Childhood symptoms predictors of later autoimmunity?

[Zizzle]

I've been reading your posts and searching this forum with great interest for days. Thank you!! I've felt so alone in the treatment of my LC until now! I posted earlier that I appear to be a ticking timb-bomb for autoimmune disease. I saw a rheumatologist 5 years ago who noticed things about me that I thought had no relevance, which got me to think about all the weird and pesky conditions I had as a child that no one could ever explain. Overall, I was a very healthy child. No chronic diseases, no allergies, no bowel problems. I was breastfed, developed common childhood GI infections living abroad (protective perhaps?). But I just felt different...

I'll provide the laundry list...please tell me if you had/have any of these growing up, and if you feel they are of any significance. Also feel free to tell me they are just musings of a crazy hypochondriac!
I'm also wondering whether any of these are common in those with the HLA-DQ2 genetic make-up.

1) Heart murmur - diagnosed as MVP, then diagnostic criteria changed, now just heart murmur. I always had a hard time with endurance sports and still have palpitations and racing heart while trying to exercise. I always feel out of shape (endurance-wise).
2) Dermographia (skin writing) - I've always been able to scratch my skin and develop red marks for several minutes where I scratched (try on your forearm). Apparently those are mast cells/hives, and are a sign of allergy/autoimmune predisposition. I also have sensitive skin.
3) Joint hypermobility and muscle flexibility - I am "double-jointed" and could hyperextend my fingers, elbows, knees. I even mildly dislocated my hip in gym class once. I was also the most flexible athlete on my sports teams. Yet I seemed to cramp more than others too. Luckily aging has lessened the extreme flexibility. The rheumy said joint hypermobility predisposes me to RA.
4) Fairly frequent UTIs
5) Very frequent canker sores (I know they are a sign of celiac), but they stopped around age 25. I was told they could be viral? Also freqeunt aftabs (sore bump on the tongue), especially after eating pineapple, eggplant, strawberries, etc. Just acidity?
6) Benign tremor - my fingers tremble when outstretched
7) Low blood pressure and postural hypotension (sometimes 80/40, now 90/60 is common). I thought I had low blood sugar too.
8) Restless legs - mostly below the knee (feet always moving), but I often unconsciously shake my leg, especially while eating (annoying everyone at the dinner table)
9) Easy bruising (without anemia) - my legs always looked like I'd been beaten up. Any slight bump to my body always left a bruise.

Thanks for your input!

[Joefnh]

Zizzle that's an interesting thought. I cannot reflect on all of the items in your list but I will outline the ones I dealt with.

In my childhood, I had the following

1.) Mitral valve prolapse
2.) Systemic allergies requiring immunotherapy
3.) Mild hyper-thyroid that corrected with age
4.) Joint hyper-mobility
5.) Cancer sores (aka cold sores)


Thanks for posting this thread, it will be interesting to see if there any commonalities.

--Joe

[tex]

I'm not aware that the first three items on your list are connected with MC, (though that doesn't mean that they can't be), but except for number 7, (which I also have no information on), all the rest of them are definitely connected in one way or another.

UTI's, canker sores, mouth sores, etc., restless legs, easy bruising, and even tremors, are very common with this group. Last year, during an exam by a neurologist, he noticed my peripheral neuropathy symptoms, (caused by years of untreated gluten-sensitivity), and when I admitted that I had noticed some unexplained tremors a couple of years ago, (in response to his questions), he promptly diagnosed me with Parkinson's disease. I have since then, managed to get undiagnosed, , (by convincing another neurologist that the first one made a mistake).

Most of those issues are caused by, (in order), bacterial imbalances/overgrowth, gluten-sensitivity, and vitamin/mineral deficiencies, due to malabsorption problems, (particularly the "B" vitamins, and especially B-12 and B-9, [folic acid],). For example, after noticing that I was developing an easy-bruising problem, I started taking a multivitamin, (together with a sublingual B-12/B-9 supplement that I was already using from time to time), and within a couple of weeks, the easy-bruising problem went away, as did the severe foot/leg cramping problem that I was also having.

Tex

[mbeezie]

Hi Zizzle,

Your symtoms sound a little suspicious for a mast cell prolem. A few of us on this site have discovered mast cell issues. Exercise intolerance, bruising, dermatographism, and low BP are all symptoms, as well as GI complaints. You may want to request a tryptase stain for mast cells on your next colonoscopy. You could go to www.tmsforacure.org for some info to read about some of the symptoms. Don't get alarmed about the systemic mastocytosis info - that's quite rare, but it's now being discovered that many people probably have a different version that isn't well understood. Getting my GI tract in better working order has done wonders to calm down my mast cells and alleviate the other symptoms.

Mary Beth

[starfire]

This seems rather interesting. I copied your list and addressed the ones that seemed applicable to my experience.

