Crohn's diagnosis without typical symptoms

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paul_mcbride

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crohn's diagnosis without typical symptoms

Hi All,

My GI doc is convinced that I have Crohn's because of weight loss, burning mouth/mouth ulcers, and odd rashes. I had some blood work done which
convinced her:

SCA IGA (Saccharomyces cerevisiae ab iga): 30.3 U
(reference range: >= 25.0 positive)

ASCA IGG (Saccharomyces cerevisiae ab igg): 31.2 U
(reference range >= 30 positive)

Apparently if both of the values above are positive, the test is highly
suggestive of Crohn's (95% specificity).

This all started when I began having problems with reflux. No amount of antacids would help (they make it worse), so non-acid reflux (e.g., bile reflux) is suspected. I am getting a 2nd opinion on Friday.

BUT, I don't have any of the lower GI issues normally associated with
the disease (e.g., no frequent toilet trips)... just weight loss (about a third of my body weight), odd rashes, and burning mouth/ulcers.

Did anyone here begin their Crohn's journey with primarily upper GI issues?

Many thanks for your insights.

Paul
 
Have you lost your appetite? Do you have any stomach pains? Are your bowel movements normal? Do you have blood in your stool?

Even if you don't have any lower GI issues you can be showing signs of Crohn's. Not everyone experiences their flare the same way. I think you're smart to get a second opinion but to prepare yourself for the fact that it may be Crohn's.

I myself don't get the mouth ulcers but I have a terrible time with reflux. I take nexium daily.

Good luck and fingers crossed that somehow your lab results were incorrect.

Amy
 
>Have you lost your appetite?

I eat little, mainly apples, lettuce, small amounts of mozzarella cheese, and almond butter, the foods that I tolerate the most. Generally the less I eat, the better I feel.

>Do you have any stomach pains?

Yes. And a lot bloating after meals. Feels like very slow transit of food. Exercise and ginger seem to bring the most relief.

>Are your bowel movements normal? Do you have blood in your stool?

Hard to say. No diarrhea or blood, but generally foul and incompletely digested.

One doc has said that treating Crohn's will eliminate the upper GI, as she thinks Crohn's is happening in the small bowel.

Cheers.
 
I had the reflux and burning stomach to begin with. It is my belief that this was a secondary result of my stricture. The stricture was giving me problems when I would eat onions or other food that I was sensitive to. Due to the blockage, it would make my stomach feel queasy, and then I would take antacids.

I believe the antacids lowered my stomach acid enough to allow H-Pylori to get a grip on my stomach, which then became much worse in a hurry. I had three separate tests for H-Pylori that all showed I did not have the bacteria. An endoscopic picture of my stomach was taken and it looked like a stewed tomato. I decided I was going to treat myself for H-Pylori since it is one of the very few bacteria that can cause this specific problem.

I used a Rife frequency device to treat myself. This is an alternative treatment method I had used before for my wifes Lyme disease. I used the precise frequency of 676 Hz. This is the frequency that is supposed to kill H-Pylori. I did not know if it was going to work, as it does not always work for all bacteria. It improved my symptoms immediately.

I had used this before but the effect only lasted two days. I later found out that it has to be done several days in a row to totally eliminate the bacteria. I did it for ten minutes a day for six days and permanently resolved that problem. I actually thought my problem was over at that point I felt so much better.

However, I did not know I had a stricture or Crohns at that point, and the blockage still gave me trouble more and more. In the end I had to have surgery to remove the stricture as that was the original problem.

So I guess the moral of the story is that there can be more than one problem going on. I got lucky on the H-Pylori. Lucky that was the problem and lucky that an somewhat unreliable alternative treatment method happened to work well with that particular bacteria.

Some of your symptoms do not fit with H-Pylori, and some do. It is quite possible you do have Crohn's. It presents itself different for different people. You also could have more than one problem as I did. I hope you can find out what exactly is going on.

