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GI appt for my non-IBD kid

So, I've made an appt for C's older sister with an adult GI C's ped GI recommended.

She has always been the one with weird bathroom habits but has always explained it away.

She called last week from college and admitted that she feels like she has to throw up after eating not nauseated but like something is stuck in her throat. She also said that she has had to go to the bathroom directly after every meal and it has been D for the last few months. She says the urgency is really strong.

Since she normally won't tell me health issue symptoms in an effort to avoid the doctor I took this pretty seriously. I asked did she want me to find a GI and she said yes that she thought it needed to be checked.

I decided on a GI over GP not because I necessarily think it is CD but I don't want to go through fob offs of it's viral, get better sleep, college diet blah blah blah with no testing done.

C's SBFT is scheduled for next Thursday and J's GI appt is Aug. 6th. I'm thinking gerd possibly h. Pylori infection with J but could just be my bubble. I do feel better safe than sorry with the GI appt, you all agree?
 
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Clash,

totally agree with you on this. Good to get it checked right away. All your suspicions should be checked. (we mothers have our way of making sure things happen)

We too have been taking our non-IBD daughter to a GI and a naturalpath. Nothing found yet but she thinks she is helping herself more. We had her checked for Gerd, but it came out negative, neg for h.pylori and without giving all the info, she is drinking a glass of lemon juice with water in the morning to help balance out her PH. This seems so simple, but she has suffered with "gerd" like symptoms, major burping and extreme fatigue for over two years. It seems she is actually starting to feel better. With PH balance off, it leads to so many other symptoms. (just another idea to add to your list :) )

Hope she gets better soon. How is your son doing?
 
Clash,
I 100% agree that the GI is the right way to go. I will keep my fingers crossed that it is nothing and can be taken care of easily. I am afraid I have been keeping myself in a bubble about one of Caitlyn's siblings as well. She has been having stomach issues that we kept attributing to dairy but now we are not sure.
 
Thanks guys. I do waffle back and forth, she doesn't easily report symptoms which made me take notice but I also don't want to increase her avoidance of doctors with unnecessary tests.

I'm hoping for blood work to be done the first visit. J has been anemic in the past but I didn't realize as she brought it up months later. She usually goes to the GP alone since starting college and the anemia result was during one of those visits. She said the doc chalked it up to her cycle but she hadn't started yet and was 3 weeks out from last menses.

Kimmidwife, I hope it is something simple for your daughter as well and easily resolved.
 

Tesscorm

Moderator
Staff member
There's no harm in checking. Especially as you said she doesn't usually mention symptoms - that would get me wondering/worrying too. And agree with heading to GI - given her family history, think it makes sense to move to more specific testing straight away. :ghug:
 
Several years ago I mentioned during a well check for my younger son he was having a lot of tummy aches the GP sent me straight to the GI said it may be nothing but with his brother and dad it would be best to rule it out. Turned out it was dairy but it relieved all of our minds so yes, GI is best.
 
Thanks, I'm hoping this GI does fecal calprotectin, I'm gonna push for that. I really wish she could see C's Ped GI because I'm so comfortable with him and I know he would take it seriously but not overboard.
 
I hope it's a simple solution for your daughter. You are taking the right steps to get it checked out. The fecal calprotectin sounds like a good idea.
 

my little penguin

Moderator
Staff member
Good luck
Hope things move quickly
We went through this with my non Ibd kiddo
- plenty of GI issues but no crohn's.
Apparently Gi issues run in the family .
;)
 

crohnsinct

Well-known member
Absolutely agree! Same here with younger sibling with lots of weird GI things. I don't necessarily think CD but it is something. Can't seem to get ped or O's GI to pay attention. Glad you were able to just go straight to the source. I hope it is nothing and an easy fix.
 
I hope everything goes well and that this GI is stellar. I agree a fecal calprotectin would be a good idea, although some GI's don't do them.
 
I also think you are doing the right thing. With one in the family and GI symptoms, it just make sense to see a GI first. Now that I have one child with Crohn's, I would not hesitate to take the other 2 to a GI if they had any GI symptoms. Hoping it turns out to be something easily corrected.
 
Farmwife, I don't know that she thinks it is IBD just that her symptoms had been going on long enough she needed them seen about. I don't know that she is overly worried she doesn't seem so. Her symptoms don't really point me to IBD either but like I said better safe than sorry.

She most times refuses meds of any sort, doesn't take Tylenol, ibuprofen or the like unless you nag and nag. So I would guess that is what is probably foremost in her mind that it might be something that will require meds to clear up.
 
