could i have had celiac disease for 30 years without knowing?

[Librarychick]

Hello everyone!

I've been reading lots and lots on this wonderful forum over the past two weeks. So my story:

I'm a 36 year old woman. Married, no kids (not by choice). 3 weeks ago, I woke up in the middle of the night with terrible gas pains. I drank an alka-seltzer, chewed some tums, drank a club soda, took some ranitidine. It wouldn't give up. Later that day, I mentioned to a coworker that I was having a bad day because I'd thrown my back out and it still hurt, I had period cramps, and this stomachache that wouldn't let up. She started running through my symptoms and declared I had a bad gallbladder and should get it checked. Well, I've had spells like this before and even had an ultrasound done for gallbladder but no stones and it always eased up in a day or so. A week went by and no improvement so I went to urgent care. Realize I've been running a low-grade fever for most of the week. Physicians assistant said it sounded like gallbladder and sent me for ultrasound. No stones but she was then alarmed by my liver bloodwork so I went to the ER (I'm uncomfortable and nauseated, not in terrible pain). ER doc looked at everything, said, "yeah, I think you're okay, here's some zofran, follow up with your dr". Fever went up even higher over the next few days so my GP squeezed me in. My symptoms didn't fully make sense- pain wasn't localized at gallbladder but moved occassionally, i went from constipated to diarrhea back to constipated every couple of days. And the fever isn't really gallbladder either. The night before my appointment with her, I googled "abdominal pain, nausea, fever" and the first hit was celiac disease! So I asked my doctor and she looked up at me and said, "YES! That fits everything you've got going on, even going back over the past few years. We'll do the bloodwork today." That was 10 days ago and I've had an xray, HIDA scan, ab/pelvis CT, and tons of bloodwork and urinalysis. 

HIDA scan shows poor gallbladder function and bloodwork came back positive for celiac. I have an appointment with gastroenterologist next week to schedule the endoscopy and talk about if he wants my gallbladder out. I'm still eating gluten so I don't have to do a challenge later on for the scope (I've been doing my research!) and I definitely have more pain, nausea and bloating when I eat gluten than when I don't. 

Now, of course, I'm reflecting on my symptoms and can trace them back quite a ways- thinning hair and infertility (unexplained) over the past four years, my toenails are clubbing (not sure when that began), at least 6 years of the couple of days of stomach issues, a decade of serious heartburn/indigestion (with no real reason), lactose intolerance from my teens, first had heartburn at age 11 (no one believed me because kids don't get heartburn!) Here's the kicker, though. Of course, I've come across the dermatitis herpetaformis in my research and today I looked at some images. I've never had anything like some of those images (and hope I never do!) but when I was six years old, my mom took me to the doctor because i had these strange pimply/blistery bumps on my legs, a bit itchy but not awful. He was unconcerned, gave us some cream and sent us on our way. Since that time, I get these little bumps that are not quite pimple, not quite blister, every now and then. Usually only one or two at a time. A couple times a year, on my arms or legs. I call them "allergy bumps" and usually pop them and they go away in a few days. I don't have any to even show anyone right now but I'm wondering if they are celiac related and therefore, I've had this for 30 years without a diagnosis! 

Needless to say, even if my scope doesn't confirm the diagnosis, I'll be going gluten-free here shortly and my poor gut had a lot lot lot of healing to do. 

So, is it possible to be sick (but not quite sick enough to get attention) for 30 years? I'm average height and overweight so it wasn't ever a concern for anyone until now. There's also some "doctors are evil" stigma in my family so I've got some personal and emotional issues and demons to deal with there. It's not doctors's fault I wasn't diagnosed. 

Also, how do you go about finding a good dietitian or nutritionist that actually will work with me on a paleo or gut-healing diet, not just tell me to eat the gluten-free varieties? 

Thanks so much for reading my novel here. 

~Librarychick

 

[squirmingitch]

Welcome to the club! YES! It's entirely possible you've been suffering with celiac for decades but didn't know it. Hindsight is 20/20. There are many of us who can trace our disease back long before we put 2+2 together or got a doc to put 2+2 together. You're extremely lucky your doc actually listened when you said "celiac". Wow, you got a good one! Hang on to that doc!

There are some 200 - 300 symptoms associated with celiac disease -- it's not ALL about diarrhea, in fact, over 50% of dx'd celiacs did NOT present with GI issues AND celiacs come in all shapes & sizes, not just skinny. Celiacs tend to have rashes & skin issues so the array of those things can be vast. The point is that you have to positive blood & I'm sure will have a positive endoscopy (good for doing your homework & not going gluten free!) so you will be dx'd celiac. Whether the rash was or is dh is moot once you're dx'd because the treatment is all the same --- gluten free 100% for life.

