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

celiac b12 symptoms exhausted depression anxiety fatigue

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#1 Celeste77

 
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Posted 20 March 2014 - 07:50 PM

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

 

 


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#2 frieze

 
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Posted 20 March 2014 - 09:18 PM

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

www.stopthyroiedmadness.com/mthfr/


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#3 nvsmom

 
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Posted 20 March 2014 - 09:29 PM

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.
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#4 frieze

 
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Posted 21 March 2014 - 02:41 AM

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


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#5 GFinDC

 
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Posted 21 March 2014 - 05:47 AM

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.

 

http://lmgtfy.com/?q...h b 12 levels ?


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 dilettantesteph

 
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Posted 21 March 2014 - 05:49 AM

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.  http://www.biomedcen...1471-230X/13/40

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?  http://www.ncbi.nlm..../pubmed/7354869

http://www.ncbi.nlm....cles/PMC292032/


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#7 Celeste77

 
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Posted 21 March 2014 - 09:17 AM

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

www.stopthyroiedmadness.com/mthfr/

 

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! 


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#8 anti-soprano

 
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Posted 24 March 2014 - 07:10 PM

Mast Cell Activation Syndrome is another possibility.  

http://www.celiac.co...-syndrome-mcas/

 

Here is a complete list of symptoms:

http://www.mastocytosis.ca/signs.htm

 

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.


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#9 jebby

 
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Posted 24 March 2014 - 09:42 PM

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


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#10 frieze

 
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Posted 26 March 2014 - 03:10 AM

Jebby

perhaps you are a nonmethylator?


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#11 Celeste77

 
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Posted 26 March 2014 - 08:40 AM

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? 


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#12 dilettantesteph

 
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Posted 27 March 2014 - 08:25 AM


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. 


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#13 Celeste77

 
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Posted 28 March 2014 - 07:03 AM

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? 


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#14 dilettantesteph

 
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Posted 29 March 2014 - 06:55 AM

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. 


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#15 Ninja

 
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Posted 29 March 2014 - 11:07 AM

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: http://mthfr.net) Also, Dr. Amy Yasko has some really good information on methylation in general (her website: http://www.dramyyasko.com/our-unique-approach/methylation-cycle/).

 

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.


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