Long Story Of Neurological Symptoms And Lowish Ferritin- Could It Be Celiacs?

[Bane808]

Hi everyone,

 

First, just want to say, I have not been diagnosed with Celiacs, but I believe there is a possibility (a small chance if anything) I may have it. I am posting here, because honestly I don't have much else to go off of. I'm looking for advice or perhaps input from others on this forum who may have gone through similar symptoms. I know I'm not crazy, I know there is something wrong. It may sound weird but I want it to be Celiacs. If that's the case I can get my life turned around and start feeling better. Anyways here it goes...

 

Here's a synopsis of me: 24 year old male, healthy my entire life (played sports in all my life, always very vibrant and active) up until around 21-22. Started experiencing severe muscle cramping that began in my calves while exercising (no biggie right?). This progressed over a few months, then I started to get tingling and numbness in my feet/calves, mostly in the evenings. At this point I was little worried so I went to my pcp who sent me to some orthopedic docs, thinking it was shin splints or compartment syndrome. They could never figure it out, and I was going to go through with the compartment syndrome test (they stick a pressure probe into your muscle!) but decided I didn't need to. 

 

Eventually, after a few months of cramping and tingling, I got this weird eye twitch. It would not go away and persisted for several weeks. Then I got full blown muscle twitching everywhere in my body. It would remain dormant while I was active during the day at work but as soon as I got home in the evening it would flare up. At this same time I started having difficulty sleeping. I either couldn't fall asleep for several hours or I would wake up repeatedly during the night. I was prescribed Elavil 20mg to help me sleep, and it does work with few side affects, but I would wake up still feeling exhausted day-after-day.

 

The muscle twitching over time gave way to severe muscle stiffness. I always felt very tight, achy, and injury prone. I believe this is from the constant muscle activity/twitching. This entire time I would also get intermittent tingling and numbness in my feet. While exercise helped me feel a little better, it would also make me super sore and stiff for the next few days, even for weeks. I was always pulling muscles, straining stuff, I tore my pec just from lifting 80 lbs, so I just stopped exercising. My joints and bones were always in pain too, I felt at many points 40 years older than my age.

 

The fatigue and psychological issues were, and still are, the worst symptoms I have. There were days while I was working I had to call out just to remain sane. I was that stressed out. I was exhausted and tired and by the end of the day I could barely function. I would get severe bouts of depression and anxiety. I don't want to go into too many details but there were certain points where I was suicidal. I was a mess. I wouldn't hang out with friends because I was so tired. I would have severe mood swings, I was angry, irritable, sad. Little things would set me off. My fiance, God bless her, has stood by me this entire time consoling me and offering advice.

 

Some other symptoms I've experienced: very sensitive to cold in winter (I was always freezing- which is not normal for me), off-and-on heart palpitations, chest pain, headaches, and  severe brain fog. In terms of GI symptoms, while these have never been on the top of my mind as being severe, I realize now my bowel movements are not healthy. I've always had bad gas my entire life (very,very bad-just ask my fiance haha), in the last few years I've had a lot of constipation, unhealthy stools, off-and-on diarrhea. My bowel movements fluctuate a lot! Most days I have several bowel movements, but they're hard to pass. Other times I have very loose stools. Rarely do I go for more than one day with anything like a normal bowel movement. I never paid too much attention to these things, in fact I've never even mentioned it to my doctor. But I"m starting to wonder if the gas I've been experiencing life-long, plus constant constipation/weird bowel movements means something more is going on.

 

Doctors and specialists I've seen in the last 3 years for all these issues: 3 neurologists (did nerve conduction and EMG- everything came back fine except some compressed nerves in neck and back), 2 Rheumatologists (did full work up checked for all sorts of things including Lymes, Sjogrens, and other auto-immune disorders- all came back normal), 3-4 Ortho docs for my legs and lower back. 2 Endocrinologists (my Testosterone is on the low end at 330 ng/dL due to taking steroids when I was 18- I've had symptoms of low testosterone since that time but those symptoms were very manageable compared to the last few years) all my other hormone levels came back A-okay. Saw a cardiologist for my heart palpitations and chest pain (she did an EKG and it came back fine). I've had MRI, X Rays, tons of bloodwork done over the last few years. I've had two pcp docs, I've seen them what seems like dozens of times and they never do anything besides put in referrals if I beg them or pull routine blood work.

