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Crohn's Disease Forum » Parents of Kids with IBD » Crohns with no symptoms?


 
09-03-2011, 01:31 PM   #1
BoyMama2000
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Crohns with no symptoms?

Hi Everyone,

My 13 year old son has not gained weight in 2 years and fell off of his growth curve. He was worked up by an endocrinologist with many of the more common growth conditions ruled out. The final condition to rule out before we would just determine that he is a "late bloomer" was celiac disease.

He had an endoscopy on Thursday and the doctor called me today to say that the pathologist thinks he has Chron's disease. His stomach is swollen and had a granuloma as well as ulcers. His duodenum was also swollen. They do not feel it is celiac disease.

The strange thing is that he has normal bowels, no stomach pain, no acid indigestion, normal SED rate and iron levels on blood work. This was just an incidental finding on the endoscopy looking for Celiac.

They will call us on Tuesday to schedule a colonoscopy and do a blood panel for inflammatory bowel disease. They will also likely do a barium swallow and the endoscopy where he swallows a small camera to view the area of the colon that cannot be viewed by a normal scope.

So my questions is, have any of you been diagnosed with no symptoms of this disease. Could diminished growth and weight gain be the only sign? Do we put him on meds for this without any symptoms. I know it is important to put it in remission.

Any insight would be greatly appreciated.

Regards,
Concerned mom in Colorado
09-03-2011, 02:04 PM   #2
stella_luna
 
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My Crohn's is like this. I am totally asymptomatic while flaring. Which is awful, because I was eventually diagnosed because I developed a very tight stricture (caused by years of inflammation) that caused a bowel obstruction.

After that obstruction, I had a colonoscopy. I felt great going into it, as usual. I was sure they'd find nothing. But there was so much inflammation the doctor could not get the scope around the first bend of intestine. I was completely closed up owing to inflammation. I had tons of ulcerations and internal hemorrhoids as well. Crohn's!

If I had had symptoms and been treated, I might not have developed the stricture, which has pretty much ruined my life. Even after surgery (which happened right after my diagnosis), I still can eat almost nothing, and suffer repeated bowel obstructions. I wish I had been diagnosed before my intestines were destroyed. Trust me . . . even if he has no symptoms, if he has Crohn's your son absolutely should be treated.
09-03-2011, 07:20 PM   #3
DustyKat
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Hi and

As Stella has said, yes it is possible to have the failure to thrive as the only symptom. The tests he has already had done are showing physical changes to the bowel so I think it would only be a matter of time before those changes presented themselves to you in a more obvious manner...perhaps pain, nausea, vomiting...that sort of thing.

Chronic inflammation, such as that with IBD, will postpone the onset of puberty and it is possible for the inflammation to be present for quite a period of time before symptoms do present. Even without outward symptoms damage will be happening on the inside, so yes, I would start treatment based on the upcoming test results.
My son, diagnosed last December, had next to no symptoms of Crohns and if his sister hadn't been diagnosed with it I wouldn't have even taken him to the doctor and asked for bloods to be done. At the time he had no pain, normal bowel motions, was growing, wasn't losing weight, just had a couple of random vomits and off his food for a week, that was it. Two weeks later he had his diagnosis but it had obviously been present for many, many months, perhaps even a year. It was his raised CRP (inflammatory marker) that set the alarms bell off.

I hope all goes well for your boy with the tests Mum and you get some solid answers. Granulomas are often a positive sign of Crohns disease and biopsies will be able to determine if coeliac is present.

Good luck and welcome aboard!

Thinking of you,
Dusty. xxx
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09-03-2011, 09:10 PM   #4
DustyKat
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PS. Does he have suffer with any other problems e.g. headaches, rashes, eye problems, joint aches?

Dusty. xxx
09-04-2011, 05:27 PM   #5
Sascot
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Good luck with all the tests coming up - it is certainly better knowing earlier rather than later. My son's only symptom was a sore tummy once every couple of months and a bit of tiredness (which I put down to hormones). My son is growing fine and has never lost weight but I am glad it is now being treated so that the other symptoms won't happen now.
09-04-2011, 07:12 PM   #6
BoyMama2000
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DS has normal Sed rate and CRP. He had hives once when he was 5 and went through some time where he had canker sores in his mouth but has not had any in 2 years. He also got migraines but not in several years. So no real significant things in the recent past.