Don't forget to test for Celiac. You never know and it's an easy enough test if you're running labs anyway. Good luck!
 
Edit: I responded thinking this was C's thread haha.

I will mention Celiac, didn't even think of that.
 
Just make sure she doesn't change anything in her diet before testing. She needs to be eating gluten at the time of the test.
 

DustyKat

Super Moderator
Agree with all the above Clash. :ghug:

To me its a no brainer when you have one child with IBD and another has gastrointestinal symptoms, head to the GI.

Have bloods already been done? Did I miss that?
If not maybe have the GP run all the baseline bloods and do a poop test to rule out bugs and parasites before you meet with the GI. At least that way he/she has something clinical to mull over as well. It also means the GI can then concentrate on ordering more specific tests and it may also be easier for you to push for what you want. :)

Good luck and keeping everything crossed that it is nothing serious!

Dusty. xxx
 
I would love to have bloods done before, Dusty but J is at college and uses an after hours urgency clinic there and our GP here would probably only run a CBC if I could get her home before the GI appt. The GI appt is next week.
 

Tesscorm

Moderator
Staff member
I just don't understand why we can't order our own labs!! :lol: Would make life so much more efficient! :lol:
 
I know, had I thought of it earlier I would've tried to get her home before now and see if the GP would run some basic things. Although, he is pliable when it comes to C(since CD is not at all in his wheelhouse), I'm not sure that he wouldn't want to take the wait and see with J as that is his usual demeanor.

I will be going with J for sure. I don't think she'll fuss much since it is a new doc. She takes her self to the GP and Gyn but she has included me from the start on this trip.

Oh if I could order my own labs for them!
 

DustyKat

Super Moderator
I would love to have bloods done before, Dusty but J is at college and uses an after hours urgency clinic there and our GP here would probably only run a CBC if I could get her home before the GI appt. The GI appt is next week.
Bugger. :(

Ya’ll write your own don’t you?? The doc just transcribes for you?? :lol:
 
Mehita, you know, wheelhouse- area of expertise.

Dragon, I will mention that as well.

She recently mentioned a few mouth ulcers and yesterday call to ask about hemrroids as she thinks she may have one. She has been packing to move apartments so I guess it could be possible but, of course, I can't help but worry. The mouth ulcers she said have come and gone off and on for a couple of years so I'm not sure that there is a relation. She only gets one or two at a time. I still worry as C had a mouthful before dx and has been a sure sign when he has had symptomatic flares.

I'm sure you all know that all these symptoms have me really worried but I am trying to remain optimistic that all of these things can be explained away. The "hemorrhoid" is the most bothersome but I'm just hoping the strain of packing, loading, lifting boxes is the culprit. Before it came to me that she had been doing all of this in the past week I was even more worried about it but I'm staying in the bubble for now.
 
I haven't had a hemorrhoid before so would the following be normal? The night before last she had pain with her bm and afterward. She said there was a small lump at her rectum towards her spine and not the front or sides. She had two bowel movements yesterday morning and it was very painful during and afterwards for some time and the lump was still there. She had 3 or 4 more bowel movements later in the day with no pain and the lump was gone this morning. Does that sound like a hemorrhoid?

We are at the hotel tonight, C's SBFT is in the morning.
 

my little penguin

Moderator
Staff member
Tell her to get a mirror
Hemmorroids are tear drop shaped
But rectal prolapse is more rose shaped and will retract on its own after a BM.
The prolapse really burns and can cause streaks of blood if the tissue is exposed to air.
If she is trying to have a BM that is when she may see it .
The condition is more common in adult women .
Or it could be both .
Let the GI know .
 

Tesscorm

Moderator
Staff member
Oh Clash, I'm sorry you have this worry. :hug: I hope you get a quick answer from the GI, and one that will put your concern at ease!! I don't know much about this but a friend has always had hemorrhoid and rectal prolapse 'flares'. She's had lots of tests done, especially as her daughter has crohns, but all tests have shown no crohns. She simply has hemorrhoid/prolapse issues. Not to minimize those problems at all but, just trying to remind you that it may not be crohns - it's so easy for the mind to run away and focus on the biggest worry. :ghug:

Thinking of you... :ghug:
 

Catherine

Moderator
I have haemorrhoid/prolapse issues and yes they are very painfully. My concern would be her age and the reason for them.
 
Thanks so much guys! I'll discuss all of this with her.

I am at the hospital with C now doing the SBFT.
 
