Please help me!

[Momto6boys]

I don't know what is wrong with my 13 year old son. About a year ago he started complaining of severe stomach pain. We had just moved and had been eating alot of pizza. I thought it was just that. It continued a month later and he said he almost passed out a couple of times on the toilet from the pain after the pizza. Obviously I stopped giving him any pizza at all. His pain continued so I took him off gluten for a week (I have been gf for 6 years now due to Celiac disease), his stomach felt amazing, no pain! After about 9 days he ate gluten again and the severe pain and diarrhea was back. It messed his stomach up so bad he couldn't eat for 3 days! His pediatrician said she didn't even need to test him, just don't give the kid gluten again. Fast forward to this past summer, he was doing great gf and his stomach started hurting again. His bday is the end of June and I particularly remember him not wanting to eat at his favorite type of restaurant (Mexican), due to it killing his stomach the past couple of times. This went on and off the whole summer. He was still active and playing, and eating his normal foods. August came and his stomach just hurt him so bad, he just sat on the couch all day long. He is normally bouncing off the wall with energy. We homeschool and don't start till the day after labor day, so it being August wasn't a reason for any stress. His pediatrician did an x-ray and said his whole colon was full of stool! I didn't even know he was constipated! She put him on Senna and told him to drink alot of water. He did that religiously, including prune smoothies once to twice a day. He was moving his bowels every day, sometimes twice a day. His pain in his main lower stomach is still there. I take him back to the Dr and she said same thing, constipation. I said I want to be referred to a specialist. We went later that month and he was the oddest Dr I've ever met! Talked about how small he was and how he needs to gain some muscle to get a girl and fight with his brothers, he needs to eat nothing but egg whites, chicken with beans soup, and apples for an entire month! Told me if I ate gluten I wouldn't be so overweight. I wish I was making that up! BIZARRE Dr indeed! I'd rather both be in the hospital from gluten,but thanks specialist for telling me that! Anyway, he wanted to do a scope in 2 days, but I didn't want someone that I didn't feel comfortable with touching my son. I start him on the Makers Diet and 2 days he is feeling amazing. We are going shopping and he wants to go to eat a burger, said he was craving it sooo bad. The kid is so skinny we get happy when he wants to eat. Well it was a horrible painful night for him. He ate a bacon cheeseburger on a gf bun and french fries. He had severe diarrhea several times that night and the passing out pain again . He's been on the SCD diet for 10 days straight now. Says his stomach feels better, but is still hurting. 3 days ago we started miralax per his Dr . He is pooping a couple times a day, but his lower stomach is still hurting him alot. I took him back to his pediatrician today and she didn't even x-ray, just palpated his stomach and it wasn't sensitive to the touch. She said she thinks it's just constipation. He eats like a bird and barely drinks water, he will drink smoothies twice a day. And I just finished his SCD yogurt. Does this sound just like constipation to have that much pain in his lower stomach? I'm so scares he's gonna have a ruptured bowel or something. Sorry so long, thank you for reading.

 

[my little penguin]

Did you see a pediatric Gi at a large university children’s hospital ?
If not please go see one
If he is underweight and not growing (small for his age ) there are reasons
Limited diet randomly trying to figure it out without a good pediatric GI can be a disaster as to what is causing what
Could be celiac ,could be something else
Constipation can cause a lot of pain
It can simply constipation but constipation can be part of crohns -

See a good pediatric Gi
Follow their advice for diet changes
They may want bloodwork /stool samples /scopes
Imaging

Have you tried kids boost or pediasure ?
Both can add extra weight which is needed for growth
Kids with inflammation tend to weigh less
Eat less
Get tired
Grow less

Hope you can get into a good pediatric Gi soon

 

[Pilgrim]

Honestly yes, it could be constipation. But what is actually causing the constipation? Crohn's can cause constipation.

It sounds very much like my son, although he is a normal weight. I was able to get a scope because his sister has Crohn's although it looked like it was just a constipation problem. Scopes showed Crohn's.

