Help for my dad

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Nov 29, 2021
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Hello All,

Everyone here has been so helpful with my hubs I'm hoping someone can give some insight/advice about my dad.

About 15 months ago my dad started having severe debilitating abdominal pain that brought him to his knees for days at a time and eventually landed him in the hospital for about 4 days last Jan due to extreme loss of blood, uncontrollable vomiting and D, the works. It was awful and terrifying. Well he had an endoscopy, 2 cts and loads of blood work....all of which were normal except his gallbladder was "sluggish" so they took that out and said he tested postive for Celiacs, said all problems would be solved and that was that. Fast forward to last summer and nothing was getting worse, it was getting far worse and came in cycles (very similar to how my hubs was before diagnosis except hubs never had bleeding or urgency, just pain) so they arranged a colonoscopy fulling expecting to find something, because by then he also started passing large amounts of mucus and blood (tmi I know) well....colonoscopy showed...nothing, not a thing. GI said he took biopsies (and supposedly were clear). He's stayed on his diet well for the celiacs and is still incredibly sick with debilitating abdominal pain, breaks out in a sweat, shakes and cannot function. Passes blood and mucus and is knocked down for days. Then it passes, he's good for a week or 2 and comes back with a vengeance. We are at a total loss. He really thinks it's Crohns or UC as his symptoms are just so awful. Blood work has been normal but my husband's is too and typically has been. But as a family we are at a loss. His doc acts like there's not much else they can do, but I disagree. I've recommended he get a fecal calprotectin test, a CT entography and a pill cam scope as well as another colonoscopy and request several biopsies and food intolerance testing. I'm worried he's going to live this way forever and just get sicker and weaker and have zero life. I feel as if this can't simply be IBS or "in your head" my SIL and BIL have IBS/C and IBS/D respectively and while their symptoms are bad...they don't have the other symptoms (bleeding etc) that my dad does. Any insight or similar stories or further testing recommendations would be greatly appreciated. Thank you all so much!!
 
CAn they explained the blood ?
Was the ct a ct scan with entography? Or just contrast ?
Any nsaid ?
any hidden gluten ?
I ask since avoiding gluten or a food allergen is difficult. Is someone monitoring his food ( no sneaky snacks ) or supplement/meds for gluten -produced on the same lines in the same facility labels
Some with celiac have issues with very low levels of gluten (ie cheerios are marked gluten free but can have a very low levels )
Digiorno pizza has one marked gluten free that has wheat starch which causes big issues
Shared toaster, utensils , pans can cause issues
(My kiddo has life threatening food allergies so lots of practice )

fecal cal would be a good place to start
Keep a food log
Sometimes other proteins can cause colitis (in kids at least )
See if there is any pattern on the bleeding and certain proteins - could be any good but proteins tend to be the bigger culprits
Hard when it’s a parent
Hugs 🤗
 
CAn they explained the blood ?
Was the ct a ct scan with entography? Or just contrast ?
Any nsaid ?
any hidden gluten ?
I ask since avoiding gluten or a food allergen is difficult. Is someone monitoring his food ( no sneaky snacks ) or supplement/meds for gluten -produced on the same lines in the same facility labels
Some with celiac have issues with very low levels of gluten (ie cheerios are marked gluten free but can have a very low levels )
Digiorno pizza has one marked gluten free that has wheat starch which causes big issues
Shared toaster, utensils , pans can cause issues
(My kiddo has life threatening food allergies so lots of practice )

fecal cal would be a good place to start
Keep a food log
Sometimes other proteins can cause colitis (in kids at least )
See if there is any pattern on the bleeding and certain proteins - could be any good but proteins tend to be the bigger culprits
Hard when it’s a parent
Hugs 🤗
Thanks so much as always! They couldn't explain the blood loss but said nothing was seen so wasn't worried?? Even though it keeps happening. 🤷‍♀️ he hasn't had one with entography, that's one test I recommend he ask for. Keeping a food log is a good idea, not sure why I didn't think of that. And no NSAIDS. I did ask about that.
I have asked about cross contamination but that doesn't seem to be a huge thing. My mom has gone totally GF as well so shared utensils aren't an issue, they don't really travel and only eat out at confirmed celiac friendly restaurants. He claims he doesn't eat snacks without checking but that's always a possibility I guess. How long in your experience does it take to clear the system? My grandfather also had celiacs and he'd be out a day or 2 with cross contamination but nothing like this. And like I said...its almost a perfect cycle. I'm going to tell them to keep en extensive food/life log and see if there's anything common. Thanks again!
 

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