Crackpot Theory?

[Jonbo]

(a little long, sorry)

Ever since my dx back in April, I've been trying to wrap my head around possible reasons I out of the blue got Celiac. Considering it started in December of '08 and dx in April (lucky to be dx so quickly compared to others...), and no one else in the family has it, just made me start thinking of this possible theory.

March of 2008 (after a few failed attempts), I finally got stringent with my diet (actually a lifestyle change)/weight loss. I went from fast food daily, weaned myself off of it completely, no pop, no "bad" foods except occasional 'cheat' which is minimal. 90% or more of the foods I ate daily were fruit/veggies with some meat. I was almost gluten-free at that point anyways without realizing it and only had the occasional meal my grandma made at the time (I worked overnights).

So I kept up the lifestyle of eating healthy/exercising, etc...etc... and dropped about 70-80lbs by December. Then the troubles began. At that time I had let myself off my nearly exclusive fruit/veggie and some meat diet and was eating a little more bad but not terrible. No fast food, just more of what grandma made (I lived in with her for a period of time to regain my financial ground). So my crackpot theory is that because I severely curtailed any processed foods, it opened a major sensitivity to Gluten down the road. This coming from someone who enjoyed a few beers a week with my friends before dx.

My other theory is that this is all related to a major event back in 2005. I had woken up to SEVERE (to the point that walking was extremely difficult and had to hunch over to walk) abdominal pain. After 5 days of misdiagnosis and multiple tests not showing anything conclusive, surgeon ran a camera in me and my intestines were twisted and perforated in some areas and a large puss bubble where small/large were (a little TMI I know...). Every year since then, I've had something related to the surgery (literally, if not just coincidental). 2006 was bleeding in belly button from scar tissue, 2007 I had a relatively large cyst or something ON my belly button. 2008 was the Celiac (technically), and 2009 I've had something already that may or may not be related.

Does any of my theories seem plausible even if not part of the more "commonly known" reasons that someone may get Celiac out of the blue. 23.11 years without it and getting out of the blue just seems weird and these are my 2 best guesses since it hasn't been hereditary for me.

[Mtndog]

A lot of people's Celiac start to show on after a traumatic physical/emotional event like surgery, pregnancy. Mine came on after my mom passed away (and I got Lyme about 3 months later). I think my system was overloaded and I had the gene.

As far as genetics go, they are still discovering genes related to celiac. Someone in your family may have it and not know; there are also silent celiacs who have no symptoms. If you have it, they recommend your family be tested.

I'm sorry you've been through so much- your intestinal problems sound painful. How are you feeling now?

[jststric]

Interesting theory! I think back on when things started happening to me and realize it was right after we had to move away from WI for a second time and I didn't want to leave. We've moved all over the country and moving certainly was nothing new to us. Didn't think I was THAT upset. hmmmmm.................

[ang1e0251]

A major traumatic surgery like you had is the likely culprit that turned on your gene. You don't desensitize yourself by not eating a food for awhile. After all I only eat pumpkin around Thanksgiving and watermelon in the summer but I don't get sick from it.

[Jonbo]

The surgery 'seems' like the more likely theory that triggered it. Considering the surgeon told me afterwards in his 10+ years (I think he has been a surgeon closer to 15) there, he's never seen anyone with twisted intestines since it mostly occurs in pigs and other mammals. Great boost of confidence on that Obviously I asked him how it came about but he said he didn't know what causes it in humans and I still don't know to this day (google hasn't been of the greatest help).

I guess its just weirdly coincidental this came about after cutting out 95%+ of all processed foods for about 6-9 months then this came into play.

[mushroom]

the surgeon told me afterwards in his 10+ years (I think he has been a surgeon closer to 15) there, he's never seen anyone with twisted intestines since it mostly occurs in pigs and other mammals.

His experience must be pretty limited --I had a friend it happened to twice!!

[Jonbo]

Wow, I hope I never experience the ungodly pain associated with a twisted intestine again. That was the worst 4-5 days of my life...and I had back surgery to put 2 rods/16 screws to correct scoliosis (too late for the brace). But I've decided rather then wait for the GI appt in September to find out why my abdomen still becomes extremely distended daily and still sometimes random, that I setup a doc appt for Tuesday to have xrays done and anything else needed because I'm pretty sure I have intestinal blockage going on for months now but never put 2 and 2 completely together until today when researching some risks after having that surgery.

Knowing how my body has gotten since the 2005 episode, I'll have another complication to add to the list after the surgery.

[VioletBlue]

I think you're kind of looking at this backwards

Many people become more sensitive to gluten the longer they go without eating it. So when they accidentially or intentional digest some gluten after being gluten free for a long period of time they may have a much much stronger reaction to gluten then they ever had before if they truly are gluten intolerant and or have Celiacs.

