<<Disclaimer: Verify this information before applying it to your situation.>>

I posted my earlier message below if anyone wants a reference/reminder.  I appreciate all the responses, candor and information.  Immediately below are some of the responses I got.  It is nice to be validated.

(Thanks to those who let me know about their symptoms that went away after going GF, advice, and opinions. )

Cathy - NC
GF December 2013
Facebook Page:  Celiac and Gluten Awareness
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I think when you have celiac for so many years and are undiagnosed the villi never totally heal.  I was diagnosed at age 49 but had symptoms since age 3.    I have arthritis in my neck and pretty much everywhere. The rheumatologist I saw said it was celiac related arthritis caused by being undiagnosed.  He said it is a type of inflammatory arthritis. I also believe what shows on xray doesn't always correlate to your pain level.  I have severe arthritis in my back but my pain is in my neck shoulders and hands.  This is why when children are diagnosed I think hopefully they won't have problems later on.  I also have terrible fatigue. I have been gf for 17 years.  
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I have had degenerative disc disease since my 20's, lumbar and thoracic.
 
One of the things that I have done to combat fatigue is to take GF senior vitamins every other day, take B complex tablets every other day, and take one Calcium with Vitamin C tablet at night. I have good bones because of this. I had severe brain fog for years until I started this vitamin regimen.
 
I eat as much vegetables, veggie smoothies, fish, some meat (not just chicken), as I can during the week. I only use processed GF food minimally like bread. Food has to have some true vitamin or mineral value for me to eat it. I eat nuts and use low calorie almond milk (no sugar, less calories, more potassium, etc.) instead of milk in coffee and cereal with fruit. I eat apples or pears at lunch time every day. If I have to buy bottled water I only buy spring water for the minerals.
 
I am lucky that I work for the Dept. of Aging and have attended many nutrition based seminars for free and have learned a lot from them. Check out hospital programs on nutrition for free advice.

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I was undiagnosed for many years and 9 years I almost died before they finally figured it out. 

Now I have cancer. It's one of the things they warn you about. My first bag of chemo is dripping in as we speak. My thyroid is way under active. Also caused by celiac. 
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I was undiagnosed about 30 years (from looking back).  I had severe
migraines until I was on the GF diet for maybe 1 couple years or a little
less.  I am osteopenia because the malabsorbption kep the calcium out of my
body.  I took a bone builder for 5 yrs until it scared me.  I am currently
osteopenia (recent bone density test).  I have osteoarthritis in my hands
but so did my mom so maybe genetic.  I was so very tired but not anymore - -
by the way, I am very careful and do not cheat.
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   Yes, there are definite health issue with gluten for celiacs.
Simply put: gluten in a celiac's diet causes the auto-immune
response that shouts down the intestine's ability to absorb
nutrients from the food we eat. Without nutrients the body
cannot generate all the chemicals, compounds, tissues,
structures needed for proper functioning of bodily organs,
joints and muscles. Which is why undiagnosed - and therefore
untreated celiac - results in many problems across the entire
body ... the knee joints don't get the nutrients they need, they
degenerate, the brain does not get all the nutrients it needs, 
its chemistry goes out of balance, the bones don't get the 
calcium they become brittle.

      In my case, pre-diagnosis:
- Severe migraines that lasted weeks, sometimes months
- Severe joint pain in my right knee that would last for week, sometimes months
- Without warning I would get needle sharp, spiking, shooting pain in my
          legs that would make me wince!
- Of course all the GI problems all of us get ... gas, bloating and in my case
        lactose intolereance.

     Again, for me, all these things went away within 2 weeks of going GF and 
have never come back. As best as I can tell my celiac disease was triggered
in my late twenties and went un-diagnosed for almost 20 years.
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It took me 2 years to fully recover from extreme fatigue.
2nd email:
How old are you? 
  I'm 62,  
my mother was undiagnosed for about 30 years.   with extreme health problems.
3rd email (asked further about mother)
At least 2 major operations to remove part of her intestine.  Constipation, lots of belching.  They would probably say reflux now.   
    After I was diagnosed it was obvious what her problem was. 
It was a tough road,  but she had several good years after she was diagnosed
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I can’t say much about celiac causing your health problems except for the fact that you had undiagnosed celiac for 40 years and your body was not receiving proper nutrition.  Our bodies absorb nutrition from our food from our intestines and when everything that goes in goes straight to the toilet, not much nutritional value there.  Which may explain why you have bone and knee issues.
 
Sorry, but the anxiety never goes away.  At least for me it hasn’t and I have been gluten free for over 25 years.  I also am a long time undiagnosed celiac with DH.
 
What I do know, in my case, the undiagnosed celiac contributed to both diabetes and thyroid disease.
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I've been an undx Celiac [runs in my family] since Jan 1981 when I went gf. Gradually over the last 15 years after I was given meds for essential tremor, osteoporosis, etc, I realized that I react to most meds. I created a spreadsheet with the dates the meds were taken, the different meds themselves, illness they were for, and comments/reactions; my different doctors are impressed. Sample attached.

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My original email:

Hey, I need some validation.  I had Celiac for 40 years before a doc found it.  I know, that's not uncommon.  But these are some health things that I think or know was likely from undiagnosed Celiac.  I guess I'd like to know of others experiences? Here are some things I think or know:

Migraines so severe it left marks on my brain.  Have a low humming in my ear as a result.  (I had testing to prove the humming/ringing is from the migraines.  Not menieres or anything else.)

Mild scoliosis. 

Degenerating disks in neck and low back since my early 30s.  I suffer low to severe pain daily as a result, but the degeneration is too mild for doctors to believe me.

Early 40s I was diagnosed with osteoarthritis in both knees.  I'm not an athlete nor does anything explain the reason.  Doc said I have the knees of a 60 year old.  I'm likely going to need both knees replaced within 10 years.  Hips are fine, though, with the exception of bursitis diagnosis in my mid 20s.

Even though I know I'm 100% GF, I still have anxiety.  Maybe it takes a while to go away?  Been GF 2 years now.

Periods of days to weeks of severe fatigue.

I appreciate input.  I don't really need advice on handling any of the above.  I've been dealing with this stuff long enough to have learned tricks over the years.  I'm mostly curious about others who went undiagnosed for a long time and the health issues you suffered or currently suffer.  (Just an FYI, I have had blood tests and an endoscopy to show I was 100% healed a year ago.  I know right away if I've gotten even trace amounts of gluten.  So no, I know I'm not getting any gluten from anything.)

Thanks, all.
Cathy - NC
GF December 2013
Facebook Page:  Celiac and Gluten Awareness

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