1 Year Later, Strict Diet, Debilitating Symptoms, Only Abnormality Is Excessive B12 In Blood?

[Celeste77]

This is my first post. I guess I'm hoping that someone will read this and be able to offer some advice. Perhaps point me in the right direction..

 

I was diagnosed March 2013; biopsy showed partial destruction of intestinal villi (Marsh lll), blood test marginally positive. My symptoms did not go away on a gluten free diet, in fact I got so much worse that eventually I couldn't get out of bed and was forced to resign from my job, my career. Bloated & painful abdomen, reflux, abdominal pain, exhaustion (arguably the worst symptom of all), dizziness, muscle weakness, confusion, depression, anxiety. Nothing changed on the diet, no improvement whatsoever. In July I was diagnosed with a bacterial overgrowth and felt a bit better on antibiotics but overgrowth & symptoms returned. I eliminated grains, sugar, starch, specific fruits & veggies which calmed down the abdominal symptoms & I continue to manage the overgrowth by eating this way. But the non-abdominal symptoms remain. In October I was diagnosed with iron deficiency, rock bottom iron levels but not yet anemic. Was also diagnosed hypothyroid. I received iron infusions & started thyroid meds (armour thyroid) and I actually started feeling somewhat better for a month or so....but not so much now.

 

My blood levels are now normal, normal = what they were before I got sick. I've been tested to a ridiculous degree for many many autoimmune diseases. While I have a positive ANA, all other tests are negative. No lupus, no connective tissue disease or any other disease for that matter, and no "tender points" indicating fibromyalgia. The damage in my gut is healed, celiac related antibodies are negative and even on the low end of normal. The only abnormality is my B12 blood level which is blowing off the charts (excessively high, around 2000) and it's been like this since diagnosis. I do not take any supplements since my only deficiency was iron, and I didn't take supplements prior to diagnosis either. Strangely enough, my lingering symptoms are in line with B12 deficiency...  At this point I have debilitating exhaustion & I'm having to take naps every day, I have trouble carrying conversations or finding words perhaps because I'm simply too tired to, depression & anxiety not responding to antidepressants, muscle fatigue with racing/pounding heart when exerting myself by doing things like....dishes...

 

Has anyone ever seen or heard of excessively high B12 before? Or is there something else I'm overlooking that I should be checked for? All suggestions are welcome. Unfortunately I can't leave it for the doctors to figure out. Some of them are at least honest and admit to not having experience with celiac patients and the others just look at me like I have 3 heads. I've had to push for blood tests (even for things like CBC and iron levels). I find myself having to educate them about the disease and once I had to explain (almost argue) the reason why I couldn't take a prescription that contains wheat starch... 

 

Any help/suggestions/info is most helpful. Thank you!

Celeste

 

 

[frieze]

perhaps you are a non methylater?  can they retest you blood and see if that is methylated B12 or not?

Open Original Shared Link

[nvsmom]

I have high B12 as well, not as high as yours (usually around 900) but it s above normal.... I haven't found a rel reason for it either.

I also am hypothyroid and have had positive ANAs, although it as been normal for at least a year. I'm afraid I don't know if the autoimmune problems are related to the high b12.

[frieze]

nvsmom, check out the link I left in the post above...

[GFinDC]

Maybe some of the search results for high b-12 levels will be helpful.  Some suggest it could indicate liver issues, some suggest other things.  I wonder if it's possible that the body just can't utilize the B-12 properly in some people?  It seems like I read something about that once but I don't remember where.

 

Open Original Shared Link

[dilettantesteph]

In your shoes I would travel to the closest celiac center and get an expert opinion. 

 

I also suggest trying the diet in the Hollon Fasano study.  Open Original Shared Link

Some react to lower contamination levels than others.  Do you still eat a lot of boxed items?

 

I have no idea if that would cause a B12 problem.  It is produced by bacteria.  Could it have something to do with the bacterial overgrowth?  Open Original Shared Link

Open Original Shared Link

[Celeste77]

perhaps you are a non methylater?  can they retest you blood and see if that is methylated B12 or not?

