Possible Crohns disease dx

[PrincessMommy]

My colonoscopy last month discovered some ulcerations near the ilium (sp??).  They say that it is consistent with possible Crohn's disease and have sent me for genetic testing, MRI, and other tests.  When I went for my pre-colonoscopy appt I told them about my life-long issue with canker sores and how, as I've aged, they have gone down my throat and I suspected they were throughout my intestinal tract.  When she was palpitating my tummy today she showed me where the ulceration was... it is exactly where my pain has been and where I've always had a flare-up of diverticulitis.     Otherwise, I don't have several of the other symptoms of Crohn's.  

My question is about diet and how it might help with flare-ups.   When I questioned the NP she waved it aside  food restrictions and immediately mentioned medication.  She then said that one side-effect of the meds is lowered immunity.    I'm not keen on meds fixing one problem only to create another one, esp if there are other options.

This is another auto-immune disease and I already about 12yrs into a Hasimoto's dx.   Someone here mentioned about RA after I said that I wake up at night with terrible back/hip pain but am fine after I walk it off.  I've yet to go deal with that possibility.  Not even sure where to start with that.   I understand that auto immune disease can cause a cascade of other issues.

[happi duck]

My niece has ulcerative colitis.  Though they've asked, the answer from doctors is always that there is no diet that helps.  That always surprises me.

I think the book Maker's Diet is by someone with Crohns.

(hugs)

[Pawz4me]

47 minutes ago, PrincessMommy said:

 

Someone here mentioned about RA after I said that I wake up at night with terrible back/hip pain but am fine after I walk it off.  I've yet to go deal with that possibility.  Not even sure where to start with that.   I understand that auto immune disease can cause a cascade of other issues.

That's not a typical area that's affected by RA. I think ankylosing spondylitis sounds more likely? Like RA, it's an AI condition. But with RA it's usually the smaller joints (hands, feet, wrists, elbows, ankles) that are affected first, and usually there's symmetrical involvement. Fatigue is also typically a symptom (often debilitating fatigue). A rheumatologist is the specialist to see for those, but your primary care provider can run a basic arthritis panel. I'm guessing you'd need a referral for a rheumatologist. The ones around here will only schedule appointments for new patients if they're referred by a primary care provider.

[cintinative]

22 hours ago, PrincessMommy said:

 

This is another auto-immune disease and I already about 12yrs into a Hasimoto's dx.   

 

I'm not quite understanding this sentence. Are you saying you were also diagnosed with Hashimoto's 12 years ago? Often times autoimmune diseases can co-occur. 

The first thing that came to mind is not Crohn's but Celiac disease. I would be pushing for an endoscopy given your reports of canker sores, etc. Have they checked your vitamin levels lately? Have they ever done a Celiac panel on you?

https://www.cureceliacdisease.org/symptoms/

Note symptoms include: pain in the joints, mouth sores (celiac.org calls them canker sores), Recurring abdominal bloating and pain

Edited March 6, 2020 by cintinative

[Jean in Newcastle]

My friend with Chrohn's eats a very specific diet.  She's ended up in the hospital for a month at a time multiple times though due to the severity of her symptoms so I don't know if that makes a difference.

https://www.crohnscolitisfoundation.org/diet-and-nutrition/what-should-i-eat

I would be sure of the diagnosis first because the recommended foods for Crohn's are not the same as for Celiac disease. 

[Mbelle]

My dh has crohns.  There are different types of crohns so sometimes the meds are a  definite positive even with being immunocompromised.  Especially if you can avoid resection.  Resection can really create other issues.  Some Dr's really downplay the role of diet and it can be so frustrating in that regard.  We have found that it is so worth going to a highly regarded gastro even if it is more effort, distance and takes more time.   The knowledge that a top gastro has is so worth the effort and the quality of care and life makes up for it.

[TravelingChris]

1 hour ago, PrincessMommy said:

My colonoscopy last month discovered some ulcerations near the ilium (sp??).  They say that it is consistent with possible Crohn's disease and have sent me for genetic testing, MRI, and other tests.  When I went for my pre-colonoscopy appt I told them about my life-long issue with canker sores and how, as I've aged, they have gone down my throat and I suspected they were throughout my intestinal tract.  When she was palpitating my tummy today she showed me where the ulceration was... it is exactly where my pain has been and where I've always had a flare-up of diverticulitis.     Otherwise, I don't have several of the other symptoms of Crohn's.  

My question is about diet and how it might help with flare-ups.   When I questioned the NP she waved it aside  food restrictions and immediately mentioned medication.  She then said that one side-effect of the meds is lowered immunity.    I'm not keen on meds fixing one problem only to create another one, esp if there are other options.

