Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Celiac son with possible gastric Crohns- how far do I pursue this?


 
07-30-2017, 03:59 PM   #1
mirandapresley
 
Join Date: Jul 2017
Celiac son with possible gastric Crohns- how far do I pursue this?

Hi, I am new here, and the mother of a 13 year old boy who has been dealing with chronic abdominal pain, vomiting and occasional diarrhea for almost a year. This is going to be a long post, but I really appreciate any advice you can give me.

Background- he was diagnosed with celiac disease in 2011, and after about a year on a gf diet, the abdominal symptoms he had resolved. He has been reasonably healthy since then, with only minor setbacks from accidental glutenings. Myself and his sister also have celiac, so our entire house is gluten free. There is zero possibility that he is being exposed to gluten. Definitely not sneaking it, he is afraid to eat anywhere but home.

About a year ago, he started having constant abdominal pain, which worsened with eating. Frequently, he vomited within minutes of eating solid food. Lost about 10 lbs. Took him to a GI, he tested his Ttg which was elevated and said he must have been exposed to gluten somehow. This seemed logical, so we became even more vigilant, took him off processed gf products in case there was some cross contamination. X ray also showed serious constipation so he was prescribed Miralax for a few weeks.

A few months went by, issues continued, tested again and his Ttg had gone up higher and he continued to lose weight, which made the GI suspicious of Crohns. DGP, which is specific for Celiac was negative both times, which indicates something besides gluten is raising the Ttg. (the GI dismisses that possibility the first time however.) Son also has mild persistent vitamin deficiencies, severely pitted and ridged fingernails and stunted growth. Height and weight are in the 20th% despite the fact that both myself and his dad are near six feet.

His CRP was normal, and Calprotectin test was also normal, so GI said it wasn't Crohns. He ordered a HIDA scan to check his gallbladder...it was fine.

Suddenly, his symptoms disappeared. Vanished. For 2 months.

About a month ago, they returned with a vengeance. Lost another 10 lbs. So, last week they did a colonoscopy and endoscopy. Took 8 biopsies.

I read the pathology report but haven't met with the Dr yet. Apparently, everything looked normal though. Removed a single polyp which pathology classified as an inflammatory polyp, which are strongly associated with Crohns and UC. Mild chronic gastritis with follicular characteristics but otherwise normal pathology.

I think his symptoms seem suggestive of gastric Crohns, which I understand is difficult to diagnose without actual stomach resection, and is extremely rare. The inflammatory polyp also raises a red flag for Crohns- but as there was only ONE polyp, that seems odd. We see the GI on Wednesday, and I have a feeling he is going to say nothing is wrong and tell him to take omeprazole for the gastritis. (we already tried that, didnt help)

My son is very much a hypochrondriac, and I do think some of his symptoms are somatic, as he suffers from severe anxiety. However, because of the polyp and unexplained gastritis, combined with the elevated Ttg, the pitted nails and stunted growth, I feel like there is something more going on then just somatic symptoms. But,I don't want to be one of those people who tells a doctor how to do their job, and I don't want to subject my son to unnecessary procedures.

I know gastric Crohns is really, really rare...but his symptoms- epigastric pain, worse after eating, vomiting after eating- lines up perfectly with it.

So, I am hoping some of you may have had similar experiences and can advise me on the likelihood that this is Crohns and whether I should push for more testing.Thank you for reading such a long post!
07-30-2017, 05:53 PM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Does he see a therapist regularly for his anxiety ?
Is he on anxiety meds ? Doing cbt?
Anything stressful for him at home /school recently that wasn't there when he was fine ???

Have they done an MRE or pill cam ?
Imaging the small bowel can be helpful

Tracking calorie intake (my fitness pal app -free) so you can see if he is taking in enough to gain and grow but isn't
Endo would be a good rock to visit
Rheumo as well due to nail pitting etc...

Anxiety does not cause stunted growth

I would follow the GI lead
But ask about possible imaging -pros and cons
It's a fine line to walk

Cyclic vomiting syndrome can also be a thing
Plus many other GI disorders
Including anxiety can cause vomiting /abdominal pain

Has he tried adding formula -peptamen jr etc...
To see if the type of calorie changes how much is absorbed
__________________
DS - -Crohn's -Stelara
07-30-2017, 07:20 PM   #3
Maya142
Forum Monitor
 
Maya142's Avatar
Has he had a gastric emptying test? Gastroparesis can cause those symptoms - pain after eating, vomiting after eating, early satiety (saying they're full after a few bites), nausea, weight loss.

