Awakening To Possibility Of Celiac's

[Marcus B]

Ok...I apologize if this is long, but I really need help and have has sort of an epiphany with regards to my heath which has lead me here....a celiac's Board.

 

First off I am a 52 year old male and have a long list of "unexplained health problems" none of which are life threatening at this point.  That list of problems/issues grew over time and none have truly ever been resolved...they just seem to pile up.

 

I have to go back to my childhood for the full explanation as it "may" have started there.

 

When I was a young kid, I was pretty normal physically.  That is until I turned 12 years old.  I look back a photos prior to that and I was of normal weight...though very short for my age.  I grew up in a huge family but I had a brother who who was literally one year older.  My brother was always 6" taller than me or more since I can remember.  We grew being forced to eat (and finish) whatever was on our plates. Meals consisted of lots of veggies, pastas meats breads eggs rice etc...hardly ever had processed/frozen foods.  Lots of junk food sugars and soda for snacks...typical in those days. 

 

At the age of 12 I entered 7th grade and my physical features changed dramatically.  I wasn't get taller but my weight changed.  I did not grow taller as I was actually the shortest by in my 8th grade class.  But during those 2 years I looked emaciated.  My cheeks suddenly got very hollowed and I was suddenly being made fun of at school. (my cheeks are extremely hollowed to this day.  Teachers literally talked to my parents about my needing to see a doctor and they told the teachers to mind their own business as I had not missed a day of school in years.  (It was actually true).  back in those days, with a big family, you only went to the doctors when you were sick...not for health check ups.

 

besides being very skinny, I did ok.  Smart in school, not often sick.  Lots of cavities though, but without flouride in the water, that was common.  if I had a true health concern it was that I was extremely gassy all the time.  (I later on in life determined I had always been lactose intolerant)  

 

My weight problem continued through high school.  And what made it worse was I had very delayed puberty....I never actually hit puberty...It sort of gradually happened but certainly not until the very end of high school and even later believe it or not.  lots of bullying etc which crushed my self confidence, but I put up with it by hanging around a core group of friends who were bigger than me.  I actually grew much taller when I got to high school...ended up at 5'11" on graduation day, but only got up to 112 lbs.  I was skinny.  My parents always told me I had "high metabolism".

 

In college I had had enough of being the 98 lb weakling and started lifting weights seriously.  Very regimented...all in an attempt to build mass.  (Which I continued for 8-10 years)  I slowly put on muscle over those years...no fat whatsoever.  I became very strong but still had the hollowed cheeks.  My bone size was that of a much smaller person (thins wrists, ankles etc) which made me look even more "V-shaped" and appear much bigger than I was...all muscle and no fat made much heavier than most people would guess for my size.  After about 3 years I weighed 150 lbs and  finally got up to about 175 at my weight lifting peak.

 

That put me into my 30s now.  Healthwise I started having some weird things going on.  For a while I started getting asthma...I would get it from eating weird foods like cilantro *(or cold air or excercise).  This was the only issue I can honestly sayn that Ive had that actually rann its course and went away after about 3 years of constant problems (took a steroid inhaler that may have helped).

 

Then in my late 30s I started noticing edema in my lower legs.  Drs say it was nothing to worry about and was probably caused by eating too much salt.  was a nuisance, but just lived with it.  Some days it was horrible and others not so bad...but always there.  (Still have today but worse.)

 

Then started taking statins for high cholesterol.  Mind you I didnt have an ounce of fat but apparently my intake of fats was causing problems.  (There were long periods where I would go off statins to see if my edema was caused by Statins..no change whatsoever.)

 

This is when I realized I had lactose intolerance.  My gas was (and still is) chronic and ws getting worse.  Embarrassingly bad at times.  I could get gassy and bloated for hours nearly every day at least for some period of time.  At times Id just have to separate myself from the rest of the family to hide it.  I tried stopping ALL lactose but although it reduced some of it, it didnt really resolve it.  Sometimes these attacks will last for days and I just assumed there must be lactose in other things.  

 

I finally had a lactose tolerance  test and weirdly it came back negative.  I still cannot figure that out as I know it effects me....but certainly not the only cause of my problems.

 

So about 14 years ago I start getting glossitis on my tongue (Geographic tongue).  Drs tell me its benign...and it just happens top some people.  It would constantly change and burn and though worse at some times more than others...always there at some level and never went away.

