Any advice for someone who was unsure, but is now very sure?

[Gottaquestion22]

I just pooped my pants today.  Funny, but it’s likely the final sign to take this seriously.  First time I’ve pooped my pants in my adult life.

I can trace back issues to constant constipation, night sweats and naps related to lots of ingestion wheat cereals.  My family used to say that I couldn’t get enough of bread.  And now, with elimination diets, I can trace back stomach/digestive tract numbness or neuropathy.

So essentially I’ve done about 5 elimination diets.  At least one month each time.  And they always end with me feeling FANTASTIC, so good, that I start to believe it was all in my head.  I dose myself.  Symptoms build up, and I swear off it.

The issue was things were not clear cut.  Everyone always talks about huge stomach pains and immediate diarrhea.  At least that’s what I thought.  I NEVER get diarrhea.  Only stomach pains from corn.  My system is always slow.  And with gluten sometimes it would take a week to poop.  Even with staying hydrated. Well, recently after about 2 months off gluten, 1 month off of corn and oatmeal, I started to stay very hydrated and went low-ish salt and more potassium.  I dosed myself with a lot of wheat and corn 2 days ago.  Things got worse and worse.  Head got beat red.  My stomach does not want food at all, even if I eat it’s unhappy.  And...of course...I pooped my pants.  Because my entire digestive tract feels numb, and I thought it was just gas.  So instead of constipation, I got diarrhea during a time where I was watching electrolytes and hydration and I dosed myself with a huge dump of wheat and corn.  Which to me says, if I were optimally healthy, it’s likely I would have had diarrhea every time I dosed myself.  Likely I was under hydrated with high salt for years.  Which maybe explains the conundrum of diarrhea and constipation differences in people with this issue?  I don’t know.

People, knowing I eat gluten free overall, will literally buy me things with gluten to help out.  It’s hilarious to me.  Especially seeing as it’s very likely my dad has it, he shows the same exact symptoms as me, but he ignores it.  And my mom has severe GERD issues.  Cousin has crohn’s.  Mom’s side is probably something separate.  But I’ll literally have my dad tell me he’s been eating salads and meat for 2 weeks, then the day I see him eat his first processed wheat whatever, he goes back to feeling awful.  My brother got a ultra rare type of lymphoma (he’s recovered), and I read people with celiac are Seventy Seven times more likely to get lymphoma.  I’m heavily Irish/Scottish descent.

I don’t know where to start.  I need to hit myself in the head with the idea that none of this is a fantasy.  It’s for real, and I can’t have outside influences try to dissuade me from being my healthy self.  I’m also scared that I’ll need to dose myself for long periods to get tested, and I really don’t think I’m up for it.

Any advice I could get?  Appreciate it.

[GFinDC]

Hi,

Welcome to the forum! 

You seem to have figured out your digestive problem.  You are correct, for testing it's suggested to eat some gluten every day for 12 weeks to get the blood antibody tests, and 2 weeks for the endoscopy test.  You might be able to get a positive blood test now, but it is not as likely.  Stopping eating gluten causes the immune system to begin tapering off the immune response to gluten.  So the testing is not 100% accurate anymore.

Celiac disease is related to certain genes, so you probably got them from your loving parents!   One or both could carry the genes.  Having the genes doesn't mean you definitely will develop celiac disease though, just that you are susceptible to it.  Many people have the genes but don't develop celiac.  Your dad may be able to get tested though.  Or he could get the gene tests done (or you can) at any time, eating gluten or not.  The blood antibody testing is often called a celiac panel.

My guess is you have celiac disease and stinky shorts.    Many of us have had that happen though.  Celiac can also cause malabsorption so you may want to get a blood test for vitamins and mineral levels.  We often have problems with vitamin D, B vitamins, and some minerals.

[Gottaquestion22]

Thanks for the reply!  Might not hurt to get online tests, and go from there.

I sunbathe a lot, get magnesium.  One thing has helped a lot is calcium.  Like, a lot.  B vitamins do provide a huge boost, but I’m scared to take a complex more than a few times a month.  After this recent dosing I had a cup of fortified almond milk, and my body just calmed down a lot.  Seems to happen a lot with calcium, after a dosing.  I read something about calcium being an integral part to immune reactions, and people with celiac more likely to have lower calcium.  Just getting more calcium in general has made things so much better.

What scared me the most was the diarrhea.  Pooping your pants is honestly just funny when it never happens.  But it is a classic sign, and I didn’t expect it.  Every dosing was the opposite with long bouts of constipation, but once you fix other issues I think reactions can maybe become stronger or show their true self.  What was more scary is that I couldn’t feel what it was.  It felt like gas.  

Thankfully I know the routines now, I’m just sad to see I wasted so much time in a bad state. 

I think I will order a test tonight, and even if it shows negative because the reaction was too long ago, I’ll pursue different avenues or try again.  I do think if I order it tonight with rush shipping I will show antibodies, IF I have something.

[cyclinglady]

If you were two months gluten free, chances are that you will not have antibodies floating in your blood.  Granted you consumed gluten for the past two days and had GI upset, but again, it takes time to build up antibodies that leave the GI and circulate in the bloodstream.  This is not about an allergy which is a different immune response.  

Your only hope is that you were never really gluten free during those two months.    That is possible.

Consider doing more research before your spend money on lab tests.  

[Gottaquestion22]

I can go to my walk in and get free blood tests, and they will give me a free blood test for celiac, because they have an in-house lab.  Probably the thing to do.

But I was extremely gluten free.  Anything that said gluten free and had grain I really didn’t believe.  Had a diet that had me away from any cross-contamination.  I didn’t even know until my second elimination diet I was reacting to corn and oatmeal (well oatmeal I pretty much knew, because it would cause stomach pain beyond fiber).  Corn caught me off guard, because I thought it was solely the dairy products in the corn products causing the issues.

More than anything I wanted to sign up and create some timeline, and then contribute.