Open Original Shared Link

 

Wow! What a wealth of information that website provides! This may explain my high blood pressure that I've had since my mid 20's, I'm in my mid 30's now and it seems to be getting worse with no explanation despite an absurd amount tests. Thank you for providing the link! So, so helpful! 

[anti-soprano]

Mast Cell Activation Syndrome is another possibility.  

https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

 

Here is a complete list of symptoms:

Open Original Shared Link

 

Makes sense with fatigue, headaches, dizziness, muscle weakness, depression, anxiety, iron deficiency, GI issues including bloating and reflux, thyroid problems, racing heart, and cognitive problems.  What doesn't fit is high blood pressure and high B12, both of which are usually low.

[jebby]

Hi Celeste,

I am one of the celiac and mast cell people on here. My major celiac symptoms have been joint issues and neurologic (brain fog, fatigue, difficulty concentrating). I react to the smallest possible traces of gluten, sulfites, and foods with a high histamine load (some of my histamine and sulfite symptoms are fatigue, brain fog, and forgetfulness and difficult concentrating). 

Like you I have hypothyroidism and a positive ANA. My B12 levels have always been >1200 but I have never been able to figure out why. I'll let you know if I find anything as I hit the books.

Jess

[frieze]

Jebby

perhaps you are a nonmethylator?

[Celeste77]

Thank you everyone for taking the time to read my post and respond. This is very exciting as I've never spoken to someone with this disease before. Many people (friends/family) are irritated by me and "my disease" and others tolerate it, so I wouldn't say I have much of a support system. I'm so happy to have found this forum and incredibly grateful that people I don't even know would give me their personal time and try to help. Heart warming for sure.

 

I have some additional questions. The mast cell syndrome that's been mentioned, is there a test for this or is it an elimination diet? If it's an elimination diet, how long until I would be able to determine whether or not this is this problem? I briefly read through other posts related to the mast cell topic and it seems as though a diagnosis is nearly impossible. I'm not in need of a diagnosis per say, just wondering how to pinpoint whether or not this syndrome is my issue?  Does an antihistamine help? 

 

Regarding the B12 issue, perhaps not converting or methylating. I saw an endocrinologist last week and asked for my B12 to be rechecked, including my methylmalonic acid, and he didn't order the tests. I've contacted his office to let him know that it wasn't on my lab order and I'm not getting a response. Should I just go for Methyl B12 supplement on my own, to see if it works?

 

Do any of you see a certain type of doctor, your go-to doc? Is there a specific type of doctor that I need to seek out? It's been hard enough to get a diagnosis, even harder to get attention and proper after-care for deficiencies, thyroid, etc. I just need someone who actually knows what to look for, runs the right tests (without me walking in with a list and insisting), someone who can provide real medical insight & help.  I resigned a year ago and haven't been able to go back. But my savings is now gone, wedding funds are gone, wedding dress is for sale (I got engaged right as my health was starting to decline, wedding postponed indefinitely at this point) I'm going to lose my house, car, & my fiance and I are barely getting by. I have to go back to work but my profession requires me to be mathematically and analytically accurate, quick thinking and my memory sharp. For the past 12 years, I've worked a minimum of 60 hours/week and so stamina it's mandatory in my profession. I'm afraid I wouldn't be able to get through an interview without spacing out or losing my words, how do I fake being sharp and capable? I have an excellent reputation in my industry and terrified of destroying it....the very 1st week back. Sorry, I know I'm off topic, but I guess I needed to vent a little or maybe I'm hoping for someone to respond and say "oh, it's definitely possible to get your life back and feel good again because I was able to do it and you can too.."  Anyone? 

[dilettantesteph]

I'm hoping for someone to respond and say "oh, it's definitely possible to get your life back and feel good again because I was able to do it and you can too.."  Anyone? 

 

It is.  My mind was shot when I got my diagnosis.  I was a research chemist (PhD level) and I was able to go back to work as a synthetic chemist developing new procedures.  I was able to read and understand research journal articles again.  When I was sick I wasn't even able to read the newspaper.  The change is unbelieveable and wonderful. 

[Celeste77]

It is.  My mind was shot when I got my diagnosis.  I was a research chemist (PhD level) and I was able to go back to work as a synthetic chemist developing new procedures.  I was able to read and understand research journal articles again.  When I was sick I wasn't even able to read the newspaper.  The change is unbelieveable and wonderful. 