 

About 12 years ago I start getting all kinds of body/joint pain.  No explanation...just chronic joint pains.  Plantar Fasciitis, everything began aching.  Dr just said to take anti inflammatory drugs (naproxin)  which I took regularly for long periods but only when bad. Still  bad and getting worse.

 

Then about 6/7 years ago I notice my vision (which was always 20/20 or better) suddenly nosedive.  Everything starts getting blurry and I suddenly needs a flood of extra light just to read.  I get glasses and the prescriptions have gotten stronger and stronger but still need bright light everywhere.  I always had some level of night blindness since a child, but suddenly I needed bright lights in the day time to read anything.  Thats when Drs noticed Retina odd retina degradation and discoloration which the Drs were afraid was Retinitis Pigmentosa but they cannot explain it and I go back to the Retina specialists to watch the condition every 6 months.

 

So now about 5 years ago I suddenly start getting tinnitis and notice worsening hearing problems.  (cannot hear anything with any background noise whatsoever...constantly asking my wife to tell me what they said on TV to an annoying level.  Tests confirm some hearing loss.

 

 Though Ive always gotten tons of cold sores my whole life (internal only)...Drs say that they happens for no reason....but I get a tone of them.  Now suddenly start getting lesions on my lips which return every 6 months. A horribly painful lesion that gets worse and then gets better over 2 weeks.  Never had anything like this (and been married for 20 years at this point) but the dr calls it a herpetic lesion.  Says food and sun can trigger them.

 

So now about 4 years ago I start noticing muscle twitches in my calves.  Tiny movement, nerve firings, in my calves just under the skin.  (looks almost like worms moving under my skin).  Always there...not painful.  Just weird.  Dr has no explanation.  Then a few months later I notice huge twitches in my shoulder when I raise it and various bigger twitches that fire off randomly when ever I sit still.  (Neuro tests come back negative) Dr attributes it to vitamin deficiency...prescribes magnesium...I see no change and still have the phenomenon but try to ignore it.

 

Then I start getting muscle weakness and chronic fatigue.  I start feeling weakness in my arms just carrying light groceries.  Now I am a very strong person til now, but I start fatiguing with only light loads.  My legs start getting tired just walking up one flight of stairs.  Drs have no solution and dont see anything wrong.  Drs cannot explain.

 

In the meantime my blood pressure creeps up to the point that I am now about to start on blood pressure medicine.

 

So fast forward to about 4 months ago.  I start noticing my gut is protruding and full all the time.  Now Ive a had a "gut" meaning internal fat only for about 5 years now.  Just attributed it to getting older.  I do not drink yet have this odd beer belly. Overall weight is about 180-185 as I always maintained my muscle mass...just no surface fat.  But suddenly I have excessive "fullness" that is actually impeding my breathing when I tie my shoes or just sit.  I set up a physical...dr is not concerned although suddenly I am at about 195 lbs...unusual for me.  Liver tests come back with one out of range (AST).  Dr no concerned and says she will retest in a few months.  I am bothered bny this so I go back and she reralizes there are other slight anomalies and orders an Ultrasound.

 

Retest shows a Fatty Liver.  Tells me its common and nothing to worry about and just to to a gastroenereologist.  (But it is weird to have a Fatty Liver when thin and a non-drinker).  Gastro Dr says I also have dilated bile ducts...MRI is scheduled and pending right now.

 

Here is the kicker.  After I had the fatty Liver diagnosis, (7 weeks ago) it scared me a little and I completely changed my diet to eliminate all fat/margarines (only olive oil), salt (processed foods/snacks/canned goods), corn syrup, milk and sweets.  I basically went to a full on vegetarian diet except for an occasional egg.  First time I EVER changed my diet except to "reduce" drinking straight milk.

 

The change was sudden.  I lost about 8-10 lbs in just over a week, my distended belly went to about 1/2 what it was (breathing easier), energy came back (no fatigue), cloudiness in my brain that creeped up so slowly was suddenly not there.  I was feeling 10 years younger and attributed it to the lack of fat bothering my liver.  My edema completely disappeared (saw veins in lower legs for 1st time in a decade) and within 2 weeks my glossitis disappeared for first time in over a decade.  Still get gassy, but not nearly as much...just sporadically.

 

So I told  a friend of this discovery and she said she thought my symptoms sounded more like food allergies (she is gluten intolerant and is well read on it).  I laughed it off and said...no, its the fat thats been killing bothering me all along.

