How Does This Happen?

[discodiver]

How is it that this celiac/Gluten intollerance seems to happen overnight? I seemed fine up until last year when I first began to notice problems. For 46 years I ate bread, cake, pie, croutons...etc with no problem. Then BAM..overnight it seems I'm allergic to the stuff. Stress, allergies, environment? Anyone have an idea? I would love to hear your story.

[missceliac2010]

I was fine my whole life. Walking around with some constipation problems but nothing I wouldn't attribute to having my gastric bypass surgery 3 years ago. My GI tract went a little haywire after that surgery...for good reason...they removed like 2 feet of small intestine or something.

Anyway, I was ok, when suddenly in November, I got this horrible "D" and pain. Bad pain. Then I started throwing up, and didn't stop. It got to the point that I couldn't keep down liquids and had to be hospitalized. I was put in the hospital with horrible vomiting, and horrible pain. Non-specific, gut pain. Then the tests started. A colonoscopy, an upper GI, an ultrasound on my gall bladder. Finally they decided to do a "hida-scan" (I have no idea how its spelled, I just know it sucked...) I spent 2 hours on a hard plastic "table" off of pain meds for 8 hours, crying in pain, when they told me that my gall bladder had to come out. So 2 hours after that I was on an OR table getting my gall bladder removed. After the gall bladder surgery, I felt pretty good. I gained some weight, and things went back to pretty normal (or at least "normal for me".)

Then it started again in June. Pain. Vomiting. But then something new... a distended belly! I mean, we are talking like lookin' 4 months preggo's! Not cool! I just lost all that weight, am finally in a bikini, and now I am all bloated AND in pain?! So the crap began again...tests, know one knew what was wrong, blah blah... It got very frustrating.

Finally I ended up back in the hospital. The GI doctor (who I can only see in the hospital, because he doesn't take my insurance outside of it) said "o, you probably have celiac... your last upper GI biopsy was "borderline", did you start the gluten-free diet?" I was mad! No I said, no one had told me!?!? So he did another upper GI biopsy and a blood test for celiac and sent me on my merry way, telling me to go gluten free. I had the test results sent to my regular doctor (because that GI doc doesn't take my insurance still...grr....) and my regular doctor told me that the results were negative! Negative I said?! How?! I have every symptom of Celiac Disease. I feel 110% better in the 2 weeks of gluten-free while waiting for these stupid test results! If I accidentally gluten myself, I feel like crap! Doc explained to me that the tests for celiac are not very sensitive... and unless I was ingesting ALOT of gluten in the days before the test, and that he hit just the right spot with the biopsy, it's a good chance it's a false negative. I was NOT ingesting a lot of gluten in the days before, because they had me "NPO" (nothing by mouth) for 3 days while hospitalized waiting for them to figure out what was wrong with me again.

Anyway, my doctor's daughter has Celiac, and he knows the disease very well. He said "based on my positive reaction to an elimination diet, he is diagnosing me with Celiac Disease". He then offered to repeat the blood test if I wanted to intentionally gluten myself for a couple of weeks... I said no thanks and moved on.

I've been gluten free for almost 3 months, and I feel amazing! My chronic back pain is in remission, I have normal bowels, my weight is regulated, I am back in a bikini, well...its awesome! I don't know what happened, and I don't know what set it off...but I do know the hell I was going through before the diagnosis...and even that had to come some weird back handed way. Strange little disease. (kidding...seriously...this disease is no joke... it's "not playin'!")

Good luck. Hope you get better reason why type replies, but that's just my story.

[Monklady123]

I don't know how it happens. I mean, I don't know the science of this disease. But that's what happened to me. I was fine my entire life. I never even had any intestinal type problems, except once in awhile -- I mean very rarely. Then suddenly boom -- stomach/intestinal pain, diarrhea, gas.. the whole thing. Overnight. In fact, I remember I had just some All Bran cereal because I decided I wasn't eating enough fiber. So I was planning to add a couple tablespoons of it to my regular morning cereal (which was usually Special K or Bran Flakes or something like that.) -- Anyway, it was overnight. I suffered along with that for a couple of months, then went to the doctor. The rest is history, as they say.

[lucia]

It seemed to me like all of a sudden my poor body just broke down, and i've been struggling ever since to regain my health. In retrospect though, I realize that I had symptoms years ago, but not GI symptoms. I attributed the pain at the bottom of my feet when waking to getting older. Luckily, getting older (I'm now 39) isn't that bad.

Medically, I think Celiac is a mystery. Perhaps as more people are diagnosed Celiac (and Gluten Intolerant) research will ramp up, and we'll find out the answers to questions like these.

[modiddly16]

Mine was triggered after double surgery 6 1/2 years ago when I was a junior in college. I was always told its a genetic dormant gene in your body that is triggered by birth or a traumatic event to your body, but I do know that something as small as an infection could start the process.