 

One of the Rheum's told me I had fibromylagia and to basically just suck it up, there weren't any answers to how I was feeling, then sent me back to my pcp like I was someone else's problem to deal with. Another doc told me I had benign fascsiculation syndrome. Besides that I have not gotten any definitive diagnoses.

 

Now, here's the interesting part. I finally asked my pcp to do a sleep study. He was reluctant but went ahead. I go to the sleep doc and he tells me I don't have anything wrong but he'll go ahead and do the study. It turns out I have severe sleep apnea- very bad on the order of 90 events per hour on the Apnea-Hypopnea Index. This was back in February of 2015. I got my Bipap machine in mid March and have been using it ever since. I get my AHI down to below 1 every night- this is very good! I also started on Testosterone in March 2015 as well to see if my low testosterone was causing some of the problems as well. I've put on over 20 lbs in 4 months, my testosterone level is at a very healthy, youthful level around 900 now. Between the Testosterone and treating the sleep apnea I feel slightly better, my energy levels are little bit better, muscle twitching and stiffness has gone down some but will flare up for no reason. I still get some of the nerve sensations and my depression/anxiety still seems to stick around. 

 

Because I was still feeling tired and exhausted despite being treated, I saw the nurse practitioner at the sleep study center and he pulled some labs. For the first time, my ferritin levels were pulled. They came at 18 ng/mL. My CBC panel came completely normal, hemoglobin, hematocrit, MCV, MCH, all normal. I know this isn't the lowest, as I've seen many others on this forum and others with much lower, but to me this might be a missing piece to the puzzle. Based on the research I've done, you can have all the symptoms of iron deficiency anemia with low ferritin. And I know it's one of the most common symptoms of Celiacs. So, am I crazy for thinking all this? Does my ferritin level warrant a referral to another specialist to be checked for Celiacs? I don't have blood in my stool, I've never had gastric surgery, I don't have hypothyroidism (which I know can cause low ferritin), I've never donated blood, I don't have Crohn's. All my research points to malabsorption issues as the key possible cause of my low iron stores, but I'm not sure :/ I know sleep apnea and low testosterone can cause some of the symptoms I've had, but I've never seen anyone with sleep apnea or low t in all the research I've done complaining of all the neurological symptoms I have.

 

Anyways sorry about the long post. I just want to start feeling better and maybe hear from others who have gone through something similar before being diagnosed.

 

Note: I've tried all sorts of things, from yoga to meditation to stretching for an hour a day. I've supplemented in the past with magnesium 500 mg daily, Vit D ( I got my Vit D from 19 to 80 by taking 20,000 IUs daily for 3 months but had no affect on any of my symptoms), liquid B12 1,000 mcg, COQ10. The only thing I think helps is the magnesium- when I take it I notice a calming affect on my anxiety but that's about it.

[cyclinglady]

Any medical doctor can order the complete celiac panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

You can not exclude celiac disease unless you test for it! Your ferritin does seem low for a guy, but I am not a doctor. And...you are not crazy! Continue being a good advocate for your health!

Welcome to the forum and let us know how it goes!

[GF Lover]

Hi Bane and Welcome to the Forum.

 

Ditto....Get tested now.  Make sure the full panel is ordered.  Then the next step is endoscopic biopsies.

 

Good luck.

 

Colleen

[Bane808]

Okay, I appreciate the input. I think I will request a referral when I see my pcp again.

[roomorganizing]

Sorry this reply is a little late, but you don't really need a referral from your PCP. He/she can order a complete celiac panel to be run...it doesn't have to come from a specialist. Be sure to write down or have on your phone the list of tests that cyclinglady posted above and MAKE SURE the doc shows you that those tests are requested. If it lists "Celiac Panel", ask what tests are included. I have said the same to everyone in my family and a few friends who have gone for celiac testing, and so many of them have showed me their result reports which list only the total serum IGA and the tTg. They asked for a full celiac panel to be run, but never did enough research to really know what the panel consists of and didn't insist that the docs tell them what they were ordering. Unfortunately, they are not getting the complete picture and stay frustrated that they can't figure out what's wrong. GO ARMED...please!!

