View Full Version : Help for a friend - IBS/GI issues?

10-16-2012, 01:21 PM
I am hoping some of you who have IBS/GI type issues can give me some advice.

A very dear friend has a daughter, now 15, who has had horrible GI issues for years now - she's seen Gastroenterologists and had every horrible test they can think of done to her...they are saying they're out of options now, and she still has severe problems. They tested for Celiac, they scoped her whole system, they took samples and biopsied, they tested for rare types of amoebas and parasites, you name it - no results.

Food just goes through her like greased lightning, and she is so thin her periods have stopped - she eats like a horse, but nothing stays in her long enough for her to absorb it. She takes vitamins so her vitamin levels are okay - she's low on D, but otherwise her blood work is okay in that respect.

Her mom is just desperate, as you can imagine.

I am having lunch with her next week so she can pick my brain about this - they're going to try an elimination diet to see if any of that helps, but what else should they do?

i don't think they have seen a Rheum or an Immunologist - I know many times IBS can be autoimmune-related, but since I have not had that set of symptoms, I really don't know much about it. Do any of you have suggestions?

Thanks in advance for any help you can give....

10-16-2012, 01:57 PM
Did they do a biopsy of the colon, in multiple locations? No sign of any form of colitis? There's a form of that which is diagnosed with a microscope. Most other forms are visible by the "naked" eye when doing the "usual" modern colonoscopy. Something else to check, though it's rare to be active in a female due to the nature of chromosomes, is a primary immunodeficiency, such as CVID (which is what I have). It involves a sickly child, who gets better as they hit puberty, then decline in their twenties to thirties, so I'd say it's probably not that. It does have IBS with resultant malnourishment involved with it ('course, it could be "malnourishment with resultant IBS", depending upon what came first, the chicken or the egg... tic). Anyway, all sorts of AI stuff comes with IBS/IBD as a "side-effect", so that should be checked into. Stress can also be an issue. When I was 16, I was a nervous high schooler (who didn't want to be there), and I had all sorts of issues with my colon. Turns out, once I got older and had a child that has Asperber's, they now think that I had that, but have "outgrown" it (was it *really* asperber's?...). The autism spectrum person can have all sorts of issues with their intestinal tract.

One med that helped immensely for me, while they tried to get my system to calm down, was Bentyl. It slows the intestinal tract down, resulting in more absorbtion of the nutrients in the food consumed. However, it does have it's side effects, such as drowsiness and/or constipation, among others. Use of probiotics is probably the easiest thing to do, and most docs usually recommend them. The elimination diet is what I've attempted to do several times, but I've always gotten too impatient with it, and not gotten the full benefit from it. All possible allergens are removed from the diet for a period of time, then one item at a time is added back into the diet, and any reaction noted, adjustments made if necessary, and then another item added back in.

Doctor supervision is needed for these issues, and oftentimes, it's recommended that a nutritionist be involved. My insurance, while it's good, does not cover a nutritionist for anything, unless it involves a medical disease diagnosis, such as Crohn's or Ulcerative Colitis, but IBS (the diagnosis I got) is not covered, since it's not a "disease", per se, so they may have issues along those lines...

10-16-2012, 03:00 PM
Wow - interestingly, her younger brother has Asperger's....

Thanks for all the great info!

10-16-2012, 08:38 PM
There is something called "gastric dumping". Although it is most common in people who have had gastric bypass surgery it can happen to people without it. I know about it because it was mentioned to me before they decided my issues were autoimmune.

Here is a bit of information about Gastric Dumping (http://en.wikipedia.org/wiki/Gastric_dumping_syndrome)

Hope it helps

10-16-2012, 10:35 PM
my eldest daughter had symptoms like these and she had all the test first they thought she might have celiac because i have it. but she didnot eventually after ruling everything out they said irritable bowel syndrome. she was referred to a dietician who gave her a diet specific for irritable bowel things to eat and things to avoid. i also have a younger daughter who has aspergers and she has stomach problems. seeing a dietician may be the way to go. hope this helps

10-19-2012, 04:42 PM
Three of my girls have had GI issues.
The gastro thought that Meg might have Chrone's disease. She had a colonoscopy when she was 13. It turned out to be a kink in her colon and running the tube through it solved the problem. She also has lots of problems with endometriosis.

Kayla has had chronic problems - more like your friend's daughter. She's had chronic asthma, and the docs told me that the post-nasal drip from the asthma contributed to her GI issues. The asthma is better now that she lives in Co, but she still has GI issues, and so does her son. They have both been tested for celiac, but it was negative for both. She was finally told that it is IBS. She has found that when she eats right and avoids stress (which means avoiding the ex!), she feels better. I'm still wondering about the Celiac question, though.

Another daughter, Hillary, definitely has been diagnosed with Celiac and with Lactose intolerance. She went totally gluten and lactose-free and feels much better. She lost a lot of weight and was finally able to get pregnant, after seven years of trying.
She gave birth to Maya on Oct. 7, and they are both very healthy. She's been warned to treat Maya as probably gluten and lactose intolerant until she's old enough to be tested. Her 13 year old son also has a few symptoms that make us wonder, but he's not willing to change his diet - at least not yet.
I hope that your friend gets some answers.