The other thing would be an MRE/pillcam to look at his small bowel to make sure Crohn's is not hiding in there.

I would also make sure he is seeing a psychologist. Anxiety can cause a lot of physical symptoms. It does sound like there is something else going on too, which you should definitely pursue, but CBT would help with a lot of his anxiety and possibly with some of his symptoms.

My daughter has several chronic illnesses -- IBD, Gastroparesis and arthritis - and she sees a psychologist who specializes in kids with chronic illnesses.

It has made an incredible difference to her anxiety and how she copes with the many medical things in her life.

Does he take NSAIDs for anything by any chance? Advil or Aleve? Those can also cause gastritis and stomach issues.

My daughter has had stomach inflammation for a long time with her Crohn's. We manage it a PPI and Carafate. Bland food also helps.

In terms of growth, seeing a nutritionist might help. That way you can figure out if he's getting enough calories and can help figure out how to add in more. Formula is a good way - kids with IBD often need to drink Pediasure or Boost or Peptamen Jr to keep their weight up. The most palatable formulas would be polymeric formulas - like Boost, Ensure or Pediasure.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-30-2017, 07:39 PM   #4
mirandapresley
 
Join Date: Jul 2017
Thanks for the replies. He just started counseling a few weeks ago, though in the past it hasn't been helpful for him. Always when he was glutened, it would trigger massive depression and anxiety, which would pass after a few months. He has been dx with PTSD from his initial long illness. They tried him on Prozac a few weeks ago, a few days after he went up to 20 mg he had the allergic reaction. The ER said it was to the compazine (which he has taken many times without issue) but I suspect the Prozac. It was a severe dystonic reaction, complete spasms of trunk and neck and face stretched in a grimace, unable to speak or straighten up. He was at therapy at the time and they called an ambulance. Gave him IV Benadryl and it stopped within minutes. However, he was extremely anxious and terrified it would happen again. The prozac had lifted the depression, but amped the anxiety, and he was having a few side effects (face twitching, worsening belly pain, diarrhea, panic attacks) so now he was really freaked, thought he was having a heart attack, felt like his muscles were seizing again (though they did not visibly do so) two more trips to the ER. I decided to stop the Prozac and let him detox a bit so we could figure out what was causing what. They gave him hydroxyzine for anxiety which has helped quite a bit. We are planning on trying the Prozac again in a few weeks.

He has not done a gastric emptying test, or the pill cam yet. I was considering requesting both, and possibly an MRE as EGD and Colonoscopy can't reach the small bowel...I just don't know if I am over reacting- it is helpful to know others are thinking the same thing. He has an appt with an endocrinologist in a few weeks to check on reasons for the slow growth. His calorie intake and nutrition are definitely far too low as he has been unable to eat much for almost a year. He is very phobic about food to the point of anorexia. He was eating just a protein smoothie in the morning, and a sandwich in the afternoon. Nothing else. For months. Oftentimes, not even the sandwich because he would throw it up. I recently started giving him Ensure and that seems to have put a few lbs back on. He wants to eat, just within a few bites he puts it down because he says he feels sick or it hurts too much.

It's such a chicken/egg scenario...the anxiety worsens the stomach pain, the pain worsens the anxiety... I can tell the doctors think I am one of "those" moms who obsess over their kids health and make them think they are sick. I'm really trying not to be. I have tried to downplay this from the beginning, convincing him it was just another glutening, it would pass, etc, etc. It hasn't passed. He just gets worse.

Dealing with the ongoing stomach issue is hard enough- he missed a ton of school last year, and they were threatening truancy proceedings. He LIKES school, wasn't avoiding it, gets good grades. Is excited and can't wait to go back as he has had a boring, lonely summer (everyone else here seems to be loaded and sent their kids away to $2000 a month summer camps!) So he hasn't seen his friends much. I do not want this school year to be like last, with him missing 1-2 days every week!

