Differential Diagnosis

[dancingmama]

I have a whole slew of appointments in the next few months to figure out what is wrong with me. I'm really worried about seeing the neurologist for the MRI in case this is something neurological. (I've been having muscle twitches and headaches). Aside from that I have an appt. with a psychiatrist for anxiety and a rheumatologist for the joint/muscle pain (also worried about RA or Lupus). 

Anyone else see many different specialists before being diagnosed? Was anyone also screened for MS or another neurological problems because of their symptoms? 

[cyclinglady]

Here's a link to a blog site maintained by a  doctor who has celiac disease.  Jebby, occassionally posts here on Celiac.com.   It's a blog, but it's a start for your research into gluten ataxia (another form of celiac disease).  This is a pretty new area of celiac disease, so there's not a lot published.  

 

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I can tell you first hand that anxiety is common with someone who has celiac disease.  I blamed going through menopause, but it really was celiac disease or at least a combination.  All that resolved when I healed.  I finally got the nutrients my brain and body needed!  

[nvsmom]

I was convinced that I had lupus when my fatigue and arthritis did not improve immediately on the gluten-free diet.  And there has been more than one person around here who had the white spots on the brain typically seen on an MRI from a person with MS, but it was celiac disease related and not MS.

 

There are over 300 symptoms and related disorders to celiac disease, very few of with are gastrointestinal based.  If you do have celiac disease, it could definitely be causing the bulk of your problems.

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Good luck with the testing.

[kareng]

I am not sure the people who were told they might have MS are still on ( I don't remember who they are) but there were several. After their Celiac diagnosis - no MS! Weird.......

[ravenwoodglass]

I was thought to have MS. I had UBOs (unidentified bright objects) on the MRI. When a spinal tap was done there wasn't the debris that they find in MS so my clueless neuro said the UBOs were something lots of folks had and they meant nothing. I just wanted to be sick. Here's a prozac. At that point I couldn't walk unaided and couldn't tell you a fork was a fork if you heald it up in front of me. 

It would be a couple years before I was finally diagnosed celiac and was able to begin healing. 

Be careful with any drugs the psychiatrist may prescribe. My doctors at first prescribed newer drugs that were for treating the combo of depression and anxiety and some of them made me much worse. In my case the older anti-anxiety drugs at a much lower dose than prescribed we what worked for me. Not saying this will be the case for you. 

You may find after you have had a chance to heal from the celiac that a lot of stuff you are being referred to specialists for resolves. It isn't a quick process but most will have things like joint and muscle pain, headaches (I haven't had another migraine since shortly after diagnosis) etc heal. Doctors just can't get it through their heads that celiac is a whole body, autoimmune disease that does not just impact the gut.

Do make sure they test your vitamin and mineral levels. Especially your B12 level. Low B12 can cause those twitches and other difficulties. Make sure when they check it they are going by the newer low levels of 250 not the old one of 500. 

[greenbeanie]

I do not have a clear diagnosis (still), but I went through many of the same rounds of specialists and tests. My MRI was mostly normal, but I was walking into walls and falling down stairs almost daily because my balance and depth perception was so bad. I was hospitalized and they thought it might be MS for a while, but then decided not. I had classic celiac symptoms going back to childhood, including daily diarrhea and stomach pain, plus an incredibly itchy blistering rash that started on my elbows when I was a kid, and awful insomnia for decades that even prescription medication didn't help. My celiac tests were negative (after a six-week gluten challenge, having not eaten wheat daily for about 15 years before that). My daughter has biopsy-diagnosed celiac, and most of my symptoms are almost identical to hers. I strongly suspect that my celiac tests were false negatives, but I'll never know for sure. I had constant tingling in one leg for about ten years, and my muscles twitched all the time. I had that feel-like-you're-suddenly-falling-when-you-go-to-sleep thing very frequently too.

I went strictly gluten free at the same time as my daughter, almost two years ago, and all my symptoms went away or dramatically improved within six months! The neurological stuff was the scariest, but after about four months I suddenly realized that I hadn't walked into anything for a while, which was amazing. A member of this forum recommended magnesium, and I couldn't get my doctor to order systematic vitamin and mineral tests after the negative celiac results, but I went back through my old medical records and found that I'd had low magnesium and potassium when tested in the ER several years earlier. That's not surprising given decades of diarrhea (from any cause), of course. I started taking magnesium daily, and the leg tingling was gone within weeks! The night twitching rarely happens now, my insomnia is gone, and in general I'm a much calmer and happier person. I'd been lactose intolerant since I was a teenager, and that also went away after about ten months gluten free.

