Ileum Suspicious Of Something

[PaulaRichards]

Hello. I hope someone has gone through this and can bring some clarity to the situation. I was diagnosed with celiac a little over 2 years ago- I am 42 years old now. I have been completely gluten-free since that time. Around that time I noticed that I would have days were my stomach seemed to stop working. The pain was intense and it felt like I had a lump in my gut. I could not sit and any pain medicine would make me vomit. I was on an intense vitamin regimen to help heal the GI tract and during those periods I could not keep any food down or even sit because of the pressure. I would get a massage to push things around because usually it would make it feel better. I didn't think too much of it. I had been suffering with these symptoms most of my life- and I really thought it was a healing process. I stopped the vitamin regime about 6 months ago because it would cause such deep cramping and then vomiting. I noticed that the pain would last for longer and all the odd symptoms that I before being diagnosed with celiac disease were slowly coming back. I am the opposite of a hypochondriac and have a really high pain threshold. So I just stored all the info in the back of my mind.

In November the pain became constant. And unbearable. It felt like there was an egg stuck in the center just below the rib cage. Vomiting all day. Severe constipation and very difficult to sit because it felt like it was poking me. Other odd symptoms are feeling like I'm going to have my period all the time. Odd back pains that wake me up during the night. Impossible to sleep on my stomach because I feel either like it is pushing on me or it will be just to painful all over my body to get comfortable. The back of my neck feels like I pulled a muscle. I also feel tightness in my throat- difficult to make food go down.

Even odder my urine is sometimes very dark and smells like a strong chemical those days when the pain is really intense. I have not lost any weight but have lost my appetite and force myself to eat 2 bites. I feel like my stomach is severely bloated. Energy lower than normal but not so low that I feel like I have to sleep all the time.

The pain became so unbearable that I went to urgent care. They performed an ultrasound and noticed that the stomach was distended and full of gas. He sent me to a GI doctor. And then all the yucky tests started. Endoscopy/colonoscopy was normal- the only unusual thing was a slight fever and they could not enter the ileum. I would wake from sedation every time they tried to get in there. The pain after that procedure was horrific. I was really sick and could not sit. CT scan with contrast came out clear. Again slight fever and they had been giving me prednisone for 2 days prior to the scan. The doctor then did the camera capsule. He noticed something in the ileum and sent the images to a specialist of the camera capsule. He has admitted that he has no idea what it is and has never seen it before.

I don't know what to do at this point. I don't know how to manage the pain or all the other symptoms. I have basically stopped eating because feel like it causes pain and makes my life miserable. Water can be difficult to keep down but I forcing myself to drink. And what is the hardest part is not knowing what to do next. GI doctor who specializes in celiac disease? Am I losing my mind? I feel like this is crazy!

Has anyone gone through something similar?

[Ginger7]

Assuming your doctor has ruled out obstructions and/or inflammatory bowel diseases such as ulcerative colitis and crohn's disease? Though you say CT scan normal which might be helpful, have you retrieved all your reports and maybe go for second opinion?

What about labs? Slight fever suggests some sort of inflammatory process ongoing. Were samples taken for biopsies from scopes and an adequate number at that?

Since you did the pill cam, what about sending those images/video to another expert, like one from a major clinic depending on where you live (Mayo or John's Hopkins for example).

I thInk you need to gather all your records and see someone else. I wish I could be more helpful.

[PaulaRichards]

Crohn's was ruled out as well as ulcerates colitis. The overgrowth bacteria was as well. I took the breathe test. A doctor friend told me that the drug they had me on for two days reduces inflammation. So the CT scan with barium contrast wouldn't show very much.

I called another GI doctor who specializes in celiac disease at UCLA and scheduled an appt for first week of March. I am going to pick up all the lab results/biopsies from my initial GI doctor. 7 biopsies taken from the endoscopy/colonoscopy- no report as yet but the doctor feels that they will be normal. He said (from the camera capsule) that it looked like there was a small part of the ileum that was inflamed, like a lesion. But he couldn't say for sure- he honestly hasn't seen anything like it before. He suspects it might be lymphoma. But then he said that it is really rare, and possibly not that serious because it is contained and easy to remedy.

I feel that it would be great if they could take it out. I just want to feel better. It stops the flow of life because the pain is so unbearable. I do worry about obstruction- everything feels like it gets stuck and that is a major part of my pain. It usually happens 2 hours after I eat when I start to feel the pain area get angry at me. I eat very little because I don't have much appetite and food tends to hurt.

But I am wondering if anyone else has had something similar.

Thanks for the info. I have always read the articles and read the blogs with great interest these past 2 years.

[Bubba's Mom]

Get copies of your test results. Call the Dr./specialist you will be seeing and ask if they want a copy of your records prior to your visit. If they have them ahead of time they can look them over and have a better idea of what's going on.

I find your post about having pain about 2 hours after eating very interesting. About 2 hours after I eat I break out in a sweat. Nobody seems to think it's a big deal, but it happens every time I eat..like clockwork!

[PaulaRichards]

Thank you for the recommendation to see another doctor. I saw an expert on Celiac at UCLA. He took his time, reviewed all the results and my medical history. Now, I just need to take more tests, wait for those results, and see him in 4 weeks.

But, to be honest, I feel so much better being with a doctor, who understands Celiac disease and has done research in this field.

The pill cam revealed inflammation and obstruction in the terminal ileum which would explain all the pain after eating. I've started taking milk of magnesia at night to improve flow, flax seed oil in the morning and have been trying to eat small amounts that are easy to digest. So far so good. I'm actually afraid to eat because the pain afterwards is terrifying. But, at 4 o'clock so is driving in Los Angeles.

The only advice that I would be able to pass on to others at this time is : see a doctor who specializes in Celiac Disease. It will save you time and energy that are necessary in getting healthy.

[Bubba's Mom]

I'm so glad you got into a good Dr. The pill cam sounds interesting. Do you have to stay near a monitor when they do it? I was wondering how they captured the images.

I hope you'll keep us updated on what they find..and what they'll do about it?

I'll be seeing Dr. Murry at Mayo once they review my records and set up an appointment. The last GI I saw had no clue about Celiac. After he did my scope he said it looked like I had refractory sprue..then once my genetic test came back (which he didn't read correctly) he said I don't have Celiac at all.

I still break out into a sweat 2 hours after I eat, so it seems like I might have something going on in there too?