 

What I didnt realize was I had also removed much of the bread from my diet (because I was no longer eating cold cuts or sandwiches or crackers etc....pretty much just salads.  So I started eating a bagel in the AM and sliced bread and crackers again.  Big mistake,  The pain, bloating gas, started to reappear.  

 

So that brings me to today. I read all about celiacs after doing a search on "glossitis causes" and saw a recent study tying it to celiac's.   Looking at symptom lists (except the chronic diarrhea) it is all adding up.  But is it possible that ALL my health problems throughout my life could be attributed to celiac's disease....shouldnt I be dead by now if that was trul;y the case?  If it is the cause, could a change in diet reverse any of this or just stop it from getting worse?  ANYONE HAVE A REMOTELY SIMILAR STORY TO MINE?

 

I would appreciate any feedback at all.  And yes, I apologize for all the detail but its been a long long journey to this point with no answers or connectionsn and there was no way to make it brief otherwise.  Knowing what I stated, would you demand a Celiacs blood screening to be done?

 

 

 

 

 

 

 

 

[kareng]

You should certainly be tested for Celiac.  However, you need to be eating gluten for the testing to work.

 

It is very common to lose your close vision  by your late 30's or early 40's - for all people - Celiac or not.  Sorry.  

 

 

 

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[Celiacandme]

I would definitely request that the full celiac panel be run on you. Like Karen said though you need to be eating gluten for accurate results. Keep us posted!

[JazzyJake]

I think you should talk to a gastroenterologist.  The blood tests for the celiac markers are the first step.  The doc may want to do a biopsy of small intestine tissue to both confirm celiac and to determine the extent of the disease.

 

Don't freak out!  The biopsy is done via endoscopy (tube through mouth into digestive tract) and does not hurt.  I just had one about 3 weeks ago - it confirmed celiac.  Oddly it was my neurologist who diagnosed celiac NOT my gastroenterologist.  The latter then confirmed the diagnosis with the biopsy.

[etbtbfs]

I am a male and a celiac. Some obvious parallels with my situation ... Lots of cavities as a kid, couldn't gain as much muscle as other boys, lots of cold/canker sores that continued well into adulthood. After getting a celiac diagnosis, and years of trial-and-error treatment, the continuing problems that are now treated are:

Hypothyroid. Hashimotos is one of many autoimmune disorders triggered by celiac.

Low Total Blood Protein (TBP). As early as age 38, celiac was reducing the ability of my body to process enough protein from food. Low TBP caused degeneration of muscle and connective tissue. Corrected this problem with free essential amino acids.

[Marcus B]

Thank you all for the encouragement!  After feeling so good the last few weeks, I must say I am hesitant to go back to eating grains for the sake of the test.  How long would I have to be gluten free to cause a possible "false negative" on the test?  I mean if ate an absolutely gluten free diet for 4 weeks, would it be most likely to come back negative or are people talking about a year off the gluten?

 

yes I know I am thinking short term.  But i am also realizing how horrible Ive felt especially these last few years.  Would a doctor ever go directly to biopsy without blood work based on physical past symptoms and collaborating evidence over the years?  I am assuming a biopsy would show the life long damage to the small intestine regardless of how long I was gluten free as I assume that celiac damage to the intestines is permanent.

 

Could I literally just eat a half dozen bagels the day before the test?  (weirdly the thought of that now scares me)

[kareng]

Thank you all for the encouragement!  After feeling so good the last few weeks, I must say I am hesitant to go back to eating grains for the sake of the test.  How long would I have to be gluten free to cause a possible "false negative" on the test?  I mean if ate an absolutely gluten free diet for 4 weeks, would it be most likely to come back negative or are people talking about a year off the gluten?

 

yes I know I am thinking short term.  But i am also realizing how horrible Ive felt especially these last few years.  Would a doctor ever go directly to biopsy without blood work based on physical past symptoms and collaborating evidence over the years?  I am assuming a biopsy would show the life long damage to the small intestine regardless of how long I was gluten free as I assume that celiac damage to the intestines is permanent.

 

Could I literally just eat a half dozen bagels the day before the test?  (weirdly the thought of that now scares me)

 

 

Please look at the links I give you from the Celiac Center at Univ of Chicago.  They are Celiac experts and have an easy to understand website.

 

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[BlessedMommy]

I know that it's hard to think of going back to eating gluten for the sake of the test. But you haven't been gluten free for very long, so now is the best time to do it. And an official diagnosis is so valuable!

