Celiac - How many symptoms can there be?

[jalvarez1010]

Hi Everyone

I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work. 

Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms

- Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest.

I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination. 

In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms:

Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
.

I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms:

Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side. 

I will be seeing the GI doctor in August; but I am hoping to see him sooner

Any input in reference to symptoms is appreciated.

 

 

[Irene Joanne]

Do you take digestive enzymes and probiotics? That may help. Have you met with a dietician for help figuring out how you're getting glutened?

[Jmg]

5 hours ago, jalvarez1010 said:

Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side. 

I will be seeing the GI doctor in August; but I am hoping to see him sooner

Any input in reference to symptoms is appreciated.

 

 

As you doubtless know now, there are so many ways celiac can present, Open Original Shared Link as I could find online. It would probably be quicker to list what isn't a factor

For me personally, nausua, check, left sided back hip pain (my laymans theory here is that celiac is affecting the sciatic nerve which runs from lower back down leg) , check, chest pain also - but for me this comes in short bursts more I guess like heartburn - I thought I was having heart attacks... Check to the rest too... And, for what its worth, other things like being prone to bronchial infection oh hell yes. 

I'm currently in the glutened / affected by something group myself so I can only share the advice I've been given. Start a food diary and see if you can track down anything diet related that may be affecting you. Eat as clean as you can, ease up on alcohol, just try and give yourself the best chance of recovery. Have a google of 'heal my gut' diet tips too, you're in the recovery phase at the moment.

All the best, at least there's comfort in knowing you're not alone!

 

Matt