If he has this, growth delay would be the only sign. His doctor is ordering the IBD blood panel when we do the colonoscopy so maybe something will show up then.

How did you all present this to your kids? How do they tolerate the meds?

Thanks for your input and support.
09-05-2011, 10:19 AM   #7
dodie
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Hi BoyMama2000, your story sounds exactly like my son too. MY son was diagnosed last year with crohns after tests including barium, colonoscopy, endoscopy and camera capsule. He showed no signs either, his poos were normal and regular and had the odd sore tum. He did have an abcess by his anus which he had surgery for and at that time i didnt realise that is a link to crohns too ( few years back i had same problem and i dont have crohns) also, his tummy would swell up so thats when i took him straight to doctors who referred him to a chidrens hospital ( i should mention my husband has crohns so thats why it all moved so quickly, thank goodness). Looking back now when i think of the swollen tum and alot of gas it all makes sense. He is currently on meds for his crohns and is so full of energy and no more swollen tummys etc. I hope your son gets on ok too. take care. xx
09-05-2011, 10:26 AM   #8
BoyMama2000
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If DS does end up with Chrons, have any of you had kids with growth delay? How did the treatment help with growth. Although he has no stomach pain or symptoms really anywhere, his growth started to slow 2 years ago. He has not gained any weight in 2 years but has not lost either. He has only grown about an inch a year. He had a growth hormone stimulation test because his IGF-1 was on the low side.

I was just curious if the treatment will help growth if they do determine this is Chrons. Does anyone have kids with involvement in their stomach like him?

As you can see, I am full of questions....sorry!


Thanks again for your input!
09-05-2011, 10:32 AM   #9
dodie
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yea my son is small for his age and like your son he hasnt lost any weight, maybe gained couple of ounces but thats it. He also had a dexa scan which looked at his bones, all lookes ok, thank goodness. My son has a bit of crohns in his stomach too but as i said before he seems to be doing fine at the moment. I dont know if the meds help with growth but all i know is that kids with crohns just develop more slowly than others. x
09-05-2011, 10:52 AM   #10
BoyMama2000
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Thanks for your information. May I ask how your husband is doing and how old he was when he was diagnosed?

Where was the Chrons disease found in your son other than the small amount in his stomach?

Thanks.
09-05-2011, 11:30 AM   #11
dodie
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My husband was about 29 when he was diagnosed, he is now 35 and doing great, he is only on pentasa and calcium tablets. he cant eat egg white as that triggers a flare for him. My son has an area in his stomach, ileum and his anus. He can eat almost anything as i cant pinpoint any foods that trigger flares as he doesnt show symtoms, is very hard to understand because he looks n feels well. x
09-05-2011, 06:47 PM   #12
Dexky
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Hi BoyMama, welcome! My son stopped growing as well but after nearing two years of treatments, he has caught up quite a bit. He does have a way to go to match most kids his age but he is nearly the oldest in his class so that helps even things out some.
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09-06-2011, 10:32 AM   #13
Brian'sMom
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My son was a small kindergartner and after an antibiotic he had a couple month bout with diarrhea, but then it cleared up. He wasn't having any bowel issues so we thought he was fine. He seemed to slow down in growth, but it didn't really become noticeable until beginning of 4th grade (all the other boys were having growth spurts.) Before we just thought he was small because I'm small. End of 4th grade he started having cramps and diarrhea that persisted again. We took him in and they did tests, low and behold, he was having damage in his large intestine...he had crohn's and we didn't even know it. Probably, looking back, his size was his only symptom that we could 'see' the first few years. But a lot of people in my family tree are small and skinny, but no one has crohn's. That's the scary thing about crohn's...you can think everything is ok, but it isn't. A colonoscopy and blood work is the really only way to tell if everything is ok.

ps. I also noticed (and thought it was wierd, but ignored) his shoe size didn't change. I'd buy him new shoes, and they'd be the same size as year before. His clothes sizes changed slightly.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
09-06-2011, 05:49 PM   #14
BoyMama2000
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So glad to know that if it is Chrons, he can have catch up growth. We won't get the colonoscopy until Sept 22nd. Wish it was sooner. I am hoping to get his blood work done tomorrow morning so it will be done at the time of the colonoscopy.