It's so very odd but heck....aren't we all a little odd anyway?

[luvs2eat]

Mine came out of nowhere at age 48... no family history, no trauma or trigger that I know of... just BAM!

About 5 years later my middle kid was diagnosed at about age 25. My youngest daughter was diagnosed last year (and is having a real struggle w/ it... lots of food intolerances and abdominal/pelvic floor muscle involvement) and oldest daughter was just diagnosed 2 months ago.

Neither my brother nor my sister has it and none of our extended fam does either.

[twinkle-toez]

I think that I've had it since my grade nine year in high school (2009) - at least in terms of the GI symptoms. It was never D - always C, but my GI tract was basically in constant pain, bloated, gassy etc. I think part of me knew that what I was experiencing wasn't normal, but as I had (still have) anorexia, no one listened to me when I initially tried to tell them how much my stomach/ abdomen hurt, and certainly no one believed me when I tried to say that certain foods made it worse - such as cookies. If I ate a cookie I would be balled on teh floor with horrible GI spasms raking through me for hours. Anyway, I stopped trying to talk to anyone about it, and just came to accept it as being 'normal' for me - living in an extremely middle-of-nowhere type of small town certainly didn't help either - nor did it clue the docs in to the fact that my chronic iron deficiency anemia which never responded to treatment could signify something like celiac. So up until going gluten-free about a month ago I've lived in that state, but just trying to avoid the things that I knew made me feel really awful - cookies, cake, brownies, bagels, muffins etc(Having never heard of celiacs, or gluten, I actually assumed that my problem was a reaction to really sugary foods). Anyway, this past fall I suddenly having neurological symptoms (actually, I have had rather severe depression that did start around the time of grade nine, and I've never responded positively to meds for it, but aside from the depression, no neurological symptoms until this past fall) The symptoms were - extreme pain throughout my entire body - it was so bad that I recoiled from physical touch - even if someone just brushed my hand, neuropathies (all seeming confined to the left side of my body), a loss of the ability to walk properly (whether it was true ataxia I don't know, and no one can adequately describe to me now how I was walking back then), an inability to stand in one spot without swaying - always feeling dizzy (both of which were attributed to my lack of caloric intake - but in previous bouts with anorexia I had never had ANY of these symptoms except the dizziness, and certainly not as early on as I started having them this fall) and horrible night sweats. It seems odd to me that all these neurological symptoms came on as suddenly as they did, and that they took so long to come on. Did anyone else have a sudden onset of neurological symptoms, not necessarily coinciding with the onset of their GI symptoms? I also found it odd that despite my continued ingestion of gluten during re-feeding over the winter, I've regained the ability to walk, run and jump, stand still without swaying, and the neuropathies, although still present, are not as severe as they were. I"ve read the term 'sporadic' attached to gluten-induced ataxia or neuropathies - by sporadic, do they mean neurological issues that show up and suddenly resolve, seemingly for no reason?

[mushroom]

. I"ve read the term 'sporadic' attached to gluten-induced ataxia or neuropathies - by sporadic, do they mean neurological issues that show up and suddenly resolve, seemingly for no reason?

No, sporadic means they come and go, and then return again "sporadically" (every now and again) so you got it right, except for the returning part.

[Kelly&Mom]

I think I've always had GI symptoms but didn't get diagnosed until age 44. I remember as a little kid having a barium swallow x-ray, having to avoid "white" foods because of C and in middle/high school having horrible spasms, etc. Went to several GI doctors, the last one indicated that my mom and I were slightly obsessed over finding a diagnosis and I was fine.....?

My mom died at 57 of non-Hodgkin's lymphoma which originated in her small intestine...... I was tested because my daughter started having severe GI symptoms at age 13 and luckily our pediatrician is a gastro doc and picked up on it.....

I've heard you are born with a genetic predisposition to develop the auto-immune disease and when you are exposed to certain viruses, it triggers the disease, just like juvenile diabetes (which my sister has!).

Very sad that my mother never was diagnosed, maybe she'd still be around but very glad I have a chance to avoid it!!

[quincy]

How is it that this celiac/Gluten intollerance seems to happen overnight? I seemed fine up until last year when I first began to notice problems. For 46 years I ate bread, cake, pie, croutons...etc with no problem. Then BAM..overnight it seems I'm allergic to the stuff. Stress, allergies, environment? Anyone have an idea? I would love to hear your story.