With a history of celiac in your family, I would push for diagnostic scopes with biopsies.

 

[Momto6boys]

He hasn't been to a pediatric gastroenterologist yet, just one that was about 45 minutes away that accepted our insurance. Not a pleasant experience with him. I asked about a pediatric gastroenterologist previously at his pediatrician and today also, she said she would definitely send him to one if it continues...

 

[my little penguin]

Do you have to have a referral
To a ped Gi ?

 

[Momto6boys]

No, not yet.
I also forgot to say that he has always been on the small side, 5th percentile for height and weight. Same growth curve as our oldest son who now towers over us. I just worry about it affecting his future growth.

 

[Momto6boys]

Do you have to have a referral
To a ped Gi ?

Unfortunately, yes

 

[JasonBourne]

I know this must be really frustrating.

Consider taking a break from dairy, and see how it goes.

Even if this or something else relieves symptoms, get to the bottom of it.... Dr, blood work, MRI or preferably scope...

FYI On the deep fried front for myself, I have largely narrowed it down to oil type, oil freshness, and what’s cooked in it. Even an OK oil that has breaded things cooked in it, but not changed oil for a few weeks will give me trouble. (Washroom before I finish dinner). First day or two fresh oil, no problem. Best fry oil I’ve found is coconut oil.... pretty rare.

Best wishes.

 

[Pilgrim]

No, not yet.
I also forgot to say that he has always been on the small side, 5th percentile for height and weight. Same growth curve as our oldest son who now towers over us. I just worry about it affecting his future growth.

We have a large crew too, I'm a mom of 7, and it is a comfort that he follows a growth pattern that runs in the family. It is a good way to monitor growth. We have kids that tend to grow in the 90th percentile for height and weight for several years but because they are high on the curve it does take a huge drop to garner attention from a doctor. "But they look great!"
Be the squeaky wheel to get a referral, but remember that these things can take months. It's a long road.

 

[Maya142]

I think seeing a pediatric GI is definitely a good idea. Even if it is simply constipation, they can help you develop a plan to deal with it properly, so he doesn't have to suffer so much. Constipation can cause a surprising amount of pain.

Given the family history of Celiac, I also think they should at least do blood work and stool tests, and perhaps scopes, if something concerning is found. You won't know if it's Celiac though, unless he's eating gluten for a while before doing scopes. I know it sounds crazy to give a kiddo something that hurts him, but it might be necessary to figure out what is going on.

There are blood and stool tests which can measure inflammatory markers like CRP and ESR and Fecal Calprotectin. Fecal Calprotectin, which is a stool test, is the most accurate because it tells you if there is inflammation in the gut specifically. CRP and ESR, which are blood tests, tell you if there is inflammation somewhere in the body. They're less specific because they can go up if your child has a cold or some sort of virus, not just if there is inflammation.

Without further testing, it's hard to tell if it's Celiac, gluten intolerance, Inflammatory Bowel Disease (IBD - Crohn's and Ulcerative Colitis are both types of IBD), Irritable Bowel Syndrome (IBS) or something else entirely.

Do you have an appt. with the pediatric GI yet? Sometimes it can take months to get in, so I'd make it ASAP.

 

[Pilgrim]

Any news momto6boys ?

 

[Momto6boys]

Any news momto6boys ?

Not yet, he has a stomach ultrasound in the morning, and an appointment with a pediatric gastroenterologist the end of the month. Thank you for asking!

 

[Momto6boys]

Well he ended up having severe diarrhea and stomach pain half the day yesterday and we took him to the ER. I didn't expect them to do anything, yet was very scared when he described the pain the worse pain in his life! By the time they saw him it had eased off some, and the diarrhea had stopped. The Dr did do another x-ray and it showed some stool at the bottom where his pain is, so said that could be a contributing factor, or it could be Crohn's. We didn't mention Crohn's, the Dr did. He said given the stomach pain for a year, dark circles under his eyes and muscle aches he would think it's not just constipation. Told us to go to a pediatric gastroenterologist (appt at the end of the month). It's so sad because the kid barely eats anything living in fear of pain .
He did have a stomach ultrasound Friday and it was all normal. It checked other organs like kidneys, liver.
He's been following the SCD diet for a month now after his last episode of severe diarrhea. That's the only thing that keeps it tolerable. So I'm not sure what happened this time. The only thing he ate different was some non organic pears.

