Son With Possible Celiac And Fecal Impaction

[maxsmom]

Last March my 10 healthy active 10 year old became sick & was having massive stomack pain. He had previously experienced constipation and was taking Miralax every other day. A trip to the Pediatrican discovered he had a fecal impaction (confirmed via x-ray) and was told to "clean him out" with Magnesium Citrate for 3 days....next x-ray still showed impacted so we were sent to the "top pediatric GI"...she felt impaction and prescribed another oral clean out then a colonoscopy for additional clean out. By the time she got to the colonoscopy, he was "clean as a whistle"...however he did continue to have the severe stomach pain, so GI prescribed various medications to "calm" his colon, which she said was "spasming" due to the impaction. Poor baby was in a good deal of pain for a couple of months, GI's solution was that maybe we should try Acupuncture....they did fecal tests and blood tests....now not sure for what, since with all my research I asked if Celiac was one of them and told yes. Son has been on Miralax daily since last March...Regular visit to Ped in Dec, had x-ray and he is once again impacted (radiologist said it looked almost identical to March one). Did clean out....saw GI 3 weeks later and he is still impacted....GI says, did we test for Celiac? huh, i thought so...her solution is to go ahead and test for that, but in the meantime make sure he is getting 25 grams of fiber daily, proper water intake and Miralax and ExLax daily...x-ray 2 weeks later still shows impaction...ped says to increase Miralax to 2xs daily and that the Ceiliac test showed increase wheat antibodies, but I should wait to hear from GI on course of action......waited one week for GI to call.....then started calling and leaving messages...Finally after almost 2 weeks GI calls and doesn't know why I'm calling...

Finally...here is where I need help....This damn "specialist" doesnt have the test results, she will have to find them and get back to me..WHAT?!...meanwhile I have figured out that almost 18g of his daily fiber intake comes from WHEAT..while I am waiting from someone to get back to me we are craming him full of gluten, surely that can not be right...I have started him on gluten free, waiting for referral to new GI...if this is truly Celiac, should going gluten free reslove his impaction?

Thanks for letting me get it out...frustrated and angry...any help would be appreciated.

BTW, altho he is not "small", he is always tired and hungry & has "pains"...which I previously attributed to the fact that he was a growing boy, but seeing as how he is a triplet and his brothers aren't like that I am now thinking this also is a symptom of what is wrong....

[ravenwoodglass]

I had fecal impaction as a child and the poor guy must be in incredible pain. If his antibodies were positive then he needs the diet. The GI doctor may want to do an endoscopy, which does have a chance at a false negative, and if you are going to have that done then you do need to keep him on gluten until that is done.

Regardless of the results of the endo with positive bloods he does need the diet and there is a good chance that will do away with the impactions. Do read as much here as you can. The diet does take some precautions other than just making sure that anything he eats or drinks is gluten free. He can't share condiments, butter, nut butters etc with family members that eat gluten. He will need a seperate toaster and you need to make sure you are not using kitchen tools for his food that have been used for gluten foods like strainers and cutting boards.

Give him mostly whole unprocessed foods while he is healing. If he likes sweet potatos those may help to regulate his bowels a bit. I hope he is feeling better soon. Also since he has had positive blood tests it is advised that all in the family get tested even if they don't seem to have symptoms.

[stanleymonkey]

my daughter was constipated, we thought she was having diarrhea turns out it was stuff 'leaking round the sides' since going gluten-free she is a lot better, still constipated but nit the point where she is bloated even get underwear doesn't fit. Our doc said her howls is probably stretched out so will need Miramax for a dew months to lighten over, shrink back and the muscles to tighten back up.