I really appreciate your suggestions. Thank you.
07-30-2017, 07:44 PM   #5
mirandapresley
 
Join Date: Jul 2017
Oh, I forgot, no, he does not use any NSAIDs or aspirin. He is really phobic about meds so rarely takes anything- only zofran or compazine when the nausea is really, really bad. (Stopped the compazine since the reaction however)
07-30-2017, 08:03 PM   #6
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Can you ask for a different ssri like lexapro or Zoloft etc... especially if he reacted to the Prozac

Second gastroparesis testing or MRE
But first see if you can get more ensure in him
And get the anxiety a little more settled
Eating the right amount of calories can make a really big difference
And if testing is stressing him out
Then ...
Possible getting the right meds and cbt plus proper nutrition
Maybe
I know for ds when he is formuka only he needs 2200-2600 calories a day
He is 13 as well
He drinks half his calories from neocate jr due to gastroparesis
But is a healthy weight and height
07-30-2017, 08:13 PM   #7
mirandapresley
 
Join Date: Jul 2017
Can you ask for a different ssri like lexapro or Zoloft etc... especially if he reacted to the Prozac

Second gastroparesis testing or MRE
But first see if you can get more ensure in him
And get the anxiety a little more settled
Eating the right amount of calories can make a really big difference
And if testing is stressing him out
Then ...
Possible getting the right meds and cbt plus proper nutrition
Maybe
I know for ds when he is formuka only he needs 2200-2600 calories a day
He is 13 as well
He drinks half his calories from neocate jr due to gastroparesis
But is a healthy weight and height
He has tried Zoloft in the past (reacted badly) and welbutrin (didn't have any effect) Since we aren't sure if he reacted to the Prozac, and if he did, was it just at that dosage, or the compazine, we are willing to try the 10 mg again, simply because it worked very quickly and amazingly for the depression, and the increased anxiety is a common side effect that often goes away after a month or two. His depression was extremely severe, to the point he was threatening suicide and was put in a day treatment program for several weeks, which he just completed, so keeping that at bay is a priority obviously.

I am focused on trying to get nutrition into him. He will be 14 in September and is only 5' and 95 lbs, so he is very self conscious that he is smaller than his peers, who have suddenly all shot up. The testing doesn't give him anxiety, in fact, he keeps begging for them to cut him open so they can see what is going on. He is desperate to feel better and convinced that he never will. He has a pretty low pain tolerance anyway, so his anxiety over this I think increases whatever pain he is having ten-fold. I just want him to feel better, mentally and physically, and am exhausted from trying to navigate all of this, reassure him constantly, and work full time.
07-30-2017, 08:17 PM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
I would also talk to a psychiatrist about his reaction and a different anti-depressant. There are several options and if he's so terrified to take Prozac again, that's not going to help anything. And it does sound like he had a bad reaction.

My daughter has done REALLY well on Lexapro, along with CBT. She was a very anxious kid and is now doing MUCH better, despite very difficult medical circumstances - many hospitalizations, procedures, surgery etc.

My kiddo needed about 2400 calories to gain weight. Both her GI and nutritionist were surprised she needed that much since she is so small - 5'2 and was 85 lbs or so at the time. She was also 16-18 and was done growing, but she really did need a lot of calories to gain weight. In her case, her Gastroparesis was severe enough that she needed a feeding tube placed into her small bowel. With that, she was finally able to gain weight and went from being severely malnourished to a normal kid.

The first step, though, is definitely a gastric emptying test.
07-30-2017, 08:47 PM   #9
mirandapresley
 
Join Date: Jul 2017
I would also talk to a psychiatrist about his reaction and a different anti-depressant. There are several options and if he's so terrified to take Prozac again, that's not going to help anything. And it does sound like he had a bad reaction.

My daughter has done REALLY well on Lexapro, along with CBT. She was a very anxious kid and is now doing MUCH better, despite very difficult medical circumstances - many hospitalizations, procedures, surgery etc.

My kiddo needed about 2400 calories to gain weight. Both her GI and nutritionist were surprised she needed that much since she is so small - 5'2 and was 85 lbs or so at the time. She was also 16-18 and was done growing, but she really did need a lot of calories to gain weight. In her case, her Gastroparesis was severe enough that she needed a feeding tube placed into her small bowel. With that, she was finally able to gain weight and went from being severely malnourished to a normal kid.

The first step, though, is definitely a gastric emptying test.
I will definitely talk to the GI about that Wednesday, gastroparesis was something I hadn't considered. I am anxious about him trying an antidepressant again too. It is so difficult to know if the symptoms he has are typical mild side effects, or if something is really wrong, because to him EVERYTHING is cause for panic. Today he was obsessing over red marks on his fingers (that were visible only to him) convinced something might be wrong. I have no way of knowing if a medicine is causing actual chest pain, shortness of breath, numbness and tingling, etc...because his anxiety over it will make him think it is. (and no, I never let him read the side effect profiles, no reason to feed the beast!)

I'm just so very frustrated right now. Seems like trying to fix one problem just exacerbates another, and I feel like the doctors are getting tired of seeing me and think I have Munchausen's or something.