Do any of your kids have Chrons in their stomach? I know it is an unusual location. That is one of the reasons they are questioning it.

How did your kids do on the medications?

Thanks for your input. My son's shoe size hasn't changed much either. He is older but it is still strange. I am not sure but he may have had a little growth spurt recently. His height at the Endocrine doctor in early July was 3/4 inch shorter than at the GI doc in mid-August. They both use the bubble measures that seem pretty accurate and were taken the same time of day so perhaps he is growing.

So many questions, so few answers right now.

Again, thanks for your feedback.
09-07-2011, 05:58 AM   #15
DustyKat
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Sarah didn't even look like going through puberty prior to her diagnosis at 14 1/2. She was thin as stick and the shortest in her year. She did require emergency surgery and as a result went straight into remission, the first 6 months post op there wasn't a lot of change but I didn't expect there would be. The next 12 months however was like fitting 3 or 4 years into 1, the change was jaw dropping!

My children don't have Crohns in their stomach but I know there have been others here with children that do.

Both of my children have had surgery and post operatively have responded well to maintenance medication. My son is early days yet but my daughter has now been in remission for 5 years.

Keep asking Mum and we will do our best to help you out!

Dusty. xxx
10-04-2011, 08:50 PM   #16
BoyMama2000
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Thanks so much for all of your help. I wanted to give you the results of our visit to the specialist today. I am curious what you all think.

This doctor does not feel the need to aggressively look for Crohnís disease at this time. He felt that with no signs or symptoms of the disease, he had other things he wants to look at before doing a bunch of invasive tests. He said that granulomas can occur with other things and that even if they saw some inflammation on colonoscopy right now, they still may not do anything about it at this time. He talked about the struggle they have these days when we learn so much more about what is going on in the body and have to decide if it really is something that needs to be treated when there are no clinical signs of a problem.

So, the initial plan is this:
1- He did another blood test for Celiac disease (IgG assays, deamidated gliadin peptide and tta). He still feels this is a possibility. If the blood work is positive, he will go on a gluten free diet. Once he is on the diet if his growth pattern changes, it would confirm Celiac disease. This still would not 100% rule out Crohns however but would help his growth.
2- He ordered another test for chronic granulomatous disease. This is an illness that can be horrible but donít be alarmed if you google it. There are some mild forms of this and my DS never gets sick so it will likely be something just good for us to know about. Time will tell on that one. Hopefully this is not an issue if it could become as serious as the internet states!
3- He is having his bone age x-ray looked at again since one doctor said it was age 13 and the other said it was 10.5. He asked for a specific radiologist to review it.
4- He will also have Sean follow up with an endocrinologist at Childrens.

If the bone age is 10.5 and the above tests are negative, he will want to give things some time before doing more testing.
If the bone age is closer to his true age, he will want to be more aggressive and will do some more stool studies, capsule endoscopy and possibly colonoscopy like the first doctor was planning to do. This is because we will need to be more aggressive to take advantage of the time his bones have to grow.

My take was that he was less concerned about diagnosing Crohnís disease right now than the first GI doctor and would only do so if he develops symptoms or if his bone age is around 13. He did not feel that the granuloma eliminated the possibility of Celiac disease like his first GI doc. He also still thinks that simple delay of growth and puberty is a possibility.

We should get the results of the blood work and bone x-ray in about a week.

My son seemed fine with everything. His main focus was would we get out of there quick enough so he could eat lunch in a restaurant before he had to get back to school!

What do you all think? I did ask him about fistula's developing without symptoms and he said that that some type of symptoms will happen before fistula's develop.

I guess I am glad in a way that he is less convinced of Crohn's but I also would feel better knowing and not playing a waiting game. I guess we do need to really know about Celiac Disease because that is a fairly common reason for growth and puberty delay and the sooner he goes gluten free, then sooner we can see if he will grow!

