Symtons For Coelic

[kev001]

Hello, i am just waiting for the results for a blood test for coeliac.

Does anyone know whether severe joint pain and swelling of the joints is a common factor for this disease? Does anybody else have this. I suffer with it mainly in the hands. My other symptoms include, depression, weakness, constipated/or other, but the one symptom that affects me the most is the pain from my hands. I have had 2 arthritus blood tests and been given the all-clear for that. Also, how long from being on a gluten free diet can you usually expect to feel a bit better..Thanks, Kev

[Byte Me]

Hey Kev,

I don't really know anything about the joint pain and swelling, but I do know about the depression and weakness - those were major symptoms for me that I didn't even realize could be related to celiac. It was a really nice surprise when those started fading away!

As for the time to feel better, well I think it is probably different for everyone. My digestive symptoms improved within a week or so of going gluten free, other stuff like depression took a little longer, maybe a month or two before I noticed. I'm sure time frames vary for everyone though. But at least it helps some to know you can and will start to feel better!

I hope you start feeling better soon.

[kev001]

Hi Jenn, many thanks for your reply. Its amazing how you have to look at everythings contents. I have been this way since october, but only recently started watching everything i eat, when my first blood results came back with low vitamin b12 I would say, just a fortnight that i have been watching my diet, and although the pain has disappeared from my legs, its just my hands now. Someone did mention that it can take upto 6 weeks before i see a major difference. I know what you mean in one of your other posts when you said i dont like getting out of bed. I dont have alot of fatique and have to make myself go out.

[PeggyV]

My daughter had the fatigue, deppresion and constipation. It took her about 30 days on the diet to start seeing major imporovement on those symptoms. Stick with it! Even if your blood test comes back negative, you might still want to try the diet. A lot of us have negative blood tests. I had joint pain, but not swelling. It has gotten better.

[kev001]

Hi, I intend to stick with this diet. Its very costly but has to be worth it. Its gone from my legs within a fortnight, so fingers crossed. Its nice that there are ppl out there that can share their symptoms with me giving me knowledge that this is could be coeliac. I am in England , is this a worldwide site. Its extremely good reading and very knowledgeable. Thanks

[Ursa Major]

Hi Kev, yes, this is definitely an international site, we have members from all over the world. There are others from England, too.

I had the awful pains as well, especially in my legs and hands. And yes, my hands would get quite swollen. With me those problems weren't only caused by gluten, though.

But I have heard of others who had the same symptoms as you and just eliminating gluten helped them get better.

If your hands don't improve soon, I suggest you look at finding out what else you may be intolerant to. The likely culprits would all be lectins. Check out the link in my signature on lectins if you're interested in finding out more.

Kev, did you have the blood tests for celiac disease done while already on the gluten-free diet? The result could be a false negative. Those tests are unreliable as it is, but even more so if you aren't eating gluten. So, if your tests come back negative, don't be surprised, and stick with the diet anyway.

[happygirl]

Kev,

Bone and muscle pain were my two main problems (it made my horrible GI symptoms seem mild in comparison---wow!) I was seeing a rheumatologist and had every test in the book. Started physical therapy, even. All my tests were negative. Then, I was dx'ed with Celiac, went gluten free, and luckily, my pain started to subside. Once I was truly gluten free, I was back to normal, luckily! My symptoms come back whenever I am accidentally glutened, so it is important to truly stay gluten free.

Even if your blood tests come back normal, it might be worth it to try the diet and see if you have an improvement in symptoms. It couldn't hurt! Let us know what else we can do to help.

Laura

[CarlaB]

I agree with what the others have been telling you ... try the diet no matter what the blood test says. If you get better, you know gluten was the problem. To second what Ursula said, if you don't get better, then you need to keep looking. It could be other food intolerances (I've heard nightshades commonly cause arthritic symptoms), or it could be something else completely. Don't quit looking till you get better!

[kev001]

Hi Oma, thanks for the link. I will certainly have a read as ive never actually even heard of Lectins. Yes, i was still eating gluten products when i went for the blood test which hopefully i should have the results this week. Thanks for your reply and link once more. Kev

[kev001]

Hi Laura. Thanks for your help. As i put earlier, it has gone (fingers crossed) from my legs. Since they sent me for this test a fortnight ago, i havent had anything gluten at all. I know that every person can vary, but what kind of time was it until it was completely gone in your case. Reagrds and thanks for your reply. Kev

[kev001]

Hi Carla, Many thanks for your reply. I will certainly look at the links that Ursula kindly gave me. I have never heard of nighshades either so im assuming its some kind of plant. Glad you are better. Many thanks again, Kev

[CarlaB]

Hi Carla, Many thanks for your reply. I will certainly look at the links that Ursula kindly gave me. I have never heard of nighshades either so im assuming its some kind of plant. Glad you are better. Many thanks again, Kev

Thanks. I'm still struggling with Lyme and have a long way to go ... but I've been gluten-free for over a year and my digestive issues are resolved.

Nightshades are things like potatoes, eggplant, peppers, etc. Ursula's link will have all the info about them. Many people have the joint pain leave when they stop eating them, but it's not a universal cure ... you can see if it works for you. Maybe it will all go away with going gluten-free. It's been such a short time for you, you can't really tell at this point.

[happygirl]

Kev, it probably took me a solid 2-3 months to feel somewhat normal...and I still had another couple months before I really felt "whole." But, the severe bone/muscle pain started lessening within the week, although mildly, I did see an improvement soon after going gluten-free.

