Not diagnosed, looking for info/advice

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
May 6, 2011
Messages
5
Hello everyone :)

Let me start off by mentioning that I have not been diagnosed (or tested) for crohns. I have however been sick for the past two years and for the past year have suspected a gluten intolerance (haven't been tested). Although the gluten-free diet seemed to help at first, my symptoms have kept on coming back, and for the past two months or so have been increasingly worse despite my extreme efforts to eliminate any chance of gluten contamination in my diet. I'm starting to think that there's something else going on with me.

All the doctors I've seen so far have been no help at all. However I'm going to an out of town diagnostic clinic later this week and would like to show up armed with as much information as possible so I know what sorts of questions to ask.

I'm wondering if anyone here can relate to my symptoms and can give me advice. Here are my symptoms:

-Mouth sores that only ever develop 15 min after eating. This is always the first symptom.
-Within a few hours I have cramping, bloating, sometimes D.
-By the next day (often sooner) I have fatigue, fevers, a yeast infection, sometimes sores in "other places", dizziness, weakness, brain fog, muscle and joint swelling and pain, anxiety, headaches, my scalp becomes swollen and my hair limp and stringy and it starts falling out a lot more than it should, more D, and cysts (in my mouth and scalp) that swell up. The worse these symptoms are, the less I can tolerate other foods without D like soy, coffee, milk, cheese, etc.

If I don’t develop mouth sores again, I start feeling better within two weeks, but lately I’ve been feeling ill chronically. I think it’s important to mention that my symptoms always show up in the same order, meaning that I go from getting mouth sores and D and cramps the first day, then start additionally experiencing autoimmune and neurological symptoms for the days afterwards. I’m wondering if Crohn symptoms appear this way?

Anyway, I know this is kind of a shot in the dark, but I’m really at loss. Any and all comments and advice will be deeply appreciated!
 
Hi Tessa and welcome. Goodness, it sounds like you're really getting put through the wringer health wise, my condolences :( I'm so sorry you're having to go through such tough times.

What kind of doctors have you been to? Have you requested to be referred to a gastroenterologist? If not, I would and I'd probably demand to be scoped at both ends.

We DO have a undiagnosed club thread that you may want to read through as well.

I wish you all the best and hope you're able to find out what's going on and start getting properly treated soon!
 
Thanks David :) I plan on asking for a gastroenterology (and an immune specialist) when I go to the clinic this week, hopefully the wait list wont be too long.

Also thanks for directing me to that thread! I didn't notice it before.
 
Oh Tessa that is really horrible, I really feel for you chick. I really hope this diagnostic clinic will be able to help you.

Make a list of everything you want to say when you're in there (I always forget stuff if I don't do this). I also find it really helpful when I have someone with me supporting me, my mum normally comes with me to appointments like this because I forget to ask questions and stuff like that. Do you have someone to go with?

Good look sweety, please let me know how you get on.
xxx
 
Hi Tessa, and welcome! this is a great place, with lots of answers and support.

It almost sounds like you have a candida overgrowth. This can occur due to overuse of antibiotics, as it wipes out all intestinal flora, and the bad bugs grow alot faster than the good ones. Many other things can cause this problem as well. I had a candida overgrowth, and I had many of the same symptoms as you. I'm not sure if this is connected to crohn's in any way, but I have been diagnosed with crohn's as well.

You could try eating lots of yogurt, or taking a probiotic supplement. Also, try eliminating any fermented foods (beer, wine, soy sauce) as well as mushrooms, sugar and gluten. It could help alot.

Other than that, ask your doctor to have you tested for candidiasis, celiac, and crohn's. The main things they look for with crohn's, in my experience anyways, are anemia and an elevated white blood cell count, abdominal pain in the lower right area, diarrhea (bloody or not.) They also look for joint pain, eye problems and of course, inflammation in the small bowel.

I really hope you find some answers, and some relief. Although I have been diagnosed, I'm suffering from alot of pain and discomfort. Good luck :)
 
Thanks for the supportive words Supercellbaebe and 25times :)

Just an update: I went to the clinic this morning and the doctor who saw me was very helpful. For the first time I really felt like I was being heard and felt like the doctor was actually going to do everything necessary to get to the bottom of my health concerns. He mentioned crohns disease, refractory sprue celiacs, and pancreatitis since I have two gallstones. I'm getting some bloodwork done as well as a pelvic, abdominal, and vaginal ultra sound. Hopefully I'm headed in the right direction :)
 
Everything but your constant mouth sores are some of my exact symptoms I have and I too have not been diagnosed. However, I cannot eat beef and can rarely eat pork or turkey. I too am limited, less so than you, on my dairy intake. I also have well restrooms issues...and arthritis. I also have been allergic to every antibiotic given to me since this started even ones I have taken before. I have ulcers and have had three scopes, but since my biopsies are "inconclusive" I have not been diagnosed..lame, but I am hoping you have better luck than I have had. I hope you find your answers.
 
Thanks for the supportive words Supercellbaebe and 25times :)

Just an update: I went to the clinic this morning and the doctor who saw me was very helpful. For the first time I really felt like I was being heard and felt like the doctor was actually going to do everything necessary to get to the bottom of my health concerns. He mentioned crohns disease, refractory sprue celiacs, and pancreatitis since I have two gallstones. I'm getting some bloodwork done as well as a pelvic, abdominal, and vaginal ultra sound. Hopefully I'm headed in the right direction :)


I hope you get your answers :)
 

Latest posts

Back
Top