I'm actually scared to go to the doctor and could use some advice

[Elle1]

I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make.

I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much.

I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc.

I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions:

1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested.

2. Do I ask for a referral to a neurologist or gastroenterologist instead?

3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive?

4. Do I keep driving myself insane with the worry that I have a degenerative illness?

Can anybody identify with any of this at all? 

[rehh05]

Well, if I were you, I would go see your doctor and talk to him/her about all this. 

Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.  

About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway. 

If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results. 

Work with your doctor if possible and if not, maybe find a doctor you can work with.

If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.

[Gemini]

Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned. 

Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone.

B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that.

My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason.

Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.

 

 

[cristiana]

Hello Elle

Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.  

So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is.

I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors!

There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.

 

 

 

 

[GFinDC]

Hi Elle,

The celiac testing process usually includes a blood test for gliaden antibodies first, and then an endoscopy to take biopsy samples of the small intestine to check for damage.  So while it's good to get the celiac panel done, don't go gluten-free until the whole testing process (including endoscopy) is completed.

Vitamin deficits are a problem in celiac disease, so that issue does match up.  Anxiety and digestion problems are common too.  Celiac is tied to a few genes, so if your mom has it, you might have it also or might develop it at some point in life.

Don't be too scared of it if it does turn out to be celiac disease.  The gluten-free diet can be a big change but the end result of it is you'll feel better.  You'll probably end up eating better more nutritious food than most people also.

Celiac is a great disease in one way, because we know the trigger (gluten) and can treat ourselves with diet.  Most times doctors don't know the cause of autoimmune diseases and can't do anything but medicate the patient.  Our medicine is food.  Yum!

 

[caretothepeople]

It's understandable why you're feeling scared. It sounds like you've been through a lot with your health, and kudos to you for staying proactive and trying to seek answers. It can be hard and overwhelming at times, but getting an accurate diagnosis (whether celiac or not) can help bring relief.

If you pursue testing it might be helpful to take a look at some these examples of things to ask your doctor. It can help guide the conversation. With a diagnosis like celiac, which is complex, there is a lot to learn, so don't be afraid to ask questions. That's how you'll figure out your treatment options and make changes that are right for you.

These are from Mayo Clinic and the health information accreditation group URAC

Some basic questions to ask your doctor include:

• What's the most likely cause of my symptoms?
• Is my condition temporary or long term?
• What kinds of tests do I need?
• What treatments can help?
• Are there any dietary restrictions that I need to follow?
• How will I learn which foods contain gluten? Should I see a dietitian?
• If I have celiac disease, will you also test for other conditions such as vitamin or mineral deficiencies, osteoporosis or diabetes?
• Do you recommend medications for me?
• What benefits and side effects should I expect from medications?
• Other then maintaining a gluten-free diet, can I live a normal lifestyle?
• If I maintain a gluten-free diet, can I avoid severe complications from the disease?

I hope these help. Keep us posted here.

[Elle1]

Thank you to EVERYONE for the thoughtful and caring responses to my questions. I can't tell you how much it means to me. Bless you for taking the time to help others through their time of fear.

As stupid as this sounds, I am actually not terribly worried about a Celiac disease diagnosis. I would be happy to know that I can change my diet and make myself feel better, and I enjoy cooking and preparing simple, whole foods and love fruits and veggies, so maybe it would not be as hard to transition for me as it would be for some.

What I fear more are some other diagnoses related to the nerve symptoms I am experiencing. But honestly, all of the research I have done has turned up nothing that more closely matches my symptoms than some kind of vitamin deficiency (like the B12, zinc and D that I have previously been diagnosed deficient in). It may well be as simple as being on acid-reducing drugs for way too long. I just find it kind of hard to believe that can lead to the weird tingling and crawling feelings, and this odd pain on my arm that is the newest and loveliest symptom I have had. It feels like the skin is aching/burning, but I have no visible rash and it does not hurt when touched. I have never had shingles, but I would imagine it feels a bit like this when it first begins.

I wrote to my GP and asked if she can do the Celiac blood test or if I have to go to a gastro. If the latter, I asked for a referral. I will start there instead of a neurologist. But I am ready to start somewhere so I can figure out what's happening here. Mom is getting a Celiac test ASAP too.