We went through all of this exact same crap when he was diagnosed with celiac- took two years of being told he had acid reflux, was just constipated, and finally, that he was fine and his mother was causing him anxiety that made him think he was sick, before they FINALLY scoped him and found celiac. I felt vindicated and he got better. Now, it is like a replay of that same nightmare.
07-30-2017, 09:11 PM   #10
Maya142
Forum Monitor
 
Maya142's Avatar
I think getting the anxiety under control is going to be key to figuring out what is actually going on. It's hard because anxiety can cause a lot of physical symptoms. It can definitely increase pain.

If he is too afraid to eat, then it could be even causing the stunted growth and malnutrition.

We never had increased anxiety with anti-depressants - my daughter has tried Lexapro, Zoloft and Wellbutrin. Wellbutrin can depress appetite so you probably don't want him on that anyway.

Given his reaction to the Prozac, I'd definitely discuss the pros and cons with the doc - my worry will be that you'll never know if it is working because he's going to panic the moment you restart it.

The other option would be an anti-anxiety drug for the short-term while you wait for an anti-depressant to kick in. Something like Ativan. It's not something they give kids easily, but for very anxious kids, it's sometimes needed. It sounds like he is getting very worried and that certainly isn't going to help anything.

Poor kiddo . I bet you're frustrated!!

Definitely stick with the counseling. Sometimes it can take some time to find the right psychologist. My daughter saw two that didn't really work and then the third was perfect since she was used to working with kids with chronic illnesses.

The pain after eating, getting full easily etc. does sound a LOT like Gastroparesis to me. So I'd definitely ask about that. It also goes hand in hand with reflux, which then could cause gastritis.
07-31-2017, 11:22 AM   #11
sabrina123
 
Join Date: Aug 2016
- Agree on pill cam. my daughter had perfect labs, but crohns was very clear in cam results.

- Have you checked on any other food sensitivities? My GI said lactose sensitivity is often seen with celiacs. My daughter developed many sensitivities (and stopped growing)- and would have vomiting diarrhea, extreme pain, reflux etc quickly after she ate - seemed even as she was eating, she could start feeling it. While we were in the process of diagnosis, we did low lactose, no gluten, no soy, no high fructose, and avoided heavily processed foods - including gluten processed. We did it as a family and were creative - to make sure got calories. Helped when Dad and siblings even felt better. (Our GI also did test her for fructose- you can do breath test for lactose/fructose. We already were 100% sure on lactose). Summer was the easier time to really start this than during the school year.

After a few weeks, It helped to make things a little more stable and get her out of a bad cycle. When diagnosed with crohn's, we continued diet therapy with other crohn's treatment.

Note: Once she stabilized with crohns, we haven't had to be so strict with the diet
07-31-2017, 07:28 PM   #12
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
I agree that an MRE or pillcam would help you decide if you're dealing with IBD. Big hugs to you and your family--I know that none of this is easy. I also have a very anxious kid, and that adds a difficult extra layer to all of our decision-making about her disease and treatment.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-01-2017, 09:18 PM   #13
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Oh my goodness... your description of your son was like reading a bio of my own son! The only difference was we got the Celiac and Crohn's dx at the same time (age 8, now 17). He went GF immediately and felt great and grew for about two years. Then the vomiting started. First monthly or so and we thought it was gluten, but then the vomiting became more and more frequent until it was several times a day, every day. During the first two years, he was not being treated for Crohn's at all. Turned out he had developed a stricture in his small intestine that was only 3 mm in diameter (normal is closer to 3-5cm), hence all the vomiting. Surgery and Remicade have since put him in remission for the last 3 1/2 years.

I'd definitely ask about an MRE. If there is the possibility of a stricture, I don't think a GI would agree to a pill cam at this point. Also ask about cyclic vomiting and gastroparesis. Just bringing up all these questions will show the GI that you've been doing your research and be sure you don't leave until you have explanations on why he/she thinks each is a possibility or not. I was so uneducated when my son was dx and I kick myself for not being more persistent and asking more questions.

Let us know how it goes and good luck!!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
08-05-2017, 10:03 AM   #14
mirandapresley
 
Join Date: Jul 2017
- Agree on pill cam. my daughter had perfect labs, but crohns was very clear in cam results.