 

[Maya142]

Poor kiddo. I'm sorry he's so miserable. Is he on a cancellation list? Some offices have them, others don't. When I've needed to get my daughter in to see a specialist, I call every few days, just in case someone cancels. It often works.
I would also keep a food diary and a log of his symptoms - number of BMs per day, consistency (the Bristol stool chart is helpful), level of pain, what makes the pain worse or better etc. That can help you see patterns.
Hang in there!!

 

[Pilgrim]

I'm so glad you have an appointment! I second the record keeping. I print off a calendar page for the month to note BM's,weight changes , food, meds, and supplements. Also try to go back in memory and write when certain symptoms started, because they will want that history. It also helps to take a second adult to the appointment because two brains are better than one.

 

[Momto6boys]

I'm so glad you have an appointment! I second the record keeping. I print off a calendar page for the month to note BM's,weight changes , food, meds, and supplements. Also try to go back in memory and write when certain symptoms started, because they will want that history. It also helps to take a second adult to the appointment because two brains are better than one.

I always take my husband with me. I have multiple autoimmune diseases and sometimes I don't think clearly, so he always goes with me when it's a specialist

 

[Pilgrim]

I always take my husband too, but have no good reason for my brain going fuzzy when we're in a medical setting!
I have seen interesting charts that show how diseases like MS and diabetes and Crohn's and Lupus etc...can all be related.
It sounds like you have a lot on your plate.

 

[crohnsinct]

Unfortunately abdominal pain is the number one reason for visits to the physicians office and a lot of the diseases, syndromes etc share the same symptoms so it is very hard to tell what is causing what. Further, chronic and severe constipation can really be debilitatingly painful could definitely cause a lack of appetite and actually caused my oldest daughter (non Crohnie) to vomit. All while having one or two BM's a day so we thought she was fine. She even had rectal prolapse.

Clearly something is not right and you need a pediatric GI to get to the bottom (pun totally intended) things. I am so glad you have that appointment.

May I suggest asking your primary care physician to order a fecal calprotectin test. This test measures inflammation in the GI tract specifically. Many GI's use this as one tool of determining whether or not this issue at hand is functional (IBS, motility, run of the mill constipation) or organic (IBD). An elevated level on this test could move you to scopes a lot faster. The test is simple and non invasive. Results could take a week. Most GI's will meet with you and then r request that test anyway. You have been waiting for such a long time to get in to the GI, it will help move things along and make your first appointment a lot more productive

Any chance he is being glutened (pretty sure I just made up a word)? I guess if you go to scopes you are going to have to reintroduce the gluten anyway so if he has Celiac it will show up.

The road to a GI diagnosis is long. Hang in there mama, you are doing a great job.

 

[Momto6boys]

Oh wow, so sorry to hear about your daughter. Thankfully he hasn't had any vomiting. He's now on day 4 of diarrhea several times a day. His primary care doctor said the specialist would run any tests he needs, his appointment is Monday.
I thought about the gluten, me and him are the only ones that eat strictly non gluten so it's still in our house. However; he only eats a handful of ingredients and I prepare all of his food myself and I haven't been fixing any gluten containing meals lately.
He has said that if it takes him eating gluten again to know for sure if he has Celiac Disease or not, then he will never know because he would never willingly eat gluten. And I definitely agree with him on that! I've had several kids without an epidural, or any pain medicine for that matter, and the few times I've been gluttened it was as bad as full blown labor pains! It's scary stuff, so I can only imagine the pain of Crohn's. Of course I pray he doesn't have anything but constipation, but the stomach pain concerns me greatly. I will update you after his appointment Monday. Thank you for replying!