[Bane808]

Sorry this reply is a little late, but you don't really need a referral from your PCP. He/she can order a complete celiac panel to be run...it doesn't have to come from a specialist. Be sure to write down or have on your phone the list of tests that cyclinglady posted above and MAKE SURE the doc shows you that those tests are requested. If it lists "Celiac Panel", ask what tests are included. I have said the same to everyone in my family and a few friends who have gone for celiac testing, and so many of them have showed me their result reports which list only the total serum IGA and the tTg. They asked for a full celiac panel to be run, but never did enough research to really know what the panel consists of and didn't insist that the docs tell them what they were ordering. Unfortunately, they are not getting the complete picture and stay frustrated that they can't figure out what's wrong. GO ARMED...please!!

Thanks for the reply roomorganizing.

 

I actually just had some blood work pulled the other day and two of the Celiacs tests were run. Since I'm a military dependent and get my healthcare through Tricare, my pcp can only order blood work through the local VA nearby, unless he wants to refer me out to a specialist. Apparently the VA only has two of the tests? I did check to see which one's- They're the Transglutaminase IgA and IgG tests....I had asked for the entire Celiac panel but this is what my doc said he could order.

 

Roomorganizing or perhaps someone else, can you explain the benefit of all the tests. When I did some research it was saying the Transglutaminase IgA was the gold standard test, that 98% of people with Celiacs would test positive for this test. What reasons are there for all the others?

 

Also, in your experiences on this forum. Have you seen individuals with just the Ttg IgA test done, that perhaps came up negative but later on found out through the other tests that actually did have some type of gluten sensitivity?

 

I'm waiting on my results right now. The lab technician said I will have to wait a week-and-a-half to get my results. I also requested a heavy metals panel, a full Thyroid panel, Vit B12, and Folate. I had requested RBC Magnesium and RBC Potassium tests as well as some more GI tests for Candida, etc. but the VA doesn't run those.

[kareng]

If you are IGA deficient - then the IGA version might be falsely negative.  That might be why they run bother versions.  Some more info:

 

http://www.cureceliacdisease.org/?s=iga+def&submit=Search

[cyclinglady]

My TTg tests were negative. Only one, the DGP iga was positive! Biopsies revealed a Marsh Stage IIIB (moderate to severe damage). Thank goodness my Celiac savvy GI ordered the complete panel. Our PCP ran the entire panel for my kid which was negative in all tests and she is symptom free. He ran the full test because of my wacky results! My mom's insurance ran only the TTG tests and checked for IgA deficiency and her results were negative. Armed with my results, she's going back in for additional testing.

I hope you can get the extra tests. I think the entire panel is $450. It might be with paying out of pocket for the additional tests instead of being in diagnostic limbo land. But ask about the pricing as each lab has different rates.

Good luck to you.

[roomorganizing]

Bane, I am an infrequent poster, but I have followed this forum almost weekly (sometimes daily) for 5 years since finding out that our oldest son (now 21) has celiac. His was found with a high tTg that lead to a positive endoscopy. That single discovery began the celiac avalanche for my family. Because of the reading I did here, I knew that everyone in our family needed to get tested, and I became insistent, unwavering, almost nagging in my certainty. Here's what we have uncovered to this point:

 

My father: diagnosed at age 72, 1 1/2 years after my son. No blood testing, but positive endoscopy with severe intestinal scalloping and no villi. Now deceased from pancreatic cancer.

My mother: self-diagnosed in the 80's with a "wheat allergy." Has been gluten free so long that testing would be pointless. We thought she was crazy.

Sister: diagnosed with DH 3 years ago, which is a positive diagnosis for celiac.

Brother: diagnosed last summer with ALL blood tests on celiac panel being strongly positive. Endoscopy showed blunted villi.

Brother's daughter: blood work positive, though I don't know what tests were run. No endoscopy. 

Another brother: Doc only ran Iga serum and tTg tests with normal results last fall. He is hypothyroid with a strong family history. Really?? No full panel?

Me: strictly gluten free for 4 years. Positive for DQ2 and DQ8 gene markers. Tried gluten challenge last year but could only endure 6 weeks. Complete panel showed normal levels. Still gluten free.

