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skubik

First Post. Looking For Some Insight Into Symptoms.

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Hello. I've been lurking on this forum and reading various threads for a little while now. This is my first post, and I'm hoping that someone might be able to provide me with some insight with some of the symptoms I've been experiencing and what I can expect moving forward with a Gluten-free diet. I apologize now for any TMI in this post.

 

I haven't been diagnosed with Celiac yet, though we (myself, my GP & my Dietitian) suspect that I'm at least Gluten Intolerant. I've been dealing with a long list of strange symptoms for almost 8 years now, but it's only been this year that we've really started to move in the direction of figuring out what role my diet plays in those symptoms. More specifically, it's only been since mid-August that we've suspected some kind of relationship to the Digestive system. I became very ill in the beginning of August (Diarrhea, abdominal "distress", very poor energy, among others listed below) and remained as such for most of the month. I saw my GP in the middle of the month, who referred me to a Dietitian, who in-turn wanted me to go on a Gluten-free/low FODMAPS diet.

 

Within days of going gluten-free/low FODMAPS at the beginning of this month (September), I started to see a change. The Diarrhea started to clear up and I was having solid bowel movements for the first time in months (arguably years). My energy levels remained quite low, which affected my ability to focus & work, but I was told that it may take some time for my energy to return. Slowly, over the course of the next few weeks, my energy did get better; not great, but better; well enough to focus on my work and feel somewhat human again. Other symptoms I was experiencing (like skin sores & rashes on my face) seemed to clear up at the same time, but there have been other symptoms that have continued to linger; symptoms that I've been dealing with for most of the past 8 years. These symptoms, I suspect, have to do with low energy levels, but I'm not sure.

 

Of those lingering symptoms, the worst ones seem to be (please excuse my terminology): 'Floatiness' (feeling like I'm standing on a boat in rough seas; can also be described as feeling 'tipsy' from having a few drinks), 'Jitteriness' (my entire body feels like it's vibrating; as if I've had 10 energy drinks), Weak/Heavy arms & legs (holding my water bottle up to the spout on the fridge feels like I'm holding a 15lb weight), among other minor symptoms such as muscle 'twitches' and body 'jolts' (an entire part of my body, like my shoulder or arm, will move in a 'jolt' involuntarily). There are others, but these are the ones that seem to stand out the most.

 

So I'm curious if anyone has experienced symptoms like these due to Celiac or a food intolerance.

 

I've read various things on various sites online about the kinds of symptoms Celiac can produce, and these things all seem to be listed, but I've never talked to anyone who has experienced similar symptoms themselves.

Do these sound like something related to Celiac or a food intolerance? Has anyone experienced these kinds of symptoms? If so, what might they be caused by, and how long do they last?

 

I suspect I'm deficient in something, but everytime I've had bloodwork done in the past, my levels all seem to be okay. I'm hoping for a different outcome from the bloodwork I had done last week.

 

Can anyone help shed some light on this for me?

 

Thank You!

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I'm curious - why did your doctor refuse to any blood testing or referral to a GI?  He skipped the whole diagnostic process and went straight to the gluten-free diet.  Now, you're stuck.  If you want a diagnosis, you will have to go back to eating gluten. 

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Karen's right!  But speaking to your last symptoms, have you had your thyroid tested?  Feeling jittery, fatigued and having muscle weakness can be sign of Grave's Disease (or hyperthyroid).  

 

You need to find a doctor who's willing to run some basic diagnostic tests.  

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I felt jittery every day of my life until I took a magnesium supplement.  Then it went away over a few days and never returned!  Was your magnesium level one of the nutrient levels checked?   Were your vitamin B levels also checked?

 

Did you want a diagnosis?  Are you ready to be gluten free for life without it?

 

My mental fog and fatigue were some of my basic symptoms.  I also have bloating issues.  The fog and fatigue are gone by now. 

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Thanks everyone for the responses.

 

I don't know why my Doctor didn't refer me to a GI. In hindsight I think I may have jumped the gun on the gluten-free diet. At the time, I was so desperate to feel even the slightest bit better, I was trying almost anything, so I just ran with it. When I went to my Dietitian for the first time, I was already starting to go gluten-free and she commented that in order to get a proper diagnosis, I'd have to go back to eating Gluten, but since I already started going gluten-free, she figured we should just continue down that road and see what the results are.