 

 

 

[MelissaNZ]

Wow you've been through a lot. So great you've found a reason though. A woman I know was 45 before she was diagnosed so yes it is possible. Such a freaky disease

[MelissaNZ]

Oh and look into GAPs diet. So awesome for gut healing. You can get the book and do it yourself or find a gaps practitioner

[Jays911]

Yes.  I wasn't diagnosed until age 60.  Looking back, I know I had the disease for at least 20-30 years before diagnosis.  But the good news is that things do get better once you go gluten free.  Hang in there.

[Librarychick]

Thanks everyone! I'm hoping to get some answers soon. I'm ready to go gluten free and start feeling better. Doctor's assessment that it would explain a lot of things includes a bout with clinical depression and "carpal tunnel". I also am a chronic cluster headache sufferer and there's a vitamin regimen that is widely used to control these headaches. With this regimen, I take 10,000ius of vit D every single day (in addition to fish oil, magnesium, calcium, zinc, and some others). After 18 months of that high dose of vit D, my D levels are sitting at a low normal level. Indicating that I'm not absorbing it like I should be. 

Not feeling too awful today (and only needed 2 zofrans yesterday) so hopefully whatever this flare up (guessing that the celiac triggered the gall bladder or the other way around) is on it's way out. 

Thanks!

[cyclinglady]

21 hours ago, Librarychick said:

Hello everyone!

I've been reading lots and lots on this wonderful forum over the past two weeks. So my story:

I'm a 36 year old woman. Married, no kids (not by choice). 3 weeks ago, I woke up in the middle of the night with terrible gas pains. I drank an alka-seltzer, chewed some tums, drank a club soda, took some ranitidine. It wouldn't give up. Later that day, I mentioned to a coworker that I was having a bad day because I'd thrown my back out and it still hurt, I had period cramps, and this stomachache that wouldn't let up. She started running through my symptoms and declared I had a bad gallbladder and should get it checked. Well, I've had spells like this before and even had an ultrasound done for gallbladder but no stones and it always eased up in a day or so. A week went by and no improvement so I went to urgent care. Realize I've been running a low-grade fever for most of the week. Physicians assistant said it sounded like gallbladder and sent me for ultrasound. No stones but she was then alarmed by my liver bloodwork so I went to the ER (I'm uncomfortable and nauseated, not in terrible pain). ER doc looked at everything, said, "yeah, I think you're okay, here's some zofran, follow up with your dr". Fever went up even higher over the next few days so my GP squeezed me in. My symptoms didn't fully make sense- pain wasn't localized at gallbladder but moved occassionally, i went from constipated to diarrhea back to constipated every couple of days. And the fever isn't really gallbladder either. The night before my appointment with her, I googled "abdominal pain, nausea, fever" and the first hit was celiac disease! So I asked my doctor and she looked up at me and said, "YES! That fits everything you've got going on, even going back over the past few years. We'll do the bloodwork today." That was 10 days ago and I've had an xray, HIDA scan, ab/pelvis CT, and tons of bloodwork and urinalysis. 

HIDA scan shows poor gallbladder function and bloodwork came back positive for celiac. I have an appointment with gastroenterologist next week to schedule the endoscopy and talk about if he wants my gallbladder out. I'm still eating gluten so I don't have to do a challenge later on for the scope (I've been doing my research!) and I definitely have more pain, nausea and bloating when I eat gluten than when I don't. 

Now, of course, I'm reflecting on my symptoms and can trace them back quite a ways- thinning hair and infertility (unexplained) over the past four years, my toenails are clubbing (not sure when that began), at least 6 years of the couple of days of stomach issues, a decade of serious heartburn/indigestion (with no real reason), lactose intolerance from my teens, first had heartburn at age 11 (no one believed me because kids don't get heartburn!) Here's the kicker, though. Of course, I've come across the dermatitis herpetaformis in my research and today I looked at some images. I've never had anything like some of those images (and hope I never do!) but when I was six years old, my mom took me to the doctor because i had these strange pimply/blistery bumps on my legs, a bit itchy but not awful. He was unconcerned, gave us some cream and sent us on our way. Since that time, I get these little bumps that are not quite pimple, not quite blister, every now and then. Usually only one or two at a time. A couple times a year, on my arms or legs. I call them "allergy bumps" and usually pop them and they go away in a few days. I don't have any to even show anyone right now but I'm wondering if they are celiac related and therefore, I've had this for 30 years without a diagnosis! 