Today is the day. We are on the way to pick up J from her college apartment and head to the GI.

Now how to get a 21 year old who has an aversion to doctors not to downplay her issues...hmmm.
 
So this GI just validates my opinion that I would prefer C to stay forever with a ped. GI.

The GI was nice enough. I explained about J's brother having CD and that although I didn't necessarily think J had IBD I did want her symptoms taking seriously.

She told about the chronic D
past blood tests showing anemia(not while on her period)
mouth ulcers
lump that came up on her rectum last week that made for painful bms
3-5 bms some days
always feeling full before finishing a meal
having to have a bm right after every meal
feeling as if her meal is stuck and that she could vomit it back up if she just leaned over the toilet
although she use to live to eat spicy food she now avoids it because it causes repetitive D and is nauseating and makes her feel as if she will vomit(this child LOVED spicy food)
feels as if she is fatigued more than usual

First thing he said is there are no alarms for Crohn's plus she hasn't been losing weight or running fevers, so not crohns.

He px'ed nexium(she has already been taking it with no change)
Gave her dexilant samples mentioned bentyl

Ordered labs, CBC, metabolic panel, amylase, h. Pylori blood test, iron and tibc, and SED rate....no CRP.

I requested a fecal calprotectin stool test, he asked if that was something used in ped care because in adult care it is not used! I told him it tests for inflammation in the bowels and although can determine CD it can offer insight as to whether more invasive testing is needed. I had to explain that under 50 was normal and a result that indicated inflammation could be due to NSAID use, bowel cancer, IBD or an infection etc. He dragged on it but I insisted. He then said if it is high it could be a false positive and not a real indicator that there was a problem! Ughh. I said listen my son has had CD for over two years, a severe case that is at the point of surgery. He has never had grossly abnormal blood work even though he has never reached full remission. A full flare for him carries a level of 1700 at that time his blood work was normal. This test isn't a diagnostic tool but it is noninvasive and can give a bit of insight.

We are supposed to call with a follow-up if her symptoms don't resolve. Oh and for the chronic D eat more fiber or take metamucil because it is probably diet related.

J is 21, and on the way home she asked me and the hubby if it was normal to have excessive vomiting after drinking alcohol. She said if her and her friends go out and she has 3 drinks then she will vomit up to 6 or 7 times the following day til she is only vomiting bile, then dry heaving!!! Ummm....no! Hmmm I should've mentioned that to the doc.....ya think???
 
I second about wishing we could stay with peds GI forever. Having chronic D is not normal! I am glad you convinced him on the Fecal Calp. Hopefully it will at least give you some answers.
 

Tesscorm

Moderator
Staff member
Terrible that he seemed to shrug it off!! But, at least you've got some basic tests going. Hopefully the results will lead to some answers. Any possibility she will keep a log of symptoms? Might help push him into further testing if u think it's necessary but he's hesitant.
 

Maya142

Moderator
Staff member
Ugh sounds so frustrating. I hope C can stay with his ped GI forever! Could C's ped GI recommend a good adult GI for J? He must know ones that deal with IBD.

Hope you get some answers with the blood work and FC.
 
This was the doc that C's GI recommended. C's GI and I have discussed how care changes from ped to adult, long before I asked for this reference. There were other tests he ordered as well about 10 I think but I has the lab order with her at college. So still a good start but it just threw me when he said, " Doesnt scream Crohn's since no weight loss or fevers" and " Is fecal calprotectin tests something used in ped GI because we don't use it in adults."

We shall see how it goes and does anyone know what dexilant is?
 

Maya142

Moderator
Staff member
I thought Dexilant was a PPI (like Prevacid or Prilosec) but isn't that what Nexium is?
 
Yeah I thought so too and he said to take the dexilant til we got the nexium filled. They called in the nexium so we picked it up before dropping J back at college. I don't even know what happened with the bentyl he mentioned because he didn't call it in. Hmm
 
Your experience makes me wish my kid stays a kid forever. I have caught myself thinking "if she was older she could they other medications". Think I'll stop those thoughts right now. This can't be easy on all of you. Big hugs.
 
I think new docs can be difficult, especially when you have a doc you get along with so well. It's like the bar has been set and you compare others to. His statements about fever and weight loss really bother me. J was appalled that I kept explaining things to him. She kept saying he's been to med school, mom! But when I explained the visit to C he said I'm never leaving my ped GI! Ha!

