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Hi! Over the past year I have had several health issues arise. It started with a bout of bronchitis with asthma like symptoms that required me to get steroids. This was new. Two weeks later I was diagnosed with anxiety disorder, panic disorder and PPD. A month later my geographic tongue showed up. Another month later I   got another infection (two rounds of antibiotics) and then ended up with pink eye - another first for me. Within a couple months, I was suffering from severe joint pain, muscle aches, occasional muscle twitching, hair loss, menstrual cycle was long and heavy and constipation. I finally went to see my OB about my menstrual cycle and severe PMS symptoms. By this time weight gain and severe fatigue were issues for me. He tested my thyroid and I was diagnosed with hypothyroidism. During this time, I started having some weird stomach problems. There times I would eat and have severe stomach pain. The first time lasted 3 days (but i figured out it was some baked goods that were causing it). Within in 3 weeks of being levoxyl I felt tremendously better except that the muscle pain still lingered, the twitching was getting worse. My anxiety and depression kicked in full force, I still had brain fog and then the numbness and tingling showed up. The parathesias happen in my feet, legs and hands. I often wake up with numbness and my arms asleep during the night. I also get a weird vibrating feeling sometimes as well. My doc tested my vitamin D and B12, I was low in both. She put me on supplements. I started getting diarrhea for a week at a time. The twitching and muscle pain were also getting worse and the tingling varied in intensity but never went away. I continued to complain to her that something was not right and she told me it was just my anxiety and that it was in my head. If l looked up panic disorder I would find all of these symptoms. Two months later, I finally changed doctors. We did an MRI and it came back clear (not a single lesion.) This still doesnt completely rule out MS but a negative MRI is still good. I started doing more research and found that all of my symptoms (Including ones like geographic tongue)  could all by attributed to Celiac disease. I started doing more research and found that there is a strong relationship beteween celiac, hashimoto's and RA. RA and Hashimoto's runs on BOTH sides of my family. My mom has RA. I have two aunts with RA and Hashimoto's and an aunt and Grandma with Hashimoto's. THEY ARE ALL SENSITIVE TO GLUTEN. But not one of them has been tested. My mom has severe digestive problems and has said that eating bread seem to trigger an RA Flare. My brother who is 17 also has severe digestive issues. My new family doc is treating my hypo thyroid and my numbers are in the normal range (TSH is 1.04 Free T4 and Free T3 are both in excellent ranges too). However, this did not resolve the muscle twitching, numbness and tingling or brain fog. The muscle twitching had progressed to where I had a twitch over my eye that twitched multiple times a day. In addition, my digestive problems have gotten worse. I have had loose stools and D almost constantly. My new doc did do the Celiac panel but all it tested was IgA serum. And it did not show anything. I have an appointment with neuro in one week. I know it is not recommended. But I went gluten free about a week and half ago. The muscle twitching has decreased and my eye twitch is gone. However, the numbness and tingling became worse 3 days after going gluten free but has mellowed out again but definitely still present. I have not had stomach pain once and while I still have D it is also mixed with regular bowel movements as well. My anxiety is still present but far less severe (my moods feel more balanced). My energy and concentration all seem better and I am finally able to stay up until 9 pm (which hasnt been happening in months). And for the first time since i dont know when, I have woken up before my alarm clock two days in a row. I know neuro symptoms can take a while to start healing. Im frustrated with doctors and Im tired of not feeling well. I know a diagnosis is important but Ive already been on this journey for a year and I just want to feel better. I am still worried that numbness and tingling is MS and not celiac but my other symptoms have improved going gluten free and what are the odds I had three autoimmune disease all show up at exactly the same time? I honestly dont expect much with the neuro. I am hoping to find people like me with similar stories or symptoms. I honestly believe that the gluten theory is going to be an uphill battle. I honestly believe that my mom suffers from it but she wont get tested. I feel like if she tested positive it would provide doctors with something to really back up my theory. 

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The serum IGA does not test for Celiac antibodies.  There was likely at least 1 other test done with it.  You might want to get a copy of the tests done before you get too far into gluten free.  You neeed to be eating gluten for the tests to be accurate.  

