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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Confusing diagnostic experience/language barrier - Crohn's or coeliac+colitis??


06-27-2017, 08:11 AM   #1
xferrx
 
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Confusing diagnostic experience/language barrier - Crohn's or coeliac+colitis??

Apologies for the very long post....in summary I am living abroad and have just had some confusing tests! Here are my general symptoms, hospital experience, what the doctors said, and why it doesn't quite all add up....Advice appreciated!


Background:
I am a 30 year old female currently living in Vietnam. Just had some test results back which leave some questions unanswered...will try to keep this as short as possible! Had gastro symptoms for a while so got them checked out...but there were some barriers to how well that went.

Symptoms:
Diarrhoea (2 years?) - a few trips of watery d. a day for quite a long time
- in the past I have had a few bouts of gastroenteritis/parasitic infection and had IBS-type symptoms for a while afterwards (without chronic diarrhoea). I just figured I had IBS or something
- pain/cramping not present
- worsening/more frequent trips to the toilet, inc. waking up early to go a few times. (had 8 trips today)
-Lots of water comes out, quite bad in this tropical climate
-an episode of severe cramping/diarr. 3 months ago, attributed to 'dysentry' at the hospital and given antibiotics

Depression (for 1 year, mainly finished by 6mths ago 6 months ago; another reason I didn't get this checked out - I lacked energy but thought depression was the reason)
-taking SSRIs for that and anxiety; feeling noticeably better after switching types 6 months ago
-feel it's abnormal to still be struggling with low energy, weakness and appetite loss

Urgency (past few months) - sometimes you just have to go...

Weight loss (normally a skinny 46kg 165cm person but in the past 18 months my weight dropped to 40kg, up to 41kg after appetite/food increase. I look a bit ill tbh

Extras: a blood test when I had tonsillitis 1.5 years ago (a similar time to the start of my depression) revealed small red blood cells (doctor unconcerned) and elevated liver enzymes (doctor tested me for hepatitis; negative...said something about long term inflammation and come back, I didn't follow up)


Diagnostic tests:
After worsening diarrhoea and a failure to recover weight and energy after recovering from depression, I finally did some googling, convinced myself I had coeliac disease, and went to a hospital. As I'm not from Vietnam, language was often an issue despite having people to translate.

A week ago, Wed: Consultation with doctor, blood tests inc blood count, and thyroid were normal. Blood tests for coelic are not available here. Doc recommended endoscopy and colonoscopy. I specifically asked to be tested for coeliac disease. Was told to show up early the next day to take something to 'make me poo' before having the scopes. Didn't know what I was in for...

Thu: Day of endoscopes - turns out I had no idea what a bowel prep was and was surprised when I had to drink 2 cups of terrible tasting stuff followed by 10 cups of water...I threw up halfway through it. I started the process again, and threw up halfway through again. Enemas! They said. I have a feeling not all of those laxatives came out because what followed after enemas no 1 and 2 was pretty horrible....shaking, sweating, extreme diarrhoea, vomiting, AND feeling like I was going to pass out...intense. Especially as the nurse kept coming into watch (whyyyy)

After that the endoscopy and colonoscopy was fine because I had some anaesthetic and can't remember it!

What wasn't fine was going into the doctor's office afterwards to find that inflammation had been spotted in the first bit of my small intestine and in my sigmoid colon. 'You took biopsies though, right?' I said when the doctor wrote a prescription for antibiotics for the inflammation. Nope. They hadn't. So back I went for a repeat endo/colonoscopy half an hour later :/


Results:
Today I went to collect the biopsy results. By this time I had google translated my written results and found the following:
-inflamed mucosa small intestine
-patchy inflammation of the sigmoid colon
-a hemmaroid (I - maybe it means internal)

So by this point I am worried I have Crohn's. Getting my test results today I got told that I have coeliac disease. I asked them to explain exactly why I had it - what did the intestinal findings show? The first 2 doctors said that it wasn't based on the biopsy but on symptoms, and were really vague. After getting to see a doctor who seemed very 'high-up', he did manage to convey that the intestinal lining showed inflammation and 'smoothness'

But what about the patchy inflammation of my sigmoid colon? Do I have other inflammation in my colon - who knows, turns out that I had a sigmoidoscopy and have now been referred to a hospital 'that has the long colonoscope tubes' for further tests. The colon biopsy mentioned 'many inflammatory cells, fibrous tissue, chronic inflammation'.

So, I'm worried they told me I have coelic because I went in and said I think I have it. I'm worried I do actually have celiac + maybe microscopic colitis aswell. But the inflammation was visible! Or Crohn's instead. This doesn't explain everything.

Tomorrow I will go to a bigger hospital, taking a friend to translate. I am wondering, so that I don't have to repeat any more unnecessary tests, what should I ask for this time? What do I need to do? What do you think?

Again, they were happy for 'chronic inflammation of the sigmoid colon and upper small intestine' to be the the final result (before I DEMANDED biopsies), and just give me antibiotics. And now I have coeliac and an inflamed colon and a hemmaroid? But still have to go to another hospital to repeat the tests and wait another week?

Any advice, similar anecdotes, ideas, etc welcome! Thanks!
06-27-2017, 11:07 AM   #2
Glockola
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Join Date: Apr 2017
Location: Stockholm, Sweden
Have you been evaluated for tropical sprue?
Your history, biopsy and staying for long time in tropical climate makes me suspicious.
06-27-2017, 11:47 AM   #3
Jabee
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Join Date: Oct 2016
Location: Massachusetts

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I was diagnosed with celiac disease nearly 20 years ago; my GI found my villi were flattened (the classic sign) during an endoscopy. There is always associated inflammation with celiac disease when the patient is not on a gluten-free diet; one of your doctors mentioned your small bowel was "smooth", which accounts for that diagnosis. The gold standard for diagnosis is small bowel biopsy, and I didn't have a blood test until after my GI diagnosed me via endoscopy. But celiac disease usually affects only the small bowel, so I don't think it would be the source of your large bowel inflammation. Biopsies of the area might confirm crohn's, but often patients' biopsies don't have the clinically significant crohn's granulomas. Patients are frequently diagnosed via imaging, blood tests, and symptoms. I think you are right to question the inflammation they found in your colon. Usually GIs want to scope again fairly soon (3-6 months) after a celiac diagnosis to confirm mucosal healing. I'm so sorry you are dealing with this while living abroad. It makes things just that much more complex.
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