Crohn's Disease coexisting with WGP

[WG mom]

It's been a while since I have logged in. My daughter has been progressing well over the past year, is down to 6 mg of prednisone . Her last rituxan tx was about 9 months ago. We were all feeling relieved and the docs were hopeful she may be moving toward remission - even contemplating the rhinoplasty surgery in late fall.
Then about 10 days ago she began having sustained gastrointestinal problems. Not feeling well at all. Her doc referred her to a specialist who wants her ( at age 27) to have a colonoscopy to rule out Crohn's Disease. She will also have an endoscopy at the same time due to concerns about an ulcer. The doc said these often occur in WGPA patients.
I did a search and found minimal information.
Does anyone have any info on this? I'm hoping, obviously, that it will turn out to be just a stomach virus and I'm glad her docs are thorough, but geez.... This would be a devastating step backward, especially since she was feeling so optimistic for the first time since her diagnosis over four years ago.
Thanks, in advance, for support and advice.

[drz]

It's been a while since I have logged in. My daughter has been progressing well over the past year, is down to 6 mg of prednisone . Her last rituxan tx was about 9 months ago. We were all feeling relieved and the docs were hopeful she may be moving toward remission - even contemplating the rhinoplasty surgery in late fall.
Then about 10 days ago she began having sustained gastrointestinal problems. Not feeling well at all. Her doc referred her to a specialist who wants her ( at age 27) to have a colonoscopy to rule out Crohn's Disease. She will also have an endoscopy at the same time due to concerns about an ulcer. The doc said these often occur in WGPA patients.
I did a search and found minimal information.
Does anyone have any info on this? I'm hoping, obviously, that it will turn out to be just a stomach virus and I'm glad her docs are thorough, but geez.... This would be a devastating step backward, especially since she was feeling so optimistic for the first time since her diagnosis over four years ago.
Thanks, in advance, for support and advice.

Wegs can attack the colon and the symptoms might be very similar to Crohn's disease. Crohn's disease is also another AI disease and many of us have more than one AI disease so that is also very possible. Treatment for both might also over lap a bit so hope her condition improves soon.

[vdub]

As Jack once said "just because you have one bad disease, doesn't mean you can't have another". If you have a predisposition for an AI, then I'm guessing you might have a general predisposition for a range of AI's, although I haven't seen any studies to suggest that. In my case, I have two AI's. I think its great that your doc is being so thorough. Colonoscopies are really easy -- even the prep is easy as there isn't any more of the gallon of yucky stuff you have to drink. I believe for my last colonoscopy I had to drink 16 oz's of not-bad-stuff and then a quart or so of gatorade, but can't remember totally. I remember it was a no-brainer.

[Alysia]

Hi.

I have colon involvement of WG which is very similar to Crohn's disease. My gastro dr. Says that in Colonscopy the findings are the same for wg and Crohn's. The treatment is also the same.

I was too sick and shaky to do Colonscopy.

If she is going for it, peroxide as a prep is not allowed for weggies, as far as I remember.

Other tests which are important for diagnosis are:
stool samples for all germs and parasites possible, calprotectin test - to see if it is IBS or IBD. IBD means an inflamation in the colon, not just nervous bowel. My calprotectin test was extremely positive.
Test for lactose intolerance
Test for gluten intolerance

Also worth writing a diary, which foods are making symptoms.

When I have GI symptoms (mostly pains and crazy diarhea) I try to differentiate: wg or stomach bug. If its wg activity, I have more wg symptoms, like joints pains, red eyes, nose bleeds, ears aching etc. High pred works like a miracle. If its a stomach bug it will be in the GI, usually with nausea and a bit of fever or wounds on the lips etc.

Anyway, its important not to eat processed food, no junk food, no sugar, no oily food, etc.