At least we got all those tests ordered. I don't think J has CD but I'll push for any answers as long as symptoms present. I do think the GI felt I thought it was CD even though I explained I wasnt looking for CD, I just wanted to have things investigated since her brother has IBD.
 

Tesscorm

Moderator
Staff member
I think as soon as you say 'anotherfamily member has crohns', many doctors immediately assume you're no longer objective. Very frustrating!! :ymad: And then, I always worry about irritating them when I start 'explaining' things to them or suggesting things they haven't mentioned! :yfaint: You're damned if you do and if you don't! :(

I'm sure we all do the same... try to be as nice as possible while pushing for what we think is necessary. :hug: It's all you can do for now... get as many answers as you can from these tests and continue to follow-up, pushing for more tests as necessary and see how it goes. Not sure how much of a difference it makes but I try to keep as much as possible in writing (ie emails). Not sure about all GIs but with S's ped GI, all my emails were in the GI's file, so while phone calls questioning symptoms may be forgotten over time, a look at a file with multiple emails asking about symptoms is a bit harder to shrug off and more clearly illustrates a 'trend'.

:ghug:
 
How frustrating. After all I have read on here it still surprises me that some GI's still seem determined that it's not Crohns if you don't lose weight or have loose stool. Glad you managed to get the FCP ordered. I am also dreading changing to an adult GI.
 
Thanks, Catherine.

Tesscorm, I think you're right with how they may view your thought process if you tell them you have a kid with CD already. Although, when I told C's GI about J's symptoms he said CD would be a concern to him even though their symptoms weren't the same and that CD is so individual. I asked him if I should push for invasive tests(worried since C's lab work is always normal) and he said I would push until they found something to explain her symptoms be it CD or not. And although he feels some people go looking for answers and discover it is ibs he feel that is a dx of exclusion and other tests should be exhausted if symptoms call for them.
 

my little penguin

Moderator
Staff member
Big hugs
At least we went through this with my non Ibd kiddo - it was with the same ped Gi DS has so one appt and full scope/bloodwork done in less than a week due to DS's history .

Two years later still don't know the true issue but at the Gi is still working towards a why ...
Vs it's just Ibs go away kwim
 

Tesscorm

Moderator
Staff member
For now, you'll just have to give him the benefit of the doubt... he did run bloodwork and agreed to FC. While he didn't run CRP, he did run sed rate and that will indicate inflammation as well. If anything, as sed rate is a longer term inflammation indicator, it does imply that any inflammation has been there for a while and it's not just a recent bug she's picked up. (IDK, does this logic makes sense??? :blush:) Also IBS would not cause inflammation so elevated levels in either ESR or CRP would give reason for further testing...

And, even with S's GP recently (and S's brown phlegm), I really didn't believe that the phlegm would disappear with just a nasal spray... but it did. (Okay, I admit, a part of me still saying 'wait, that was way too simple, I'm not totally convinced yet, let's see what happens in the next few weeks'... :lol:) So, just saying while you absolutely have to rule out anything more serious, it might still be a simpler answer.

:ghug:
 
I agree Tees, when J told me about her symptoms initially I thought h. Pylori but I think my experience is just colored by the fact I had h. Pylori and a lot of her symptoms remind me of the ones I had. I didn't know there was a blood test for h pylori though? The GI gave me a breath test which indicated negative but when he did a biopsy during endoscopy he said it was positive and put me on a treatment regimen for a month and the symptoms went away.
 
Ok so J called with a run down of her last few days. I just wanted some opinions:

Before and after C was dxed with CD he never had problems with any foods other than he would definitelyhave a bm after pizza. Mostly he ate stewed or stir fry veggies with no issues. He has always avoided spicy food(as have I) and still does as he says it makes his tummy feel icky.

J has been eating stir fry veggies in olive all with chicken breast, salads and raw veggies for some time. She used to eat spicy food and loves it but says now it doesn't agree with her. Also she has started cutting out raw veg/salad because it causes upset and D. She hadn't had a bm for 3 days so decided to get a personal pizza last night(she is usually a big eater) but 1.5 pieces made her feel full and gross but did allow her to produce a bm.

I'm wondering if food is playing a role, I mean general she waited with 1/2 teaspoon of EDVOO and includes zucchini, broccoli, spinach, sometimes onions and water chestnuts with organic fed free range chicken breast. Could this be causing the D? She said for three months now her bms have been a 5 to 6 on Bristol scale and she vacillates between 4-5 bms a day(all D with no pain) to a couple days with no bms but a lot of bloating.