1) Heart murmur - diagnosed as MVP. Mild case apparently. I've never been able to deal with endurance sports either.

2) Dermographia (skin writing) I haven't noticed this so much in later years but I know I have had this to some degree.

3) Joint hypermobility and muscle flexibility I am certainly not double jointed but I've always been more "flexible" than most people. Such as being able to place my palms on the floor without bending my knees

5) Very frequent canker sores (I know they are a sign of celiac), - Don't know if they were VERY frequest but I can remember having them often.

8) Restless legs - Always been plagued with this. Involves hip joint down.

9) Easy bruising (without anemia) - yep, always had this. Most of the time I have no idea what caused the bruise

[Zizzle]

For those of you with MVP, this is an interesting read:

http://www.wright.edu/nursing/practice/mvp/

"Mitral valve prolapse is believed to be inherited, with a greater expression of the MVP gene in females. Although people with MVP come in all shapes and sizes, there are physical features commonly associated with MVP. These include: pectus excavatum depression of the breast bone, scoliosis curvature of the spine, abnormally straight thoracic spine straight back, arm span greater than height, unusual joint flexibility, and low body weight.

I forgot to mention I had mild scoliosis too...

[starfire]

Thanks for posting that link. It explained some things for me.

Shirley

[Zizzle]

Here's another interesting read for those with MVP, joint hypermobility, fibromyalgia, bruising, etc.
http://www.ctds.info/index.html

This woman attempts to synthezise alot of information about MVP syndrome and its relationship to connective tissue conditions (Ehler-Danlos, Marfan, fibromyalgia, many others). She is trying to prove that those "rare genetic" conditions are caused not just by genes, but by environment, with nutrition being the most important environmental contributor. Magnesium deficiency is the major one in MVP, Vitamin K, and several others. She talks about increasing her meat and fat intake while nearly eliminating wheat, and going on what we here would consider a paleo diet. She quotes Weston Price, who was a long-time advocate of a paleo style diet. The Weston A Price Foundation has an excellent website and is a good nutritional guide.

Here's an interesting entry on treating IBS, which acknowledges that IBS involves a disease process in the gut wall, and is not helped by consuming fiber.
http://www.westonaprice.org/ask-the-doctor/220-ibs.html

[tex]

Yep, that's a good article on IBS/fiber. As far as I can tell, doctors don't even know how to properly describe the condition known as IBS, let alone treat it effectively. Fiber is certainly not the "miracle" treatment that it is purported to be.

Tex

[Linda in BC]

Hi Zizzle:
I too have many of the same conditions you mentioned ...
1) Heart murmur - diagnosed with MVP at 17 years of age
,2) Dermographia (skin writing) - /sensitive skin. Prone to allergic rashes/hives as child
3) Joint hypermobility and muscle flexibility -
5) Very frequent canker sores
8) Restless leg Syndrome - (feet always moving), have had this all my life and it has been a real problem. Since I started taking magnesium ( and the LDN) it is pretty much gone.
9) Easy bruising (without anemia) -

Thanks for posting the link to article on MVP. they just told me at 17 that it was nothing to worry about so I have never worried nor gave it any consideration . But just a few years ago I read somewhere that it can affect your endurance/ breath and I realised that it must be why I could never run the 880 yard races in high school track but was great in the 100 yard dash!

Linda

[Zizzle]

Linda,
I was a sprinter too...100, 4x100, 200 and long jump, but I quit after 2 years because I couldn't keep up with the team during required long distance practice runs. No matter how much I practiced, I had no endurance, lots of leg cramps and soreness too, despite being the most flexible one on the team. Very frustrating. I didn't get the MVP diagnosis until senior year, and no one explained it could have an effect on my endurance and heart palpitations. If I run on a treadmill now, my heartrate quickly jumps to a scary high number. Most people would worry about a cardiac event at those levels, but I guess it's just my norm.

[Stanz]

Hi Zizzle, I'm going to use your categories here and change them as they apply to me:
1) Heart murmur -

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Have palpitations and racing heart when exercising and often have "pounding" heart periods for no reason.

2) Dermographia (skin writing) -

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I've always been able to scratch my skin and develop red marks for several minutes where I scratched  I also have sensitive skin and went through YEARS of skin issues where my skin literally peeled off in sheets.  I believe this related to traumatic events in my life and have since subsided.. 

3) Joint hypermobility and muscle flexibility -

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I could dislocate my hips at will and could hold my arms out palm-up and turn my hand around all the way w/o my arm moving.  I guess that's a bad description, but all I know is that nobody else could do this.

4) Fairly frequent UTIs -

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I had 14 UTI's in the 2 years prior to dx/w/MC, have had NONE since being GF and looking back in my history, I probably had them way more than normal all my life. If I feel I have a UTI coming on I use d-Mannose - have no idea how it works, just know I haven't had a UTI for over a year.

5) Very frequent canker sores -

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I had canker sores all my life until I went GF.