[WG mom]

Thank you for your responses. Obviously still more tests to do. Hoping for the best. Evidently a scan was done while at the ER for the gastrointestinal issues, wanting to rule our appendicitis. Unfortunately a lesion was found on the kidney which is also now being investigated. When it rains, it pours. Trying to stay positive, but it is tough sometimes.

Hi.

I have colon involvement of WG which is very similar to Crohn's disease. My gastro dr. Says that in Colonscopy the findings are the same for wg and Crohn's. The treatment is also the same.

I was too sick and shaky to do Colonscopy.

If she is going for it, peroxide as a prep is not allowed for weggies, as far as I remember.

Other tests which are important for diagnosis are:
stool samples for all germs and parasites possible, calprotectin test - to see if it is IBS or IBD. IBD means an inflamation in the colon, not just nervous bowel. My calprotectin test was extremely positive.
Test for lactose intolerance
Test for gluten intolerance

Also worth writing a diary, which foods are making symptoms.

When I have GI symptoms (mostly pains and crazy diarhea) I try to differentiate: wg or stomach bug. If its wg activity, I have more wg symptoms, like joints pains, red eyes, nose bleeds, ears aching etc. High pred works like a miracle. If its a stomach bug it will be in the GI, usually with nausea and a bit of fever or wounds on the lips etc.

Anyway, its important not to eat processed food, no junk food, no sugar, no oily food, etc.

[BookNut]

I do NOT have WG. I just love this bunch of people who helped me so much back when it was a possible diagnosis. I DO have a chronic respiratory disease and a lot of experience with that and with food allergies. If you daughter is diagnosed for sure with Crohn's disease - please feel free to contact me for diet ideas. I have reduced my respiratory problems significantly with a special diet - one that is often prescribed for Crohn's disease as well. I have basically gone grain-free.. a sort of Paleo diet, although I do eat some cheese and cream for my coffee, and dairy is a no-no for Crohns. Anyway - the grain free thing can sound very intimidating, but I have adapted very well and have lots of ideas for grain substitutions. Anyway - if you get to the point, please contact me and I will be happy to help.

[annekat]

I, too, am due for an endoscopy and colonscopy on the same day, in order for them to track down why I am anemic, and why there was some blood found in my stool. I was overdue for a colonoscopy anyway.The doc mentioned checking for celiac disease at the same time. There will be a marker for it in my recent blood work and a biopsy will be done for it from my small intenstine, I think, during the endoscopy. Chron's disease wasn't mentioned. Maybe I am not showing the signs for that. In any case, if I have celiac disease, I will not be able to eat wheat, and will be interested in all the recipes as well! Have already started eating gluten free bread, but of course, that contains other grains, in most cases.

[BookNut]

I, too, am due for an endoscopy and colonscopy on the same day, in order for them to track down why I am anemic, and why there was some blood found in my stool. I was overdue for a colonoscopy anyway.The doc mentioned checking for celiac disease at the same time. There will be a marker for it in my recent blood work and a biopsy will be done for it from my small intenstine, I think, during the endoscopy. Chron's disease wasn't mentioned. Maybe I am not showing the signs for that. In any case, if I have celiac disease, I will not be able to eat wheat, and will be interested in all the recipes as well! Have already started eating gluten free bread, but of course, that contains other grains, in most cases.

Hope all turns out well with both the "scopies"!! I need to gather all my notes and recipes into some sort of coherant order. Mostly though, it is just a few basic substitutes and having a few go to treats.

[Alysia]

I am sorry, wg mom, for the lesion on the kidney. It might be wg... if it is so, then once she get a decent treatment, it might be gone... is she getting any wg meds now ? How much is her creatinine ?
Please update us. Sending prayers to your daughter and to you. Being the caretaker is not less easy although in another way...

Anne, how severe is your anemia ? I am sorry. If you can, ask to do more tests, like those I wrote above. Dr. Phil used to say that anemia can point to wg activity. How is your wg behaving ?

Jacquie, you are always so kind & sweet (even with your diet) and we are so blessed to have you with us ♡♡♡♡