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3 minutes ago, CristinaH said:

No, I double checked my lab results which I have access to but the only thing that was in fact tested was the IgA serum. No additional tests for celiac were completed. They did do an RA factor and an ANA but those were looking for RA. 

That is not a test for Celiac disease, so your doctor didn't order a Celiac panel.  All that test does is make sure you are able to produce the stuff that is tested for in a Celiac IGA test.  

 

Here is some info about testing to show the doctor. Most labs have a thing called a "celiac panel" which contains several blood testss for Celiac.  Your doctor can order that.  

http://www.cureceliacdisease.org/screening/

 

 

Edited by kareng

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Hi!  

I would strongly urge you to get back on a gluten diet and get tested.  It is great that you suspect an issue with gluten (and you are probably right), but later, you might doubt yourself.  Because you have Hashi's, I would recommend a full celiac screening, because I test negative (I have Hashi's too) to the standard screening TTG IgA and IgG.  I confess that no one knows why I test like I do.  

A diagnosis, if you can get it, is helpful.  Helpful to you and other family members.  My hubby went Gluten Free 15 years ago based on poor advice from two doctors.  It worked, but family and medical doubted him.  He refuses to do a gluten challenge.  He is our breadwinner and we can not afford for him to be sick.  Then twelve years later, I was was diagnosed with celiac disease.  We were shocked!  Hubby will be the first to say that I have received way more support from family and medical.  So, if you can get the diagnosis, get it.  

 

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I will try and go back on gluten but I am afraid to. I have seen some improvements in such a short time. I am just so frustrated, I have felt like doctors arent listening and all the while I continue to suffer and get worse. I am married but I am the financial breadwinner in my family. This has affected my marriage, my work. All I really want is to feel normal and be a good mom and wife.  I have a 3 year old and a 14 month old and Im a mess. The doctors treat symptoms and look at me like Im crazy when I try and explain all of my problems this passed year that showed up all at the same time. I do doubt myself regularly but the eye twitch - it went away after two days and hasnt come back when Ive had it every day for over a month. I know its small, but I just dont see how its a coincidence. 

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Hi Cristina, 

I just came across your post and have been dealing with similar symptoms since 2009. (I'm 32 yrs old and have three small children) In a nutshell my legs tingle/burn most of the time. My calves twitch nearly all the time (this a Relatively new symptom that began a few months ago). My symptoms seem to remit during pregnancy and relapse postpartum.  I've had two MRIs, have seen three neurologist and several other doctors over the last seven years. I too, have had clean MRIs and recently have ruled out celiac disease by an endoscopy/biopsy. I have been told I do not have MS and that its "just something I'll have to live with," that its " something science has yet to discover " and that its " just anxiety ." It most  certainly does cause me anxiety and frustration however I feel that my anxiety exaccerbates my symptoms  but does not cause them. 

I too have very low vit B12 and D- there is definitely an absorbtion issue.

I just began seeing a functional medicine Dr that has been highly recommended by friends who have had similar hard to diagnose cases. He feels I have something called methylation defect (80% of people with a geographic tongue supposedly do). Functional medicine is a new thing for me and honestly I'm still skeptical but am also desperate. He has me on a VERY limited diet for the next 6 weeks to reduce inflammation and begin healing my gut with hopes that I can add in more foods later. This is the first time I will cut out gluten and am curious what the effects will be. 

Feel free to email back. I understand your fears and frustrations fully. Would be curious to know if you find any answers or relief in the future. 

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Hi Cristina

Reading your symptoms I felt I was reading about me!

I don't have thyroid issues that they have ever discovered, or geographical tongue, but I have had so much of what you have gone through.

I was diagnosed in the spring of 2013 but prior to that, around the time of the 2012 Olympics,  I started to develop unbelievable anxiety that came out of the blue, iron anemia, borderline readings for B12, tingling in my feet and left calf muscle, and I'd wake up with numb arms and hands all the time; my hair also thinned considerably. Thinking about it, too, I also had a terrible chest infection Christmas 2012, (your post has only just reminded me of it, I'd completely forgotten!) where I was actually coughing up blood. My liver function readings were weird, too. Stomach pains kicked in the Jan/Feb before my diagnosis, then I got diarrhea and lost nearly a stone in a few weeks. 

