Rheumatoid Arthritis Or Something Else?

[LookingforAnswers15]

Hi,

 

Hope someone can help me. I have spent this whole August trying to find doctors and get them to do tests. I truly don't understand why some of them even decide to become doctors when helping patients is not even their priority. However, they are great at charging you for nothing.

 

I was sent to a neurologist who is obviously not knowledgeable about celiac because he said that not much is known about celiac and it does not cause neurological symptoms. After charging me for 2 visits,  he said it was psychosomatic and just wanted to give me antidepressants. I told him I was worried about MS and other autoimmune diseases but he was not concerned about anything. I convinced him to send me to do an MRI, which came back with no signs of MS, thanks God. But the issue of horrible migraines that can last for days was unresolved as well as the fact that the left side of my neck hurts while my tongue on that side feels stiff as well. So after he just wanted to send me home,I asked him to what about my neck and headache. In the end, once again, I had to convince him to let me do an MRI. The MRI of neck revealed a few swollen lymph nodes on both sides of my neck but more on the left. Based on their size, he said it should not be dangerous but the fact that they are there is not good either and means that something is causing this inflammation. I can't feel any bumps when I am touching my neck and the original ultrasound did not show anything. Wants me to go to an otolaryngologist, which I still have to find.

 

However, starting in May, my right hand ring finger showed some involuntary movements, then in June, my left hand index finger looked deformed. I was taking photos and using that finger, so I assumed it was tired from taking too many photos. It seemed like it was broken and joints did not fit in their places properly. After some time, it seemed ok again. During the last few days, I have noticed loud popping noise in all my joints and my hands seem fragile and hurt. My pinky fingers seem to lean towards the outside, if that make sense. Like my hand is stretching. Left hand pinky leaning towards the left side and right pinky toward the right. Even just looking at my hands, especially the right one, you can see how pinky is separated/sticking from my other fingers. It is so weird and scary at the same time.  

 

Also, sometimes when I eat  (not sure it has anything to do with what but for example yesterday, I ate broccoli and pineapple) and as I was eating I was getting goose bump or sensation like a mild electric current running through my body. Like a low grade fever or as if my body was fighting against what I was eating.I also sometimes have muscle twitches all over my body. They do not hurt.

 

So, I consulted Symptom checker WebMd and they came up with some such as:

-Rheumatoid arthritis

-Carpal tunnel syndrome

- peripheral neuropathy

- Hypocalcemia

 

Does anyone have any experience with this?

 

I was looking up online some photos of RA and it looks similar but I can't be sure. These last few symptoms came up so fast. So, I began immediately eating anti-inflammatory food (broccoli, pineapple, drinking ginger, taking vitamin D, turmeric). I have lost appetite, lost weight, keep losing hair, and wake up throughout the night. Since I had a lot of problems with stomach last couple of weeks with diarrhea (sorry for tmi), which I usually do not have, I was just eating meat and bananas because that was all I could handle eating.  

 

However, I have noticed a lot of people on here talk about peripheral neuropathy and I really do not know if this could be it. I don't know much about the other two.

 

I am assuming that my gluten antibodies are still over 100 (they were 110 in June). When I was diagnosed last year they were 220. Not sure if this is affecting everything. I am super careful about not eating gluten so it can't be cc.

 

If there is anything that you know that can help me figure out what is going on with me, please let me know. I am worried sick and although I try to hide it from my family, they notice that something is bothering me so they worry too. 

 

Sorry for writing this long post but I really need advice.

 

Thank you!

 

 

[bartfull]

I've been going through the arthritic thing too. My doctor is sure (although I haven't gotten the test results back yet) that I am hypothyroid. He also suspects Lupus because the symptoms are similar. (The wrist and finger pain, thinning hair, fatigue, etc.) I do have a perfect red triangle on my forehead and thought it couldn't be lupus because it isn't across my cheeks, but he said it could very well be.