This is another auto-immune disease and I already about 12yrs into a Hasimoto's dx.   Someone here mentioned about RA after I said that I wake up at night with terrible back/hip pain but am fine after I walk it off.  I've yet to go deal with that possibility.  Not even sure where to start with that.   I understand that auto immune disease can cause a cascade of other issues.

No, not RA with the terrible hip pain- that is Ankolysing Spondylosis and both Crohn's and Ankolysing Spondylosis are particularly susceptible to people who have the HLA B27 gene.  I and at least one daughter has that.  I have both Ankolysing Spondylosis.  Medications are really the way to go if you have those.  The fact that you are having those issues means that your immune system is particularly strong--- overly strong.  The medications basically bring you down to regular immune system.   I haven't gotten any strange illnesses since I went on the biologic.  

But yes, the doctors need to get test results, etc.  There may very well be a diet that helps Crohn's but you would be doing that along with medications.  And AS is no joke either.  Because I was misdiagnosed with OA in those joints,  I have a neck that is falling apart, my lung capacity is only 65% of normal because my ribs are so stiff permanently, and I am starting to find out next week, has it caused my lower body excretion problems and also my falls, etc.  As posters said above, not treating Crohn's is super serious.  I know several people who did not get strong enough treatment at the beginning of their diseases and one is disabled now for 30 years (he got it right after college and probably AS too), another one has had to have operations and is generally weak and sickly.  The ones who are being treated rightly and from the beginning you probably would not know they have it.  But these people I know had it before there were biologics and newer medications.   

[PrincessMommy]

1 hour ago, cintinative said:

 

I'm not quire understanding this sentence. Are you saying you were also diagnosed with Hashimoto's 12 years ago? Often times autoimmune diseases can co-occur. 

The first thing that came to mind is not Crohn's but Celiac disease. I would be pushing for an endoscopy given your reports of canker sores, etc. Have they checked your vitamin levels lately? Have they ever done a Celiac panel on you?

https://www.cureceliacdisease.org/symptoms/

Note symptoms include: pain in the joints, mouth sores (celiac.org calls them canker sores), Recurring abdominal bloating and pain

See, I have every one of those symptoms.  I will talk with them about celiac too.  Isn't there also a blood test for celiac?

When I told her about canker sores the first thing out of her mouth was "Maybe you have herpes."   I had to bite my tongue otherwise it would have bit her head off.  She could  tell I was annoyed.  I heard that for years as a child...years. 

oh and sorry about that sentence.  Yes, I was dx with Hashi 12yrs ago and my understanding is that Crohn's is also an autoimmune disease.  

Edited March 5, 2020 by PrincessMommy

[PrincessMommy]

Thanks for the tips about these other possible issues :  Celiac and AS

I have one child who has also suffers with terrible canker sores since he was nearly 2.  I remember exactly when it started happening for him - he had foot and mouth disease and I was pregnant with #3 and so sick.  He was miserable. Ever since then he's had to deal with canker sores, so it's always made me wonder if there was a connection. 

He's a scientist and has taken a research method of figuring out why he gets them.  This was after I told him my success with canker relief after going on Atkins diet.  He knows what flares up his canker sores and works to mitigate them.   I assumed both of us were having allergic reactions.    That is why I wonder if there is a diet connection with some of these issues.  

Edited March 5, 2020 by PrincessMommy

[HSmomof2]

2 hours ago, PrincessMommy said:

My colonoscopy last month discovered some ulcerations near the ilium (sp??).  They say that it is consistent with possible Crohn's disease and have sent me for genetic testing, MRI, and other tests.  When I went for my pre-colonoscopy appt I told them about my life-long issue with canker sores and how, as I've aged, they have gone down my throat and I suspected they were throughout my intestinal tract.  When she was palpitating my tummy today she showed me where the ulceration was... it is exactly where my pain has been and where I've always had a flare-up of diverticulitis.     Otherwise, I don't have several of the other symptoms of Crohn's.  

My question is about diet and how it might help with flare-ups.   When I questioned the NP she waved it aside  food restrictions and immediately mentioned medication.  She then said that one side-effect of the meds is lowered immunity.    I'm not keen on meds fixing one problem only to create another one, esp if there are other options.

This is another auto-immune disease and I already about 12yrs into a Hasimoto's dx.   Someone here mentioned about RA after I said that I wake up at night with terrible back/hip pain but am fine after I walk it off.  I've yet to go deal with that possibility.  Not even sure where to start with that.   I understand that auto immune disease can cause a cascade of other issues.