 

I'm pretty sure that last weeks bloodwork also included testing for Thyroid; there was a TSH test on there from what I remember. But, I've had that test performed before and there was nothing out of the ordinary. Having said that, those tests were done by a different Doctor who insisted that my problems were due to High Blood Pressure or are psychosomatic, so I suspect that if my numbers were even a little low, he probably disregarded it. I've since changed GP's.

 

I've considered low blood sugar as being why I'm jittery. How does one test this? I've consumed sugar in an attempt to see if it helps, but it doesn't appear to. Is that a proper way of testing?

 

Now that I think of it, my Doctor actually mentioned a possible magnesium deficiency. I have a 1:2 Cal-Mag Bisglycinate supplement and have been on it periodically, but I never noticed any improvements with it before, but it's entirely possible that I simply didn't give it enough of an opportunity to make a difference. Or, I simply forget that I should be taking it (brainfog is another nasty symptom I've been dealing with).

 

I am also on a B12 supplement along with a probiotic. I suspect my B vitamin levels were part of the bloodwork I had done last week as well.

 

More than anything, I wanted to see if anyone has had experience with these kinds of symptoms in relation to Celiac or Gluten intolerances. Sounds to me like they are!

 

 

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This makes me crazy.

Why do doctors continue to skip the celiac panel when they suspect a gluten problem 

and why did the dietician recommend you go gluten-free and Low FODMAP BEFORE they ruled out celiac?

argh! Now you are stuck in diagnostic limbo.

 

To answer your question, yes, many of us had those symptoms, but they are also symptoms of OTHER disorders and diseases, so it is not necessarily celiac causing them.

 

Could you stand a gluten challenge?

 

And the CBC and CMP reports ( see your lab reports )should have a glucose level on there. If you were hypo- or hyperglycemic, the lab tests would have indicated it. (And just eating more sugar does not correct this problem.)

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You should always insist on getting copies of all lab work done on you.  If you change doctors, you have a history of your lab results.  "Pretty sure and I suspect" just doesn't cut it when you're trying to find out why you're sick!  

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take magnesium separate from the calcium.

 

Really? that's interesting because my doctor told me to take it  in combination ---with Vit D (to help the body absorb calcium) and phosphorus in order to get the maximum benefit.

I take twice as much calcium to mag ratio. And eat a lot of calcium-rich foods. Bone density scan after 2 years shows improvement.

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"Pretty sure and I suspect" just doesn't cut it when you're trying to find out why you're sick!  

 

Noted.

 

I actually have copies of my most recent bloodwork from my previous GP, but those are the tests that didn't show any significant variations in my results. I haven't shown those to my new GP simply because I didn't consider them to be significant. Shortly after starting with my new GP earlier this year, he also ran bloodwork to look at various levels (of what, I don't know; my bad, right?) and again, nothing seemed out of the ordinary. That was before we even began to consider the role my DIgestive health might have on my ongoing problems.

 

It's also worth mentioning that this (Celiac/GI) isn't the first thing we've looked at to try and explain my list of symptoms (floatiness, jitteriness, etc). For the last year I've been seeing various health professionals in various disciplines to try and rule out other potential causes of these symptoms. I first thought it was a vestibular problem so I saw physiotherapists specializing in vestibular disorders, but that was ruled out. Then I thought it was a spine/nervous system problem, so I saw a Chiropractor that took a whole-body approach and didn't just "crack bones", but she eventually gave up on me after trying everything she had in her arsenal. A few months ago I went to the ER because of seemingly-related symptoms, and they ran a variety of tests including various x-rays, a heart stress test, and a breathing stress test, all of which came back 'ok'. I've seen Naturopaths in recent years too. I've gone to all these different people because my own research led me to them. My old GP seemed to be more interested in medicating the problem and collecting his fee than he was getting to the root of the problem, so I had to take matters into my own hands, which is why I saw the people I did. My new GP at least seems more prepared to dig with me to get to the bottom of this, and even sent me for a sleep stufy a few months ago to see if my problems were being caused by sleep apnea fo some sort.

 

Bottom line: I've done a LOT already to try and figure out why I'm sick. Is it enough? Maybe not.

