Info on IBS/GI symptoms and tests?

[Sleepy In Seattle]

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....

[teresa]

Get a gastric emptying test and see if it is increased.  I had one of these 2 weeks ago and my results were "increased or too fast"  and am waiting to find out what to do about it from GI.  I also have vit D deficiency and phosphate deficiency (which is absorbed in the gut).  I also have loose stools- about 6 before noon and then it usually slows down for the rest of the day. 
 Also, I have had some people tell me that their celiac tests- biopsies and blood tests were negative, but there is also what is known as "gluten intolerance."  Which really means that if you completely take gluten out of your diet and see if your symptoms resolve.  Others have found that they are intolerant to caseine, which is in milk.  So, they do not have a milk allergy but an intolerance.  To figure this out you eliminate milk products for 2 weeks.  I would not suggest taking both out of the diet at the same time, but trying one at a time.
 IBS symptoms are usually diarrhea and symptoms right after eating- and running to the bathroom to get there in time, although there is also a constipation IBS.  People with IBS supposedly do not wake up in the middle of the night to have diarrhea.  If she is having diarrhea at night, it is most likely not IBS. 

[Kendo]

Hello - have your friend's daughter look into low stomach acid. GI docs did years of tests on me to try to diagnose my diarrhea and told me to take Immodium - 2 a day was fine but not 5-6! Turns out I inherited low stomach acid from my mom and adding betaine hydrochloride pills with each meal stopped the diarrhea and gave me so much more energy in only two days! My mom has pernicious anemia and no acid at all and is Vit B12 deficient. I seem to have a milder case but am also Vit D deficient.

Maybe digestive enzymes (for protein, fat and starch) might help too. My GI docs did nasty fecal fat collection studies, with and without digestive enzymes. My fecal fat was lower on enzymes but not dramatically so. But I had so much energy when taking the enzymes that I later looked into what I was missing. I now take the betaine with each meal and a fat digesting formula when eating greasy food (eat gluten free even though all those tests were negative and am much better in so many ways!)

Kendo

[Lesley_x]

I fell into a similar situation. I have had terrible GI problems all my life, requiring hospitalisation for NG feeding last year. I was so weak I would pass out in the shower.

I was tested and tested and only now is my gut showing inflammation and I am starting to get to the bottom of it. Clear scopes are not necessarily a clean bill of health, they have their limitations. Have they done any stool testing?

Take a 'diagnosis' of ibs with a pinch of salt and if you don't feel it's right, keep searching for answers.

The fact she is low on vit d worries me as this is seen in malabsorption.

There are certain giveaways that it's not ibs, nocturnal diarrhoea for instance (waking from sleep to defecate), bleeding, fever, weight loss.

I'm so sorry she is going through this, I know how much of a struggle it has been for me and I wish her well.

[Rachel F.]

I think the elimination diet is a good place to start. The foods that most people are allergic to are: dairy, wheat, nuts, soy, eggs, I think a couple others. I think maybe a consult with a good rheumatologist would not hurt since the gastrointestinal docs have run out of ideas. Does she have asthma? I like everyone's ideas. The main thing is- keep trying. We have all been down the road of tests with no results, but ultimately most of us find out what is wrong. Has she been tested for Lyme disease?

[Sleepy In Seattle]

Thank you!!!! No - no asthma. I don't think they tested her for Lymes - we don't really have it out here (yet), but I suppose it's worth at least asking.

Years ago when all this started, it began with a HORRIBLE stomach flu/intestinal virus that everybody had that year - OMG, we had it at our house too - I have never been so sick. Local hospitals were full to capacity, schools closed in some cases - it was AWFUL. But most of us came through it okay. The current theory is that the virus somehow damaged things in her system (she was just a little kid at the time) and things never recovered - but they don't know how or why. This was like 8-10 years ago, and her symptoms have slowly gotten worse and worse since then.

Personally, I really suspect autoimmune - probably set off by the virus, then maybe egged on by the hormones/changes of puberty, plus unacknowledged/untreated food allergies developing. But of course I see everything through that lens, since it's what I deal with too (not the gut issues, but the autoimmune stuff).

She's an amazing young woman - an athlete, straight-A student, and incredibly kind and patient. She's like another daughter to me - her mom has been my closest friend since the girls were about a year old. It's just unbearable to know she's suffering so much...and you can imagine how humiliating all the tests are, as well as dealing with the symptoms - especially as a teenager. 

Thank you all for your help. I had lunch with her mom last week and I passed on all of the info you guy gave me....and we'll keep trying.

[Joe S.]

New food allergies seem to be common with AI diseases. Mine were pork, and oranges. I also became allergic to to a common food additive and now have to have my meat washed before I cook it. Formaldehyde is occasionally used in bread products and that can also be a challenge.

Sorry I got distracted. Finding what to avoid can reduce the symptoms. (elimination diet) The doctors have some meds for IBS so a visit would be a good step. When I was in a pain clinic a man came in that could not eat. They started him on raw juice therapy. By the end of three weeks he was able to eat any thing he wanted. The doctors sent him to the pain clinic as a last resort with just a few days to live. It was an amazing transformation to see.