 

The thing that scares me most is he thinks I could also have psoriatic arthritis. I do have psoriasis on my hands and feet and they say 30 percent of people with psoriasis will develop psoriatic arthritis. Do YOU have rashes? Psoriatic arthritis will deform the joints the same way rheumatoid does, and perhaps worse.

There is a test they can do to rule out rheumatoid. The tests for lupus and psoriatic arthritis are not so definitive. Basically they rule out other things and make a guess.

[LookingforAnswers15]

Hi Bartull, 

 

thanks for responding. I am really not sure. When I was admitted to the hospital last year (they diagnosed me with celiac then), they said they tested me for lupus and it came back negative. However, I am not sure if something has changed since then. They told me my thyroid was ok but I really do not know which tests they ran.

 

Sometimes, I have some rash on my neck,not much but tiny red dots that itch. I think they mostly show up when I eat gluten free snacks (So I stopped eating them). I do not think it is psoriasis from the photos I saw quickly after I read your post.

 

RA also looks terrifying. Apart from experiencing pain, photos of hand deformities online look horrific. Three years ago, I would have never imagined I would be dealing with any these issues now. Every time when I think, ok, maybe it is getting better, something else comes up. At this point, I am just praying for the lesser of 2, 3 or 4 evils. 

 

Good luck Bartfull! I really hope that you figure it out soon and find something to help with the symptoms. Will he run all these tests for you? 

[bartfull]

My doctor is one of the few really good ones - most only run the TSH for thyroid even though to not miss a diagnosis they should also run the free-t3 and free-t4. I din't even have to ask, he ordered all three. See if you can get your test results (for all of the tests) and post them here.

 

The only tests I know of for lupus are tests for damage to kidneys and other organ damage. But there is a difinitive test for RA. If your doctor won't test for that you should see a different doctor. They use THAT test to rule it out and that is another thing that could lead them to diagnose lupus.

 

There are several different types of psoriasis that all look different but it doesn't sound to me that thati is your problem.

 

My doctor also ordered a sed rate which measures the amount of inflammation in the body. He already knew from feeling my wrists and fingers that there was a lot. But I guess that will help him to figure out what is wrong.

 

Now, just to ease your mind a little, I have a couple of friends with pinkys that are bent and neither of them has any type of arthritis. It's some tendon thing and none of their other joints are affected at all. Here's hoping that is what's going on with you.

[LookingforAnswers15]

Hi Bartfull,

 

My only hope is this imunnology doctor that I will get to see next week who is in a different hospital. I had to get a new insurance to see the previous doctor who seemed to be quick to tell me to take antidepressants instead of running some expensive tests they were able to do (such as an MRI but I insisted on getting them). I think this was also because the doctor was not as knowledgeable as he should be about celiac. However, they were not able to do vitamin D, immunology tests, food allergies, etc. Of course, when you are getting the insurance they promise everything and then you realize that tests you really need they do not have. I really do not need to go and pay for someone to tell me there is nothing wrong with me without running any tests. So, I began searching for other doctors.

 

I am glad to hear that you have a great doctor. They are truly hard to find. How long do you have to wait for the results? I really did not know how they tested for lupus. I wonder if they only tested my kidneys since they were the reason why I was admitted to the hospital in the first place. So, apart from lungs and kidney, what are the other organs that they test?  I did the ultrasound of lungs and abdomen recently and they said it was ok but again, not sure if that is enough to show something. Thank you for telling me this. 

 

I might need to do that sed. rate as well then. Once again, did not know about that either. 

 

Question: would dexa test tell me anything about arthritis? It is done on legs and abdomen to check for osteoporosis I think but not sure if it also can tell something about arthritis.

