8 replies to this topic

[lclw]

Hi, I'm 30. I have had serious joint pain on and off for 13 years. Because I have psoriasis doctors have assumed all these years that I have psoriatic arthritis. This is a hard one to diagnose, because there's no blood test or anything to confirm. I was having some mixed opinions from doctors, some said it looked like that some said it didn't, so during this last "flare" (which has been particularly painful) I decided to see a rheumatologist at UCLA figuring they are the best. He said it didn't look like psoriatic arthritis because I don't have visible swelling and because it isn't consistently painful. My pain comes and goes, when it's gone it is pretty much all gone, but when it comes it stays for a few months or so. It's all over the place sometimes I have a weak, aching pain for 6 months, sometimes I have sharp, shooting pain for 3 months. It can act different in someways, but I can tell that it's the same thing by the way it just "turns on" and makes my body hurt so bad. It is certainly something because it is extreme pain and moves to different joints (shoulders, hands, wrists, knees, hips, spine). I have other symptoms-fatigue, body weakness, eye pain, popping/clicking joints. Anyway, the point is that the doctor said it sounded more like celiac because of the way it comes and goes, but I don't have stomach issues. I told him that, but he said some celiac sufferers don't. He said the disease is very different for everyone. I also asked how this could be celiac when I can go let's say a year without this pain/other symptoms and then suddenly this, whatever it is, turns on and goes for a few months. Why would this pattern occur when I eat gluten everyday? He said that sounds like celiac turning on and off and acting all crazy like that, but now that I am reading all your posts that's not at all what it sounds like. I hear everyone talking about constant stomach issues until they stop gluten. Dr. did a genetic test and it did say I have the genes for gluten, but he said they need to do further tests. He said the next tests have alot of false negatives, so he said even if it's negative I should do the gluten free diet. I have no problem going on this diet, in fact I'm just so glad if I can just quit gluten to relieve this horrible pain because my previous diagnosis was not hopeful like this. The truth is, I am looking for answers because I don't want to get my hopes up that there is now a "cure" to my pain. If anyone can relate please let me know, or if anyone knows anything more about these tests let me know. I am waiting to hear back, but I feel like he said if it's negative it doesn't matter, so I need to figure this out on my own. I will do the diet for 2 months no matter what, but Idon't want to count on this fixing my pain if no one out there has my symptoms and maybe the doctor is way off on me.

[beachbirdie]

The truth is, I am looking for answers because I don't want to get my hopes up that there is now a "cure" to my pain. If anyone can relate please let me know, or if anyone knows anything more about these tests let me know. I am waiting to hear back, but I feel like he said if it's negative it doesn't matter, so I need to figure this out on my own. I will do the diet for 2 months no matter what, but I don't want to count on this fixing my pain if no one out there has my symptoms and maybe the doctor is way off on me.

I'm in love. Your rheumatologist is a dream.

You might want to give it a little more than a couple of months. Some people have a longer recovery time than others. And if they are doing more testing, DO NOT stop eating gluten.

Yes, your symptoms COULD be celiac related. Also, have you had a good thyroid check? TSH, Free T4, Free T3? I get a lot of arthritic pain when my thyroid goes out of whack.

[bartfull]

Your doctor is right that not all Celiacs have digestive symptoms. There are some folks on this board who were shocked that they have it. I myself never had much in the way of digestive symptoms. Mine is skin related, along with brain fog and insomnia. I also have unexplained, undiagnosed jaw pain and swelling that only comes on when I have been glutened (or corned - I also have a bad intolerance to corn.)

I believe the joint pain that some Celiacs suffer takes longer to clear up than any digestive symptoms so BeachBirdie is right, you should probably stay gluten-free for longer than two months. But I'd be willing to bet that other symptoms that you never even thought of as symptoms will clear up so you'll be glad to stay gluten-free.

[lclw]

Thanks to both of the replies. I thought the symptoms were not at all like Celiacs, but it does now seem it can vary. I wonder if it might help with the psoriasis too. My psoriasis also comes in flares, but when it turns on it really turns on head to toe. It's horrible. If I am sensitive to gluten I bet it will slow that down too. I don't want to get too excited.
How did you figure out about the corn?

Your doctor is right that not all Celiacs have digestive symptoms. There are some folks on this board who were shocked that they have it. I myself never had much in the way of digestive symptoms. Mine is skin related, along with brain fog and insomnia. I also have unexplained, undiagnosed jaw pain and swelling that only comes on when I have been glutened (or corned - I also have a bad intolerance to corn.)

I believe the joint pain that some Celiacs suffer takes longer to clear up than any digestive symptoms so BeachBirdie is right, you should probably stay gluten-free for longer than two months. But I'd be willing to bet that other symptoms that you never even thought of as symptoms will clear up so you'll be glad to stay gluten-free.

[IrishHeart]

Before you start worrying about other food intolerances, let's see if you have a gluten issue first, okay?

Silent celiac means no overt gastro symptoms. But, it is still celiac and your gut would still be damaged.

Your joint pain and psoriasis are consistent with gluten and celiac.


Take a look here and see if you have other symptoms you may not have associated with celiac:

http://www.curecelia...SymptomList.pdf

I would suggest you have the Celiac panel done before you start the gluten-free diet.