Daughter: Complete panel with only DGP IgG showing strong positive, all others normal, endoscopy was negative, positive for DQ2 gene. As a teenager, she refuses to accept that we caught it early with the DGP. Still lovin' her pizza...until I have her tested again. ;-) 

2nd son:  all bloods normal when tested 4 years ago, positive for DQ2 gene. Will retest if symptoms occur.

 

As you can see, my family alone has the full range of tests, or lack thereof, as well as results. Every test is important! It seems that some doctors don't know the difference between a full panel for TESTING and a couple of tests for SCREENING. I remember someone here posting about that, though I don't recall who it was. Also, from all my research, the tTg Iga is very accurate (as long as you are not Iga deficient) in detecting advanced damage to the intestines. The DGP can be an early detector before too much damage is done. There's a reason for each test, so get them all if you can!

 

I have spent a lot of time reading and researching over the last 5 years, and personally, I would not question what the moderators of this forum recommend. They have seen it, experienced it, heard it all. None claim to be doctors, but as far as educating newbies on celiac, they are tops!

 

Keep us posted!

[Bane808]

Thanks for the replies ladies and gents.

 

Still no word back on the Celiacs tests pulled.

 

My free T4 (thyroid) came back a little low at 0.75 normal range is (0.8-2.2), but my TSH was optimum at 1.37. Now I'm wondering if I am indeed somewhat hypothyroid. This is the first time in years besides TSH that Free T4 has been pulled, and after reading up on the thyroid sites, it appears I might be secondary hypothyroid? My doc thought maybe this was due to me being on testosterone. I had to go back in this morning and have free T4 re-tested, if it still comes back low, the doc is going to send me to an endocrinologist.

 

Good news is, I was able to get in very quickly to see a hematologist at the major university in my city. I'm going because of the low ferritin, but I'm going to ask him come next Monday to run some more tests, and also ask for the full Celiacs panel. Hopefully at that time I'll have some more info.

[kassieK]

Hi Bane, I am not a doc but your symptoms sound very much like an autoimmune thyroid issue. Look at both the hypo and the hyper thyroid symptoms. You can swing from hyper to hypo in the autoimmune type. I had lots of odd muscle tightness like my muscles were constantly contracting. . Most of your other symptoms are similar to mine and i have been diagnosed as hypothyroid w/ RA. Thyroid hormones affect virtually every body tissue and the brain. A marginally high TSH ( thyroid stimulating hormone) can cause symptoms  tho the endocrinologists will say it is normal. All of the autoimmune diseases have somewhat overlapping symptoms also.. Good luck on your search... kassieK

[Bane808]

Thanks KassieK,

 

I had my Free T4 retested and it came back at 0.8. So just borderline.

 

I also had Free T3 pulled and it came back at 2.99 pg/mL range (1.50-4.20)- so normal but not upper levels. With TSH being always optimum, I'm wondering if Free T4 is having to convert at a higher rate to produce enough Free T3, which would indicate something off? 

 

New update as well, got the results back from my Celiacs Panel. Looks like everything came back negative.

 

tTG, IgG: <3 U/mL range (<6 no antibody detected anything >6 positive)

 

tTG, IgA: <3 U/mL  range (<4 not antibody detected anything >4 positive)

 

No other tests were pulled. I'm going to follow up with this hematologist this coming Monday and request the entire panel. Perhaps one of the other tests might show something. Like CyclingLady said, only her DGP IgA came back positive, so I'm still holding out that it might be Celiacs.

 

Also, all heavy metals- lead, mercury, and arsenic came back within normal ranges.

[Bane808]

Hi Bane, I am not a doc but your symptoms sound very much like an autoimmune thyroid issue. Look at both the hypo and the hyper thyroid symptoms. You can swing from hyper to hypo in the autoimmune type. I had lots of odd muscle tightness like my muscles were constantly contracting. . Most of your other symptoms are similar to mine and i have been diagnosed as hypothyroid w/ RA. Thyroid hormones affect virtually every body tissue and the brain. A marginally high TSH ( thyroid stimulating hormone) can cause symptoms  tho the endocrinologists will say it is normal. All of the autoimmune diseases have somewhat overlapping symptoms also.. Good luck on your search... kassieK

KassieK,

 

Have you been able to treat your hypothyroid symptoms like the muscle stiffness? Back in 2013 I saw a Rheumatologist and they tested for Rheumatoid Arthritis, Sjogren's Syndrome, and Lyme's Disease, but everything came back normal...