 

Thank you for trying to ease my mind. I really do not know what to think anymore. It is stressful! Playing a doctor is not a fun thing to do (although I am sure that the neurologist who showed no interest in me labelled me a hypochondriac because I was asking questions) but there is no other option when you see that you cannot trust some doctors. After three years of going to the hospitals and complaining about stomach problems, which doctors claimed to be nothing, I needed to get so sick and dehydrated for them to look carefully at me. At that time, I had never heard of celiac. I read somewhere on this forum about a guy who became a doctor after his problems with celiac. I think that so many of you easily know so much more than some of these doctors. I even knew more than that neurologist and I do not know as half as much as some people on here.

 

Thanks again for all your suggestions Bartfull. I hope both of us get the best results we can.

[ravenwoodglass]

Can you get a referral to a rheumatologist? If not maybe your doctor can order x-rays of your hands to look for the damage that would be found with RA. As Barty said it could also be a tendon issue. Whatever it is I hope you get some relief soon.

[LookingforAnswers15]

I am not sure what this new doctor will say and where she might refer me to but it is good to know to ask. Thank you Raven!

[Celiacandme]

Since you were diagnosed last year remember your body is still adjusting and working on the healing process. Celiac disease can send inflammation to all areas of your body. I hope that the inflammation you are experiencing is caused by this. Are you eating dairy? Let us know how it goes with the immunologist this next week. A rheumatologist, like ravenwoodglass mentioned, would be a good doctor to see to rule out some of these other autoimmune diseases. We are thinking of you!

[nvsmom]

I had pretty bad inflammatory arthritis symptoms in my hands which continued well into my first year of eating gluten-free and still pops up now and again. It was painful to the point where my hands did start to look funny but there was no actual deformity in the joint - I just couldn't move it well so it tightened up and atrophied some.  My hands were Xrayed and there was no sign of joint issues from RA, lupus, or OA.

 

Hopefully this will improve for you as time goes on. (hugs)  I agree that seeing a rheumy could be healpful, just in case.

 

Hang in there.

[LookingforAnswers15]

Hi all,

First of all, Celiacandme and Nvsmom, I am sorry for not responding sooner.

 

Celiacandme: it has been awhile since you posted and I actually wrote you a long message and instead of posting it immediately, I got distracted and wanted to look up something and instead accidentally closed the window. I was so mad at myself. Since then I have dealt with some doctors and I have not been posting. Thanks for your advice. I stopped eating dairy at first but added it later. It has been 3 weeks since I stopped it again. I think I will of to the rheumathologist but I am waiting to get some of these other tests including rheumatology factor. I am an emotional eater so when I was feeling pretty down and not feeling well (around May-June), I indulged in gluten free cookies and other gluten-free snacks, which looking back, might have added to inflammation in my body.

 

Thanks nvsmom! I really appreciate it. When I am worried about something, I sometimes shutdown. I have been playing a doctor for some time now and I am physically and mentally exhausted. I am yet to meet a doctor who understands that these neurological and physical issues are either from celiac or other autoimmune disease. My family probably thinks I am exaggerating because these doctors are saying that I am just stressed and unhappy. I am sure they would be unhappy if they felt like I do and those who are supposed to help you brush it off as if I am just making it up. So, I just stopped talking about all of this to some family members. Maybe it is easier for them to convince themselves that it is all in my head than to think of all these scary symptoms and I cannot blame them for that. I do know that they care about me so I have to try to understand their side as well. We all deal with fears in different ways. I am trying to drink different types of tea, I stopped eating anything that could possibly be causing this (eggs,dairy,potatoes,sugar,coffee,gluten free products, soya,etc). It is easier to say what I am eating (chicken breast with olive oil baked with carrots, cabbage, onion, or cauliflower), fruits such as (pineapple, apples, bananas, cantaloupe, berries). These are all supposed to have anti-inflammatory effect.

 

Unfortunately, I had to take antibiotics last week. I went to see an otorhinolaryngologist and he said I had to take them because he saw some inflammation in my throat. After asking at the pharmacy if there were gluten free, they said they were, but I know now they were not. I got some small rush (maybe eczema) on my right eyelid and I had to use bathroom more. 