- Have you checked on any other food sensitivities? My GI said lactose sensitivity is often seen with celiacs. My daughter developed many sensitivities (and stopped growing)- and would have vomiting diarrhea, extreme pain, reflux etc quickly after she ate - seemed even as she was eating, she could start feeling it. While we were in the process of diagnosis, we did low lactose, no gluten, no soy, no high fructose, and avoided heavily processed foods - including gluten processed. We did it as a family and were creative - to make sure got calories. Helped when Dad and siblings even felt better. (Our GI also did test her for fructose- you can do breath test for lactose/fructose. We already were 100% sure on lactose). Summer was the easier time to really start this than during the school year.

After a few weeks, It helped to make things a little more stable and get her out of a bad cycle. When diagnosed with crohn's, we continued diet therapy with other crohn's treatment.

Note: Once she stabilized with crohns, we haven't had to be so strict with the diet
Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��
08-05-2017, 10:09 AM   #15
mirandapresley
 
Join Date: Jul 2017
Oh my goodness... your description of your son was like reading a bio of my own son! The only difference was we got the Celiac and Crohn's dx at the same time (age 8, now 17). He went GF immediately and felt great and grew for about two years. Then the vomiting started. First monthly or so and we thought it was gluten, but then the vomiting became more and more frequent until it was several times a day, every day. During the first two years, he was not being treated for Crohn's at all. Turned out he had developed a stricture in his small intestine that was only 3 mm in diameter (normal is closer to 3-5cm), hence all the vomiting. Surgery and Remicade have since put him in remission for the last 3 1/2 years.

I'd definitely ask about an MRE. If there is the possibility of a stricture, I don't think a GI would agree to a pill cam at this point. Also ask about cyclic vomiting and gastroparesis. Just bringing up all these questions will show the GI that you've been doing your research and be sure you don't leave until you have explanations on why he/she thinks each is a possibility or not. I was so uneducated when my son was dx and I kick myself for not being more persistent and asking more questions.

Let us know how it goes and good luck!!
Wow, that sounds so much like my son! How did they find the stricture? The Dr reluctantly agreed to do an MRE on the 23rd, and if that doesn't show anything, the pill cam. But if that also doesn't show anything, he basically said he is done with us. I can't tell he thinks I am just an over reacting hysterical mother that spends too much time on the internet. He was so patronizing when he talked to me, told me I need to accept that this is probably just his anxiety. I was so mad. I don't WANT it to be Crohns, I really, really don't...but I know SOMETHING is wrong and I wont stop until we find out what it is.

I also have seen some articles about POTS...and there are some big similarities there as well, so if the GI doesn't find anything, that is my next avenue to check out. I know he has issues with his blood pressure - he has to sit down in the shower or he feels.like he is going to pass out. And apparently POTS can cause nausea and vomiting and the hand tremors he constantly has. I wish there was just a simple blood test for all this crazy stuff!
08-05-2017, 10:18 AM   #16
Maya142
Forum Monitor
 
Maya142's Avatar
Did he say anything about the gastric emptying scan? A lot of his symptoms sound like Gastroparesis to me.

For POTS - is his heart rate high when he stands up?

I wonder if it could also be two things - something causing the nails and something causing the GI issues. For example, psoriasis could cause ridged and pitted nails.

How is he doing with his anti-depressant? I feel like once you get the anxiety under control, the doc will take you more seriously. It shouldn't be that way, but I think that's what the situation is right now .
08-05-2017, 12:18 PM   #17
mirandapresley
 
Join Date: Jul 2017
Did he say anything about the gastric emptying scan? A lot of his symptoms sound like Gastroparesis to me.

For POTS - is his heart rate high when he stands up?

I wonder if it could also be two things - something causing the nails and something causing the GI issues. For example, psoriasis could cause ridged and pitted nails.

How is he doing with his anti-depressant? I feel like once you get the anxiety under control, the doc will take you more seriously. It shouldn't be that way, but I think that's what the situation is right now .
No, he didn't, but someone else here suggested gastroparesis as well. I figured I would wait until the other tests are done and then if needed, bring it up. The Dr was so annoyed with me, I didn't want to push my luck.

I also wonder if there isnt more than one issue going on. The nail grooves are Beaus Lines, and then he also has pitting, which I think is partly because he picks at h thumbs, because his toenails have the Beaus Lines but not the pitting. Everything I read says Beaus lines on both hands and feet are a sign of systemic disease...so the question is WHAT disease? He had then before he was diagnosed with Celiac, and after going gf, they mostly went away. His nails weren't perfectly smooth, but they looked pretty good. It wasn't until last summer, right before he got sick, that they started getting bad again. Since his hemoglobin and Ttg all changed about the same time, it seems unlikely they aren't connected. Other autoimmune issues could be messing up the nails, but he doesn't have symptoms of the ones that would, other than Crohns. And the other ones would not make him anemic and raise his Ttg.