By the time I was diagnosed with coeliac disease my anxiety was lessening as my doctor had put me on B12 and iron but it took a while to level off, and it comes back from time to time if I get stressed, but thankfully it is usually short-lived.

I've had a few issues mainly nerve related since coming off gluten, but on the whole I feel so much better.  I think my current nerve issues are to do with damage sustained over a long period - I was only diagnosed at 45 - and my theory is that cross-contamination and stress, caffeine and perhaps low blood sugar, are a horrible mix that bring them back from time to time.  (For example, on  holiday last year I had all these contributing factors at play and I felt so much electricity/tingling going through my system I would have been able to illuminate a light bulb!  All the old tingling sites in my leg and feet started tingling again - but stopped a few weeks after the holidays).

Post diagnosis I had nerve conduction tests and the neuro found I had ulnar compression.  It sounds to me that is what you might have? What I can tell you is I still get it from time to time, but it wears off within minutes of moving around in the morning and it us often because I have slept on my arms.  I think gluten damage probably greatly exacerbated the symptoms prior to diagnosis, it is nowhere near as bad now.  I read a paper once explaining Coeliacs are prone to ulnar compression, and carpal tunnel syndrome, but annoyingly I can't find it for you just now. 

I have spent far too many hours trying to get to the bottom of these symptoms on google and I have often wondered about MS, like you, but if you do turn out to be a coeliac, or indeed, have non-coeliac gluten intollerance, do remember that neurological symptoms are fairly common with both conditions.  I have a friend with the latter who discovered gluten was her problem quite by accident, and her neuro symptoms were worse than mine. She is recovering nicely.

Hugs

Cristiana 

 

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Leahv12 and cristiana thank you so much!  Leah I will definitely keep you posted on what they find. I am only 33 years old and I'm so frustrated. Yes, I have anxiety but what person wouldn't when faced with these kind of issues? Cristiana same to you. I am trying to hold back the years right now. I have felt so alone and scared. It is comforting to know that there are others out there just like me. I am  very hopeful that I don't have MS. I just keep plugging away every day. Today was a bad day but I have hope that I can heal. I have not ruled out functional medicine either. I will do whatever it takes to be healthy and whole. 

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11 hours ago, CristinaH said:

the eye twitch - it went away after two days and hasnt come back when Ive had it every day for over a month. I know its small, but I just dont see how its a coincidence. 

Funnily enough my eye twitch, a muscle just below my right eye started again yesterday which along with some other stuff is making me think I've slipped up somewere on the diet. :(

Anyway, lot's of good advice above. One suggestion. Try writing down in advance of your doctor's visit exactly what you're experiencing and what you want - exclusion of celiac. Do it in bullet form, don't put too much detail, just make a small number of well worded and powerful points, reviewing what's happened so far. eg:

  • Diagnosed with hypothyroidism
  • Anxiety
  • Muscle twitching
  • Stomach problems
  • Family history
  • Positive reaction to gluten diet
  • Apparent lack of any gluten testing so far

Then have one sentence which expresses what YOU want from the visit:

In view of the above points I would like celiac testing to confirm or exclude the reaction to gluten. I understand I will need to eat gluten for accurate results and I've already resumed eating it.  

and don't allow yourself to be fobbed off with the doctor citing anxiety as a catch all for everything you've experienced. It's a very simple blood test, doesn't cost as much as the MRI. Be calm but assertive, it's your health and you know more about your own body than anyone. If they refuse get another doctor because as Cyclinglady says, it sounds like you may be on the right track. 

One final point, if once all testing is complete the results are negative, please DO NOT assume that gluten isn't a problem for you. A lot of my neuro symptoms are similar to yours and I tested negative and had negative biopsy too. The good news is that the gluten-free diet resolved a whole load of things, some of which I'd not even realised were symptoms. 

Best of luck! :)

 

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1 hour ago, Jmg said:

and don't allow yourself to be fobbed off with the doctor citing anxiety as a catch all for everything you've experienced. It's a very simple blood test, doesn't cost as much as the MRI. Be calm but assertive, it's your health and you know more about your own body than anyone. If they refuse get another doctor because as Cyclinglady says, it sounds like you may be on the right track. 