I have read that a person can have Celiac but not start to experience symptoms until a stressful event occurs. Interesting that I started having symptoms at the point when I was so overworked and unhappy in my job that I finally began to realize I was going to have to find something else after 16 years. Between that and moving, maybe that has been a stressor.

I have had anxiety and GERD and a benign irregular heartbeat for many, many years. We will see if it's all somehow related :-/

[cristiana]

Hi Elle

I just wanted to add, I too have had that burning pain, in my case it was on the left hand side of my torso, which wrapped round from my back to the front of my ribs in a line.  It went on for months.  I was given various possible diagnoses although my brother in law thought it might be shingles without the rash (he is a GP).  Zoster sine herpete.   Yo may wish to look it up.  Obviously I am not a medical person and can't diagnose online  but it could be worth considering.

That said, continue with your quest to rule out (or rule in) celiac and keep us posted.

Hugs

[squirmingitch]

Make sure both you & your mom get the full celiac blood panel. Here it is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[Elle1]

Thank you, squirmingitch. I'll pass that on to Mom, too. Cristiana, did they ever determine what caused your nerve pain or do you now think it was related to Celiac? That form of shingles sounds awful (well, any form sounds awful - my mom's had it 3 times!) and fortunately I do not think that's what's ailing me.

[cristiana]

Hi Elle.  

To be honest, to this day I am not sure if I actually had zoster sine herpete.  It was one of several suggestions by bewildered doctors.  What I can tell you is that I had to have MRIs  because one doctor thought I might have trapped nerve in my spine and I thought it would reveal something dreadful being the sort of person who gets weird nerve sensations - and it didn't reveal a thing.   It was unsettling to have symptoms like that for so long but what made me think my brother in law might have been right was because the worst of the symptoms lasted a year which I gather is pretty typical (but don't panic, because they can go a lot faster!)  

My nutritionalist told me that if we get run down we are more prone to shingles so that is something to watch. Easy to say (and I'm speaking to myself here!) try not to spend too much time by yourself worrying about these things because anxiety never helps with nerve pain.

I found that rest was very beneficial so I would recommend you try to get as much of that as you can.  Also, someone suggested a warm bath for 20 minutes with some Epsom salts.  That helped too.

As I say, just one reason you might be getting this pain but I would continue with the investigations and perhaps mention the pain to your doctor and ask if it could be shingles.

 

 

 

[Jmg]

3 hours ago, Elle1 said:

 I have read that a person can have Celiac but not start to experience symptoms until a stressful event occurs. Interesting that I started having symptoms at the point when I was so overworked and unhappy in my job that I finally began to realize I was going to have to find something else after 16 years. Between that and moving, maybe that has been a stressor.

I have had anxiety and GERD and a benign irregular heartbeat for many, many years. We will see if it's all somehow related :-/

I finally found out my gluten issues right after I left a very stressful job and could no longer function I was so ill. Symptoms had gone on for decades before, but it took a moment of stress to bring it to a head.

I had anxiety gerd and the irregular heartbeat and I had a nasty bout of shingles when I was 20 which I've subsequently realised was due to my compromised immune system.  Shingles follows a particular nerve  around the body which is probably why Cristiana's dr suspected it. I had it from the front right of torso moving around to my back. The pain you describe is similar to how shingles felt before the blisters arrived, it starts with the skin feeling very tender as if it's been burnt. Maybe you're getting the forerunner to it and your body is successfully stopping it progressing?

Ah, enough amateur doctoring from me! I hope you get the answers you need and are soon on the way to recovery. Sending you best wishes.

[Elle1]

Update: GP wrote back and said she can do a Celiac test without sending me to a gastro, so I'll make an appointment with her. And thanks to you guys, I will print out and take the description of a full panel so I can try to avoid these partial tests I've read about other folks getting.

I will update, because I know when I read threads like this I always wonder how it all turned out!

:-)

Thanks again!

P.S. I know she can't do the biopsy, but at least she can do phase I.

[Gemini]

Good for you, Elle!  Now you can figure out the problems and feel better.  We are all interested with how things go for you so please do update us when you can. 