 

[crohnsinct]

Oh wow! I fell asleep and didn't realize we were already at the end of the month. Yikes! O.K. well since the appointment is Monday sure, nonsense in asking for a fecal calprotectin but remember that test so if GI doesn't mention it, you should ask about it.

Has he been out of the house? Ordered food at a restaurant etc? Gluten free items fried in a fryer that previously handled gluten? Toaster that has toasted gluten bread etc? Also hidden gluten in meds, supplements etc. I am sure you know of all the places gluten can hide but sometimes teens aren't as aware and when they are out four sight we can't control them as much....don't worry I am working on that one and when I figure it out I will let you know the secret.

Good luck Monday.

 

[polly13]

Hi Momto6boys
Hope your appointment with the paed GI went well on Monday.
P

 

[Momto6boys]

Hi Momto6boys
Hope your appointment with the paed GI went well on Monday.
P

Thank you, it did go well. The Dr. ordered a stool sample to test for bacteria and the calprotectin level. I dropped it off at our local hospital today. His weight has dropped to only 1 percent (has been around 5-10 his entire life), so we had to talk with a dietician and she gave him some samples of nutritional shakes. He loved one and it's really healthy, she said the insurance would cover it. So I'm praying it gets approved without any problems. I kept asking his pediatrician about his weight. First time she checked his thyroid levels and said he's just naturally thin, 2nd time he got sent to an endocrinologist. Finally we saw a pediatric gastro! Oh, the gastro said she the stool test results would determine what route she takes next, meaning do that before she does an endoscopy and/or colonoscopy. She ordered him to do a massive colon cleanse, just like he was getting a colonoscopy done. She said it's possible where he still has moderate stool in there to have pain, and that the body may have had the diarrhea episodes due to constipation.
I sure hope that is the case. He's down to just a handful of foods now because he lives in fear the severe pain and diarrhea will return.

 

[Momto6boys]

Oh wow! I fell asleep and didn't realize we were already at the end of the month. Yikes! O.K. well since the appointment is Monday sure, nonsense in asking for a fecal calprotectin but remember that test so if GI doesn't mention it, you should ask about it.

Has he been out of the house? Ordered food at a restaurant etc? Gluten free items fried in a fryer that previously handled gluten? Toaster that has toasted gluten bread etc? Also hidden gluten in meds, supplements etc. I am sure you know of all the places gluten can hide but sometimes teens aren't as aware and when they are out four sight we can't control them as much....don't worry I am working on that one and when I figure it out I will let you know the secret.

Good luck Monday.

Well he is homeschooled, so no outside risk and he refuses to eat out at any restaurant now. The two long trips we made to the specialists, I had to pack his snacks and meals. Believe me it gave me a new understanding of what people with severe food allergies have to do. Not to minimalize food allergies, not at all. I just mean even being gluten free I can still eat out at several different restaurants.

 

[crohnsinct]

This GI sounds better than the last one. If cal pro comes back elevated, it could be IBD but could also be Celiac as Celiac can be known to raise cal pro although it doesn't usually. Either way, an high value will move you to scopes and then will you will know more. Good luck! Glad he liked the shake. Which one was it?

 

[Momto6boys]

This GI sounds better than the last one. If cal pro comes back elevated, it could be IBD but could also be Celiac as Celiac can be known to raise cal pro although it doesn't usually. Either way, an high value will move you to scopes and then will you will know more. Good luck! Glad he liked the shake. Which one was it?

It's Kate's farms. He has been gf for over a year now. I have Celiac disease and when he started having alot of stomach issues last year I did a trial run of no gluten for 10 days. When I reintroduced gluten his stomach was so messed up he didn't eat for 3 days. Bad diarrhea, severe pain.
Of course I took him to the Dr and she said given his symptoms and family history she didn't need to test him, just don't give him gluten again. In hindsight I wish I pushed for the test.

 

[crohnsinct]

Just checking in on you. How are things going? Did calpro level come back? Other stool studies? How is he feeling?