I have not checked his heart rate, but he complains constantly of it racing and pounding anytime he does any activity- even walking around the mall. He will want to go do something, like go for a hike, and as soon as we set out he gets really nauseous, says he feels like he is going to pass out, and that his heart is racing and pounding. I was attributing it to anxiety before, but it sounds an awful lit like POTS. He sees his pediatrician for a physical Thursday, so I was going to ask her to check his heart rate after standing for 3, 5 and 7 minutes, and if it looks off, maybe order a tilt table test.

Before I was diagnosed with celiac, I had a huge issue with orthostatic hypotension- I literally could not stand more than two minutes or I would pass out. Once I went gf, that went away. So I wonder if I didn't have it as well.

My daughter (another celiac) also went through several years of mystery stomach issues at the same age he is. We blamed it on hormones as they couldn't find a reason for her vomiting and nausea. She also developed an allergy to sunlight and would get hives and rashes. And she had to sit down in the shower. She is almost 19 now, and over the last few years, all of that gradually just went away. Reading about POTS and how it can strike at puberty in both boys and girls, and is linked with autoimmune issues- I really think there is a connection.

We stopped the Prozac today. His depression was so much better, after just a few days, but his anxiety is through the roof, and he is having constant muscle spasms and twitching, so I think we have to try something else unfortunately.

I really appreciate all of the advice and support from everyone. I was a little nervous about posting here since he doesn't have a Crohns diagnosis...I don't want to detract in any way from the suffering if those who know they have Crohns, and I really am hoping he does not have it. There just seems to be a lot of red flags though...
08-05-2017, 12:22 PM   #18
sabrina123
 
Join Date: Aug 2016
[QUOTE=mirandapresley;984926]Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��[/QUOTE

Calprotectin was taken around the colonscopy - pill cam (both showed crohn's) but her calprotectin levels were normal. The GI's we saw - said some kids just don't show in the labs. However, We did have low levels of things like calcium, vitamin D, iron - which I understood probably indicated low absorption. Very slightly elevated sed rate. Since it took a while to definitively diagnosis - looking back at the year of illness, growth did stop. Then when Crohn's got under control, rapid growth
08-05-2017, 12:28 PM   #19
Maya142
Forum Monitor
 
Maya142's Avatar
Psoriasis is actually a systemic disease - and inflammation can often cause mild anemia. Same with juvenile idiopathic arthritis or psoriatic arthritis (I know you didn't say he has joint pain, but just as an example).

Has a dermatologist seen his nails?

The racing heart and nausea could certainly be anxiety but I would definitely get his pediatrician to check it out. And his blood pressure. If it's off (HR is very high upon standing for example), then you need to be referred to a cardiologist.

Not sure if POTS would impact his hemoglobin though??

I would also make sure you are tracking his calories - if he can't eat enough, then you may need to supplement with something like Ensure or Boost or Pediasure. Some of his issues could be malnutrition.

Obviously, the malnutrition probably stems from something else (for example, could be Crohn's or Gastroparesis), but until you figure out what that something is, I'd work on getting his weight up.

If it is Gastroparesis or even Crohn's, formula supplements like Boost or Ensure will be easier to digest than food and hopefully will not cause abdominal pain. Liquids tend to be much easier to tolerate. There are lots of flavors he can try.
08-05-2017, 12:30 PM   #20
Maya142
Forum Monitor
 
Maya142's Avatar
Sorry - I missed that you have been trying Ensure. I would stick with it, while you're trying to figure everything out, so at least he is getting some good calories.

It is sometimes very hard to get a diagnosis and takes quite a while. Hang in there!!
08-05-2017, 12:42 PM   #21
mirandapresley
 
Join Date: Jul 2017
[QUOTE=sabrina123;984935]
Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��[/QUOTE

Calprotectin was taken around the colonscopy - pill cam (both showed crohn's) but her calprotectin levels were normal. The GI's we saw - said some kids just don't show in the labs. However, We did have low levels of things like calcium, vitamin D, iron - which I understood probably indicated low absorption. Very slightly elevated sed rate. Since it took a while to definitively diagnosis - looking back at the year of illness, growth did stop. Then when Crohn's got under control, rapid growth
Interesting...everything I read said the Calprotectin test was almost never false negative- obviously it sometimes is!