I was 48 when I found out. that was 4 mos ago. Symptoms of cramping and pain when younger but nothing major. some alopecia that went away and always had canker sores from childhood.

last year I decided to get my cholesterol lower so I went on a high fiber diet: oat meal, and high fiber grains. and thats when it all just hit. few years ago started terrible anxiety and depression. biopsy and blood test confirmed. first 3 months were HELL!! mind-numbing anxiety. ataxia walking into walls, off balance, muscle and bones ached. found out I had osteopenia. Doc says must have had this since 6 or 7 years of age..... hard to believe all of this, but its happening to me and all of us... hard to believe these stories of people going through surgeries etc when a simple blood test could confirm celiacs..... our medical doctors need to wake up to what is happening with gluten in EVERYTHING!!! causing a population's genetic trigger of gluten sensitivity.....

[twinkle-toez]

No, sporadic means they come and go, and then return again "sporadically" (every now and again) so you got it right, except for the returning part.

Thank you for clarifying - I missed the 'returning' bit simply b/c I've only (knock on wood) had one bout of the neuropathies and ataxia. They shouldn't recur if you stay gluten free... correct? Or has the damage that causes them to recur been done by the time they happen once causing them to continually recur even if you stay gluten-free?

[mushroom]

You will probably be accidentally glutened several times along the way, twinkle-toez, and when that happens you may have a recurrence of your symptoms, but if you can manage to stay gluten free you should also stay symptom free by the sound of it

[oaguilar360]

Maybe stress can also trigger this gene

I have been diagnosed with celiac, but after extensive search, I can make a reasonable conclusion that I do.

Symptoms started right after the week I started stressing of being HIV positive, new job, and school. Luckliy i was negative.

I guess all the stress and anxiety was the cause... since then I can find myself to be the person I was.

Thank you all

[LauraB0927]

From what I've read on here and other places, it seems to be general consensus that any kind of major body stressor can trigger Celiac - surgery, major illness, pregnancy, stress - it compromises the autoimmune system and can trigger the autoimmune response to gluten for someone with the genetic predisposition. I had anemia for years but no GI symptoms until the end of April this year when I had three nights of incredible stomach pains that led me to the GI doc - blood test was immediately run and there you go, I was diagnosed with Celiac. Even though I had anemia for years, I'm guessing the flu 10 years ago triggered everything for me but the GI pains suddenly came on fast and strong. Hope this helps!

[gatita]

I feel the same way... I was very happily eating pasta and garlic bread until one day last June — wham!

Even though with hindsight I can see some symptoms going way back, it was never severe like this. It still seems so surreal...

Not sure what the stressor was, but it's the only explanation that makes any sense...

[kittensmom]

I am just starting here but I think my trigger was gastric bypass surgery 6 years ago. I didn't realize anything was wrong with me until very recently though. I had no idea why I started getting crazy rashes on my knees and elbows 4 years ago, that have migrated to my fingers and the back of my neck over the past few years. Any stomach issues were very slight and I attributed those to the gastric bypass until a few months ago. That was when I had abdominal pain that had been going on for 3 weeks. I (finally) went to my regular doctor and he sent me to the ER immediately. Was diagnosed at the ER with mild case of colitis, told to follow-up with my regular doctor and a Gastroenterologist, ASAP. Gastro performed a colonoscopy and diagnosed me as having the genitic markers for Celiac. They advised me to "look into" going gluten free. Until I started reading posts here I had no idea how important gluten-free really is and how deeply it can affect every system in our bodies. I can see now how many things I thought were normal may be the result of gluten.

[GFinDC]

Welcome to the forum Kathi (Kittensmom).

People with the celiac skin rash (Dermatitis herpetiformis) often don't have many GI symptoms at first. please take a look around the DH section of the forum for tips on dealing with it. the experts on DH hang out there. We can help with other questions about diet and other fun stuff in the rest of the site though. Not that anyone has questions about diet on this site.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

[SeekingSarah]

I am just starting here but I think my trigger was gastric bypass surgery 6 years ago. I didn't realize anything was wrong with me until very recently though. I had no idea why I started getting crazy rashes on my knees and elbows 4 years ago, that have migrated to my fingers and the back of my neck over the past few years. Any stomach issues were very slight and I attributed those to the gastric bypass until a few months ago. That was when I had abdominal pain that had been going on for 3 weeks. I (finally) went to my regular doctor and he sent me to the ER immediately. Was diagnosed at the ER with mild case of colitis, told to follow-up with my regular doctor and a Gastroenterologist, ASAP. Gastro performed a colonoscopy and diagnosed me as having the genitic markers for Celiac. They advised me to "look into" going gluten free. Until I started reading posts here I had no idea how important gluten-free really is and how deeply it can affect every system in our bodies. I can see now how many things I thought were normal may be the result of gluten.

How are you doing? I had RNY in 2003, had what a GI said was IBS for 5 years but just heard that celiac disease could be related to these skin issues I also have so I am pushing for more tests before I go gluten free.