One final point, if once all testing is complete the results are negative, please DO NOT assume that gluten isn't a problem for you. A lot of my neuro symptoms are similar to yours and I tested negative and had negative biopsy too. The good news is that the gluten-free diet resolved a whole load of things, some of which I'd not even realised were symptoms. 

Best of luck! :)

 

 

Hi again Cristina

I just wanted to reemphasise what Jmg has said re: don't assume that gluten is not a problem for you, even if your blood comes back as normal.  I couldn't agree more with this advice.  

The other thing is make sure they give you the full barrage of celiac tests. I had the full panel and my gastroenterolgist said that only one of those blood tests was out of range - but it was stratospherically high.  If I hadn't had the full panel they wouldn't have diagnosed me and goodness knows where I'd be now. 

And if you want to make doubly sure, if your blood results come back as showing you are not a celiac you may still want to request an endoscopy where they take samples of your small intestine to see if there has been villi blunting caused by gluten.  My friend had this done in case - and her gastroenterologist was right behind her, as sometimes blood tests show as normal but one can still have intestinal damage.   

Keep us posted won't you.

 

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17 hours ago, CristinaH said:

Did it take a while for the tingling and numbness to go away? (its only been a 1-1/2 weeks gluten free for me and I am not even positive that there has been no contamination etc). 

Yes....years, but your mileage may vary.   Neurological issues are usually the last to resolve.  This is why a diagnosis is handy as it can be difficult to remain gluten free without one (but not impossible).    It can be done though (my hubby has been gluten-free for 15 years without a dx).  

Gluten and neurological issues are still relatively unstudied/unknown.   It is evident from this website that most doctors do not even understand classic celiac symptoms.  

If you test negative, then consider giving the diet a chance for at least six months.  My MIL died from MS.  She actually died from malnutrition.  We will always wonder if she had undiagnosed celiac disease since her son has issues with gluten.  

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Well, I did it. I ate a biscuit this morning. I hate to say it, it tasted really good. I had hoped that it wouldn't. That was about an hour ago. I don't know how long it takes to have a reaction to gluten so I will wait and see. As of about 5 minutes ago, my lower abdomen has started humming/vibrating and I am feeling the beginning of heart burn and there is some burping (I have never really suffered flatulence, always burping). I'll be curious to see how I feel in the days to come as I continue to keep gluten in my diet. I will keep everyone updated on what happens. I see neuro next week. You are supposed to be on gluten (from what I have read) for at least two weeks. So I am not even sure that they would be able to do a blood test while I am there but they could probably put the orders in. 

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Hi Cristina and ((((hugs))))

What a time you've had.  I'm so sorry.  Do continue to eat some gluten every day and take the list of celiac tests to the appointment with you.  I find that if I bring a printed out list like that with me then I'm much less likely to forget to ask for the tests.  

You are not alone in this.  I was tested for MS as well...I don't have it.  I do have celiac and Hashimotos.  I've seen a lot of improvements since going gluten free.  One thing that really helped my tingling was magnesium.  My Dr suggested 200-400 mg a day.  It turns out for me that 300 mg a day is perfect.  The tingling that used to drive me mad has decreased by 80% at least...major improvement.

Finally, keep advocating for yourself!  No one knows how you feel except for you.  Don't let anyone make you feel that it's all in your head...it's not.

((((Hugs))))

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I ate a biscuit in the morning and a french dip for lunch (so the bread and au ju both had gluten). Yesterday afternoon, I had heartburn, lower abdominal pain, bloating, burping and today I have gas. In general, I just felt crappy and heavy. Last night, I was super edgy and irritable. I don't have D yet but I feel like its coming. I was only off gluten for only 1-1/2 weeks so not really enough time I think for my body to completely adjust. However, I had not realized until yesterday how many digestive problems I was having until I didn't have them. This morning I ate a breakfast with no gluten and it was spicy and I have no heartburn. I feel like this was definitely a reaction to gluten but it wasn't as severe as I would have expected based off what I have read about what happens to other people. I also did get some numbing and twitchy's yesterday afternoon and I have it this morning. 