[squirmingitch]

12 minutes ago, Gemini said:

Good for you, Elle!  Now you can figure out the problems and feel better.  We are all interested with how things go for you so please do update us when you can. 

I second this!

[Elle1]

Soooo... I went to my GP this morning and had a really great interaction with her. I came armed with a lot of information about Celiac disease, but I found that I didn't really have to do any convincing to get her to do the initial blood test for it. She just returned from a neurology conference where they talked about causes of neuropathy, and she said she's had a good many patients in the past who had neuropathy related to digestive problems. I was so relieved to hear that, I only wish she'd told me that before.

In addition to the Celiac panel, she ordered tests for Vitamin B12, B6, D, magnesium and something else I am forgetting. Oddly, some of my tingling symptoms seem to improve when I dose myself with magnesium citrate. I mentioned that -- plus the sneezing after I eat, which is probably not related but is just weird.

Of course, it will take several days to get the test results back and it may come back negative, which would keep me on the road to figuring out what's wrong. But she mentioned the possibility of a NCGS, too, which I thought was very open-minded of her. She seems to think we need to continue to pursue a gastrointestinal cause of my nerve problems even if the Celiac test is negative. I'm just glad to hear that she is connecting nerve problems with digestive issues!

I'll check back in with results for anyone who is interested. Thanks, guys!

[Elle1]

My test results are back and .... they indicate that I do NOT have Celiac disease! I am thankful for this, especially after reading about how much many of you suffer with it. I do wonder if I may share my test results and some of my vitamin levels to see if you guys have any thoughts.

Test results:
Gliadin Peptide IGG AB: 2 (ref. range <20)
Gliadin Peptide IGA AB: 5 (ref. range <20)
Tissue Transglutaminase IGA AB: 1 (ref. range <4)
Tissue Transglutaminase IGG AB: 1 (ref. range <6)
IGA: 132 (ref. range 69-380)
Endomysial AB IGA: Negative

Vitamin B12 was only 280 when I first started to have symptoms last year. Sx went away after supplementing for about 2 months, then came back when I stopped supplementing for a couple months. Now that I have been supplementing heavily for a few weeks, that number is around 800. I wonder if my sx will just take some time to go away.

B6 is somewhat high for unknown reasons.

Vitamin D is *very* low end of normal even though I take 2,000 IU per day.

I was on PPIs for 10 years and just got myself off of them, let me tell you those things are EVIL if you are on them for more than a year, much less a decade. There are articles everywhere about how they can inhibit vitamin and mineral absorption, so if anyone is on proton pump inhibitors, *please* be aware. This is one of the biggest studies: Open Original Shared Link

I'm hoping my problems are just related to the PPIs damaging my system, and that once I've been off them a while I'll get better. Any thoughts on whether I should still consider trying a gluten-free diet in case of NCGI, or to help my gut heal? Would a celiac test indicate any NCGI?
 

Thanks, folks :-)

 

[cstark]

Elle1,

My symptoms started Oct. 2015, so I do understand what you are going through.  At first, the doctors thought it was all my head that I was crazy.  One had actually referred to psyche, which got me angry.  My symptoms have gotten better after going off gluten as it is the main trigger for my symptoms (twitching to my left side and brain fog).  I had the transglutaminase test after I went off gluten (unfortunately), but they still saw elevated levels which confirmed my suspicions of at least gluten intolerance.  If you don't get the answer from doctors yet, keep at it.  I had to push to get the test done for me, so don't give up.  I have my neurologist appt. today because I just want to know what is going on.  Whether it's Celiac or something else making my neurological go crazy, I want to know the main cause. 

I try not to "self-diagnose" via the internet cause I know for myself it scares me to death when think of the possibilities that could be wrong.  Another thing that has given me indescribable peace is my faith in Christ.  He has kept and will keep me going through whatever is ahead.  There were times when I found myself worrying and becoming anxious about what "it" could be.  Then I remember that my God has it under control, and I give it all to Him again.  I think of Romans 8:28-29 and the book of Psalms as a source of peace and comfort.  

Another thing that has gotten me through without going crazy is my family support.  They have been wonderful and kept my feet grounded, along my Lord.

Just wanted to share some things that have helped me through the darkest times in the journey.   Let me know how it goes.