[kassieK]

KassieK,

 

Have you been able to treat your hypothyroid symptoms like the muscle stiffness? Back in 2013 I saw a Rheumatologist and they tested for Rheumatoid Arthritis, Sjogren's Syndrome, and Lyme's Disease, but everything came back normal...

HI Bane, I found that taking the Synthroid at night has been tremendously helpful for muscle pain.  I don't eat for approx. 3 hrs before. Coffee in the a.m. was reducing my absorption. The muscle "tension" reduced significantly once I started treatment. There is some name for the muscle tightness. Look on emedicine at hypothyroid myopathy. I still have fatigue etc. and may try adding T3/cytomel. RA can also be seronegative.... I'm trying to sort out which pain is from which illness LOL. Also , the thyroid hormones are a snapshot (as all blood work is). You might try watching any anti-thyroid foods and see if that helps?? I will look back thru your description later tonight and see if anything stands out.

[cyclinglady]

Bane,

Any GP or an Endo can test for autoimmune thyroiditis. Ask for a thyroid antibody panel as it sounds like you did not get a full thyroid panel run (nor a complete celiac panel).

Remember, you can choose to go gluten free if all else fails! I am formally diagnosed, but my hubby is not. He has been gluten-free for 14 years!

[GeoHad]

Hi Bane - I know this post haven’t been updated in a few years but I am experiencing the exact same thing as you and was wondering if you figured out what was going on? I’m a 35 y/o male and had zero health issues all my life. I’ve always been active and eat healthy - one day I felt like I got hit by a truck and everything started going down hill. My ferritin came in at 12. Negative for celiac. Any updates on your journey? I read your post and I suffer the same story, word for word. Any help is much appreciated. Geo. 

[cyclinglady]

2 minutes ago, GeoHad said:

Hi Bane - I know this post haven’t been updated in a few years but I am experiencing the exact same thing as you and was wondering if you figured out what was going on? I’m a 35 y/o male and had zero health issues all my life. I’ve always been active and eat healthy - one day I felt like I got hit by a truck and everything started going down hill. My ferritin came in at 12. Negative for celiac. Any updates on your journey? I read your post and I suffer the same story, word for word. Any help is much appreciated. Geo. 

Did you receive the complete celiac panel?  Some celiacs are seronegative and some test oddly, like me.  I only had a positive on the DGP IgA (even on follow-up testing), yet I had some severe intestinal damage per my biopsies.  

[lauren427]

hi Bane, 

 

Its been years since your post, and it seems like you have no updated at all. Your post sounds almost exactly like mine, did you figure out your cause or get better?

 

THank you, 

Lauren 

[Jake503]

Wow - stumbled upon this today... my fiance is currently suffering from something nearly identical to what @Bane808 described. She's 35, have been struggling with these symptoms for a few months now. Started taking Ferritin supplements along with several other vitamins, i.e. magnesium. 

@lauren427 @Bane808 @GeoHad

Any updates from Bane, or the others tagged in this post ^? It's a mystery we'd like help solving.

[GFinDC]

Hi Jake,

The people you tagged aren't following this thread, so probably won't get a response from them.  The followers are shown by the round circle to the right of the thread title.

Your fiance could go to a doc and ask for a vitamin and mineral levels test plus thyroid hormone.  If she wants to be tested for celiac disease she needs to be eating at least some gluten daily for 8 weeks before the blood test.  It's best to get the full celiac disease test panel of all the antibodies, not just the ttg.

Celiac disease causes damage to the small intestine which can inhibit absorption of nutrients.  Nutrient deficiencies can cause lots of health issues.  Taking vitamins helps but poor absorption can reduce their effectiveness.  The real treatment for celiac disease is the gluten-free diet.

[BuddhaBar]

Did you have some sort of strong immune reaction prior to this? A bad influenza, sepsis or anything like that?
What about your internal stress level? Overachiever? Any bad things happened in your life?
All of those symptoms are symptoms of both M.E and Burnout.