 

I just feel defeated so that is why I shut down. I know that people here understand what I am going through and I really appreciate that but writing about my problems just made me further think about them. I still spend time reading online but instead of looking up symptoms, I focus on finding anti-inflammatory diet. Thank you all for being there. I can see how much support some of you offer to all of us and I feel bad that I don't do the same as much but I still feel that I am not knowledgeable enough to offer advice. I hope that once I "calm down" my body and figure out what is happening, that I will be able to pay it forward better. In the meantime, I hope that at least my questions, things that I have noticed and your advice help others in figuring out their issues. Thank you again!

[nvsmom]

I almost think being told that it is stress or all in your head should be a celiac symptom... It's a pretty common experience.

 

Best wishes.

[weluvgators]

I just wanted to say that I appreciate your posts and sharing your experiences.  Thank you!  We have found rheumatology to be one of the more helpful disciplines when sorting through some of our more complex issues.  And the rheumatologists for us were not all bad news, but they have seemed better able to understand and help us cope with some of our symptoms.  I hope you are able to find doctors to help you.

 

Sorry if I missed this, but has anyone checked your vitamin B12 status (this one can be a bit tricky, as it was for us)?  Do you have a primary doctor managing your celiac diagnosis and recovery?  It would be good to have a standard panel to check for any nutritional deficiencies that could be supplemented to help you recover more quickly.  I understand what a long, hard, and painfully slow, bumpy road a celiac diagnosis can be!  I hope you are feeling better and a bit less defeated soon.  I hope your latest doctor appointment had some positives come of it.

[LookingforAnswers15]

Hi,

nvsmom- I agree with you! It is easier for doctors to assume that we are just unhappy than to actually look at us. When you tell them that you have no reason to be unhappy (yeah, I have this disease but I accepted it and don't even think about all the food that I cannot eat). Not once have I cheated since I have been diagnosed.Then their answer is: well, stress still happens and we feel pain that is not there.

 

weluvgators - Thank you! B12was in normal range but on the lower end. Unfortunately, I did not have a primary doctor until recently and the one I got, unfortunately, does not seem to know much about celiac at all. She was not even considering other autoimmune diseases when i was telling her my symptoms. I am looking for a rheumatologist right now but I will wait to see one until I get my results back. I wonder,  would any type of arthritis somehow show on dexa scan? It was taken of my abdomen and legs if i remember correctly. It was ok but I am wondering about my hands.  I need X-ray of my hands so i will try to get that done.

 

Thank you again for your support.

 

[bartfull]

Try the raisins! Try the raisins! Hallelujah! Try the raisins!! https://www.celiac.com/forums/topic/112558-unbelievable/

[LookingforAnswers15]

Hi Bartfull,

 

I will. Thanks! I just need to find gluten-free raisins first =). Since I have been diagnosed, I only occasionally drink wine. This may sound as a very dumb question but is there a particular brand of gin to look for or they are all gluten-free?

[bartfull]

You need to use golden raisins. I use Sunmaid but if you're worried about CC you can get some certified gluten-free ones online. The gin has to be real gin, not the cheap stuff that is only flavored. I use Beefeaters. They say Tanqueray or Gordon's is good too. 

[ravenwoodglass]

Looking if your B12 is on the low end of normal you may want to consider taking a sublinual B12 for a bit. What ranges was your doctor using?  It used to be thought that 250 was the bottom of normal but it has been raised to 500 from what I understand.

[LookingforAnswers15]

Thanks Bartie and Raven!

 

I looked up my B12 again and it said:

 

B12-Cobalamin: 347 (normal range being 211-911). I was tested on August 3rd.

My other test from April 2015:

B12.S.P.-195 (normal range 141-489).

 

I really do not get why the doctor that diagnosed me would not tell me to take any supplements. I should have immediately started taking them regularly but since they said no reasons to worry I just occasionally took B12. 

 

I will start regularly taking B12 asap. Thank you!