results aren't conclusive either way; It was recommended I get the biopsy to get a better idea, but I have been scoped within the last year and really don't want to do it again. Especially since the biopsy could be a false negative and not get me anywhere. Besides the DQ2, I did get tested for the antibodies, the results weren't clear but looked negative except a potential part that wasn't too clear on what the number corresponded to, the results were:
TTG Antibody, IGA - <3 (Negative because 10
If you do have time, please have a look at my message I sent you. Thanks
It messed up my results, here they are:
TTG Antibody, IGA was less than 3 (Less than 5 was negative)
It states "TNP-Reflex testing not required" for IGA and Endomysial Antibody Titer
IGA, Serum or TTG Antibody, IGG is 158 mg/dL (I can't tell which cause columns kind of messed up)
If it is IGA Serum it would be within the reference range (81-463)
If it is TTG Antibody, IGG it would be positive (greater than 10)
Well I went to the doctor Wednesday expecting to share all these symptoms with him and ended up having a temperature of 101. After he checked me over for that I gave him a printed list of symptoms "basically the same thing here with more background" that told him pretty much everything I have been feeling the past decade. He gave me a prescription for antibiotics, albuterol inhaler, and I have to go to labcorp to get some blood work done. The way I am coughing and the lack of other symptoms leads me to believe I might have pneumonia though the doc was leaning more towards the flu until I mentioned the other symptoms.
CBC with Differential/Platelet
Lipid Panel With LDL/HDL Ratio
T4 and TSH
Since you are obviously a dedicated md, I was wondering if you could give me your "opinion". I started with IBS a couple years ago. Last year I would get pain in my arms when my IBS acted up. In 10/07, I started having severe pain and fatigue. I tested negative for ANA. On 1/16, I tested positive ANA (speckled), SED rate went up to 21, as well as positive for cardiolipin, phosphatidylserine, and glycoprotein. They want to say I have fibromyalgia. I recently started losing my hair! I have been on Lyrica, anti-depressants, muscle relaxers, steroid shots, do physical therapy 2x per week, and still no relief! Any advice
soonerman, can you provide a bit of background on your illness - it's symptoms and duration and progression and other medical history; this thread started off with laughingman's symptoms, so other than your test results, I don't really know much about your clinical picture. What I can say, though, is that I wouldn't be lining-up, either, for an endoscopy! Ug! The DQ2 only means you have greater potential to develop celiac; the negative celiac panel is fairly reassuring that you don't have it - or at least, don't have it yet.
princess73, first of all, you didn't "start with IBS" - based on this developing picture, you don't have, nor have you ever had, IBS. You had unexplained GI symptoms, but you can only call something IBS (or fibromyalgia (FM) or chronic fatigue syndrome) when nothing ELSE explains your symptoms - not the case with you. True, nothing else explained those symptoms at the time, but now it would appear (unfortunately) as though a disease process is starting to unfold.
As I mentioned earlier, it isn't unusual at all for an autoimmune disease to take years to fully emerge in such a way that it can be identified. Your clinical picture is concerning with pain and fatigue, and your labs are very significant. The fact that you now have a positive ANA when 3 months ago you didn't is more significant than if you'd always been positive; some people are positive with no symptoms whatsoever, and for them, it's just their "normal." Clearly, this isn't the case with you.
I don't know your age (I'm guessing may 73 is your year-of-birth rather than your age!), maybe 34 years old, in which case a sed rate of 21 is abnormal and indicative of an underlying inflammatory process. It's non-specific, but allows one to track an illness in terms of flares and remissions. Of course, if your age is 73, this sed rate is within normal limits (but I don't think you're 73)! Unfortunately, as a 34 year-old woman, you're sitting right in the middle of autoimmune territory.
I'm going to do a little reading on your test results, but I can tell you quite convincingly that you do NOT have FM, which is a disease associated with no lab abnormalities. Is that your story? Clearly not. I once had a doctor write this at the top of my chart: ?fm and I made her cross it off and initial it, since I don't have a single symptoms consistent with fibromyalgia.
Just like a diagnosis of Borderline Personality Disorder, you NEVER want this on your chart unless it's something you actually have, otherwise, it will follow you throughout your life in a way that will make getting medical help more challenging than it would otherwise be (and I'm being tactful here).
I know there will be those that will argue with me about this - I'm not saying FM's not a legitimate illness (though it's debatable), just that too many patients who have other things get prematurely diagnosed with FM which then allows your doctor to stop looking for what you might REALLY have. Do you know how many people who are eventually diagnosed with MS started out with a diagnosis of FM? Too many to count. And of course, it's just plain dangerous to have the wrong diagnosis - if you'd accepted that you have FM, you wouldn't even have HAD bloodwork drawn on January 16, and would have no idea about the autoimmune markers that are now appearing in your blood.
OK, I'm going to stop barking about FM now. Clearly, you can see that it's a sticking-point with me. I'm hoping you're in the care of a rheumatologist just now (I'm guessing that's the case from the labs drawn; most family doctors wouldn't think to order them), and that's certainly where you need to be. Whatever illness you have seems to be in the process of declaring itself, so you'll likely know more with time, but I'm going to check out what these early markers might mean. Bottom line: reject the diagnosis of FM (as well as IBS). In the end, you may end up having something more ominous than either - let's hope not, but let's not confuse the picture.
I too have alot of the same symptoms as you. I have been diagnosed with an arachnoid cyst on the back of my brain by the brain stem. I would suggest for you to get an MRI and then go from there. There is not alot of research or knowledge about arachnoid cyst and the doctor I am seeing wants to leave things alone. I am in the process of finding another doctor because I want to be fixed. I am tired of feeling bad all the time.
Well this other sickness is kicking my ***. My lymph nodes are swollen and hurt when I touch them. I have some kind of sore under my tongue, my whole body aches, and I am even more fatigued than usual. I finished all my antibiotics but they didn't help. I guess I have the flu but I never had a sore throat just weakness and a temperature. At least tomorrow I will be able to get my blood work done at work.
Well, all my blood work came back normal so the doc put me on an antidepressant. All the symptoms I showed him I am not surprised but still this is helping me cope but most of the symptoms are still there. The main ones that bother me are extreme fatigue, visual snow, stomach problems, and memory problems. I am going to get tested for lyme and see what happens.
Did you ever try gluten-free for a month or so? Also candida/yeast overgrowth could be a potential cause; google it and see if you think it fits. If you are interested after some research, a good book is "The Yeast Connection". If so you could try and eliminate sugar and yeast products to see if you improve, if so it might help to get an anti-fungal prescribed and continue sugar/yeast free for awhile.
Both gluten and candida have been linked to both CFS and Fibromyalgia Syndrome.
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