So It Looks Like I Have Crohn's

[penguin]

So the small bowel follow through x-ray showed findings "consistent with Crohn's Disease"

Fabulous.

I have an appointment on Monday with Fab GI's PA to discuss my "options." I assume that means more testing and trying out meds. Man, this blows. I'm going to be on medication for the rest of my life.

This has been a very. bad. day.

Of to do some research

[Noel1965]

Penguin - I am so sorry about your diagnosis. Yes today would be a sucky day for you....but only time will tell. My brother, cousin and an aunt all have had crohn's for decades and have never had to take any meds- they are okay with diet changes, etc. Sorry to say another of my aunts has had to take many different medications for her crohn's so I understand your worry. But try to keep your chin up maybe the your doctor will be talking about some less drastic options...

[Fiddle-Faddle]

Oh, Penguin, I'm so sorry you had such a lousy day.

I just looked up Crohn's. Is it possible that it is some sort of offshoot of celiac? How do they separate the symptoms of Crohn's from the symptoms of celiac? It looked like pretty much the same symptoms (but I only looked up one site).

Does this mean you don't have celiac? Or do you have celiac AND Crohn's?

It did say that extended periods of remission are common.

[Mtndog]

Chelsea- I'm sorry...that stinks. I hope things turn oouot better than you expect!

PS Am glad you're back.

[penguin]

  Fiddle-Faddle said:

Oh, Penguin, I'm so sorry you had such a lousy day.

I just looked up Crohn's. Is it possible that it is some sort of offshoot of celiac? How do they separate the symptoms of Crohn's from the symptoms of celiac? It looked like pretty much the same symptoms (but I only looked up one site).

Does this mean you don't have celiac? Or do you have celiac AND Crohn's?

It did say that extended periods of remission are common.

It's one of the legitimate irritable bowel diagnoses

It's characterized by narrowing, inflammation, and blockages of the intestines. I guess they saw some kinks in my hose

It has very similar symptoms, what made Fab GI look for it is that my D hasn't gone away completely and I have burning in my small intestine. Good call, looks like.

As for my celiac situation, who the hell knows? It's irrelevant though, since I have a wheat allergy apparently anyway. I'm all confused, hopefully I'll have some answers on Monday.

[Helena]

Bad news, indeed. I'm sorry to hear about that---I hope you don't have to be on meds forever!

[Rachel--24]

Chelsea...sorry about the news.

It sucks but maybe you'll be one of the people who dont have alot of problems from it.....maybe it will turn out not to be Crohn's?? It doesnt sound like they know for sure yet??

I had read about Crohns before....I remember that alot of people with Crohns are actually on a gluten-free diet. Not that they are Celiac but apparantly the diet is helpful for Crohns too. I think if you DO have it....you will be helping yourself already by being off gluten.

[tarnalberry]

I'm sorry about the new dx. I hope that they'll have more useful information, and you don't necessarily have to be on meds for life.

[trents]

Not sure but I think Crohn's is further down in the GI tract than celiac disease. It is also and autoimmune disease but the trigger is not known.

Steve

[eKatherine]

My sister came down with Crohn's after an appendectomy. During the surgery they noticed that the section of her intestines immediately adjacent to the appendix was inflamed. After she was sick and barelyable to eat anything for a year, they operated and removed that part. Now she's fine, but can't get insurance.

[Fiddle-Faddle]

Weren't you doing a gluten challenge a while back? Could that have played a role, inflamed things or something?

[TriticusToxicum]

  trents said:

Not sure but I think Crohn's is further down in the GI tract than celiac disease. It is also and autoimmune disease but the trigger is not known.

Steve

If I remember correctly Crohn's is a large intestine disease, while Celiac's is a disease of the small intestine. They originally thought my sister (also celiac) had Crohn's until they did her colonoscopy and all loked ok. Her endo on the other hand showed classic celiac villous blunting.

[nikki-uk]

  penguin said:

I have an appointment on Monday with Fab GI's PA to discuss my "options." I assume that means more testing and trying out meds. Man, this blows. I'm going to be on medication for the rest of my life.

This has been a very. bad. day.

C, - Alot to take in I'm sure

Damn, I bet you didn't see that coming

Do you now have to have a colonoscopy too? (I think Crohns usually affects the large intestine,but can affect parts of the small bowel (ilium?))

Someone else mentioned that the gluten-free diet does actually help some Crohns sufferers.

I know 2 people with Crohns - and they both seem to be managing their condition quite well without drugs/steroids.

They both had really bad flare ups in their teens (requiring steroids at the time) but since have been pretty much ok (they are both in their 50's now)

They both avoid different things in their diet - everyone's an individual with Crohns I think

When the docs were trying to find out what was wrong with hubby they thought he had Crohns - which prompted me to look around online and I found this site (which although British) has lots of very useful info.

You might want to have a look.

Open Original Shared Link

Keep us posted on how things go

[Jestgar]

Chelsea, I'm so sorry that you have more to deal with.

Sending you strength

[IrishKelly]

  penguin said:

So the small bowel follow through x-ray showed findings "consistent with Crohn's Disease"

Fabulous.

I have an appointment on Monday with Fab GI's PA to discuss my "options." I assume that means more testing and trying out meds. Man, this blows. I'm going to be on medication for the rest of my life.

This has been a very. bad. day.

Of to do some research

As strange as this sounds, please try not to read to much into that. The same thing happened to me...except the GI dr. told me what he saw was colitis. As it turns out, i went for a second opinion and it was not colitis...it was temporary colitis induced by a gluten intolerability (which you already know you have). The dr. told me that this allergy can mimmick other problems such as colitis, crohn's, and diverticulitis. You should try going to www.google.com and do a search using the following words: chron's celiac disease

Good Luck!