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Cristina, you need to be on gluten longer than 2 weeks for your tests. Maybe since you weren't off for that long it might be okay, but typically it's 8-12 weeks. I had gone off like you for a short time and then went back on for 1-2 weeks and my test came back negative. However, they didn't do the full panel as I had requested, either. Make sure they do the whole thing, not just one or two. I gave up and went back off gluten and felt better. I recently decided to have the gene test done because I didn't want to go back on gluten. I tested positive for two copies of the DQ2 gene and was told my risk was "very high." While it's not a diagnosis, it's enough for me.

 

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Well everyone, I have remained on gluten. Hopefully, gluten testing will be in the near future. However,  The visit with neuro was an absolute complete waste of time. She had already formed her diagnosis before I got there. And her diagnosis was "well your problem is not neuro." She had access to my former family doctors notes, who kept telling me that every single symptom I had was because of anxiety. The neurologist told me most small nerve fiber neuropahty is "idiopathic." When I brought up my thoughts about a gluten intolerance she looked at me like I was crazy. And said that "sprue is VERY rare." (Despite statistics showing it be far more prevalent that MS or Lupus) When we discussed my family history (both sides have RA and hypothyroidism) she said "yeah, you will probably need to see a Rhuematologist at some point." She said it in a way that sounded like a death sentence. There was no interest in prevention at all.  Then she said if I want to have any gluten testing, it needs to be done with my family doctor. Well, my existing family doctor did send me for testing but all he tested me for was Iga Serum. The test is self is labeled "gluten sensitivity panel." So I feel another uphill battle getting him to test me for the actual full panel. There is an ARNP in my town who is independent. So she isn't being dictated to by insurance companies. After speaking with her today she definitely thinks we need to do some more research into what is going on. When I told her all of my symptoms that popped up this year (including my geographic tongue.) She has been the first person to say that there is something going on with my digestive system. The great part, she has access to all of my medical records already except my most recent ones. She has asked me to bring those with me. When I asked her if she needed my full medical record she said no because she forms her own opinions. I was so discouraged yesterday. I have questioned myself every step of the way. I often wonder if I am just hopeful that its a gluten problem instead of something like Lupus or MS. I have been told Im just hormonal, crazy and a hypochondriac. I have been told its just my anxiety and I need to learn to just deal with it. Today is the first time in a long time that I feel hopeful that I have found a healthcare professional who just doesn't want to just medicate me but wants to get to the root of what my problem actually is and is finally willing to look at my medical history as a whole instead of just bits and pieces. This will be my fourth doctor in a year (after being with my family doc for several years.) Maybe the 4th time is a charm?? 

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Sounds like you may finally be on the right track with this new healthcare professional. I hope you finally get some answers. I get so tired of doctors who just write everything off due to their preconceived ideas. My son laughs at my doctor because he says she runs too many tests, but at least she is thorough and tries to figure out the problem.

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Hi Cristina

Well done! So glad you are making this progress - and thank you for the update.  Do keep us posted of your results.

A lot of us have found that the medical profession is not aware of the neurological effects of celiac/non-celiac gluten intollerance.  Here in the UK there is a lot of work going on to inform GPs and in the short time I have being diagnosed I have seen that, thankfully, the message is getting through.  

My advice for the gluten challenge is if your system can handle it, eat what you might miss if you can't eat gluten any more.  I had the most awful headache by the end of the gluten challeng and lost a lot of weight - but I did enjoy those chocolate biscuits!

Hugs

Cristiana

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Lol. I already told my husband that its not a matter of "if" I go off gluten but a matter of when. So I told him we have to do a date night so we can go out for Italian food. We don't have any restaurants where I am locally so we will have to go out of town. But Italian is my favorite and chocolate cake. So I want to make sure I have it at least once and my favorite pizza. But on a more serious note, when I think about the changes that will have to happen, I just look at my two little girls (3-1/2 and 15 mo's) and its ok. Because being healthy for them is way more important than eating my favorite foods. They are the only reason I haven't given up yet. Well, and this forum. Its a comfort knowing that I i am not alone in my struggles. 

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