Would your doctor be open to having you scoped and biopsied too, by a GI?
Because... usually, the silent celiacs have the worst damage (ironically)

Your rheumy is very celiac-savvy, so kuddos!!

Even if you are NEG on both tests, you can still go gluten-free. You cannot imagine the number of people who test negative, but go gluten-free and feel relief from horrid symptoms!
(this means you are NCGI)

And ...welcome to the forum!

[lclw]

How do you know so much? You made me feel better about that poor doctor. It just didn't seem to match, but I'm glad he checked. If it all turns out to be gluten he will be my best friend because I have suffered a long time. As I understand the genetic test was positive, but we are still waiting on the other ones (probably what you said - panels). I wonder what's the deal with the genetic test. It doesn't mean I have it for sure? It's almost like, what's the point of the tests if they aren't accurate? I will do the endoscopy if necessary, but it will be costly for my family with our very high deductible.

Do you feel free to eat other things like milk and sugar as long as it's gluten free? I guess you're right, I should just exclude gluten for a few months and if I feel better it's just that, if not I should take out more foods.
Thanks for all the knowledge!

Before you start worrying about other food intolerances, let's see if you have a gluten issue first, okay?

Silent celiac means no overt gastro symptoms. But, it is still celiac and your gut would still be damaged.

Your joint pain and psoriasis are consistent with gluten and celiac.


Take a look here and see if you have other symptoms you may not have associated with celiac:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

I would suggest you have the Celiac panel done before you start the gluten-free diet.

Would your doctor be open to having you scoped and biopsied too, by a GI?
Because... usually, the silent celiacs have the worst damage (ironically)

Your rheumy is very celiac-savvy, so kuddos!!

Even if you are NEG on both tests, you can still go gluten-free. You cannot imagine the number of people who test negative, but go gluten-free and feel relief from horrid symptoms!
(this means you are NCGI)

And ...welcome to the forum!

[IrishHeart]

IF you want a celiac diagnosis, have the tests done.

If you do not care, just go gluten-free.

Some people desire a DX for a variety of reasons.

Here is how celiac is Diagnosed. (The genetic test is often used more as a measure to "rule out" celiac disease.)

Here, read this:

http://www.csaceliac...iac_disease.jsp

[GFinDC]

HI there LCLW,

Welcome to the site!

I wonder if your psoriasis is related to DH (dermatitis herpetiformis)? You might want to do some searching on that or read the forum section devoted to it. DH is a rash that only people with celiac get. It causes itchy blisters. They can test for4 it by doing a biopsy of the skin next to a blister (lesion).

Your joint pain sounds like a celiac related thing to me. I had joint pain that would come and go. Mostly had it until I changed I my diet though. Then it became more random. It finally stopped when I went off soy and nightshades and started taking thyroid pills. It was more than one thing that caused my joint pain, so I would react seemingly randomly when I ate those things. It wasn't gluten that caused it, it was other food intolerances that I'd developed because of celiac disease. Your doc sounds pretty smart. The first stage of celiac disease testing is to get blood drawn for the antibodies. Ask for the celiac panel. The antibodie tests are not 100% reliable though so it makes sense to do the diet anyway, at least for a while. The endoscopy is not 10%$ reliable either so it's a good question if it makes sense to proceed with it. A really reliable test that beats both of them is to go strictly gluten-free and eat only whole foods for 3 or 4 months. Avoiding dairy, soy, alcohol, and possibly nightshades, (tomato, potato, peppers, eggplant) may help. The test is called the gluten-free diet. An elimination diet can help you identify the other foods that may cause problems. Going gluten-free is a good test if you have symptoms that improve depending on what you eat or don't eat that is. It's free too but you won't get a "formal" diagnosis form most doctors that way. Some people really need that formal diagnosis, others don't care. Some docs will diagnose based on positive blood antibodies and symptom improvement though.

Here's some links for starters.



FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

How bad is cheating?
http://www.celiac.co...t-periodically/

[Mom-of-Two]

I am currently going through a celiac diagnosis process with my almost 8 year old child, whose only symptom is joint pain. We only had her tested though because I discovered I have celiac 6 months ago, as she had no celiac symptoms, her pediatrician suggested having her screened just due to the genetic factor. We were pretty shocked her numbers came back elevated....my celiac dr states that joint pain is a HUGE celiac symptom, even in the absense of other GI symptoms. Remember that MANY MANY people have NO symptoms at ALL! They find out for some other thing like vitamin deficiency, or being screened because a family member finds out, etc. Also, many of these asymptomatic people have severe damage to their intestines! It is believed that many people who have "silent" celiac have the most damage, aka villious atrophy. It's an odd phenemenon!

Absolutely get some celiac bloodwork, but if negative, try gluten free diet and see how you feel. I am a big believer in gluten causing inflammation and those with arthritis or other inflammatory issues may find relief in that elimination (not all). My husband has psoriasis, has had it for about 10 years (just came about, as many autoimmune issues do). They also believe him to have psoriatic arthritis, but it's pretty managable. He too was tested for celiac, he had all normal results and ironically I was the one who ended up having it even though I have no other health issues!

He actually went gluten free when I did, 5 months ago, but has not seen an improvement in his skin at all, however we know it can take much longer to see the benefits of that sort. We are still hopeful it will help his psoriasis and joint pain.

I would also encourage you to read the book Wheat Belly- it was very eye opening!

Good luck to you!