 

As for the Calcium-Magnesium thing, I also read that Magnesium is best absorbed with Calcium, though I didn't know about the Vit.D relationship with absorbing calcium. Vitamin D is one of the only things on my past bloodwork results that looked even slightly off, so perhaps it's been a case that even though I've tried taking these various supplements, I haven't been using them in concert with each other to see an actual benefit.

 

Anyone with thoughts about Spinach and Magnesium? I've read it's a very good source of magnesium and I eat a LOT of spinach in my diet. Perhaps it's simply not enough to give my body what it needs to recover?

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Hmm, well...the article is really a website to sell  transdermal magnesium

and the only sentence I saw that mentions that calcium reduces magnesium absorption was this:

 

"In one study, addition of 300 to 1000 mg of calcium to the diet decreased magnesium absorption significantly in participants consuming an average of 370 of dietary magnesium daily.6"

 

 

In one study.

 

There is much debate about cal/mag supplementation, especially if someone eats a

calcium-rich diet.Then, the ratio is all thrown off.

 

All I know is, my bone density scan showed improvement following my doc's recommendations and doing weight-bearing exercise (now that I can)

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Hmm, well...the article is really a website to sell  transdermal magnesium

and the only sentence I saw that mentions that calcium reduces magnesium absorption was this:

 

"In one study, addition of 300 to 1000 mg of calcium to the diet decreased magnesium absorption significantly in participants consuming an average of 370 of dietary magnesium daily.6"

 

 

In one study.

 

There is much debate about cal/mag supplementation, especially if someone eats a

calcium-rich diet.Then, the ratio is all thrown off.

 

All I know is, my bone density scan showed improvement following my doc's recommendations and doing weight-bearing exercise (now that I can)

Good to hear.  I'm just doing exercise and taking a calcium supplement that does contain some D3, Magnesium & Zinc per my doc.  I'm hoping I'm building up bone!!!!

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Hi Subik,

 

Welcome to the forum! :)

 

You can probably get a blood glucose meter at your pharmacist to test your glucose levels.  People with diabetes use them for that.  So they are fairly commonly available.  It just takes a little jab for a miniscule drop of blood for most modern meters to work.  That will give you and idea if you have blood glucose issues, either high or low levels..

 

I am not sure how long you have been gluten-free, but it may not be too late to do the celiac disease gliaden antibodies panel.  The other diagnostic test they do is an endoscopy of the small intestine.  Usually the celiac panel is done first though, as it is non-invasive.

 

Celiac disease can cause mal-absorption of nutrients, which can cause many symptoms.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Thanks GFinDC!

 

I've been gluten-free for a little over a month. The bloodwork I had done last week included a Celiac screening panel, which I assume is the same as the 'gliaden antibodies panel' you mentioned. Of course, since I've already been gluten-free for several weeks at the time of having the bloodwork done, I won't be surprized if it comes back negative. Having said that, I suspect I may have been cross-contaminating myself all this time anyway; I've been putting my gluten-free bread in our old (read: previously-used-with-products-containing-Gluten) toaster. So maybe there's still a chance it'll show up on the panel?

 

As for the Magnesium thing, I'm really not sure what approach to take. I meet with my Dietitian again tomorrow and that'll be one of the first things I bring up.

I simply assume I'm deficient in something, which is why I had the bloodwork done last week. Dietitian should have the results of that tomorrow. I'll be quite frustrated if everything comes back normal because I'm clearly dealing with something causing me to feel this way. So many of my muscles feel 'jittery' and almost 'weak'. Hell, last night I was smiling and could feel the muscles in my face feel 'jittery' or like they were 'micro-spasming'. WTH!?

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Hi Subik,

 

It's good they did the celiac panel, hopefully there will be enough antibodies left to show up.  Sometimes people with celiac are low on B vitamins, and that can lead to nerve cell problems.  It's sounds like you are in a waiting period now for test results.  So it is a great time to do some reading and learn about celiac.  There is also NCGS, which causes similar symptoms to celiac disease, but they don't have any standard tests for it right now.

 

There are lots of articles about celiac disease on the celiac.com main page.  You can also click the "new content" button on the top right of the forum page to see recent thread posts.  You might learn something from them.  Searching in the search box can sometimes bring up interesting threads too.  You might find something relevant by searching on nueropathy.

 

And there's always the trusty old ask more questions.  That works pretty good too! :)

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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