My mom had these symptoms and was diagnosed with PMR (Polymyalgia Rheumatica). It’s also autoimmune, and can have some other complications, but can be treated and typically runs its course in about 18 months and doesn't cause the joint damage that RA does. Seeing a rheumatologist would probably be a good place to start. 

[ktgrok]

2 hours ago, cintinative said:

 

I'm not quire understanding this sentence. Are you saying you were also diagnosed with Hashimoto's 12 years ago? Often times autoimmune diseases can co-occur. 

The first thing that came to mind is not Crohn's but Celiac disease. I would be pushing for an endoscopy given your reports of canker sores, etc. Have they checked your vitamin levels lately? Have they ever done a Celiac panel on you?

https://www.cureceliacdisease.org/symptoms/

Note symptoms include: pain in the joints, mouth sores (celiac.org calls them canker sores), Recurring abdominal bloating and pain

Celiac is confined to the small instestine, ulcerative colitis is in the colon, and Crohn's is anywhere from the mouth to  the anus. So if you have in the intestines and the mouth I'd think Crohn's more than celiac. Unless the mouth ulcers are from a vitamin deficiencey from the celiac. 

And yes, if you have one autoimmune, more likely to have another. 

As for diet, my friend's son has UC and diet does help a lot. It was enough to keep him in remission for a while, but then they had to add medication. He gets IV infusions of remicide I think. 

Edited March 5, 2020 by Ktgrok

[mominco]

 

4 hours ago, PrincessMommy said:

 I told them about my life-long issue with canker sores and how, as I've aged, they have gone down my throat and I suspected they were throughout my intestinal tract.  When she was palpitating my tummy today she showed me where the ulceration was... it is exactly where my pain has been and where I've always had a flare-up of diverticulitis.     Otherwise, I don't have several of the other symptoms of Crohn's.  

My question is about diet and how it might help with flare-ups.   When I questioned the NP she waved it aside  food restrictions and immediately mentioned medication.  She then said that one side-effect of the meds is lowered immunity.    I'm not keen on meds fixing one problem only to create another one, esp if there are other options.

Op I am actually surprised that you were not diagnosed sooner-the canker sores are a well known symptom of Crohns.I would also go to a GI and unfortunately even the GI may not believe that diet change helps.Some things that helps my dd are not eating seeds-no milk no strawberries,limit raw tomato,Jalepeno-she does fine with most cheese,A good probiotic, low fiber,no ibuprofen.She also avoids wheat-not allergic but cannot seem to handle it well. 

The 1st thing the Dr will say is Remicade.A biologic iv medication that will YES lower your immunity among other things.

https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870502/

Do your research before you see the Dr next time

Search for  Specific Carbohydrate Diet.Read this book Breaking the Vicious Cycle.Keep a journal of food that you eat so you know the culprit.The thing is sometimes its not food alone that causes a flare so keeping an eye on your hormones,surroundings,allergies etc can help.You will sometimes need a medication like Prednisone to help with a flare ,other times changing the diet and eating insipid food for a few days seem to stop the flare.This is unfortunately something you will have to figure out.Make sure you are tested for Anemia,D3 and the rest of the GI panel regularly.

There are alternate medications but you need a good out of the box thinking GI Dr for that.If you have specific questions please feel free to pm me.GL-Hugs-I hope you find relief and  treatment plan.

 

[PrincessMommy]

@mominco - It was the GI's nurse practitioner who I was speaking with.   The GI specialist did the colonoscopy but it seems like office visits are done by the NP.  

thanks for your tips.  I will look into the book.

[73349]

The blood test for celiac only works if you have been eating gluten (wheat, barley, etc.). It shows your body's inflammatory reaction to the protein. I've heard of several celiacs who experienced canker sores, dental issues, rashes, headaches, and/or other non-gut symptoms, so it's worth running a test if you can.

[Anne]

My dd has Crohn's.  She has seen a number of gastroenterologists.   If you live near Seattle, pm me for the name of her doc there - he's great!    As several others have implied, the medical thinking these days is to use a good biologic medicine to prevent serious damage to the internal organs.  She has been encouraged to try the FODMAP diet and the SCAD diets, but they emphasized that diet should be really secondary to the meds.  This was not what I wanted to hear - we are fairly "crunchy" and I really hoped she could at least start with dietary/natural approaches - but whatever they said convinced me that would not be the best way to go.   My dd's case is apparently pretty severe.

Ulcerative Colitis is MUCH different than Crohn's - many people lump them together but they are very different.

Best of luck as you persue this!