Needless to say, even if my scope doesn't confirm the diagnosis, I'll be going gluten-free here shortly and my poor gut had a lot lot lot of healing to do. 

So, is it possible to be sick (but not quite sick enough to get attention) for 30 years? I'm average height and overweight so it wasn't ever a concern for anyone until now. There's also some "doctors are evil" stigma in my family so I've got some personal and emotional issues and demons to deal with there. It's not doctors's fault I wasn't diagnosed. 

Also, how do you go about finding a good dietitian or nutritionist that actually will work with me on a paleo or gut-healing diet, not just tell me to eat the gluten-free varieties? 

Thanks so much for reading my novel here. 

~Librarychick

 

My HIDA scan revealed 0% functionality and my gallbladder was infected.  I always wondered if my Gallbladder could have been saved if had I been healing from celiac disease.  If you can keep your GB, keep it!  

 

[Jmg]

On 8/10/2016 at 0:01 AM, Librarychick said:

 i had these strange pimply/blistery bumps on my legs, a bit itchy but not awful. He was unconcerned, gave us some cream and sent us on our way. Since that time, I get these little bumps that are not quite pimple, not quite blister, every now and then. Usually only one or two at a time. A couple times a year, on my arms or legs. I call them "allergy bumps" and usually pop them and they go away in a few days. I don't have any to even show anyone right now but I'm wondering if they are celiac related and therefore, I've had this for 30 years without a diagnosis! 

Needless to say, even if my scope doesn't confirm the diagnosis, I'll be going gluten-free here shortly and my poor gut had a lot lot lot of healing to do. 

So, is it possible to be sick (but not quite sick enough to get attention) for 30 years? I'm average height and overweight so it wasn't ever a concern for anyone until now. There's also some "doctors are evil" stigma in my family so I've got some personal and emotional issues and demons to deal with there. It's not doctors's fault I wasn't diagnosed. 

Also, how do you go about finding a good dietitian or nutritionist that actually will work with me on a paleo or gut-healing diet, not just tell me to eat the gluten-free varieties? 

Thanks so much for reading my novel here. 

~Librarychick

 

The sick, but not quite sick enough, state is a good definition of the trap that a lot of us fall into. I wound up living with various symptoms because in and of themselves they didn't seem severe enough to seek help, although my reluctance was in part due to the brain fog and depression which came along with it.

I also had mysterious pimples every so often. 

I haven't seen a dietician, but paleo is gluten free so if you go to the main paleo sites you'll get lots of recipes and advice around gut healing. The best advice I've seen is to eat fresh wholefoods as much as possible, for healing the gut choose fermented foods such as sauerkraut and make bone broth also. Lot's exclude dairy for some time after going gluten-free also. 

One suggestion, when you go gluten free keep a food diary so you can track your reaction, it may be interesting for you. One thing which blew my mind was how symptoms which I'd never connected started to resolve. I didn't think my diet impacted my backache, vision problems etc but it did!

I hope your testing is done quickly and you soon start feeling better than you thought possible  

[LoRo]

You might be my twin, except I'm 37! I started getting skin rashes and asthma when I was 5. Had lots of issues with allergies and asthma as a kid. Also ADHD and anxiety. I had all sorts of dental issues - missing/too small adult teeth, cavities. I developed stomach issues around age 14 that were passed off as lactose intolerance. (Omitting dairy didn't fully relieve my symptoms it made them very manageable.) When I got to university I started having major issues with anxiety, depression, and GI issues. I've struggled with anxiety, ADHD, allergies, carpal tunnel, and fatigue much of my adult life. I cant exercise enough because of the fatigue, and I'm always overweight or bordering on overweight despite healthy eating and as much exercise as I can tolerate. I catch every cold going and they lay me up for days. My GI issues came back with a vengeance 8 months ago, and I started fainting during exercise. 

Just got got diagnosed two months ago. I feel so much better now I'm gluten-free. More energy and less anxiety. My GI is still a mess but I suspect that will take years to heal.

All my life I just thought I was unlucky and had a weak immune system and allergies!

[Librarychick]

Just back from the gastroenterologist. I really liked him. He wants to keep the gallbladder and was very open to the celiac possibility. Apparently the heartburn since childhood is something he hears a lot from celiac patients. 

Scope next week to look for esophageal damage and duodenum biopsy. Feel like I'm making progress, finally. 

