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The rhuematology workup was normal except for high calcium, it's been both high and normal before so he's retesting. He also said if I have another flare up I can get seen straight away so I'm not going to be left to deal with it all on my own like I was back when all this started.
I'm having a LOT of trouble loading this site, can someone post a link to the low fi version?
*crossed fingers I don't lose this post too*
Alergy clinc today, they did a diet review, I am totally gluten-free. Amines, preservatives and dairy are now removed completely on a month trial. I had some improvement cutting down from what info I had over the last several weeks, off most pain meds now.
Hidden sorces of amines were picked up, alcohol and mixers were a source. Amines had inadvertantly increased when I went gluten-free initially because of what I sustituted for gluten containing foods, the reason I'd got rid of one set of symptoms only to pick up another.
I would definitely talk to your doctor about this and I'd be extremely careful if they increase your dose. Alcohol increases the effect of medications, it can also increase the effects of food intolerances. Rum has a reputation for making people aggressive but I think that's a bit of an urban myth. I can't take Lexapro. I tried it once, took just one tablet and within about 15 minutes had a horrific reaction, my heart rate/BP went through the roof, sweating, nausea, diarrhea, and anxiety so bad I was literally screaming, I had to call an ambulance. There are other SSRI's, SNRI's, TCA's etc they can try you on if it turns out to be the Lexapro causing the trouble.
I've been getting this for years, the nightmares, yelling, waking up, even sleepwalking, it's worse when I'm under stress or overtired. I got told I had PTSD :/ (combined with anxiety and odd sensations that went away gluten-free) I'm starting to think now it's not that at all.
My knees and calves have started to go down a bit, the bottom of my calves tho feel hard as a rock. I've managed to get things to settle a bit with the anti inflammatory, strong OTC pain relief, wearing tight stockings and staying off my feet, fingers crossed nothing else happens before I get to the specialists.
I've just stripped my diet back to something very close to the allergy safe one I was on before they started giving me challenges. If it is something in my diet I should start to come good in about two weeks. I suspect if anything it's going to be the amines. Theoretically something like a fish meal that wasn't so fresh could push the level high enough to provoke a reaction if my accumulative level was already way up. Alcohol increases absorption which would provoke a faster/stronger reaction and could explain why I can't tolerate alcohol. I still don't see it doing that much though, nothing has ever done that to me, it would have had to have been a whopper dose to have pushed it up to a level I've never experienced before and get that kind of reaction, I would have had to have been practically poisoned with it. I don't know if being gluten-free has any effect on amine sensitivity or absorption, gluten-free, not drinking, not smoking and eating more healthy are the only things I'm doing different.
I've got another month and a half till I go back to the clinic and I've run out of options, it's a pain to be limited to not much more than rice, chicken and a few selected fruit and veg but in the short term it won't hurt and I figure it's the safest thing I can do right now.
You're in good company, seems a lot of people on the board have had similar problems. I don't know how routine blood tests are after a coeliac diagnosis, I had to ask to have my vitamin levels checked becuase of vitamin deficiency symptoms, I also requested a bone density scan because I was getting bone pain, not to alarm you but I have osteoperosis from 18 years of undiagnosed coeliac malabsorbtion (I was one of the ones who had signifigant wasting though).
DH is a blistering, increadably itchy skin rash some people with coeliac get, it settles down after going gluten free.
I've been unwell since I was young too, allergies, ear infections, bad stomach problems, anxiety, tired all the time, a lot of it settled down after going gluten free. First month on the gluten-free diet I hadn't felt so good since I was a teen. The old symptoms haven't come back what I have now is different. It does take a long time to sort out but I hope you get a diagnosis and everything clears up for you.
I didn't leave alcohol out of the equation. I usually try cider, wine or champagne and don't often get to the 2nd drink before I feel like I have a blinding post bender type hangover that lasts several days, I tried top shelf scotch once and got the same reaction. Needless to say it's not something I've done often.
I'm already booked into the allergy clinic for review next month but I'm pretty sure it's not gluten, if anything I'd be looking at amines which I had a mild reaction to, I'm ok to eat it but it might be causing me some problems if I'm eating too much of it. Things like the fruits, salads, veg and Asian style foods I substituted for the cake/deserts, bread on the side, hamburgers and pizza I had before going gluten-free could have pushed my amine level up enough for me to reacting to it. It doesn't explain where I'm at now but could account for the tiredness and general feeling of unwellness I had a little while after going gluten-free before the attacks/flares started. This is all I've found about it online so far http://thestar.com.my/columnists/story.asp?file=/2007/5/23/columnists/foodsafety/17792487&sec=Food+Safety but I'm looking into it further. I'd be interested to find anything on alcohol intolerance, SSRIs and bad reactions in people with amine intolerance too since I've had some pretty unpleasant experiences with them.
Medicines are very strictly labeled here (Australia), OTC it's written on the packet or insert, prescription it's on the insert/PDF consumer information printout (on the net/chemist computer, anyone anywhere can download it, you'll find it on the last page in the ingredients list). I've taken a lot of different medicines this year and not one of them has not had "does not contain ... gluten ..." on it, just about all of them however have contained lactose (if anyone is sensitive)
You're not going to believe it but I had another flare up just before the weekend. After 3 ER visits, 2 drs rooms, 4 chemist shops, a rhumatologist, 3 medication reviews and much gripeing about the healthcare system (mostly from the drs) I finally landed on a drug combination that's showing some promise (prescription anti inflamatories, something to kill stomach acid so I don't wind up with an ulcer and codeine. I was also assured that a rhumatologist isn't going to palm me off if he can't find anything which had better be true because I'm at the end of my rope here.
I'm really angry about the state of things, I got totally hung out to dry, couldn't get a drs appointment, had to call an ambulance to get to the hospital because the house call guy here just tells you to go to the hospital anyway, I was kept waiting so long when I got there the pain meds wore off then I got yelled at by a nurse for ending up on the floor as a result, I ended up walking out without even seeing anyone. Walking out was the best thing I could have done though because by some twist of fate (or maybe law of averages because of the sheer volume of similar incidents) I got lost looking for rhumatology and ended up in the rooms of the rhumatology professor, his receptionist took one look at me and paged his associate who saw me that afternoon, did a full work up (bloods, urine, x-rays, screening for autoimmunes, infections, arthritis etc) and got me an earlier appointment at the outpatients for the results (I would have had to wait till next year) so as long as the hospital doesn't lose this lot of tests I may actually end up getting somewhere. Trick is now to get through to the next appointment without incident.
I've just read the referral to the rhumatologist, my Dr's put in the neurologist report, it suggests I should be referred to a psychiatrist!!! It's pathetic, I'm suffering and the people who are supposed to be getting to the bottom of it are off speculating about my sanity? I'm sick of drs who write patients off just because they can't find something.
So that's it then, I'll go back to the allergy clinic but no more drs, I've had it with them, it's been such a waste of time and money. Useless tests, useless treatments, insults to my intelligence and questioning of my character, I've endured 20 years of their carry on, I'm so angry right now.
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.
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.
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.
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.
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.