Could diet do this? How about h. Pylori can it cause D? When I had it my GI said yes and the treatment did correct it but this GI J went to see said no that it was probably her diet as she is a college student and their diets are unhealthy(hers hasn't been) so fiber would fix her up.

She is starting the metamucil today, how long should we give it to work?
 

Tesscorm

Moderator
Staff member
My husband does not have crohns, at least as far as we know. ;) But, accepting that there is a real IBS, he absolutely does have it. He has to watch his food always. For the most part, he can eat anything, however, he makes sure he maintains an adequate fibre intake (ie bran muffins, etc.), limits spicy foods - and, while he can eat spicy foods, it's 'specific' spices that bother him - ie can't eat chili pepper flakes, can't eat a specific Portuguese chicken dish that uses a certain spicy sauce but he can eat those bottled hot veggies in oil and can eat hot peppers on pizza, too much fried foods (french fries one day are okay but not if he eats fried food again the next day), tomatos are sometimes okay, sometimes they're too acidy and he'll pay for it for a day or two. So, in the end, he tries to keep a balance of good foods and limits the 'bad'.

He's found that even combinations of his 'bad' foods will effect him, ie french fries one day, next day no fried foods but tomato sauce will cause a problem. It's almost as if his system needs time to recover from the first instance of 'bad' and adding another 'bad' too soon after, is just too much for him.

When this happens, he has stomach aches, lots of acid and reflux, d, gas, nausea... And, while it may only last a day, more often than not, once he gets the side effects, they'll last a few days until he's back to normal. He also takes nexium every day and immediately notices symptoms if he forgets one day.

So, in his case, diet does play a big part in his symptoms.
 

Lady Organic

Moderator
Staff member
yeah some doctors are very proactive, others not. My GI is very proactive so that has nothing to do with ped or adult GI I think. Its a question of personality. Anytime I have something unusual in my body, my GI takes action or refers me to the proper speciality for further investigation. I never have to argue with him and he takes seriously everything I mention. The previous GI I had, had more the tendency to say, ''Oh no, dont worry about that...'' I've never lost weight or had fever with crohns eventhough I was litterraly throwing my intestine away in the toilet. Blood test showed disease activity only when disease is severe in my case. if you feel this GI is minimizing your Daughter symptoms, and if all test come back normal and she sends you home, do not hesitate to seek a second opinion.

I am thinking the bump in your dauther's rectum could be small internal hemmorhoids due to D. WE've pm and I think I discussed the fallowing matter with you recently. My GP thought I had a rectal abscess. When returning from his vacation my GI ordered a MRI and then performed rectoscopy and there are no signs of abscess fortunately. My GI thought my hemmorhoids on camera view were a bit bigger than average so I am treating that right now with intra-rectal suppositaries. i do not have D, but its well-known D can cause hemmorroids to swell and feel ''bumpy'' in the rectum and feel uncomfortable during BM.

did the doctor say anything about the mouth ulcers? Does she have a lot?

you are questionning about the possibility of diet influencing your daughter,s symptoms. in the meantime I'd encourage your daughter to keep a food diary and try an elimination diet. If its a case of IBS, some change in food habits can be very salutary. Food intolerance or sensitivity can come at anytime in life. I also have a friend who has gastro-eosophasian reflux and thats another condition very common in people. Its a mechanical problem, not a disease, a little door at the bottom of the oesophagus that can get weaker in some people and whenever they eat a big load, vommiting fallows. Reducing the typical 3 big meal/food portions a day and managing food intake throughout the day instead with small portion is one of the keys to resolve that issue.
 
Thanks Tesscorm. She has been keeping a food diary since about three weeks after all this started. Actually earlier than that but it was more geared toward fitness and not tracking symptoms. No patterns have appearred yet but I'm assuming it is too early. She has no pain in her tummy but at times a hard spot on the right side. Bowel movements were only painful when that lump appeared and it apparently hasn't returned.

Lady Organic, your experience with adult GIs has differed greatly from ours. Both nieces have CD and are adults and the GIs they have experienced is what initially made me wary. The GI I saw was decent but does subscribe to the wait and see approach but is nice enough. The GI J, my adult daughter is seeing, is nice as well but made some very general statements in regards to CD.

I'm thinking maybe h pylori but only due to her symptoms being similar to mine. Because she eats small meals throughout the day as is(for fitness purposes) and even then can't finish for feeling grossly full I wonder if the gastro-eosophasian reflux would apply?

These are all great ideas I need to research, thank you.

She doesn't get as many as my son with CD, just several at a time.
 