He takes a liquid multi vitamin, liquid zinc, and ferrous sulfate every day, otherwise he ends up deficient as well. But now, despite taking that, he is showing mild zinc and copper deficiency- his iron is good but he is slightly anemic. So something has changed.
08-05-2017, 01:04 PM   #22
mirandapresley
 
Join Date: Jul 2017
Psoriasis is actually a systemic disease - and inflammation can often cause mild anemia. Same with juvenile idiopathic arthritis or psoriatic arthritis (I know you didn't say he has joint pain, but just as an example).

Has a dermatologist seen his nails?

The racing heart and nausea could certainly be anxiety but I would definitely get his pediatrician to check it out. And his blood pressure. If it's off (HR is very high upon standing for example), then you need to be referred to a cardiologist.

Not sure if POTS would impact his hemoglobin though??

I would also make sure you are tracking his calories - if he can't eat enough, then you may need to supplement with something like Ensure or Boost or Pediasure. Some of his issues could be malnutrition.

Obviously, the malnutrition probably stems from something else (for example, could be Crohn's or Gastroparesis), but until you figure out what that something is, I'd work on getting his weight up.

If it is Gastroparesis or even Crohn's, formula supplements like Boost or Ensure will be easier to digest than food and hopefully will not cause abdominal pain. Liquids tend to be much easier to tolerate. There are lots of flavors he can try.
I didn't know inflammation could cause anemia...that definitely raises some other possibilities then. No, he doesn't complain of joint pain, and he doesn't really have any other skin issues, other than this winter his hands were cracked and bleeding because he obsessively washed them and they dried out. When his stomach issues started up, he suddenly developed weird phobias...checking and rechecking locks, compulsive hand washing, germophobia....it was really odd as that was not him at all. That gradually changed to just general anxiety.

He drinks several bottles of Ensure every day...that is pretty much all he can keep down. I tried giving him bean soup the other day but he threw it up. He did manage to keep scrambled eggs down yesterday, but said that they made his stomach hurt really bad. I don't get why the doctor can't seem to understand that not being able to eat solid foods is a serious issue! No, he isnt wasting away, but that is only because he is drinking 5 or six bottles of ensure a day!

We haven't seen a dermatologist, but I've been thinking about it if we don't get any other clear answers. Or maybe a rheumatologist if it seems like it is some other autoimmune issue. It's just so overwhelming, and the Dr bills are racking up quickly. We have decent insurance thankfully, but there is still deductibles and co-pays and they have almost maxxed out our flex benefits. I'm trying to not go overboard in taking him to specialists.
08-05-2017, 01:10 PM   #23
mirandapresley
 
Join Date: Jul 2017
I forgot...when the Dr palpated his stomach, when he got to the mid-low right hand side, my son screamed and grabbed his hand away. He complained that it hurt when he did the same thing last visit, and the Dr seemed to not even take notice. This time he paid attention, but his attitude seems to me that he felt he was faking it. Except, that is exactly where the small bowel is, the one place they haven't seen yet, and my son had no idea of what it was. I know he was not faking that reaction- it was completely reflexive.
08-05-2017, 01:53 PM   #24
Maya142
Forum Monitor
 
Maya142's Avatar
So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!
08-05-2017, 02:25 PM   #25
mirandapresley
 
Join Date: Jul 2017
So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!
Wow, that had to be so hard for her! I will definitely ask about a scan. I know they suspected gastroparesis before he was dx with celiac. When they did his first endoscopy, he had undigested food in his stomach, even though he had been fasting.
08-05-2017, 02:27 PM   #26
mirandapresley
 
Join Date: Jul 2017
So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!
I really liked this GI at first...he seemed very thorough and confident that we would get him better. But now he just seems dismissive. He is at UVA, so is supposed to know what he is doing, but I may get a second opinion. If anyone is in Virginia and can recommend a peds GI, please do!
08-05-2017, 03:16 PM   #27
Maya142
Forum Monitor
 
Maya142's Avatar
Wow, that had to be so hard for her! I will definitely ask about a scan. I know they suspected gastroparesis before he was dx with celiac. When they did his first endoscopy, he had undigested food in his stomach, even though he had been fasting.
That is a BIG red flag for Gastroparesis. I assume he was NPO after midnight and at least 7-8 hours later, there was still food??

So with Gastroparesis, they do a gastric emptying scan. The kiddo eats a meal - usually scrambled eggs and toast, which has a radioactive tracer mixed in.

