Can Celiac Symptoms Come And Go

[LT1313]

I'm new to this forum stuff and have never posted before so please bear with me. I'm not sure where to start but here goes.

 

I'm a 48 yr old male and have always had on again off again stomach problems for as long as I can remember. I have always been active and in excellent shape (until lately) except for smoking for 30 yrs (quit yr and half ago). I'm 6-2 and have always been skinny. I work in a high stress job.

 

Back in January 2013 my wife got a stomach bug, which I also caught. Since then I feel like I never got over the stomach bug.The symptoms covered a wide range (all classic celiac disease symptoms except for no rash) so my Primary Doctor sent me to cardiologist (chest pain)and GI Doc(nausea, stomach pain, diarrehea and so on). Cardiologist gave a stress test which went bad and ended up have a heart cath, but that only found 30% blockage, but cholesterol level was 900. Not a big deal so treating with meds and come back in 6 months. Gi Doc does a CT Scan nothing found except fat on liver. Then does endoscopy which didn't show anything and biopsy was negative (don't know if they tested for Celiac). Mean while I was out of work on sick leave so I'm losing money. GI Doc recommends some other tests but was dragging his feet. Ends up his nurse pissed off my wife so it was on to new GI Doc who runs tests, all negative except that I was backed up and bloated. So I get to drink the wonderful stuff to clean me out. Next day no change. So he recommends going back to Primary and recommends brain scan. Primary said said it didn't make sense so sends me to new doc (colon doc) due to family history of colon cancer. So I get cleaned out again in less that a week and get colonscopy. All negative except for diverticilosis (sp?). So I pretty much gave up and went back to work. Also was sent for sleep study and it showed mild Apnea and restless leg Sydrome. So the put me on Nuvigil (i work nights).

 

So this week I decide to go back to primary to ask about relief for severe arthisis and tingling pain in my hands, shoulders and neck. Mind you I have had one cerical fusion surgery and numerous broken bones and dislocations. (Occupational hazzard).  So that is scheduled for Monday.

 

Now for the kicker. I was talking to my mother yesterday and she said "is it Celiac Disease". I'm like "whats that, never heard of it". She said you were diagnosised with it when you were a infant back in 1964, guess you out grew it. So I started reseaching it and all the symptoms fit and my wife said "that's you to a T". That would explain a lot of the issues I have had over the years.

 

My question is how reliable were the test back then and am I gonna run into problems with docs now. Is this really Celiac or was I misdiagnosised back in '64. Plus I never remember eating a gluten free diet when I was young. Or should I just figure I have it and start a gluten free diet.

 

I'm tired of feeling like crap and getting the run a round and taking multiple drugs every day that dont work.

 

Sorry for long post

[kareng]

Why not tell your doc this and ask for a Celiac blood panel?

[LT1313]

Why not tell your doc this and ask for a Celiac blood panel?

I plan to Monday

[Lisa]

Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a fury, unfortunately.  

 

Welcome back to the Club!

 

EDIT:  Keep consuming gluten until all tests are exausted.  It will mess up your test results.  AND to corrrect my typo(s)!

[LT1313]

Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a furry, unfortunately.  

 

Welcome back to the Club!

 

EDIT:  Keep consuming gluten until all tests are exausted.  It will mess up your test results.

I read that and Im still eating gluten till i get a answer either way. Though I'm to point where I don't wanna eat anything at all for fear of getting sick

[mushroom]

Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a furry, unfortunately.  

 

I guess that explains the arrrival of my cat into my life five years ago

[Lisa]

I guess that explains the arrrival of my cat into my life five years ago

 

:lol:

 

 

Shoot.....I get teased all the time for my weakness in proofing my posts.  POLITE PEOPLE overlook my flaws. <clearning throat>

[Lisa]

I read that and Im still eating gluten till i get a answer either way. Though I'm to point where I don't wanna eat anything at all for fear of getting sick

You already have a diagnosis.  If you feel you want to start they diet...go for it.  It also can serve as a confirmation.

[Takala]

Now for the kicker. I was talking to my mother yesterday and she said "is it Celiac Disease". I'm like "whats that, never heard of it". She said you were diagnosised with it when you were a infant back in 1964, guess you out grew it.

 

Oh, wow.  The things we find out from our parents/grandparents when they get really old.   

 

This is completely anecdotal, but folk wisdom has it that smoking tobacco will suppress celiac symptoms, and you said you quit not that long ago.  May explain the flare up, but the only healers that will take you seriously on this are Indigenous, so perhaps just ask for the celiac panel blood tests to make the current doctors happy, and quietly go gluten free anyway, since you've been previously diagnosed.  You may not have been tobacco free long enough for the celiac to really get after your gut and make it a visible mess.  Or they didn't look for that.  Good luck monday !  

[RobinL]

In 1964, the classic symptom of celiac disease was 'failure to thrive"... meaning you probably lost a lot of weight as a child/had stunted growth. So on the one hand, a blood test or endoscopy was probably not done. On the other hand, if your celiac disease diagnosis was correct, you would absolutely still have it today. It cannot come and go--it is a lifelong illness that must be treated with a gluten-free diet. You're symptoms can come and go (and become less severe), but that wouldn't change the underlying illness.

 

I would get a blood panel ASAP. You should have results within a week. But DO NOT give up gluten before your blood panel--I gave up gluten for one month 4 months before my blood results, and even then, my doctor said they invalidated the results. So for peace of mind, keep eating gluten, at least once a day. But get a blood panel as soon as possible.

 

[psawyer]

Back in 1964 there were no blood tests for celiac screening, so a diagnosis would be from a biopsy or other means.. 

[Smylinacha]

Wow! Glad your mom remembered and told you! Good luck with your test. I am a smoker....about 5 a day and more on the weekends. I cut back last year from 1.5 packs a day....the symptoms started last year but the weight loss started about 2 years ago. I kept thinking it was because of my active dogs as I was always doing something with them. Then I thought it was stress due to a bad boss. Well dogs are under control, I have had a new boss for 6 months and if I eat breads and pasta I feel horrible. Doing that now for my test on Friday. Keep eating all the gluten you can until your test.

[LT1313]

Thanks for all the responses. I'm still eating gluten till I get tested, hopefully starting Monday.

[pricklypear1971]

Over a year into gluten-free/celiac and my mother finally pops "you had so many stomach issues when you were a baby" into a conversation. That was followed by "you had the worst rashes"; however, I do think she disclosed the rashes when my son was a baby.

Seriously.

After my son had stomach issues (10 years ago), and everything that has happened with my gi health over the years....not a word.

Parents. What are you going to do with them???

Good luck at your visit. Hope testing goes smooth and quick.