[RMJ]

I would try to get the blood tests as soon as possible IF the doctor understands that you have been gluten free for a few weeks, a NEGATIVE RESULT WOULD NOT MEAN ANYTHING, and that tests might have to be repeated after a gluten challenge. It often takes more than 4 weeks for antibody levels to go back to normal. You might even be able to order the tests yourself from mymedlab.com if it operates in your area. Then you wouldn't even have to tell your doctor if they were negative.

[Marcus B]

Ok...so as i stated in my original post, and ultrasound done in December showed I had a fatty liver (Lean -Non alcoholic Fatty Liver disease) and a dilated bile duct.  Thats when I cut fat, salt, corn syrup (any) and most wheat from my diet.  I later cut all gluten from my diet.  Saw a gastro doctor who scheduled an MRI on me last Wednesday (roughly 6 weeks) to find what was causing my bile duct to dilate to 11mms (normal is 4 mm for my age).  ( by the time they did the MRI, I admit I was now feeling fantastic)

 

Results came back today.  Liver is now normal.  No dilation of the bile duct.  Pancreas normal. all ducts normal.  Gall bladder normal.  No indication of gall bladder problems/stones anywhere.

 

No explanation as to why this correction happened and why so quickly.  I of course attribute it to removing gluten, but would it be realistic to believe that I could experience a change in a major organ like the liver in that short a period of time just by removing gluten fats and sugars?  Should I consider this as just further confirmation that I may indeed have celiacs?

 

My Dr is willing to do the test but wants me back on a normal gluten diet for 1 week before doing bloodwork and 3  weeks before doing the endoscopy.  (she will do both regardless).  I read the one link stating that I could literally just eat 1/2 slice of bread per day and I think I am willing to do that but still stay off the fats,  salt and corn syrup products.

 

Thank you all for all the support and wish me luck! 

 

 

[kareng]

Ok...so as i stated in my original post, and ultrasound done in December showed I had a fatty liver (Lean -Non alcoholic Fatty Liver disease) and a dilated bile duct.  Thats when I cut fat, salt, corn syrup (any) and most wheat from my diet.  I later cut all gluten from my diet.  Saw a gastro doctor who scheduled an MRI on me last Wednesday (roughly 6 weeks) to find what was causing my bile duct to dilate to 11mms (normal is 4 mm for my age).  ( by the time they did the MRI, I admit I was now feeling fantastic)

 

Results came back today.  Liver is now normal.  No dilation of the bile duct.  Pancreas normal. all ducts normal.  Gall bladder normal.  No indication of gall bladder problems/stones anywhere.

 

No explanation as to why this correction happened and why so quickly.  I of course attribute it to removing gluten, but would it be realistic to believe that I could experience a change in a major organ like the liver in that short a period of time just by removing gluten fats and sugars?  Should I consider this as just further confirmation that I may indeed have celiacs?

 

My Dr is willing to do the test but wants me back on a normal gluten diet for 1 week before doing bloodwork and 3  weeks before doing the endoscopy.  (she will do both regardless).  I read the one link stating that I could literally just eat 1/2 slice of bread per day and I think I am willing to do that but still stay off the fats,  salt and corn syrup products.

 

Thank you all for all the support and wish me luck!

Yes. Liver enzymes can return to normal quickly with Celiac disease -

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If you read the link I provided to the Celiac experts - a 1 week gluten challenge would not be enough.

[Marcus B]

Ok...Followup as some requested.

 

Had a Endoscopy done today and though nothing "visual" in the small intestine, they sent it out for biopsy.

 

The other thing they saw is reddening in the stomach walls that needs to be biopsied to check for suspected H.Pyori bacterial infection.  This may be the real problem as recently Ive been looking into my numerous symptoms and suspecting a possible B-12 Deficiency connection.  MANY of my symptoms relate to that very well and I started taking a sublingual B-12 supplement.  (which I just recently read may not work sublingually due to the size of the b-12 molecules).  

 

Anyhow, I thought it may be tied to Celiacs because of the non-absorption issue, but may be due to that bacteria as it is known to cause damage to the stomach walls and destroy the stomachs ability to create Intrinisc factor enzyme necessary to absorb B-12.  My dr is now doing a blood test to see if I truly do have b-12 deficiency...I'll update later

 

thanks all.  Really feel I am finally getting closer to something here so thank you all for the support.