6) Benign tremor - my fingers tremble when outstretched -

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me too, haven't noticed it for a long time.

7) Low blood pressure -

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I have always had LBP, often fainted when under stress, my normal temp is 97.6.

8) Restless legs -

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 Don't have this, but have always had problems with leg cramps, and this has actually gotten worse for me in the last year.

9) Easy bruising (without anemia) - my legs always looked like I'd been beaten up. Any slight bump to my body always left a bruise.

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Oh, yeah, still have this, and they hurt to touch.

[Zizzle]

I think I was looking up causes for another seemingly insignificant symptom of mine - excessive yawning when I exercise. Yes, exercise is boring, but this is rediculous. I get on a treadmill and literally yawn the entire time. I've guessed it was my body seeking more oxygen, but I've read it can be a vaso-vagal reflex. Anyway, in my search, it came back to Mitral Valve Prolapse, the diagnosis I received as a teen. I seem to have the syndrome that accompanies it - it explains a number of my symptoms over the years. But I never thought I would come across a link to MC!!!

Incidentally, I searched for MVP on this forum and counted at least 10 members with it, surely a higher incidence than the general population, so I do believe our MC genes and MVP genes are related.

I'm not sure how reliable this site is, but they connect MVP to MC. There seems to be a clear genetic predisposition - since the (mostly) women affected share many physical characteristics.

http://www.digitalnaturopath.com/cond/C165057.html (scroll to the bottom to see the MC connection)

BTW, their description of MC is by far the BEST I've read on the web. They got almost all of it right, except they forget to include Endocort as a treatment. I may have to go see a naturopath after all!!

http://www.digitalnaturopath.com/cond/C683649.html

Curiously, most of the abnormalities seem related to an underlying instability of the autonomic nervous system. This is the part of the nervous system that regulates the internal functions of the body such as blood pressure, heart rate, sweating, body temperature, gastrointestinal activity, and emptying of the urinary bladder. It is believed by some that the mitral valve abnormality is a physical trait that is a marker of an underlying condition - autonomic instability - that contributes to symptoms and can trigger panic attacks.

Women are far more likely than men to be diagnosed with mitral valve prolapse. Interestingly, there is even a typical body type for sufferers: a slender young female with long, tapering fingers and a model's figure. Men can have the condition as can people with a different physique, but the majority seem to fit the standard profile.

People with mitral valve prolapse are especially sensitive to all kinds of drugs and medications.

The "instability of the autonomic nervous system" explains almost every strange and nuisance symptom I've experienced my whole life.

[Mags]

[quote][color=darkred]Women are far more likely than men to be diagnosed with mitral valve prolapse. Interestingly, there is even a typical body type for sufferers: a slender young female with long, tapering fingers and a model's figure.[/color][/quote]

Wow, Zizzle--I keep finding the most amazing things on this forum. I have MVP, and though I can no longer be classified as "young", the description fits. I wear a size 4 on my ring finger but can span an octave on the piano..

Dermographia--you betcha
I can place my hand flat on a table and turn it 360 degrees
No UTI's, though
No canker sores, but constantly badly chapped lips
Keratitis, dermatitis, and excema
Still have tremors--enough for people to comment on
Restless legs, arms, toes, etc; much better since I started on Baclofen
Low blood pressure--it was 90 over 68 the other day--it's been 100 over 50, etc. I've fainted frequently, especially when menstruating
Bruising has improved dramatically with addition of high quality Super-B Complex.

Thanks for the info--my family always thought I was a hypochondriac when I was a teenager--My mom also has MVP with some of the same symptoms.

Mags

[tex]

Zizzle,

Your mention of excessive yawning caught my eye, because I have had this problem also, except not just when exercising. I found that in my case, it was due to magnesium deficiency, because as long as I get an adequate amount of magnesium in my diet, I don't have the problem. If I short the magnesium, it can become a very frustrating problem. Not only does it make me yawn excessively, but it also makes me feel the need to take a deep breath, and I am usually unable to take a deep breath, when magnesium deficient. In such a situation, it can take many attempts, before being able to successfully draw a deep breath. Apparently, yawning is sometimes connected with the process of trying to draw a deep breath.

From the article you referenced:

Research has shown that 85% of patients with mitral valve prolapse have latent tetany due to chronic magnesium deficiency. A magnesium deficiency:

1. hinders the mechanism by which fibroblasts degrade defective collagen (connective tissue abnormalities are common in mitral valve prolapse),
2. increases circulating catecholamines (an important mediator in platelet aggregation),
3. predisposes the patient to cardiac arrhythmias, thromboembolic phenomena, and dysregulation of the immune and autonomic nervous systems.

Oral magnesium supplementation can provide relief of mitral valve prolapse symptoms.

The red emphasis is mine, of course.

FWIW, as far as I am aware, I don't have MVP.

Tex