Dan
 
yeah, although seemingly more rare in all the reading I've done on Crohns/UC, the affected area for Crohns can be from the lips to the anus, and anywhere in between, just most of the time the bowels/colon/etc..are the victims and less of the time it's the mouth/throat/stomach....hope all goes well in your discoveries, let us know....
 
Considering the intolerance to many foods, the poorly digested food, stomach pain, and blood results I would say that you are closer to a classic case than you realize. Fingers crossed that I'm wrong and it is something minor.

Amy
 
Welcome to the forum... I just thought I'd let you know that my Crohn's Disease started with mouth ulcers and weirdo rashes in weirdo places.
 
HI welcome.

Just wanted to say mine is in my small bowl as well so your not alone. I also had weirdo rashes etc. ;)
 
The prednisone is so bad with it's plethora of sides for me I can't tell what's the Crohns or what's the pred, like my racing heart, higher bp, joints etc...I have moon face and bad acne from the pred, I have thrush, and my skin is itchy, losing/thinning hair the list goes on; and I feel frustrated that it's all masked right now, pred screws one up so bad that it's right there next to the Crohns as far as sides/symptoms, as far as skin/rash issues, who knows what's from what in my case...pffft...

I'm surprised though at all the mouth ucler reports, I've never had that.....
 
odd crohn's issues

Hi All,

Many thanks for your kind replies. This is an attached image of one of those rashes mentioned. It is on my back, running across my thoracic spine. Totally bizarre. Anyone ever gotten something like this?

Also, has anyone had the positive asca tests? i.e., IGA and IGG Anti-Saccharomyces cerevisiae antibodies?

Cheers,
Paul
 

Attachments

  • back-rash1.jpg
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paul_mcbride said:
>Have you lost your appetite?

I eat little, mainly apples, lettuce, small amounts of mozzarella cheese, and almond butter, the foods that I tolerate the most. Generally the less I eat, the better I feel.

>Do you have any stomach pains?

Yes. And a lot bloating after meals. Feels like very slow transit of food. Exercise and ginger seem to bring the most relief.

>Are your bowel movements normal? Do you have blood in your stool?

Hard to say. No diarrhea or blood, but generally foul and incompletely digested.

One doc has said that treating Crohn's will eliminate the upper GI, as she thinks Crohn's is happening in the small bowel.

Cheers.
Click to expand...

Definitely agree with the less I eat the better I feel, but if I drop my calories I get a wicked black mouth/tongue-ulcers thing which the docs and my research says comes from malnutrition and dehydration.....Bloating for sure, and I too am generally without D ot blood either, which can be part of it for sure. I was Dx'd in last DEec/Jan this year.

Mine is small bowel with fistula showing to the large as well in last GI in Jan and surgery is now imminent in the summer for a resection.

Welcome to the forum - I have found fabulous info here and great support!!
 
Well I just met with a very competent GI doc and am on the docket for abdominal CT scan, colonoscopy & endoscopy, barium small bowel series, and small bowel capsule... This should be telling (good think I have insurance at the moment)! One doc says that ASCA positivity is highly suggestive of Crohn's, but the other is less certain...

Cheers,
Paul
 
I also get mouth sores and skin rashes, and I very recently started experiencing heart burn or reflux symptoms. My GI says these are typical of Crohn's. Controlling my diet helps a lot. For me that means cutting out fried, fatty foods and lowering or cutting out gluten.
 
oh yeah, just checked out the pic, that's what my rashes look like too. Fun stuff huh?!
 
Colt I know it's been a while since you've been on here but please reply as soon as you can. I have the same rash as you and I'm starting to develop those other symptoms. Did you ever figure out what's wrong?
 
Speaking of rashes.....has anybody been diagnosed with pityriasis rosea? And is it associated with CD? I've had it twice now and wondered if it was another extra intestinal association of Crohn's disease!
 
I have the same rash, my GP said it's hives (urticaria) but for me there's no known cause. I take antihistamines when it's flared up and really itchy. I didn't know it can be associated with Crohn's!
 
I think positive ASCA, skin rashes and upper GI problems are also seen in Celiac disease (I suspect whoever ordered the ASCA test would have checked for celiac too)...
 

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