New diagnosis - gluten free, SCD, or regular diet?

[ICU]

My hubby just got diagnosed w Crohn's.
He's been eating gluten free for 8+ years with random bouts of D & flu like symptoms that put him down about 3 days (we thought it was gluten contamination, but probably Crohn's in reality). Colonoscopy years ago showed nothing. Current colonoscopy and endoscopy biopsies show Crohn's (after 3 months of upheaval and 3 weeks of near hospitalization, and 15# wt loss)
He's on Apriso. Still GF, but toying w the SCD diet. Help? Stay GF even tho dr says its not celiac? Go back to a 'regular' diet and figure out triggers? SCD restrictions?! And his weight gain is sooo slow. Any tips there?
Seems there is so much info, yet so few real answers...

 

[Karen]

Welcome ICU to the forum ... I am sure that you will get lots of HELP & SUPPORT here and once you find you way around I have a support group for our spouses that have Crohn's & do come and join us ... As my hubby has it too and so I will share more as time allows so I wish you the best of luck here ...

 

[SarahBear]

Hi, ICU! Welcome to the forum!

Some people do find that going gluten free helps reduce their Crohn's symptoms. A lot of people with Crohn's also have Celiac's, so that may contribute. In the end, it comes down to what he wants to do. Does he want to stay gluten free, or would it be easier to go back to a regular diet? Why did he start eating gluten free? Had he been previously diagnosed with Celiac's?

Either way, it might help for him to keep a food journal. That way, he can better determine what foods (if any) set off his symptoms.

For information on SCD, check out the SCD and Paleo section of the forum, found here.

:hug: I hope he feels better soon!

 

[ICU]

Thanks for the reply
He went GF because he was having consistent intestinal troubles after the dr told him 'increase the fiber' & 'try lactaid' without any relief. A friend said 'try going GF for a couple weeks'. After 3 days, he was remarkably better.
But his GI dr found no evidence of celiac or crohns on previous colonoscopy. So we stuck with what worked for his guts- GF. After this last near hospitalization episode, endoscopy & colonoscopy were done with biopsy showing 'mild Crohn's'.
I wonder if it was crohns all along, just managed well with GF.
The food journal is a great idea. Trying to figure out trigger foods will be a challenge. Do the symptoms usually show up right away, so we can tell which food did it?
Thank you for any and all help!

 

[SarahBear]

Here's the tricky thing. If you go gluten free, tests for Celiac's are likely to give false negatives. You have to be eating gluten regularly for (I believe) four weeks before the tests to ensure accurate results. The fact that he improved after going gluten free makes me wonder if he doesn't have Celiac's as well.

The amount of time food takes to aggravate symptoms depends, but as long as you keep up with the journal for a couple weeks, patterns should start to emerge. Keep in mind that things like raw vegetables and fruits, dairy, spicy foods, acidic foods, coffee, and carbonated beverages are common triggers, so keep an eye on those especially.