Thanks again
10-04-2011, 09:28 PM   #17
DustyKat
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Oh man, this is a tricky question only for the fact that many here have waited, myself included, and wished we hadn't, but then again we were perhaps looking at symptoms your son isn't experiencing.

After being through what I have I am biased and would most likely always say push ahead and go on the offensive.

I would imagine the pathologist thought it was Crohn's over Coeliac not only due to the granuloma but because of the structures affected. I always thought Coeliac was a disease of the small bowel, not stomach. A colonoscopy is invasive, the same as the endoscopy, but I wouldn't regard it as aggressive and by having one done small bowel biopsies can be collected that can rule both Crohns and Coeliac in or out. I think I would prefer to go this way rather than than wait.

Dusty. xxx
10-10-2011, 06:02 AM   #18
Dexky
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I agree with Dusty! Keep pushing for a definite dx. As Dusty can certainly attest, things can go very wrong even while remaining symptomless!
10-10-2011, 08:34 AM   #19
BoyMama2000
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Thanks, I hope to hear in the next day or so about the blood work and bone age x-ray.

I do plan to ask more questions if the blood work does not show Celiac and the bone age is young. That is when they wanted to do the "wait and see" approach.

I will push for the stool testing and possible colonoscopy. I would feel better really knowing what may (or may not) be going on inside of him.

I did read about a case or two where a gluten free diet did cause granuloma and ulcers in the stomach so if he tests positive for Celiac, I will do the gluten free diet with him and then ask for another endoscopy in a few months to see if that made a difference. I guess if he grows a lot or if the blood work normalized, we may be able to avoid endoscopy but since Crohns and Celiac can be found together, I think I would still push for a 2nd endoscopy.

Do you know if anyone gets treatment paid for by their insurance for Crohns in they don't have symptoms. That could be another battle but I guess I am getting a little too far ahead of myself.

The waiting game is no fun! I try to slow my brain down, but it is hard sometimes!

Thanks for all of your help and support!
10-10-2011, 08:50 AM   #20
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My son has no symptoms other than slowed growth. In the past six years he has had varying degrees of what we only now know and recognize as symptoms "for him" of crohn's disease.

He was just recently diagnosed (July/Aug) through colonoscopy/endoscopy....but ALL of his blood work was within normal ranges.....his sed rate was only a 17. The IBD panel came back positive on one marker....and it too was very mild. He has normal stools and complains of nothing bothering him whatsoever. Over the long journey to put his medical puzzle together he has had minor extraintestinal symptoms.....but his blood work has always been normal just as your son. We are currently in the process of deciding a treatment plan.

His Gastro would like him on Apriso (5-ASA), but we are struggling with the same thing you are.....it is very hard to medicate your child when they appear to be in great health, just on the small side. We have consulted with other physicians, nutritionists and researched like crazy and still we are struggling with the decision before us.....But you have come to the right place in visiting this board.....I love to read the advice from people going through this process, either as a patient or a support person. What I have learned is that none of us are alone.....and that one treatment doesn't fit all people....this is a very personal disease....it is different for everyone going through it.....but it is nice to know that others are there for you and that you don't have to suffer in silence. I am sorry if I was not helpful to you....I just read your post and totally identified with what you are living......

Hugs
10-10-2011, 09:53 AM   #21
BoyMama2000
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Our stories do sound very similar. If you don't mind my asking, what did they find on colonoscopy/endoscopy that lead them to this diagnosis. Did they ever test your son for Celiac, growth hormone etc?

It would be interesting to see if he does start on medication, if that effects his growth. That would let you know he needs the treatment. If he remained symptom free through puberty, you could always try taking him and and see how he does.

How old is your son?

Thanks for posting. It is very helpful to hear real stories that are similar. I appreciate all of your time.
10-10-2011, 10:18 AM   #22
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BoyMama2000,

My son is 10 years old.
The first time he was scoped, although the Gastro thought his intestines looked inflamed and abnormal the pathology was not positive.....that was when he was about 4/5 yrs old....In July his new Doctor was able to access the terminal ileum and that was not previously done....it is apparently very difficult to get to....but it is one of the more common places for Crohn's disease to be found.....his Dr. saw ulcerations and inflammation present there and only there....so it could have been present 6 yrs ago but that Gastro did not check that location. His pathology came back positive from this location in his intestines. If you are to follow through with the scopes on your son, I would encourage you to make sure your child's doctor checks his terminal ileum during the scope. My son, has been tested for everything under the sun including celiac disease (my mother has Celiac so we have had him tested several times and has been negative) He has also had the bone scans done to determine his bone age (which was that of an 8 1/2 yr old)....and is under the care of an endocronologist as well.....literally, he has been through the ringer to get this diagnosis...all while appearing to be the picture of health....other than being the smallest kiddo in 5th grade!

