So my doctor is questioning my diagnosis after 11 years.

[InstantCoffee]

I went back for the first time in 2 years to schedule some scopings to check on my insides.

He seemed a bit confused when I told him normal bowel movements, no medications for 2 years. He looked through my history and told me a lot of my symptoms are not consistent with Crohn's and there's no obvious diagnostic markers.

IDK what my first doctor saw, I'd assume it was all in my history which was transfered over. There was non specific thickening of the terminal ileum and inflammation that wans't consistent with crohn's, he didn't go into detail on that.

I think what has him confused most is how my symptoms seem so closely tied to diet and I've responded very poorly to all crohn's medications.

Thinking of seeing a naturopath for a second opinion.

 

[Charlotte.]

Well, I know some people who had to have several MRI scans (scopes were clear) until a GI who sees thousands of ibd patients finally can diagnose them and help them by prescribing the "right" (if it was that easy...) medication. It can be very hard to diagnose Crohn's, some people are misdiagnosed with ibs for ages.
Seeing it's the opposite for you is quite uncommon. So, congratulations, probably you are healthy/have been healthy/will be healthy? But what then has it been in the past? Ibs? Some allergy?
Today, scientists (at least many of them) believe ibs is linked to inflammation as well, so I think, even though it is not Crohn's it could have been inflammation anyway. That's what happens to your gut when you have a food allergy as well (but not as severe as having Crohn's but the symptoms can be similar).
If I were you I would be happy and just keep things the way they are, because obviously it works out pretty good. Be proud of yourself that you found something (diet and supplements) that really helps you. Just enjoy!
If thinks get worse again, I would consult a GI again, telling him you have been diagnosed with Crohn's once even though it was not certain later.
And if it was Crohn's you are one of the lucky ones who are in a perfect remission without any medication.
Whatever it is, I'm happy for you, InstantCoffee!

 

[InstantCoffee]

But I'm not in perfect remission, I'm hardly happy, and I'm not healthy.

When I was 14 and diagnosed I was hospitalized with severe malnutrition, remicade got me through HS but in college it stopped working, I got chronic abscesses, and everything gave me diarrhea, soon it was nausea and vomiting, then non-motility and severe pain, weight loss, and what felt like weakening of my cardiac function. I thought I was going to die because of how bad I was until I cut gluten, canola oil, nuts, potatoes, and high fructose corn syrup.

I improved, gained about 40 lbs then had terrible infections again, they only went away on a low GI diet and I lost 25 lb.s. Ever since I've struggled with sugar in my diet and maintaining a weight over 130 which is really low.

Everything I eat gives me really bad gas, it's painful and embarrassing. I'm not sure what I should even be eating anymore. I can find sources saying just about every food group is bad for Crohn's in some way.

At least if it's Crohn's I have a lead, I'm constantly researching alternate medicine and refuse to give up and live a restricted life. If it's not Crohn's I have no where to even start.

 

[Charlotte.]

Oh, I'm sorry, I thought you were in a perfect remission. Well, then, to me, it definitely sounds like Crohn's. So, why did you doctor tell you your symptoms are not consistent with Crohn's?
Apparently there are some lucky people out there who can eat anything being in remission and those who can't. Or those who fall off remission any time they eat certain foods. And those who are still looking for the "perfect" diet to improve symptoms (like I do as well).
There are some studies discussing the link between igg4-antibodies in the blood agains certain foods and pro-inflammatory reaction in the body. Is your GI someone currently involved in research and does publish study results as well? If not, he might be a bit "old school", I know some decades ago the link between foods and flare-ups was negotiated vehemently. Today, studies have proven a link, others deny the link.
We should never give up. Looking back where you had to have go through you are a really strong person.

 

[24601]

Is he going to do scopes? Or an MRI?

 

[teeny5]

I don't know why he would tell you that. I hope you still push for the scopes. I would want a different Dr I think.

 

[InstantCoffee]

I want the scopes but I have no way of affording my $1500 deductible.

 

[Clash]

There are a number of patients with CD that are considered to have refractory CD that do not respond to available meds. Some of the patients react to the meds as well as any foods and are continuously in a symptomatic flare. Others just do not respond to meds as their active disease does not abate but they are otherwise asymptomatic and have no derogatory response to any foods.

Hopefully you will be able to find a way to move forward to get more testing so they can definitively determine what exactly you are dealing with. I know the concern of have your dx questioned must worry you so I hope all can be resolved quickly.