[IrishKelly]

  IrishKelly said:

As strange as this sounds, please try not to read to much into that. The same thing happened to me...except the GI dr. told me what he saw was colitis. As it turns out, i went for a second opinion and it was not colitis...it was temporary colitis induced by a gluten intolerability (which you already know you have). The dr. told me that this allergy can mimmick other problems such as colitis, crohn's, and diverticulitis. You should try going to www.google.com and do a search using the following words: chron's celiac disease

Good Luck!

OH, and another thing...he also told me it could take up to two years for all the d to completely go away because of the extent of the damage...i bet this same thing has happened to you. I'm currently taking

L-Glutamine 3 times a day and it has pushed my healing time along so much faster, all of the scary blood and gross mucus stuff has gotten much better...i can't wait to see what the next few months will bring because i've only been trying the L-Glutamine for the past 7 weeks. I would totally give this a shot if i were you, it's a great form of natural amino acid that your intestines are screaming for .

[penguin]

Actually, Crohn's would make an enormous amount of sense. I'm sure I've had this as long as I've been sick, and while being gluten-free alleviates some of the problems, it doesn't get rid of them entirely. This would also explain the ridiculously painful spasms I get. I had an idiot GI doc a few years back that should have tested more extensively for it.

Also, in my celiac disease panel, only the IgG was elevated, which can also indicate Crohn's.

I thought Crohn's was a disease of the large bowel as well, but it's not. Colitis is, but Crohn's can affect any part of the GI tract from the mouth to the anus, and in most cases its the ilium (where the small intestine meets the large intestines). I'm not entirely sure what they saw in the test, I have an appointment on Monday where I'll find out more. On the phone, the nurse sounded like the test showed A LOT of evidence of Crohn's.

I got sicker after being gluten-free, actually, because my small intestine started burning so bad to the point where real food (chicken, veggies, etc.) made me very sick (a lot of pain, vomiting), and for a few weeks I basically lived on doritos, because that was the only thing that felt good on my stomach. My guess is that I have a narrow area close to my stomach and that is why it burned so bad to eat real food within 30 minutes of eating, which takes longer to digest, as opposed to corn chips, which are more or less a thin paste by the time it gets to the duodenum. Makes sense to me, anyway.

I'm actually going to trust my doctor on this one (gasp, shock, recoil), because I have a good one. He recognizes that gluten is a major problem for me, even if I had inconclusive tests, and that I need to be gluten-free anyway. (I can also attest to that, because the last couple of days, I said screw it, if I'm going to be sick anyway, I'll eat what I want. Bad idea.) So I don't know where I'm going from here, at least it would be an answer. I'll know more on Monday, and right now, I just plain don't have the heart to do extensive research.

Thanks for caring, everybody.

[AndreaB]

Chelsea,

I'm sorry.

I also know of someone who is managing crohns without the meds. I think she was on them to begin with. I can give you her website if you are interested.

[Fiddle-Faddle]

Why is an elevated IgG an indication of Crohn's? I'm not being argumentative, it's just that that is also MY only elevated level. If IgG is specific for gliadin, which is wheat, what is the connection with Crohn's?

(I need an emoticon of a someone scratching their head in puzzlement.)

[Carriefaith]

I'm very sorry

However, chron's, for some people, can be controlled with diet and you may not need to be on meds for your whole life. Maybe ask your doctor about a diet low in starch (grains, potatoes, corn, rice) and sugar.

[penguin]

I don't know about why the IgG elevates with Crohn's in some people, that's just what I've read and what I've been told by my dr's, that the IgG is the least specific and it can mean other things, most often Crohn's.

So who knows.

I'm just not thinking about anything until Monday, after my appointment. No need to stress out over it yet.

[Fiddle-Faddle]

Gee, I wonder if those of us who have only elevated IgG's will join you in the Crohn Club I guess I'd better read up on it some more...

[Rachel--24]

  Fiddle-Faddle said:

Gee, I wonder if those of us who have only elevated IgG's will join you in the Crohn Club I guess I'd better read up on it some more...

An elevated IgG is least specific for Celiac....which is why most docs dont give an official Celiac diagnosis based on only the IgG being elevated. It can be elevated for other reasons...it doesnt have to mean Celiac and it doesnt have to mean Crohns...although both of these should be further investigated.

[Fiddle-Faddle]

Hmmm. I had requested (begged was more like it) the celiac blood tests after getting that horrible rash (I still think it was DH) and finding all the info linking DH and celiac and Hashimoto's (which I'd had for 18 years). However, I had been gluten-free for a month before the test (didn't realize it made a difference, and the idiot doctor certainly didn't say anything) and had also been on Prednisone for 10 days a month before the blood test--so, only the IgG was positive --extremely positive, actually (and said idiot doctor told me everything was normal).

I assumed that because of my positive response to the gluten-free diet (more positive than I'd expected, as tummy bloating and alternating loose stools and C disappeared and on ly then did I realize that I'd actually had tummy problems) (yeah, I missed that one), that I am either celiac or gluten-intolerant (if there's even a big difference)--but maybe I should be looking into Lyme and Crohn's?

{{{SIGH}}}} When do any of us get a break??????

Sorry, Chelsea, I don't mean to hijack your thread here--I'm just wondering if I'm about to join your club--or the Lyme Ladies--or both????

[Rachel--24]

  Fiddle-Faddle said:

I'm just wondering if I'm about to join your club--or the Lyme Ladies--or both????

How do you feel....thats the important thing? Do you feel like going gluten-free was the answer or do you feel like something still isnt right?

Did they test your IgA levels when they ran the Celiac tests? If you were IgA deficient that would be another reason for only having an elevated IgG.

If you are continuing to have problems then maybe other possibilities should be explored.