Crohn's Disease Forum » Tests for IBD » Medical Mystery Advice

03-13-2018, 05:14 PM   #1
Medical Mystery Advice

I've not been able to work, single, depleted my funds, and traveled throughout the US hospitals and still remain a "mystery." I am desperate of a diagnosis and treatment so this torture can be over... anyone else have these results or know what it could be?

- 20+ year history of chronic daily diarrhea
- Past 4 years severe flares every 5 months where I cannot leave my home at all
- Intermittent rashes, hair loss, painful periods
- In adulthood onset of migraine and increased urinary urgency
- Positive ANA for 15 years
- Eosinophils always elevated
- Alkaline Phosphatase
- CRP elevated
- Smooth Muscle Ab Scr Ser: Positive
- Anti- Nuclear Ab Scrn Ser: Positive
- Smooth Muscle AB Titer Ser: 1:20
- Antinuclear Ab Titer: 1:160
- ASMA 1:20
- Asilao GM-1 Ab IgG 1:100
- Colonscopy, Endoscopy, Sigmoidoscopy 3x each- all come back negative. Negative biopsies too
- Negative for parasites
- I've tried every diet- nothing works. I was only eating 4 foods at 1 point, still did nothing.
- I've tried every drug except the hardcore UC/Crohn's drugs (because I do not have that diagnosis). No drug works. If it does help, it stops working the more I take it.
- Have tried every natural/alternative/psych treatment- nothing works.

*Johns Hopkins put me in a research study and told me that they keep seeing patients like me with the same bloodwork numbers and they are trying to figure out what it means. But after I participated in the study, they were quick to hand me off to another hospital, so I feel like I am back at square 1 with no answers.

Anyone know what this can be? What else can I do? I'm desperate.
03-13-2018, 06:02 PM   #2
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ronroush7's Avatar
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There is a section in here specfially for those undiagnosed. You might try there also. I hope you get answers soon.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-13-2018, 06:29 PM   #3
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Hmm...Looks like a lot of moderately positive auto-antibodies, especially to liver antigens. Have you been specifically tested for primary biliary cholangitis (PBC)? They usually look for anti-mitochondrial antibodies for that condition. Also, itching skin is a common symptom of PBC. Do you ever suffer from unusually itchy skin?
03-13-2018, 09:47 PM   #4
my little penguin
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Have you tried elemental formula only ?
Amino acid based no intact proteins
Vionex is an adult version
Elemental formula only is used to heal the gut in a lot of conditions
Including Crohns
When solid food is added for Crohns at least
The inflammation comes back
My kiddo gets half his calories from neocate jr chocolate
He drinks his orally and does mot gave a tube

EoE and other egids have raised Eos
But so does normal severe pollen allergies
DS - -Crohn's -Stelara -mtx
03-13-2018, 10:18 PM   #5
Thank you! Scipio I have had on/off itching but I would not say severe and it's not constant. Interesting you bring up liver, because lately I've been thinking it must be something with my liver or pancreas.

When I get my flares, I have extreme pain directly under my sternum. Every doctor I tell, ignores that symptom. Even when I ask them to please focus on that new symptom. I don't think I have PBC because those symptoms don't seem to really fit me, but is there any other liver disease you know of? For a while I thought autoimmune hepatitis, but again every doctor ignores my thoughts on all this.

My little penguin: Thank you for this... no I have not. Do his flares return when he starts to eat again? My problem is when I do withdraw food, and usually a month later start to get better, then it all comes back within weeks or months.
03-14-2018, 03:14 PM   #6
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Location: Wyoming
Primary sclerosing cholangitis is another liver disease. It is not uncommon for it to overlap with autoimmune hepatitis, and it is also strongly associated with inflammatory bowel disease. I don't know that it would account for all your symptoms/bloodwork, though.
03-19-2018, 02:18 PM   #7
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You should try your question on the Microscopic Colitis forum (google Microscopic colitis forum Persky Farms). They recommend Enterolabs testing to find the foods that your immune system reacts to (it can be surprising). It's kind of "alternative" but based on science.
03-19-2018, 10:37 PM   #8
Thank you SN8888- I've done that with no help I've done 4 different allergy tests... super expensive. I restricted all the foods, which were a ton. At one point I only ate turkey, squash, bananas, and avocado. And slowly introduced. Did nothing at all
03-20-2018, 07:08 AM   #9
my little penguin
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When you eliminated foods you were still eating intact whole proteins
Truly eliminating all foods is going on amino acid based formulas
Woth no solid food and no blenderized food
Just amino acid elemental formula
03-20-2018, 09:13 AM   #10
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Might still be worth browsing that Forum (microscopic colitis). There are people there with knowledge of some of things like mastocytic enterocolitis, eosinophilic GI trouble, etc.

For me, bananas and avocados are trouble. Saccharomyces Boulardii is very helpful, along with a low-carb diet (and no gluten, casein, etc).

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