Horrible symptoms for last 2 years

John Diaz · August 25, 2020

I'm 43 years old and only the past 2 years have been horrible. I always had bouts of constipation, but that's it. I'm pretty athletic and usually have more energy than my kids.

This all changed a couple years ago. My constipation got worse, I got severe stomach aches, and I felt a burning sensation in my intestines. Sometimes I couldn't even ride my bicycle it hurt so bad.

I also have acid reflux and take meds for that. Fatigue is my newest symptom, along with numbness in my arms. Some days I can't move which is annoying because I've always been so active.

Through trial and error, I decided to cut out gluten. Nearly all of my symptoms are gone except for the lingering fatigue. I think I am on to something.

I've got my first GI appt tomorrow, but was curious if anyone has experienced anything similar to what I've described. Also, is it odd this is happening in my 40s? Why did I not feel so bad in my 20s or 30s?

trents · August 25, 2020

Welcome, John!

The onset of Celiac disease can happen at anytime in life but most commonly in childhood or the third decade of life. For me, I have lab evidence that it had begun to ravage my body by about age 37 but it took me 13 years to find out what it was. We know that about 40% (not exactly certain of that figure but it's not far off I don't think) have the genes that make give the potential to develop Celiac disease. But we also know that most of those people never develop celiac disease. We believe that it takes both the genes and some kind of trigger event such as infection, stress or medical trauma for people to develop celiac disease. I suspect that I actually had celiac disease before age 37 but being in the prime of life and fit, before that my body was able to compensate for it such that the symptoms and health impact were kind of under the radar. Hope this helps.

By the way, acid reflux very commonly accompanies Celiac Disease. What med are you on for acid reflux and how long have you been on it? In the long run, proton pump inhibitors like omeprazole can work against healing of the gut in celiac disease.

Edited August 25, 2020 by trents

John Diaz · August 25, 2020

Thank you for your information. Wow that must have been rough waiting so long for a proper diagnosis. I'm hoping to get somewhere with the GI tomorrow.

I am taking Omeprazole and thanks, good to know that this could potentially be an issue. I will discuss with the doc as well.

trents · August 25, 2020

John, there is much more awareness within the medical community about Celiac Disease today than there was even 15 years ago. I was diagnosed in maybe 2003 but annual lab work pointed to the presence of the disease even back as far as 1987-88. My PCP had no clue and it wasn't until I made an appointment with a GI doc that any testing for celiac disease was done. Even though there is more awareness in the medical community about celiac disease now, it is only about an inch deep at the PCP level. I dare say there is much more in depth knowledge about celiac disease within this forum community than there is among the general population of PCPs. It is good that you are seeing a GI doc tomorrow. Most likely, he will order some blood tests to check for Celiac Disease antibodies.

Edited August 25, 2020 by trents

DJFL77I · August 25, 2020

How can they know when it started? I think its impossible to know that...

I even asked my GI Doc that very same question.. he said its not possible to know when it activated..

Of course I think he's a bad Docor and am actually changing GI docs this morning to a very good local one... so maybe he's just wrong..

Personally i THINK mine started in my very late 20's... maybe 26 - 28.. that's when some ringing in my ears began.. I'm 42 now and was just diagnosed in early JUNE.... so i'm guessing maybe 10 - 15 years .....

I've never had any issues with my gut though throughout my life... only in early FEB this year when symptoms began..

Ya sometimes I felt like i knew more about this than my GI doc..

All he said to me after diagnoses was go see this nutritionist and stick to your diet, you should be fine.

Didn't even want to check my vitam / mineral levels.. I only got him to check b12 and iron.. then after calling in to request a full panel he refused to do it and they said i should go to a primary Doctor to have that done.

DJFL77I · August 25, 2020

I have to see a Nurse Practitioner on Sept 2 who is filling in for the primary doctor until his lazy ass is back in the office again in a few weeks... I'll finally get my vitam / mineral panel through her.. supposedly Nurse Practitioners can order blood work just like a normal doctor.. I think I'll probably have the standard cpc blood test too..... last time i had that was early march

trents · August 25, 2020

Yes, I think it can be impossible to know exactly when celiac disease started because in the beginning stages for many people there may be no dramatic symptoms.