If MORE than 10% of the meal is left after 4 hours, then Gastroparesis (delayed gastric emptying) is diagnosed.

It is not a difficult test - kind of long and boring - but not too hard. The key is keeping down the meal so they can actually do the test!!

My daughter is doing much better now - she is on motility medication and her Gastroparesis has become less severe. She gained back all the weight she had lost (she was so severely underweight she developed an arrhythmia, Refeeding syndrome and was hospitalized several times just for her weight). She is able to eat much more and is a healthy weight.

She still has a J tube (goes into her small bowel) but does not depend on it because she can eat again.
08-05-2017, 03:28 PM   #28
mirandapresley
 
Join Date: Jul 2017
That is a BIG red flag for Gastroparesis. I assume he was NPO after midnight and at least 7-8 hours later, there was still food??

So with Gastroparesis, they do a gastric emptying scan. The kiddo eats a meal - usually scrambled eggs and toast, which has a radioactive tracer mixed in.

If MORE than 10% of the meal is left after 4 hours, then Gastroparesis (delayed gastric emptying) is diagnosed.

It is not a difficult test - kind of long and boring - but not too hard. The key is keeping down the meal so they can actually do the test!!

My daughter is doing much better now - she is on motility medication and her Gastroparesis has become less severe. She gained back all the weight she had lost (she was so severely underweight she developed an arrhythmia, Refeeding syndrome and was hospitalized several times just for her weight). She is able to eat much more and is a healthy weight.

She still has a J tube (goes into her small bowel) but does not depend on it because she can eat again.
Yup, he hadn't eaten since supper the night before. However, that was 6 years ago, and his issues seemed to resolve once he was gf- and celiac can cause delayed gastric emptying. Because they also did a colonoscopy this time, he had to fast for basically two days, so the endoscopy did not show any food left- so know way if knowing if it would have been the same scenario. I have been reading up on gastroparesis...it does certainly sound like him. I will definitely follow up on this!
08-18-2017, 11:24 PM   #29
mirandapresley
 
Join Date: Jul 2017
So, no update yet as the MRE is not until Wednesday, but my poor kiddo continues to be miserable, and I am sooo hoping for some answers. His depression and anxiety have been really awful, and his pediatrician is acting like I am a hypochondriac and I need to accept anxiety is causing the stomach pain. I am beyond frustrated with them, and it has been so hard to deal with this. Waiting weeks/months for an appt or test, meanwhile he suffers 24 hrs a day and begs me to kill him. They really don't understand what it is like. The good news is that he just started on Lexapro, and third try seems to be the charm because in just a few days there has been a huge improvement in his mood. The anxiety is still bad, but no worse at least, and he is tolerating the side effects much better than the Prozac or Zoloft.

Meanwhile, he is complaining that his intestines feel like they are being stabbed by tiny needles. I was wondering if that is a typical description for pain caused by Crohns?
08-18-2017, 11:37 PM   #30
Maya142
Forum Monitor
 
Maya142's Avatar
My daughter does not describe the pain like that, but pain is pretty subjective. She describes dull aching pain or cramping, which can be sharp.

I am concerned about his mental health - have you considered seeing pain management? There are meds they can try for pain, while you are trying to figure out what the problem is.

Elavil is one that is used for pain. It's technically an anti-depressant, but in small doses it is used for pain. Nortriptyline is similar to Elavil and also used. I'm not sure if they can be combined with Lexapro, but a pain management doc or psychiatrist would know.

Then there are meds like Levsin and Bentyl which are anti-spasmodics. My daughter takes Levsin, which helps her a lot with cramping.

I just wonder if you were able to get the pain under control, maybe his anxiety and depression would get better.

Then you could figure out what is caused by anxiety and what is caused by whatever is going on.

There are many pain conditions that are exacerbated by anxiety - abdominal migraines, amplified pain syndrome, IBS. The pain is VERY real and needs to be treated. They can teach him ways to deal with it and deal with the associated anxiety - biofeedback, CBT, relaxation exercises.

Obviously, you need to get to the bottom of what is causing this, but until then, treating the symptoms may help.

Lexapro can take 4-6 weeks to work. It's encouraging that you're seeing signs of him getting better, but it might take a while till you see a big difference.

I'm really glad the MRE is scheduled - hopefully you will get some answers.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Celiac son with possible gastric Crohns- how far do I pursue this?
Thread Tools


All times are GMT -5. The time now is 06:40 AM.
Copyright 2006-2017 Crohnsforum.com