Thank you for sharing your experience. How long did it take to get your brain back, so to speak? I was diagnosed 1 year ago today and while my GI symptoms are gone and biopsy pathology is back to normal, my brain & extreme fatigue remains unchanged. I still can't function on a daily basis. Did merely changing your diet work for you or were there other issues (vitamin deficiencies, co-existing medical problems) that had to be corrected before you felt better? 

[dilettantesteph]

It took me awhile.  My problems seem to be best solved with diet.  I was extremely sensitive to gluten cross contamination from the start.  It took me a long while to figure out what was going on and what to avoid. I kept getting told that 20 ppm was safe for everyone and I just needed to heal.  I found out that some of us are sensitive to lower levels than others.  As I got better at avoiding things, I seemed to get even more sensitive.  I have had to work hard keeping a food/symptom journal and being very careful about what I eat.  I haven't had any positive tests for deficiencies, but I do take vitamin D during our sun free winters, and iodine, as I don't use iodized salt.  I have found that I seem to react to a lot of supplements, so I tend to avoid them these days.  The getting my brain back has been gradual.  I did a mini marathon after about a year, so I was pretty physically healthy by then.  I got the job after about 3 years, but I think that I could have done it earlier.  It is my opinion that neurological symptoms can be caused by lower levels of gluten that do not cause a positive intestinal biopsy.  I have also heard this opinion from a neurologist. 

[Ninja]

Should I just go for Methyl B12 supplement on my own, to see if it works?

 

If you decide to try Methyl B12, I suggest you start low and go slow. I noticed a huge difference in my fatigue, muscle weakness and brain fog when I began supplementing with Methyl B12.. huge! However, I soon after discovered that I am sensitive to too many methyl groups (of which methyl B12 is one); I get wired and can't sleep at all. It is not fun! Listen to your body and go slowly. Snail's pace if you need to!

 

I want to echo frieze's thoughts on methylation and MTHFR. Dr. Ben Lynch has some good information on MTHFR (his website: Open Original Shared Link) Also, Dr. Amy Yasko has some really good information on methylation in general (her website: Open Original Shared Link).

 

Best wishes,

Ninja

 

Ps – If you have not had your folate levels checked, it may be a good idea to ask for that test along with the B12 and methylmalonic acid, as B12 and folate very much work together.

[dilettantesteph]

I looked at those links and there didn't seem to be any MDs involved.   That makes me supicious about validity.

 

Quote fron Ninja:

"Dr. Ben Lynch has some good information on MTHFR (his website: Open Original Shared Link) Also, Dr. Amy Yasko has some really good information on methylation in general (her website: Open Original Shared Link)."

[Ninja]

Hi dilettantesteph,

 

Totally understand your concern, however MTHFR is well studied by MD's as well. I encourage anyone who has questions about the validity of either of the Dr.'s I have mentioned to do a PubMed (or equivalent) search. I do not agree with everything they say, but have found some helpful information. I am only reporting what has worked for me. (I have been working with my MD's and monitoring B12 levels as well as a few others.) It has really made a huge difference, and while the latter is anecdotal, I figured it might also be able to help the OP. Apologies if it has caused additional confusion or harm.

 

Ninja

[jebby]

Jebby

perhaps you are a nonmethylator?

Hi Frieze,

That's a good thought, but I had the 23 and me testing done last year and I do not have a genetic profile associated with any of the common methylation problems, such as MTHFR.

Is that what you meant? 

Jess

[frieze]

@jebby, yes that is what I meant, the quote function seems not to be functioning......anyway, something to be checked for others.

[Celeste77]

Holy Cow, Holy Red Bull...

 

The most bizarre thing... I’ve had a few commitments over the past handful of days. Desperate for energy and the ability to think/function, I grabbed Red Bull from the gas station. I know, terrible, but desperate.  The first one (Saturday night) was helpful but no more helpful than a cup of coffee. But then I had one yesterday, a larger one, HOLY COW! I wasn’t jittery or crazy energetic, I just felt….NORMAL. So then this morning I had a long drive in front of me so I had ½ of a small Red Bull and stopped myself… realizing that it is Red bull after all and I don’t want to push a PPM issue. I’ve also been a no packaged or processed foods girl for 3 months now, so this is a big NO for me.  BUT, for the first time in a loooooong time, I didn’t feel drowsy or spaced out, my body didn’t feel heavy, I just felt calm and normal and happy!  I even tossed some witty sarcasm at my fiancé who was thrilled to see “me” shining through.

