Treating IBS | Imamother

amother

Violet

Thu, Mar 09 2023, 6:59 am

A) you don’t have to call Dr. Dubinsky!
Did OP say where she is located?
OP, post where you are located and people will recommend GI s

B) I agree with all those who say you need a colonoscopy to rule out crohns. It presents in many different ways.
My IBD started with fatigue, weight loss, frequent painful diarrhea. I wasn’t bleeding at all, etc.
My calprotectin levels were very high so GI suspected IBD, but confirmed it with a colonoscopy.

I have friends and family with IBD who have it very under control BH, and I have others who keep tweaking treatments and are never 100%. Dr. Dubinsky is great, but she is not a miracle worker.

It’s a journey

amother

↑ OP ↓

Thu, Mar 09 2023, 7:27 am

amother Violet wrote:

Yes, we're in NYC, I mentioned it, but it can be easily overlooked in the post, I put it on top now.
Calprotectin levels can be seen in a stool test? Any specific name for this test or a general one is sufficient?

amother

↑ OP ↓

Thu, Mar 09 2023, 7:29 am

amother Junglegreen wrote:

Pardon my bluntness but your Dr. sounds like a fool. He should have referred you to a GI immediately. And Crohn's and other types of IBD can have a wide variation of presentation.

That was one of top pediatric GIs... DS must have been in 6th-7th grade then.
Saw another top pediatric GI afterwards during Covid (remotely), he replied on the previous endoscopy , blood and stool tests. Also didn't refer to colonoscopy

amother

↑ OP ↓

Thu, Mar 09 2023, 7:33 am

amother Poinsettia wrote:

No!! You can't diagnose or rule out Crohn's or UC based on symptoms alone! There is a wide spectrum of symptoms and different people present differently. As for location of the pain, Crohn's can be anywhere along the GI tract- from the mouth all the way to the rectum. Anywhere. This is why you MUST have a colonoscopy done (and an capsule endoscopy if the colonoscopy comes back clean). It is not ok to dismiss frequent pain as IBS unless you have literally done everything possible to rule out another diagnosis. (Also, I'm pretty sure the IBS has BS as part of its name for a reason because it's literally a cop-out diagnosis IMHO).

Much Hatzlacha! It is so hard to watch your child in pain Sad

Gosh, I feel like I failed my child Sad

he learned not to complain as much, so I thought it was more under control.
And yes, I totally agree with IBS being a cop out diagnosis.

amother

Blue ↓

Thu, Mar 09 2023, 7:33 am

camp123 wrote:

Just want to point out the blood test for celiac is only 85% accurate. 15% is those who get a negative result could have celiac

How do the other 15% get diagnosed then?

Op I'm in a similar situation with my dd. She has terrible stomach pain every single day starting about 2 years ago. I've been to the doctor with her countless times and the last time we went he said he is diagnosing her with ibs and thats it. When I said to him that sounds a bit like a cop out since it doesnt actually mean anything he claimed he has run every possible test and everything has come back clear.

I asked about sibo he said it can't be sibo and he wouldn't do a breath test because he didn't thInk it was. I wanted to do the gluten test again because the first time she did it he didn't mention that she had to be eating gluten for accurate results but again he said he won't because it doesn't sound like celiac. I wanted her to try antibiotics as a trial becuase when she took for strep one time she was pain free for 2 weeks. He refused.

She hasn't had any colonoscpy or endoscopy but again he wont refer her because he says her symptoms don't match chrohns.

I asked the doctor so now what, are you telling me she just has to live with pain. His answer was to tell dd to do more excersise and try not to worry.

She has been following the fodmap diet for almost a year, I read about it online. It helps her a bit but its not nearly a cure. She misses so much school and is always complaining she is hungry but is scared to eat.

Reading this over it sounds crazy. I literally don't know where to turn next.

amother

↑ Junglegreen ↓

Thu, Mar 09 2023, 8:24 am

amother OP wrote:

My son's blood and stool tests were always fine. He was diagnosed with a capsule endoscopy that travels through the entire digestive tract. An ulcer was discovered at the ileum, which is between the small and large intestine. He could not have been diagnosed through blood or stool tests and a colonoscopy can't make it past the beginning of the small intestine. Hopefully your child does not have IBD but the tests he has gotten so far are insufficient no matter what the Dr's have told you. My son's case alone is proof enough of that.

amother

↑ OP ↓

Thu, Mar 09 2023, 8:40 am

amother Blue wrote:

Oh gosh, I so understand you. There's so much useful info in this thread about tests. Time for a new Dr for both of our kids.
Are you in NYC? Is your Dr a GI? If so, would love to know who NOT to go to

amother

↑ OP ↓

Thu, Mar 09 2023, 8:42 am

amother Junglegreen wrote:

Your son's story completely opened my eyes. We'll be doing all these tests (not sure how DS will do that capsule endoscopy as he doesn't swallow pills, oy!). Just need to find a Dr who's knowledgeable and will be willing to get to the bottom of it!

amother

↑ Junglegreen

Thu, Mar 09 2023, 8:53 am

amother Violet wrote:

Dr. Dubinsky is not a miracle worker, agreed. If she was, my son would need no medication and be healed forever. Only HKBH can do that. But Dr. Dubinsky conducted many of the clinical trials and medication studies on IBD herself. Most importantly she is humble. She will say she does not know, lets find out. And even if she really does know, she will do her best to explore alternatives up until the point she feels it will be detrimental to the patient. That takes big shoulders and she has them. It would have been easy to just put my son on medication and be done with it. She likely knew that would be the end result. But she took her time while safely monitoring my son before making her diagnosis. The GI he saw previously stamped him with Crohn's without doing a colonoscopy or capsule endoscopy even though his blood work and calprotectin were perfect and he prescribed medication that was not even appropriate and would not have worked in any case.

amother

↑ Poinsettia ↓

Thu, Mar 09 2023, 10:50 am

If you don't feel like your child's doctor is acknowledging your concerns it's time to switch.

In our case, my child had all the classic symptoms of Crohn's including an extremely elevated calprotectin level (over 2000) but because her biopsies didn't match up the original doctor refused to diagnose as such. It took us switching to a different practice to get her a diagnosis (and start treatment).

I'm sharing this because even in what should have been a (mostly) clear diagnosis we had to strongly advocate for our child. In a situation where it's not clear, you are going to have to fight a lot harder for your kid. And it might not be IBD. But it's important to educate yourself so that you can ask the right questions and to see doctors who are willing to hear what you and your child have to say.

amother

↑ Blue

Thu, Mar 09 2023, 12:24 pm

amother OP wrote:

Haha no you definitely don't want to go to our doctor! I don't live in America and the system here is very different.

After reading all these posts and rereading mine, my mama bear has roared up again and I decided I'm calling him again tomorrow and insist on further testing. The thing is I need to know exactly what to ask for otherwise he will just fob me off again and say he's done all the tests. If anyone can help me out I'd be so appreciative:

1. Sibo test - is that a breath test? Last time doc told me he knows its not sibo because the blood rest didn't show anything

2. Another celiac test, this time with dd back on gluten. How long does she need to be eating gluten for?

3. Same idea for dairy / lactose. Again anyone knows how long she needs to be eating for results to be accurate?

4. Refer to GI. Maybe this should be no.1

5. Refer for colonoscopy and endoscopy

Anything else to add here?

Re: stool tests. What does that test for, and what should I be looking at with the results? She did one and all the doctor told me was that everything is fine.

Op I'm sorry if I hijacked your thread. I'll start a new thread if you want

amother

Yarrow ↓

Thu, Mar 09 2023, 4:47 pm

We did a sibo test and found sibo was part of the equation for our teen daughter with daily stomach pain. Pediatrician juts had said low grade ibs. Then integrative nutritionist recommended herbs for it that helped a lot. We used Rita singer and Tamar Feldman- both very excellent and very experienced and they order extensive stool or breather tests based on what they suspect. Both do both in person and/ or virtual. And make recommendations not just for diet but for herbs and supplements and will work alongside gastronomy recommendations or recommend integrative ones as well

amother

↑ OP ↓

Thu, Mar 09 2023, 4:47 pm

amother Blue wrote:

No, no, these are all very helpful! I needed to write a list for myself, too!
I'd say, go to the GI and do all the testing there? Not sure how it works in your country

amother

↑ Springgreen ↓

Thu, Mar 09 2023, 4:49 pm

amother Blue wrote:

Just want to point out that lots of people are dairy intolerant not because of lactose but because of casein and there isn't a way to test for that other than elimination. Personally I think anyone with any kind of gi troubles should be off gluten and [conventional] dairy.

amother

↑ OP ↓

Thu, Mar 09 2023, 5:06 pm

amother Yarrow wrote:

These two women are integrative nutritionists?
Here's what I don't get - why can't regular Dr do the same tests as these integrative ones?? If a lab does it, it's available