Maya142

Moderator
Staff member
M has GERD and also feels very full after eating even a small meal.

We have had a similar experience with adult rheumatology versus pediatric rheumatology. The "let's wait and see" drives me crazy because while we were waiting and seeing, my older daughter's joints got more and more damaged. We have since switched to a more proactive adult rheumatologist. I think there are good adult doctors (GIs and rheumatologists) out there but they have been much harder to find.

In contrast, all the pediatric specialists we have seen have been great (well, except one pediatric rheumatologist). To me, it seems like pediatric doctors just care a lot more about their patients.
 
Maya142, I keep asking J if she feels like she has heartburn and she even called indigestion once. But once I explained how that felt or what exactly it was she said no that is not it or how it feels but I remember several months ago she had this cough that just would not let up, we went to the GP for it. He gave cough meds that she said don't help and eventually it resolved, maybe it was acid reflux/gerd?
 

Maya142

Moderator
Staff member
M has had the feeling of something stuck in her throat - we just figured it was reflux. She does know what heart burn feels like and she definitely has had that. She's had a cough too. In her case a PPI (she takes Prevacid) made a big difference. She's also had gastritis and she said that feels more like pain (upper abdominal pain).

Not really sure though - seems like J may have multiple things going on? Have they tested her for lactose intolerance? Can cause diarrhea and nausea (M is lactose intolerant too).
 
J has been taking nexium every morning, the GI gave her samples of dexilant and a px for nexium. She was taking a bottle I keep filled for C. She stopped nexium, started the dexilant and will switch back to nexium when done with samples. She has had no change in symptoms from taking nexium.
 

Catherine

Moderator
I have a dx of IBS. My testing clear except for chronic Gastritis.

Before changing diet has she had caelic screen? The two most common food triggers are lactose and gluten.

The reason the FODMAP works for people with IBS is that it cut out most of the common triggers.

I wouldn't do to many diet changes to the current testing is back because if this testing shows a reason for scopies and foods like gluten has been cut out that would it bad.
 

Lady Organic

Moderator
Staff member
My friend doesnt experiment heartburns or bile vomitting, but after a large meal and drink, she can feel abdominal discomfort, nauseous and regurgitation. I think the symptoms can vary in people. But I dont know much about this condition...

Does your daughter have ongoing ulcers in her mouth? what did the GI say about those?
 
She isn't lactose intolerant, she was tested for that back in 11th grade, the doc also took her off gluten for 6 weeks(the longest 6 weeks of my life) but there was no difference. At the time though she was dealing with extreme fatigue and these weird fevers. She tested negative for mono twice during that time. We were just before sending her to an allergist and GI when things improved(3 months total). The GP was convinced it was mono but she never tested positive. Her bowel habits were I guess a bit odd then but not on the radar and fatigue and mouth ulcers were the only symptoms common between then and now.

She has mouth ulcers on and off usually several at a time, the GI ordered her b12 tested because he felt that was causing the mouth ulcers.
 
Catherine, I have a dx of IBS as well dx two years ago. When I was young I had stomach pain that landed me in the hospital, the only test they did then was an upper GI, where you have to swallow the bubbly stuff. As an adult, I've had ct scan, SBFT, two colonoscopies, two endoscopies and all has been normal. So I got the IBD dx.

It plagued me for some time but then when I got the postural orthostatic tachycardia dx the GI felt I was probably dealing with a damaged vagus nerve that was effecting my autonomic nervous system through digestion and hr. The meds I'm on now have really helped both!
 

crohnsinct

Well-known member
Hi there...just taking a break from a summit I am attending and wouldn't you know the Celiac/Gluten expert I heard speak said that you should come off both Gluten AND Dairy when experimenting to see if there is a gluten sensitivity (actually a diagnosis for it now Non Celiac Gluten Sensitivity or Gluten Disorder). The reason for this is for many (up to 50% of the people) even if you come off gluten but don't come off the dairy your body may still think you are eating gluten. For this reason they suggest coming off both. He also mentioned that soy sensitivity is now creeping right up there with gluten and dairy. Went on to say that you can develop symptoms later in life. He said there is a cycle of "tears in the cheesecloth" that repair then tear again then repair and tear until one day they can't repair anymore.

I am right there with you with the "let's wait until she actually has something" model of modern medicine.