I hope you're able to figure out whatever is going on soon. A lot of celiac symptoms can mimic other things, which is frustrating. In my case, I did have obvious bad reactions to wheat and barley malt, and despite the negative tests there's no question that gluten was causing my symptoms, whether it's celiac or a severe non-celiac gluten intolerance. Anyhow, my point is that medical tests aren't perfect, and the neurological stuff in particular is difficult to sort out. The two neurologists I saw never even mentioned the possibility that my symptoms might be related to diet. I hope you get a clear answer after all those specialists - but even if you don't, don't give up! While frustrating and time-consuming, in the end you might still find a solution by trial and error even if the doctors can't figure out what's going on.

[cristiana]

My own nutritionalist actually saw someone who had been told she had MS and, being a very well-read and informed nutritionalist, just happened to ask this lady if she had been tested for celiac disease.  Apparently she hadn't - and guess what, it was celiac disease all along! 

 

In the last decade or so have had four MRI brain scans but they have all been clear.  One of these post-DX and being gluten free.  Yet,  I still sometimes have twitches, tingling, buzzing, brain fog.

 

My theory is that this happens more when I have taken my eye off the ball a bit with my diet - not taking enough trouble to make sure there isn't any cross-contamination; not eating really good quality nutritious food or not taking my supplements (B12 and magnesium are really worth looking into, as mentioned above).  To top it all, all these health tests haven't helped on the health anxiety front, which doesn't help the pains, tingles and twitches that I honestly think many people wouldn't take much notice of.  In my own case, on days when I am least focussed on these symptoms I fell much better!  When I have more time to think about them I feel far worse.   Obviously, everyone is different but I really think for me the anxiety plays quite a part in exacerbating the pains, twitches and tingles.

[Celiacandme]

Because of my symptoms they also questioned MS with me. The symptoms included neuropathy in my legs. I also have an aunt with MS so between my migraines, neuropathy, heaviness in legs they wanted to rule it out. The neurologist told me that celiac disease could cause my symptoms but he said "However, I don't want to wait a year or a year and a half to find out the issues aren't resolving. Let's get a MRI both regular and with contrast." Luckily MS was quickly ruled out. I have heard of this issue several times with celiac patients.

 

As far as rheumatology - did your GP run an ANA test on you? Was that positive? Is that why he is sending you to a rheumatologist? (Besides your symptoms, which celiac could also cause) I was diagnosed with a rheumatology disease 4 months after my celiac diagnosis but I do wonder about it and I wonder if that will improve or if I'll have remission the longer I'm gluten free. Perhaps that is wishful thinking but so much of this is based on inflammation in the body so perhaps it is possible.

 

If you have celiac your body needs a lot of time to heal. Many do walk away with more than one diagnosis but some do not. Try to breathe and do something that is relaxing for you. Take time for you each day. Keep us posted. I hope you get your answers soon and can be on the way to feeling better!

[michelley65]

  On 4/28/2015 at 9:11 PM, dancingmama said:

I have a whole slew of appointments in the next few months to figure out what is wrong with me. I'm really worried about seeing the neurologist for the MRI in case this is something neurological. (I've been having muscle twitches and headaches). Aside from that I have an appt. with a psychiatrist for anxiety and a rheumatologist for the joint/muscle pain (also worried about RA or Lupus). 

Anyone else see many different specialists before being diagnosed? Was anyone also screened for MS or another neurological problems because of their symptoms? 

I have been seen by a neurologist due to migraines since I was 11..now 49,also seen a phsycologist foe depression,and had an MRI ...and was tested for RA...I have severe muscle and joint pain. I sometimes get the twitching at night while lying in bad,but its not constant.I don't know if its all related to gluten or not. I guess they just have to rule out everything...good luck to you.

[dancingmama]

Thanks everyone! I really appreciate the encouragement! I think this is all made harder by the fact that I'm not obviously sick, however, I know *something* is off with my body. I feel like people that haven't been through something like this don't take it seriously. For the most part my husband is supportive but sometimes I think even he thinks this is all in my head. 

No, I haven't had an ANA. My GP pretty much won't do any tests outside of blood panels (which I've already had). I did have bloodwork for general inflammation done by my thyroid doc and it came back normal. I emailed my thyroid doc today to ask if he can run the celiac blood panel for me. He's VERY nice and has always gone out of his way to help me (like with ordering the CBC and inflammation tests). He is truly one of those docs you are thrilled to have on your side. However, I'm not sure if he can order specific tests like for celiac because of insurance reasons. We will see. I'm crossing my fingers he can get me in for that soon. That way I won't have to wait till July.