Keep in mind....you might be "only" gluten intolerant, you might be "only" something other (nightshades, casein, etc.) intolerant, you might be both, you might be "none." Just a reminder not to try taking more than one variable out at a time...otherwise, you won't know which one it was that helped! There aren't two people on this board that are exactly alike....we might all be Celiacs/gluten intolerant, but we all came with different symtpoms, different times to get diagnosed, and different "other" issues. We are a fun bunch

[lonewolf]

Hello, i am just waiting for the results for a blood test for coeliac.

Does anyone know whether severe joint pain and swelling of the joints is a common factor for this disease? Does anybody else have this. I suffer with it mainly in the hands. My other symptoms include, depression, weakness, constipated/or other, but the one symptom that affects me the most is the pain from my hands. I have had 2 arthritus blood tests and been given the all-clear for that. Also, how long from being on a gluten free diet can you usually expect to feel a bit better..Thanks, Kev

My worst symptom was joint pain. It was really bad in my hands, feet and knees, but I also had it in my shoulders, back, elbows and hips. I had the other symptoms you described too. I had some amount of relief in 5 days and felt pretty much back to normal in 8 months. I don't have Celiac Disease though - just gluten intolerance. I was told that I was allergic to wheat at first, and that I should avoid all gluten for a little while, but that it wasn't my main problem. I also had to eliminate dairy, eggs, soy, beans, nightshade vegetables and all meats (except fish). Hopefully, you'll only have to deal with gluten. I'm happy to say that ALL of my symptoms are now gone, as long as I don't eat any gluten, dairy or soy and limit eggs.

[kev001]

Kev, it probably took me a solid 2-3 months to feel somewhat normal...and I still had another couple months before I really felt "whole." But, the severe bone/muscle pain started lessening within the week, although mildly, I did see an improvement soon after going gluten-free.

Keep in mind....you might be "only" gluten intolerant, you might be "only" something other (nightshades, casein, etc.) intolerant, you might be both, you might be "none." Just a reminder not to try taking more than one variable out at a time...otherwise, you won't know which one it was that helped! There aren't two people on this board that are exactly alike....we might all be Celiacs/gluten intolerant, but we all came with different symtpoms, different times to get diagnosed, and different "other" issues. We are a fun bunch

Hi, my results are apparently on their way and should get them in the post tomorrow. I am seeing the doctor this week. If its showing a negative, do you know the name of which other blood test i should ask for? With us not hearing of nightshades here, is there another name. Although this is becoming more recognised here, i think the knowledge isnt too great. At least thats the impression i get anyway. Thanks , Kev

[lonewolf]

Nightshades are tomatoes, potatoes, peppers and eggplant. There might be some others, but this is what I'm familiar with and had to avoid for a while.

If you show negative on your test, there really isn't another mainstream test for gluten intolerance. The best test is a diet trial - if you feel better of gluten and other foods, you'll know you're on the right track. If you try the diet and don't feel better after 2-3 months then it might not be your problem.

[kev001]

Hi, my results finally came back negative as predicted. I have felt slowly better having been off gluten and shall continue to eat without it. I have been into a couple of major supermarkets who have kindly printed off all their foods that are suitable for gluten-free diet. What i was wondering was, when im looking at a product where it says "contains",,,, if it doesnt state gluten or wheat on the label at all, does that mean im ok to eat this product. Purely just for gluten-free at the moment. Any replies would really be gratefully received.. Kev

[kev001]

Kev,

Bone and muscle pain were my two main problems (it made my horrible GI symptoms seem mild in comparison---wow!) I was seeing a rheumatologist and had every test in the book. Started physical therapy, even. All my tests were negative. Then, I was dx'ed with Celiac, went gluten free, and luckily, my pain started to subside. Once I was truly gluten free, I was back to normal, luckily! My symptoms come back whenever I am accidentally glutened, so it is important to truly stay gluten free.

Even if your blood tests come back normal, it might be worth it to try the diet and see if you have an improvement in symptoms. It couldn't hurt! Let us know what else we can do to help.

Laura

Hello Laura. Just to let you know that the blood test came back negative and although ive been eating a gluten free diet, it keeps returning. Quite bad this morning. Did you have good days and bad days with your joint pains and swelling? My doctor wont forward me for a biopsy as he thinks the blood test is good enough. Because this started after i came back from abroad, he thinks this is a normal virus that will go away on its own, in time.. I dont think so.

Also, with your experience, what would you suggest to do next. My work manager has been on my case now because they are not getting answers, although the work doctor will not send me back to work yet. Is there any other allegy test i can have to try and sort this out. Im totally lost in this situation. I would really appreciate your reply. Thankyou, Kev

[Ursa Major]

Kev, apparently your doctor is quite ignorant about celiac disease. The blood tests are not very reliable, and yield many false negatives. There are several people here who had a negative blood test, but a positive biopsy.

On the other hand, if your villi aren't pretty much destroyed, both may come back negative, but if you keep eating gluten, could be positive in a few years. You know that gluten is a problem, no matter what fallible testing says, so stay away from it! You could also be 'just' gluten intolerant, without actually having intestinal damage. In that case, those tests would always be negative, even if you get awfully ill from gluten. No doctor can stop you from eliminating gluten, it's your choice.

The nightshades are known to cause arthritis like symptoms. In fact, many doctors tell their arthritic patients to stay away from nightshades. They certainly cause joint pains for me, plus other nasty things. Potatoes cause gastrointestinal distress and aches, tomatoes cause migraines and achy joints, peppers make me break out in a rash of huge, pus filled pimples all over my nose and chin (not a pretty sight), and I don't know what eggplant does, since I don't like it and have tried it only once.

Nightshades are very high in both lectins and salicylates, a double whammy for me, plus one other thing that's bad for a lot of people (can't remember now what it is, but is explained if you follow my lectin link).

Oh, by the way, Oma is German (and Dutch) for Grandma. My name is Ursula