Most of the docs speaking at this summit are Functional Medicine docs. A lot are also md's. They are training to look at everything and try to detect problems before they occur. You might want to check and see if there is a certified functional medicine doc in your area. Unfortunately, most don't take insurance, are out of network and charge a bundle. I have my husband and two daughters going to one and while we haven't had our first consult I am blown away at the 10 pages of questions (ha and the bill!) they are asking and the labs they are drawing....heavy metals blood test, every vitamin, mineral etc known to man and a stool test...and this is before they even walk in the door! oh yeah and they are testing for h. pylori on my younger one...and this just based on a brief description.

I don't think medical practice will ever move to all functional medicine and I think there is a place for both types and a time for both types but since you are at the investigative stage and I know how that is maybe you will get faster/better answers from a functional medicine doc.

Poor J. I know she hates to be slowed down with this and has no time for the suffering:(
 

Catherine

Moderator
Lactose intolerance

Lactose intolerance is largely genetically determined. Some causes include:
Congenital – this is the main cause, where your genetic make up causes you to have less lactase than usual.
Gastroenteritis – this can strip the intestines of lactase for a few weeks.
Parasitic infection – this can temporarily reduce lactase levels.
Iron deficiency – lack of iron in the diet can interfere with lactose digestion and absorption.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Lactose_intolerance
 
Hopefully, regardless of the test results if she is still having symptoms then we will push for morebtets. If so I'll request a repeat of lactose and gluten. J never drinks milk, not since really young doesn't like the idea of it. But she does eat cheese, frozen yogurt and occasionally milk shakes.

I didn't think to ask for parasite testing beyond h pylori. I should ask that to be investigated as well if symptoms persist.

Thank you all for the support and suggestions! They are so very helpful!

Does it take iron and tibc longer to come back than the regular CBC and all? It should all post on the portal by next week right? Except maybe FCP.
 

my little penguin

Moderator
Staff member
All of DS blood work when done at the hospital outpatient lab is done and in the portal within 2 hours tops including Tibc and iron studies only vitamin d takes a day or two longer .
Good luck hope you get to the bottom
Also realize a Rheumo might be a good next step since mild gi inflammation can be cause by Rheumo disorders ( including mouth ulcers etc..)
Plus doesn't C see an adult Rheumo ???
 
C does but we are thinking of changing. The rheumatologist is great but the day before his last appt is when I had the severe toothache so I had to cancel his appt. To reschedule he'd have to wait until October and she wouldn't refill his mtx until then, he would've went months without it. My only option was to call everyday and hope somebody cancelled. I couldn't rely on that to get his next px. So I called his Ped GI explained the situation (he'd put him on mtx originally justboral form) and he px'ed the script and set him up for blood work.

I called the rheumatologist office told them the deal and they said I should've talked that over with the rheumatologist. I had told the rheumatologist nurse that was what I was going to do before I did it but she had said I had to talk to rheumy as well. So I told them I would've been glad to explain it to the doc had I been able to talk to her.

Oh and the tooth ache ended in two root canals! Ouch!


Oh and J's blood work and FCP were done at an off site labcorp facility. I wonder if that will delay things?
 

my little penguin

Moderator
Staff member
Unfortunately
If we were to cancel a appt - with any specialist it is pretty much the same .
Same with adult docs
You are put in a cue to wait months for the next appt since we would be canceling.
If the doc cancels they rework everything or if he is sick they squeeze in that day if needed.
Never ever cancel - we always find someone to take DS -even if its just DH with a list if questions .
 
No choice but to cancel as my tooth pain was so bad I ended up at ER then emergency dental appt the day of C's rheumatologist appt. My parents can't drive in large cities and hubby used up all vacay days between C and his hospital stay and my cardiologist testing and hospital stays. Because C is a minor a parent or legal guardian must be present.

Sometimes it is unavoidable. My problem isn't with the long wait but with the fact the px couldn't be refilled without the appt as C is still required to go for monthly blood monitoring(six weeks now) at rheumy office lab.I switched those labs over to GI at his in office lab and have them sent to rheumy.

What if C's px had been a biologic and a 3 month wait for appointment having to be cancelled so no biologic til appt caused the patient to create antibodies? I have no problem waiting for the appt since I had to cancel but I've never had a doc GI or other wise that refused to refill the px even though they still required the patient to come to their office for lab work which consisting of keeping up with how the med was effecting their blood.