[Posterboy]

Librarychick,

There is a similar thread that you might want to read called "could Celiac disease really be making this sick" that similarly describes many conditions that doctor's sadly don't often connect the dots with.  I recently started a survey question on this board (unscientific) that asks readers to list/answer what other diseases they were diagnosed with before they got their Celiac diagnosis.  I expect a long list.

mine would be GERD, IBS, thyroid, CFS, early on set Arthritis, psoriasis and I could go on . . . to name a few that all got better when I begun a gluten free diet.

New research posted on Celiac.com explains well how you could be sub-clinical Celiac( NCGS see link) but still have many of these problems you mentioned and wheat still be the trigger.  It is finally getting some respect in the medical community as a legit disease --- NCGS.

https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F

And according to this new research as many as 90+ percent of NCGS (non-Celiac) sufferers could go on to develop Celiac disease in time when challenged with gluten.

But there is hope everybody on this board got better when they eliminated the inflammation undigested gluten in their diet causes by going gluten free.

Good luck on your journey,

Posterboy,

[squirmingitch]

3 hours ago, Librarychick said:

Just back from the gastroenterologist. I really liked him. He wants to keep the gallbladder and was very open to the celiac possibility. Apparently the heartburn since childhood is something he hears a lot from celiac patients. 

Scope next week to look for esophageal damage and duodenum biopsy. Feel like I'm making progress, finally. 

You're almost there! Next week you'll get to go gluten free. Meanwhile to keep yourself busy you can start prepping your kitchen for gluten free-ness. Get a magic marker & start going through every single can, box, envelope, jar, condiments, everything & write gluten-free in big letters on ones that are gluten free & safe for you.

[cyclinglady]

4 hours ago, Librarychick said:

Just back from the gastroenterologist. I really liked him. He wants to keep the gallbladder and was very open to the celiac possibility. Apparently the heartburn since childhood is something he hears a lot from celiac patients. 

Scope next week to look for esophageal damage and duodenum biopsy. Feel like I'm making progress, finally. 

If you can keep your Gallbladder and it heals on a gluten free diet, I am sure you will be much better off!  I am thankful that mine was removed.  I had no choice.  It was infected and it completely stopped working.    In the olden days, I would have died.   ?.   Alas, it is the family curse.  

Keep eating gluten until all testing is complete.  Have some sourdough bread for me (with blobs of fresh butter!) ?

[Librarychick]

1 minute ago, cyclinglady said:

If you can keep your Gallbladder and it heals on a gluten free diet, I am sure you will be much better off!  I am thankful that mine was removed.  I had no choice.  It was infected and it completely stopped working.    In the olden days, I would have died.   ?.   Alas, it is the family curse.  

Keep eating gluten until all testing is complete.  Have some sourdough bread for me (with blobs of fresh butter!) ?

I was willing to do what he suggested and he said we'll wait a while to see if it's celiac causing my issues.

I am enjoying my favorite gluteny foods right now. Had a chocolate lava cake for dessert tonight. It was amazing. 

[Tashiona]

New here and I'm in awe of reading these post! I don't feel alone anymore!! 31 years old I feel the same as you Hun. Calculating my symptoms from childhood ive always had gut issues. Now I'm experiencing neuro issues. My neuro actually found the celiac grateful for him. He listened to diagnosis  not get a check. I pray you have a great turn around 

[jbeilfuss]

Yes, you can have this disease for a LONG time and not know it.  I can trace my symptoms back 15 years ago.  I had very strange pain and "tingly" extremities.  At the time, that seemed to point to something neurological and I got brain scans and a spinal tap to check for MS, among many other tests.  It was all so mysterious at the time and pain killers did not help.

Eventually, I went to a health fair at work and at one of the booths, they measured bone density and mine was low.  I went to yet another doctor and got a more comprehensive scan and ended up on actenol - a drug primarily for post menopausal women and here I was a guy in his late 30s.  Of course now I know that loss of bone density is a celiac symptom.  I have also had to take iron to keep an acceptable level of it in my blood.

Sounds like you are close to getting some kind of diagnosis though, so hang in there!  I got my "official" diagnosis about 15 months ago and it does get MUCH better.  The last year before I reached that point, the stomach problems were kicking it up a notch, so it has been awesome to lose that bloating, gas, and pain.

Finally, a good cheeseburger wrapped in lettuce is a delight and if that's not your thing, you will find something else - we are lucky to have so many gluten free choices these days!

[Librarychick]

Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps.

Thanks for the feedback everyone!