[EmiPark210]

I think mine was stress triggered. I started having colon spasms connected to IBS during my freshman year of high school in 2006 but it didn't get really bad until my senior year. I started on birth control that year to try to deal with a D/C cycle that lined up with my menstrual cycle. It worked except in high stress situations. The last few months of senior year I started having what I now know was a reaction to stress + gluten that got bad enough towards the end for my mom to take me to see her GI. He prescribed me an antispasitory for the spasms and I had a fluoroscopy done to check on the spasms and I think to see if we needed to do a crohn's test (my mom has it). He also gave me a bucket to collect a stool sample to test for gluten sensitivity but it's still sitting under my sink at home, ignored. I started limiting gluten in college as well as completely taking out any caffeine and carbonated beverages (still don't except for the periodic ginger ale) and maintaing a super "moderation" diet. I noticed that whenever i would eat gluten without protein I would get mild spasms, gassy and had little control over my bowel movements so I made sure to not eat straight pasta but have some meat and that helped. I started also eating pro-biotic yogurt by the tub-ful which helped. I decided to get tested for gluten intolerance/celiac's this past February when I ate two small bowls of pasta over the weekend and almost didn't make it to class on Tuesday because of the pain and feeling like something was going to explode. Blood tests came back positive so here I am! 

[SeekingSarah]

I was fine my whole life. Walking around with some constipation problems but nothing I wouldn't attribute to having my gastric bypass surgery 3 years ago. My GI tract went a little haywire after that surgery...for good reason...they removed like 2 feet of small intestine or something.

Anyway, I was ok, when suddenly in November, I got this horrible "D" and pain. Bad pain. Then I started throwing up, and didn't stop. It got to the point that I couldn't keep down liquids and had to be hospitalized. I was put in the hospital with horrible vomiting, and horrible pain. Non-specific, gut pain. Then the tests started. A colonoscopy, an upper GI, an ultrasound on my gall bladder. Finally they decided to do a "hida-scan" (I have no idea how its spelled, I just know it sucked...) I spent 2 hours on a hard plastic "table" off of pain meds for 8 hours, crying in pain, when they told me that my gall bladder had to come out. So 2 hours after that I was on an OR table getting my gall bladder removed. After the gall bladder surgery, I felt pretty good. I gained some weight, and things went back to pretty normal (or at least "normal for me".)

Then it started again in June. Pain. Vomiting. But then something new... a distended belly! I mean, we are talking like lookin' 4 months preggo's! Not cool! I just lost all that weight, am finally in a bikini, and now I am all bloated AND in pain?! So the crap began again...tests, know one knew what was wrong, blah blah... It got very frustrating.

Finally I ended up back in the hospital. The GI doctor (who I can only see in the hospital, because he doesn't take my insurance outside of it) said "o, you probably have celiac... your last upper GI biopsy was "borderline", did you start the gluten-free diet?" I was mad! No I said, no one had told me!?!? So he did another upper GI biopsy and a blood test for celiac and sent me on my merry way, telling me to go gluten free. I had the test results sent to my regular doctor (because that GI doc doesn't take my insurance still...grr....) and my regular doctor told me that the results were negative! Negative I said?! How?! I have every symptom of Celiac Disease. I feel 110% better in the 2 weeks of gluten-free while waiting for these stupid test results! If I accidentally gluten myself, I feel like crap! Doc explained to me that the tests for celiac are not very sensitive... and unless I was ingesting ALOT of gluten in the days before the test, and that he hit just the right spot with the biopsy, it's a good chance it's a false negative. I was NOT ingesting a lot of gluten in the days before, because they had me "NPO" (nothing by mouth) for 3 days while hospitalized waiting for them to figure out what was wrong with me again.

Anyway, my doctor's daughter has Celiac, and he knows the disease very well. He said "based on my positive reaction to an elimination diet, he is diagnosing me with Celiac Disease". He then offered to repeat the blood test if I wanted to intentionally gluten myself for a couple of weeks... I said no thanks and moved on.

I've been gluten free for almost 3 months, and I feel amazing! My chronic back pain is in remission, I have normal bowels, my weight is regulated, I am back in a bikini, well...its awesome! I don't know what happened, and I don't know what set it off...but I do know the hell I was going through before the diagnosis...and even that had to come some weird back handed way. Strange little disease. (kidding...seriously...this disease is no joke... it's "not playin'!")

Good luck. Hope you get better reason why type replies, but that's just my story.

Ok I'm going to slowly start counting post WLS patients I find here, since from what I ask of surgeons they act they have no knowledge of celiac in post-ops. grrrrrrrrrrrrrrrrrrr  I'll be post op RNY 10 years. My issues started more after a GI bug 5 years ago, but still brushed off as if I was just a none compliant WLS patient.