We've once cancelled a GI appt for honors day and the GI nurse rescheduled us for the end of the day two days later.
 

my little penguin

Moderator
Staff member
The best thing is for your DH to file for FMLA now due to C condition .
Then any time a few hours to a few days can be used every twelve months .
This way if you get sick for whatever reason DH can easily go.
The forms are simple just takes a few weeks to process .
This gives up to tweleve weeks off or the amount set by your Gi .
It does not need to be taken all at once and can be taken by the hour.
No doc excuse needed just lots of paperwork in the beginning
Any place with more than 50 employees that has been there for at least a year is eligible in the US is federal law.


http://www.healthline.com/health/crohns-disease/americans-with-disabilities-act
 

Maya142

Moderator
Staff member
I think a wait that long is ridiculous - when we have canceled with M's rheumatologist, she squeezes us in within a week or two.

It is different with a doctor you've seen only a couple times, but having you call every single day is a bit weird too. We're always put on a wait list when we cancel and usually get a call pretty quickly. The prescription thing is totally ridiculous. What if you weren't seeing a GI and couldn't get that refilled?

It might be worth trying to find a pedi rheumatologist for C, because technically he has JSpA which is a bit different from AS/SpA.
 
MLP, thanks for the info on FMLA. We looked into it early on but Hubby is the only income for our family and with normal expenses, C's medical expense, my new dx and med expenses as well as my older daughters college expenses it is not feasible for him to take days without pay, in fact he is trying to add paid hours(overtime) not take them away.

We are lucky in that his company will give him the day of C's surgery with pay if it is decided that C is having surgery.

Maya142, I think we are going to investigate all of the ped Rheumatologist s associated with the hospital. We have seen one from one group but apparently there are two groups? Not sure but checking into it.
 
Clash,
Any news on the fecal calp? I think that result will really help with which way to proceed.
I just noticed something interesting though. A lot of us seem to have one parent that has IBS and then a child with Crohn's. I just read an interesting article about IBS that I am going to share in a new thread.
 
Okay so I was just going to update C's thread as we had the appt and just got home a bit ago. Before I could J called to say the IBD nurse called to say there wasn't significant anemia(what does that mean?). Other labs normal except that she is severely vitamin B12 deficient and will require shots. Due to this deficiency, her symptoms, and her brother's history the GI thinks she should have a colonoscopy and endoscopy. She hadn't done the FCP test yet....Ugghh she says she hadn't found time between registration, work and moving. I told it gets done this week or no season student football tux, so hopefully.

Ok now to update C's.
 

Catherine

Moderator
if the scopes are going to done soon and FCP can't be repeated often you may want to this them done at round the sometime.

I am glad they are doing more test. IBS should be dx with abnormal results.
 
Catherine are you saying IBS should or shouldn't be dxed with abnormal results.

I'm ready to see the lab results, waiting for J to set up portal.

Her b12 deficiency was severe enough the doc required shots or some type of px nasal spray, J didn't really understand it but said the nurse said it was super expensive and she'd see about finding a pharmco coupon with px. Anyone heard of this?

Also, what all can cause severe b12 deficiency, if this doesn't find definitive answers are there other specialties that would need to see her?

GI said her fatigue and easy bruising were probably due to the deficiency.
 

Catherine

Moderator
IBS should never be dx with abnormal test results.

If B12 is the only abnormal they need to find the cause of this. Only once the cause is know could the properly dx IBS.

Make sense?
 

Catherine

Moderator
Low b12 can cause a type of anemia.

Sorry Clash I'm work and have just received a text from Sarah's GI, so not thinking straight.
 
Another question for you guys, I only know what J remembers the nurse saying. Beyond the severe b12 deficiency the nurse said she didn't have significant iron deficiency anemia. Would this imply to you all that she has iron deficiency anemia but not significantly low?

J said the nurse did mention something about iron pills but she didn't elaborate on if it was just otc supplement or a px'ed supplement. J said she may have said but a lot of it was a bit over her head.

I'll be calling as soon as I can see the results.


Catherine, I hope all is okay!
 

my little penguin

Moderator
Staff member
DS does not have significant iron defeciency anemia but still takes OTC pills in the amount prescribed by the doc .
Normal dosing on the bottle is much lower but doc raised it to a different level.
 
Ok so I know for girls menstruation can cause anemia, but would this be all the time and not just during menstruation? Her period lasts 3 days and she isn't too heavy so could this cause anemia even two weeks afterward or in the instance of this blood work she was a few days before starting. Last time she tested anemic she was 3 weeks out from her period. Am I making sense?
 
Clash,
I missed your post about the menstruatin because we both posted at the same time. A light to moderate three day flow should not cause anemia. That is a question I can answer as that is something I am experienced with! Women's health!
 
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