Total confusion....need advice please

[Farran7]

Without going deep into detail about my son's story (bc it is a 6 year struggle for a diagnosis) I wanted to ask opinions on a current situation. My son, who is 10 was recently diagnosed with mild Crohn's disease. He has struggled with a very odd presentation of slowed growth, swellings in his cheek lining and penis, and cracks in the corners of his mouth....all of these happening over the course of 6 years....not all at once. His first Gastro had no positive tissue or blood specimen....yet diagnosed him based on the appearance of his intestines during a scope....we had his blood tested for Celiac as well at this time and it was negative. But she was ready to put him on Remicade.

When we went for a 2nd opinion...they said they weren't convinced it was anything. Fast forward several years.....my son started having penile swelling...and slowed growth...back to the Doctor....scoped him and did blood work....this time he tested positive, although barely, for one of the IBD markers.....and his pathology came back mildly inflammed and some ulceration in the Terminal illeum. His bloodwork for Celiac was not done.

My mother, his maternal gparent, is Celiac positive BUT only by tissue tests...all her bloodwork is negative. She also has IBS.

We took our son to a nutritionist last week, who performed many labs on him....she called yesterday to inform us that he is in fact Gluten sensitive! Could all of this be Celiac disease and not Crohn's???

My question is, if you were us, would you go back to your child's Gastro and ask for the tissue from his TI to be tested for Celiac disease? Our Gastro is convinced it is Crohn's disease.....we have the Apriso and were ready to start him on it....until we got the nutritionists call??? His Sed rate is only a 17 and his pathology was passed through once as "normal limits" , but his gastro insisted they look again....and on the 2nd pass the pathology sais increased lamina propria inflammatory cells and cryptitis in the TI.

Help....we are not sure what to do at this point.

Farran7

 

[Spooky1]

hi,

my surgeon told me off for asking twice if i was celiac as gluten really does give me issues. of course, my surgeon knows exactly what crohns is and looks like and removed plenty of crohns affected areas so did not appreciate my enquiry.

having said that, all the blood works i have done regularly include testing for celiac. how weird is that?

best wishes for your son

 

[DustyKat]

Hi Farran,

First up would ask for a copy of the pathology report, or do you already have it? I thought it was pretty standard procedure that they test for coeliac when examining biopsies from the small bowel.

Did he have an endoscopy done as well and if so did it show any abnormalities from the duodenum or jejunum?

If his biopsies weren't tested and they are still available then I would ask that it be done. I think biopsies still remain the gold standard in diagnosing Coeliac. Flattened and/or eroded villi are what will be seen if he has Coeliac, these are not seen with CD.

It isn't all that uncommon to have CD and Coeliac so that may be something to consider as well.

Good luck and let us know how you get on.

Dusty. xxx

 

[Spooky1]

Dusty,

when i first went on liquid diet my dietician told me to expect the villi to take six weeks to heal. do you think she knew what she was talking about. my surgeon says that i have crohns and has removed strictures and inflamation with fistulas etc, and bloods say no coeliac. strange

 

[DustyKat]

if you Coeliac then it takes up 3 months for the villi to heal.

If you had inflammation associated with Coeliac then I guess it could cause narrowing but Coeliac doesn't cause fistula's so CD would be on the money with that aspect of things.

So do you mean the dietician was saying that you have Crohn's and the liquid diet would help repair the villi? If that is the case then she doesn't know what she is talking about.

Dusty. xxx

 

[Spooky1]

yes, i thought she got things wrong, i didn't like my surgeon telling me off for questioning whether i have crohns, i suppose he seen crohns surgeries over his career and i think i just have gluten allergies too. still have stricture and gastrostomy now, inflamation too, god, for a cure. and so say all of you, no doubt

 

[DustyKat]

Amen to cure!

I don't agree with being told off either. It is only natural to question something that is going to affect you for the rest of your life. There are ways and means to handle that doubt and telling you off is not one them. It doesn't cost anything to be kind and courteous and explaining to you why he thinks you have it is what he should be doing. Not only does it put your mind at ease but he is educating you about your disease at the same time.

Dusty. xxx

 

[Spooky1]

omg, dusty, if only i had that attitude at the time! i went off feeling far smaller than my five foot tall. lol. yes, i think i get a bit more respect on this site than with surgeon.

thanks

 

[Farran7]

thanks for your replies. Dusty we do have copies of both path reports....neither mention anything about testing for celiac.....the only abnormal finding was on the 2nd report where it noted the inflammation and cryptitis in the TI.....he also had some gastritis in his stomach....that's it no other abnormalities. I think we will call to see if they can test the tissue for celiac.....it can't hurt. I was thinking maybe they missed the boat on the diagnosis....but the more I research about celiac and Crohns....I am thinking it would be in addition to the crohns if he is positive for celiac. It is hard to accept Crohns as the final and only diganosis when I know our family history.

farran7

 

[Mehita]

Farran7 ~

My son was having all sorts of stomach troubles and had a colonoscopy and endoscopy. The biopsy from the colonoscopy confirmed mild Crohn's and the endoscopy and high tTG level confirmed Celiac. Our gastro doctor was very unwilling to accept that he had both diseases. He said it was uncommon, though I've found much research to the contrary. There are some docs out there who still simply don't think of Celiac as a true disease (we've since changed docs!).

Just keep in mind that your son needs to be eating gluten foods when he's tested for Celiac. It's also my understanding that only certain labs can do the Celiac test accurately?

On a positive note, the gluten free diet is pretty low fiber which can be helpful to some Crohn's patients. If he's even gluten intolerant, the diet may be of some benefit to him. Though it takes time for the villi to heal, after only 3 days on the gluten free diet we had a whole new little boy. It was truly amazing!

On a negative side, the symptoms of both diseases are so similar it's hard to tell if my son is getting sick due to an oncoming Crohn's flare or gluten exposure. That can be a little frustrating.

Just keep looking for answers. Follow your instinct until you're satisfied. You know your child best!