If you were essentially eating gluten free for eight or nine months while on your diet and then began to eat more gluten, and you're prone to a digestive expression of Celiacs, it's no coincidence that you began having symptoms after you reintroduced more gluten into your life. Celiacs was there all along but you may have passed what few symptoms there were off as "normal" prior to that. It's not that your diet "triggered" it, it's that your diet revealed what was there all along. The previous intestinal issues could alsol have been some kind of expression of Celiacs.

"Silent Celiacs" is a common occurance. The only way your family members can truly know if they have Celiacs or gluten sensitivity is to be tested for it. I went through ten years of myserious non digestive related symptoms before the villi damage became painfully obvious and I started having daily digestive problems. Many others can tell the same story.

Also because of the way genetics works, it's possible for both of your parents to have carried one copy of a Celiacs gene, but for you to have received BOTH copies of that gene, one from each parent. Most scientists agree that a double copy of a gene makes you much much more likely to be Diagnosed with Celiacs.

(a little long, sorry)

Ever since my dx back in April, I've been trying to wrap my head around possible reasons I out of the blue got Celiac. Considering it started in December of '08 and dx in April (lucky to be dx so quickly compared to others...), and no one else in the family has it, just made me start thinking of this possible theory.

March of 2008 (after a few failed attempts), I finally got stringent with my diet (actually a lifestyle change)/weight loss. I went from fast food daily, weaned myself off of it completely, no pop, no "bad" foods except occasional 'cheat' which is minimal. 90% or more of the foods I ate daily were fruit/veggies with some meat. I was almost gluten-free at that point anyways without realizing it and only had the occasional meal my grandma made at the time (I worked overnights).

So I kept up the lifestyle of eating healthy/exercising, etc...etc... and dropped about 70-80lbs by December. Then the troubles began. At that time I had let myself off my nearly exclusive fruit/veggie and some meat diet and was eating a little more bad but not terrible. No fast food, just more of what grandma made (I lived in with her for a period of time to regain my financial ground). So my crackpot theory is that because I severely curtailed any processed foods, it opened a major sensitivity to Gluten down the road. This coming from someone who enjoyed a few beers a week with my friends before dx.

My other theory is that this is all related to a major event back in 2005. I had woken up to SEVERE (to the point that walking was extremely difficult and had to hunch over to walk) abdominal pain. After 5 days of misdiagnosis and multiple tests not showing anything conclusive, surgeon ran a camera in me and my intestines were twisted and perforated in some areas and a large puss bubble where small/large were (a little TMI I know...). Every year since then, I've had something related to the surgery (literally, if not just coincidental). 2006 was bleeding in belly button from scar tissue, 2007 I had a relatively large cyst or something ON my belly button. 2008 was the Celiac (technically), and 2009 I've had something already that may or may not be related.

Does any of my theories seem plausible even if not part of the more "commonly known" reasons that someone may get Celiac out of the blue. 23.11 years without it and getting out of the blue just seems weird and these are my 2 best guesses since it hasn't been hereditary for me.

[lizajane]

I think you're kind of looking at this backwards

Many people become more sensitive to gluten the longer they go without eating it. So when they accidentially or intentional digest some gluten after being gluten free for a long period of time they may have a much much stronger reaction to gluten then they ever had before if they truly are gluten intolerant and or have Celiacs.

If you were essentially eating gluten free for eight or nine months while on your diet and then began to eat more gluten, and you're prone to a digestive expression of Celiacs, it's no coincidence that you began having symptoms after you reintroduced more gluten into your life. Celiacs was there all along but you may have passed what few symptoms there were off as "normal" prior to that. It's not that your diet "triggered" it, it's that your diet revealed what was there all along. The previous intestinal issues could alsol have been some kind of expression of Celiacs.

EXACTLY.

removing the junk from your diet removed the gluten. and removing the gluten allowed you to heal. before removing the gluten, your body was trying to build immunity to gluten, as though it were a germ. so you didn't notice the symptoms. but they were probably there. it may be why you carried extra weight- i gained 30lbs after my 2nd pregnancy triggered celiac but before i was diagnosed. i lost 9lbs in 2 weeks after going gluten free. and now when i get glutened, i feel horrrrrrible. i felt awful all the time before, barely functioning. but when i get glutened now, it is ALL i can DO to take care of my kids all day. i just want to spend the day in bed sleeping.

[Jonbo]

That makes sense too, thanks for the suggestions so far. I never had any real medical issues until I was 17 (but not really related) and as said ramped up after the twisted intestine incident. I don't even recall anything that gave me warnings, it just really hit hard in December and by the end of December it was becoming hell on me.

I'm definitely more sensitive now already but ah well, I've learned alot over the past few months that I never thought I could. This site/forum has been of immense help.