 

For anyone who isn’t familiar, Red Bull has less caffeine that a cup of coffee but it does have B12, B6, Niacin, Panthothenic Acid, all in measurable quantities that exceed 100% of the daily recommendation. I drink about 3 cups of coffee a day (I replaced my coffee with Red Bull in these instances) so I can say with confidence, that it is not the caffeine.

 

2 weeks ago I reached out to my endocrinologist asking if he’d retest my B12 levels. I didn’t get a response. Last Thursday I reached out again and heard nothing until today and now playing phone tag with the nurse. Wouldn’t it figure? After I decided to abandon my better judgment and consume these drinks?  Does anyone know if consuming high doses of B12 alter my blood tests and if so, for how long? I’m having him check serum B12, methylmalonic acid, homocystine, folic acid.

 

I’m done with the Red Bull binge. There are other things in the drink that I don’t want in my body of course. But I could just cry thinking that I could, and likely will, go back to feeling horrible again. As always, thank you everyone for all of your comments & suggestions! I am reading them and taking all very seriously.  

[GFinDC]

Hi Celeste,

 

Are you taking any vitamins with selenium?  Selenium affects is used in hormone production in the body.  So it is important to have enuff of it for your body hormones to be produced.  Yo can test for selenium deficit by eating a couple braziil nuts.  They have a lot of selenium in them.  You can get too much of it if you over doit, so it 's not something to take a lot of everyday.

 

Another thing you could try is ginseng.  Ginseng may help stimulate hormone production.

 

I wonder if you have tried going caffeine free?  Caffeine is disruptive to the cortisol cycle in the body.  For me it has a bad effect if I drink it for a month or so.  My body begins to react to it and I get tired and don't sleep well, but end up sleeping alot, if that makes any sense, yet still being tired.  Cortisol has a natural cycle that is supposed to taper off in the afternoon, but caffeine disrupts that cycle.

 

Open Original Shared Link

 

IMHO caffeine isn't a problem for most healthy people.  But it seems to me it can have bad affects on people who aren't particularly well or have reactions to it for some reason.  The best way to find out if it is negatively affecting you is stop all caffeine, including coffee, tea and sodas for a month or two.  That gives your body a chance to normalize it's hormone production as best it can and stabilize.  For me after being off caffeine for a few months I can restart it and feel fine for a while.  But I always get negative symptoms after some weeks have gone by.  It kind of creeps up on ya.

 

Anyway, these are just some ideas of things you could try.  Your symptoms sound like they could be a hormone imbalance to me.  At one point I had to drink coffee or soda every couple hours to keep vertical.  It just becomes a treadmill after a while.  I hope you find your answer!

[glutenfree7562]

Wow, you and I have very similar symptoms Celeste! I didn't get better either with just a gluten free diet, I actually didn't get better at all and even got worse. I was so exhausted and dizzy I couldn't get out of bed most days. The only thing that helped me was doing the GAPS introduction diet for a full month. After this I have stuck to the GAPS diet but with tons of juicing and some added elements of the Gerson therapy, such as drinking castor oil. I have made SO much progress! My constant bloating is 80% gone as is my pain. My life long anemia is gone, I have more stable energy and have been able to return to a normally scheduled day, and I even exercise occasionally. I started the GAPS intro about 6 months ago and have made huge progress, theres still some symptoms I need to clear up but looking back at how sick I was its like night and day. 

[dilettantesteph]

Look into pancreatic insufficiency. 

 

Exocrine Pancreatic Insuffiency

Open Original Shared Link

"Nonpancreatic causes of EPI include the following:

Celiac disease (secondary to decreased pancreatic stimulation): This leads to EPI in about one third of patients and may be an unrecognized cause of treatment failure. "

 

The symptoms seem much the same.