His father and I, have also wondered if the Apriso would help cut down the inflammation in order for him to grow....we have been told that the terminal ileum is where all the nutrients are absorbed....so if we could get the inflammation under control he may begin to grow....possibly catch up to his peers. It is just the side effects and unknowns of the meds in children that scare us.....he seems so healthy and I refuse to medicate out of fear.....but, at the same time the fear of not knowing what is actually going on inside of him is so frightening.....this is without a doubt the hardest thing about all of this.....his doctor wants him on the 5 ASA for a min of 5 years.....but he can't explain why the 5 years...and told us that there really is no way to know if it is making a difference unless we scope him again....and none of us want to keep doing that to him....but his blood work is fine now....so being on medicine won't really tell us anything more in that respect either......such a confusing process.
10-10-2011, 10:45 AM   #23
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I would advise you to keep pushing for a colonoscopy. You need to rule crohn's out if nothing else so you know there is no ongoing damage going on while it is not being treated. My son is small for his age, did not grow for ages and had the same shoe size for almost two years. He did have lots of symptoms of crohn's but i was told it was all in his head and really had to push after basically diagnosing him myself. You are his best advocate and you need to be active on his behalf. Good luck I hope you get some answers soon.
10-10-2011, 11:13 AM   #24
BoyMama2000
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I know this would be very hard to do but have you guys considered an entereal diet? There is a lot of info about this on here. It seems to work as well as predinisone in many cases to reduce inflammation. It also may be even better for growth since he will get added nutrition.

If that changed his growth, you would know the inflammation in his iliem was effecting his growth without the side effects of the meds. I know it would be hard to explain to a 10 year old (I have one who just turned 11) that he has to stop eating regular food for a while, but it could be worth a try. Your doctor could prescribe the drinks. I know it is done a lot in England and there are a lot of people on here who could help.

My son does have an excellent doctor who did say he would need to see the terminal ilieum. My son's bone age x-rays were read totally differently by 2 different doctors so we are waiting for a 3rd opinion today or tomorrow.

The radiologist said it was 13 (he is 13) and the endocrinologist said it was 10.5 years old! Quite a difference!
10-10-2011, 11:26 AM   #25
Farran7
 
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Don't you just love hearing drastically different info from 2 professionals....geez...it is hard enough just to muddle through all of the research out there without having to question your doctor too!

We have considered the EN....his doctor mentioned that, but cautioned us that it would drastically change his quality of life...and felt that this would be an extreme way of treating our son.....this doc is our 2nd opinion doc and he is top in his field at the Children's hospital we are with.....but, we do feel like he is pro-pill at this point. We don't disagree about the medication.....just weighing all our options. We currently have our son on prevacid, and he takes several supplements and vitamins.....we meet with his Gastro next week to finalize a plan.....however, we are consulting with a nutritionist that specializing in "healing the gut," and will most likely continue to see her on the side for alternative treatments. She has him taking a supplement called Inflammacore it is supposed to reduce inflammation in the gut....I mix in it a smoothie for him every day....he gets some extra calories this way as well....we'll see....just started this routine last week.

I am glad to hear that your son's doctor already mentioned the Terminal ileum to you....if we had known that 6 years ago.....we may have avoided the goose chase! It sounds like you have a good doc, and you are on your way to an answer. When will you decide about your son's scope...or are you waiting on the 3rd opinion on bone age?
10-10-2011, 11:53 AM   #26
BoyMama2000
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I forgot to mention that if his bone age is older (13 or so), he will do more aggressive testing right now without me needed to ask because we will want to take advantage of the time he has left to grow.
10-10-2011, 12:00 PM   #27
BoyMama2000
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I am not sure if this will help but my husband was diagnosed with ulcerative colitis at age 22. He was hospitalized for 2 weeks and it was so severe they considered a colectomy at that young age!