Anne

 

[katilac]

I would want a second opinion and I would also want all medical records sent to the hashitomo's doctor, so they can give advice on the best/worst meds regarding autoimmune stuff. 

How good is your insurance? Would a trip to a Mayo Clinic for a full workup be a possibility? My ideal would be to have the overall situation looked at, rather than Crohn's by one doctor, hashi by another doctor, and so on. They are really good at nailing down dx, looking at the big picture, and keeping up with new or lesser known treatments. 

[ktgrok]

4 minutes ago, katilac said:

I would want a second opinion and I would also want all medical records sent to the hashitomo's doctor, so they can give advice on the best/worst meds regarding autoimmune stuff. 

How good is your insurance? Would a trip to a Mayo Clinic for a full workup be a possibility? My ideal would be to have the overall situation looked at, rather than Crohn's by one doctor, hashi by another doctor, and so on. They are really good at nailing down dx, looking at the big picture, and keeping up with new or lesser known treatments. 

The good news is that a good GI will be up on at least somewhat on hashimoto's. I know my son's GI already talked to us, as soon as he was diagnosed with celiac, about the possiblity of Hashi's in his future, as they often go together. She includes thyroid tests with his GI labwork for that reason. She was also the only doctor we saw at the time (and we saw a lot) that was up on PANDAS. Basically, she seemed to know that autoimmune stuff likes to bring its friends, lol. 

Edited March 6, 2020 by Ktgrok

[cintinative]

I think this has been answered but yes, there is a Celiac blood panel they can run as an initial screening.

It is possible to have Crohn's and Celiac co-occurring.  You already have Hashimoto's which I thought was a pretty rare autoimmune.  That said, I would seriously hate to hear that anyone has that many autoimmunes.  

I am not as familiar as Ktgrok with the differences in symptoms between Crohn's and Celiac.  I would hope a good GI would be able to distinguish between the two. 

[Pawz4me]

1 minute ago, cintinative said:

I think this has been answered but yes, there is a Celiac blood panel they can run as an initial screening.

It is possible to have Crohn's and Celiac co-occurring.  You already have Hashimoto's which I thought was a pretty rare autoimmune.  That said, I would seriously hate to hear that anyone has that many autoimmunes.  

I am not as familiar as Ktgrok with the differences in symptoms between Crohn's and Celiac.  I would hope a good GI would be able to distinguish between the two. 

Having three AI illnesses is pretty common. And even more isn't uncommon. I'm diagnosed with two and it's looking like I'm developing a third.

ETA: Hypothyroidism is extremely common. And the statistics I've seen say anywhere from 80-90 percent of cases are caused by Hashi's. So . . very common. I haven't paid much attention to stats on that, but my guess is it's far and away the most common AI illness.

Edited March 6, 2020 by Pawz4me

[cintinative]

Just now, Pawz4me said:

Having three AI illnesses is pretty common. And even more isn't uncommon. I'm diagnosed with two and it's looking like I'm developing a third.

 

Ugh!!! If my memory is correct, doesn't your husband also have a very serious illness, like cancer? What a heavy load you are carrying!!

[Pawz4me]

2 minutes ago, cintinative said:

 

Ugh!!! If my memory is correct, doesn't your husband also have a very serious illness, like cancer? What a heavy load you are carrying!!

Yes, he does. Thanks for remembering, and for asking! We've had a boatload to deal with over the past few years. My problems are nothing compared to his, though. Although I was always genetically susceptible to developing AI crap, I'm firmly convinced that stress has been the trigger for them.

Edited March 6, 2020 by Pawz4me

[cintinative]

Interesting. https://celiac.org/about-celiac-disease/related-conditions/crohns-disease/

Studies debate the extent of the connection between Crohn’s disease and celiac disease, but all conclude that Crohn’s disease is more common in those with celiac disease than in the general population."

[cintinative]

3 minutes ago, Pawz4me said:

Yes, he does. Thanks for remembering, and asking! We've had a boatload to deal with over the past few years. My problems are nothing compared to his, though.

 

I am so sorry. That is such a burden, and I am sure the stress does not help the autoimmune issues. What is your husband's status with the cancer?  Praying for you today.

[Pawz4me]

Just now, cintinative said:

 

I am so sorry. That is such a burden, and I am sure the stress does not help the autoimmune issues. What is your husband's status with the cancer?  Praying for you today.

He has stage IV kidney cancer. He has (thankfully) been stable for 2.5 years on a targeted drug. But he's developed some worrisome problems over the past couple of months and the oncologist says it's time for a treatment change. So he'll be starting an immunotherapy drug soon, hopefully in a couple of weeks if some of his blood work straightens out a bit.