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MitziG

Recent flare, possible Crohns- need advice

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Hi all, haven't been on here in a few years, because all was well and celiac wasn't on my mind so much as when we were first diagnosed back in 2011. However, my son (13) is once again suffering, and I don't know what is up.

About a year ago, he developed the same type of abdominal pains he initially had, along with concurrent depression and anxiety. He lost about ten pounds, the ever present ridges and pits in his fingernails worsened considerably, and he vomited after eating solid foods.

Got into the GI who did blood work. Ttg was slightly elevated (29) so we figured he must have gotten cross contaminated somehow, buckled down on cutting out  gluten-free processed foods and tried to wait it out. Also an x Ray showed mega colon, so he was put on miralax for a few weeks. (Also, just an fyi, there is ZERO chance he is sneaking. He is TERRIFIED of gluten, to the point that he won't eat outside the home, and is phobic to the point of ridiculous (for instance, if somebody moves his glass he will dump it out because he is afraid they might have touched it with gluten hands....despite the fact that we have no gluten in the house as myself and DD are also celiac)

Three months later, symptoms continued, went in for a re-check. Ttg now just a few points higher than before- DGP was negative (was during the previous test also) So, Dr suspects maybe Crohns.

 

I should mention, son has also dropped from the 65 percentile in height to the 20th, is mildly anemic  (11.2) (despite iron supplements) and is just a tiny bit low in zinc and copper (also takes a liquid multi) Dr seems to disregard all of this as unimportant because it isn't severe. Also, his iron levels actually are normal, ferreting is at 54, so the drop in hemoglobin signals something other than iron deficiency is responsible. I pointed out that previously, his hemoglobin was 14.5, and his Ttg held at zero for several years but he kind of ignored that as meaning anything.

So, next they do a fecal calprotectin test for Crohns...comes back negative. Then all of the sudden, symptoms disappear, perfectly fine, for two months, so we dropped it. Now, about eight weeks ago, they returned. Vomiting after eating, constant pain, dropped another ten pounds. HG still about 11, but now white cells are quite low also, never an issue before. Dr orders a re-test, however, son suffers an allergic reaction to the nausea meds he was on, and the second CBC was done in the ER, now showed white cells as being slightly elevated (which would be expected during an allergic event!) However, Dr now says nothing to worry about because they obviously aren't low. Dr orders a HIDA scan, comes back negative.

Son continues to lose weight, can't keep solid food down and becomes seriously neurotic. Super anxious, depressed, obsessed with his health. He definitely has some somatic symptoms, but the won't blood work, pitted nails and stunted growth tell me that something is genuinely wrong.

Last week, they did an endoscopy and colonoscopy- visually everything looked normal. Took 8 biopsies and removed a small polyp from his colon. Scheduled to see Dr on Wednesday to discuss pathology report. I am able to log into their system because I work for a doctor, so I have already read the report. Most of it was normal. Only thing it showed was "mild chronic gastritis with follicular features" and the polyp was classified as an "inflammatory polyp."

I'm pretty sure when we see the GI he is going to dismiss this as mild gastritis and tell him to take omeprazole (we already tried that last fall. Didn't work.) I did some googling...inflammatory polyps seem to exclusively be associated with Crohns or Ulcerative Colitis....but they also present as multiple polyps from what I can tell. He only had the one. The "follicular features" of the gastritis can be attributed to multiple things (H Pylori- that test result isn't in yet) Celiac, Crohns, autoimmune gastritis....

I just don't know how far to push this. I don't want to be one of those people that tells the Dr how to do his job, or to over react to labs that are only slightly abnormal. And I do know that it is likely his symptoms are largely somatic. My gut tells me that there is a more going on than mild gastritis.

Dr is at UVA, I should mention, so supposedly he knows what he is doing. But then, I had a GI at University of Iowa insist Celiac wasn't genetic, so.....

 

Anyway, sorry for the very long post, I appreciate anyone's thoughts as to what is going on. Is this a celiac flare? Something else?

 

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Celiac or UC flare, I have both, oddly enough carbs, trigger my UC. I removed grains, beans, fruit, all sugars and switched to a ketogenic diet. Certain other things cause the UC to flare like anything but the tiniest amount of garlic or onion, dill, vingars, and I have to watch pepper based (night shade like jalapeno, habanero, paprika, red pepper) spices as they can be a bit iffy. When the UC flares the constipation comes back and I need extra magnesium citrate to clear it or I start puking on day 2. They doctor also put me on a medication for it that helps alot.

For now might try a elimination diet, heck might try my low carb keto diet for a week see how it works, although after 1-2 weeks you get the keto flu where you body stalls changing gears and has carb withdrawals before switching over to using fats and protein for fuel instead of sugars.

He might have also gotten a new intolerance  or allergy so keep checking the food diary and try rotating the diet and not using spices or herbs in cooking for a bit and see if you can find the culprit.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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I am sorry that your son is ill.  My heart goes out to both of you.  

The only thing I can offer is that my niece (at age 19) was diagnosed with Crohn's via a pill camera. The damage was out of reach of both scopes.  I could have sworn she had celiac disease, but all celiac tests were negative -- no villi damage.  Her symptoms were sporadic.  She could go weeks with an incident.  She would vomit too.  She saw 4 GIs (three were Ped GIs) in four years.  She is doing much better with treatment.  

I hope you figure it out.  Keep advocating for him!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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