He was discharged with sulfasalazine which he took for a year (when I first started dating him), he then took it PRN for about 6 months. He had absolutely no side effects with this med at all.

After that, his symptoms never returned (bloody D), he never took it again and repeat colonoscopies at age 32 and 40 were completely normal with no signs of UC. His life insurance actually went down at age 40 when we submitted his colonoscopy records to our insurance company.

His GI doc at age 40 told us it probably wasn't UC but some infectious agent but now we wonder!

I also have a friend with Crohns who was diagnosed with it at age 17. He has been on sulfasalazine for 25 years, has had 4 healthy kids (so far) and no side effects. The newer forms of 5-ASA seem even better. His doc is afraid to change him since he has done so well for so many years. He only had 1 flare in college when he stopped taking his meds for a while.

So, there are people who can tolerate these meds very well!
10-11-2011, 06:04 PM   #28
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Oh wow! I'm going through something similar right now...My daughter has had some joint pain, low grade temps and conjuctivitis that caused a scleral bleed in both eyes. Took her to a Rheumatologist...who called last week and said he spoke with a GI doc who wants to see her....the thing that has tipped them off the most to a possible problem is she basically hasn't grown for two years...went from 50th percentile to 3rd in height and weight. No GI symptoms...just an occasional tummy ache!

She has her appt on Nov 3rd with the Ped GI.
10-11-2011, 06:15 PM   #29
BoyMama2000
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Hi Everyone,

I heard from the GI doctor earlier today and this is what he said and the plan:

Bone Age x-ray-
The latest doctor to read his bone age x-ray felt it was near his real age. The first radiologist thought it was his real age but endocrinologist thought it was 10.5 and not 13! So now we have two that agree on 13.

IgA -
He is truly deficient in IgA.

Celiac panel that can be done with IgA deficiency -
(tissue transglutaminase antibody IgG and deamidated gliadin peptide)
They did test positive for Celiac Disease

Now for the plan....
His office will call in the next day or so to schedule a repeat endoscopy, a colonoscopy and a capsule endoscopy all to be done on the same day. He gave me the option to do the capsule on another day but I think it would be best to get it all done at once even though he won't be able to eat for a few hours after the colonoscopy.

Here is what he said.... on his prior endoscopy the villus atrophy that was seen was only a small portion of the duodenal bulb...first few inches. That can be Celiac but even with the blood work and the small amount of villus atrophy, he is not totally convinced it is Celiac and the only way to totally prove that would be a positive result from a gluten free diet. He is also not convinced that this would truly be enough damage to cause malabsorption and therefore growth issues. The rest of the duodemnum looked fine.

Granulomas can be seen a lot of other times and since he has no other signs of Crohns, he wouldn't jump to that very quickly either.

However, since the latest bone age x-ray does show his bone age is 13, we need to be more aggressive at ruling this out. If it was 10.5, he would tell me to have him go on a gluten free diet and see what happens with his growth.

I hope we can get this done quickly. I feel like we are racing against time since now it appears his bone age is older. We need to figure out why he has stopped growing! I read this forum and know this can take a while. We have been searching for a potential reason for his growth issues for 5 months now. We are extremely lucky that he feels well but I hear the clock ticking so that if he does have Crohns or Celiac, we can start treatment that will allow him to grow!

We have a good friend who is an orthopedic surgeon. He doesn't typically read bone age x-rays but he did for his own kids since they have endocrine issues. I am giving him a CD of his x-ray to see what he thinks.

So, do any of you have advice for me? Have those of you with kids with growth issues had similar experiences with bone age readings? I am glad that we are going to get all of this testing done and that we are with a doctor who truly is an expert in Celiac and Crohns. It is great that he will see my son's GI tract for himself!

Thanks for reading this long post!
10-17-2011, 05:35 AM   #30
Dexky
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A bone age test was never mentioned for us but EJ was quickly dxed and soon began growing after treatment started. I hope you get answers soon so he can have similar results!
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