[Roda]

My oldest son(11) had chronic constipation since birth. Nothing worked. It got really bad at around 18 months. I was told to give him lots and lots of apple juice. When that didn't work it was mineral oil mixed with the juice several times a day..YUCK!. Of course that didn't work either so we went on to fleets enemas and suppositories. Nope, didn't help. I finaly insisted on some x-rays. He had a gastrografin enema(x-ray procedure of the colon) at age 2.5. It showed impacted stool the entire lenght of his colon. Luckily the gastrografin enema helped his constipation issue and it did clean him out. He then was put on miralax and was on it till he was almost 4. He still wasn't "regular" but at least he wasn't impacted anymore. Since coming off the mirilax at 4 he has always has issues with not having a BM but maybe once every 4-5 days and would complain of stomach aches and bloating. He would loose his appetite.

I was diagnosed with celiac when he was 7.5. I had him and his brother immediatly blood tested. Both were negative so I figured they were allright. I toyed with the idea to trial him gluten free but never could commit because repeat blood testing was always negative. What really got me convinced to try him gluten free was having his younger brother diagnosed with celiac 15 months ago. I saw the drastic improvements in little brother and it really concerned me that my oldest son had stopped growing and was falling on the growth chart. I had his blood work redone and set up an appointment with a pediatric GI. His blood work was negatve again, but we had him scoped just incase he was a seronegative celiac. His scope/biopsy came up clean, but I stuck to my guns and put him on a three month gluten free trial. OMG! His constipation issues have resolved to where he is going at least every day to every other day, no more gas pains/bloating, his color improved, he gained 6 lbs in 3 months and is slowing starting to grow in height. While technically speaking he doesn't have celiac, I know for certain that gluten is bad news for him. GI doc is on board with us especially given that he has a brother and mom with celiac.

If there is any chance you will be persuing any further testing, keep your son eating a full normal gluten filled diet to ensure the best chance of accurate testing. When you are done with testing I would put him gluten free regardless of the results.

My youngest son did not have a biopsy (had positive blood work) and my husband and I regretted that decison later. I put him back on gluten after him being gluten free for 4.5 months in the hopes to do a full challenge to get a biopsy. The results were disastrous and we had to quit giving it to him just after three days. He reacted so bad that we knew we couldn't put him through that. In hindsite I believe all his issues since an infant were gluten related, but it wasn't until he was almost 6 that it even showed up on blood work. He is how I found out I had celiac. It took me over 2.5 years to figure it out and by then he was 3.5 years old and we thought he was fine so he continued to eat gluten until he was almost 6 when he was diagnosed through his positive bloodwork.

Good luck on this journey. There will be a lot of bumps in the road, but in the end it is worth it to have a happy healthy child! You might want to consider having all his siblings and parents tested also.

[maxsmom]

Wow..thanks for the information. I am currently sooo frustrated with the GI doc. She did call back yesterday with the test results, but she was in the car and on the cell phone so I couldn't quite hear her but basically she said the Celiac (blood) test was negative. So then I wanted to know how we address this fecal impaction, which for all I know he has had since last April. She couldn't really chat about what to do, she was in the car and didn't have the file and thought I just wanted to know the test results...ARGH. Anyway, my biggest concern was now that I am taking him gluten free is that going to mess with any test results or really help him if he is not Celiac.

Your stories really help, we are not alone. Right now my goal is to avoid this GI doc at all costs. Going to do Mag Cit & Enema this weekend and get another x-ray next week and if he is clean I am going to try to ween him off Myralax and keep him gluten free and get another x-ray in 6-8 weeks to see if he is keeping clean, in which case YAY.

BTW, he is pooping every day using Myralax, so we did not know he was "impacted" until the x-ray....unlike last March when he stopped pooping and had massive pain, in which case we knew there was a problem. Dr. does not seem to get that ... I ask how I will know if he gets impacted again and she says "well, he will have the pain again" WHAT...he had no pain this time!

My oldest son(11) had chronic constipation since birth. Nothing worked. It got really bad at around 18 months. I was told to give him lots and lots of apple juice. When that didn't work it was mineral oil mixed with the juice several times a day..YUCK!. Of course that didn't work either so we went on to fleets enemas and suppositories. Nope, didn't help. I finaly insisted on some x-rays. He had a gastrografin enema(x-ray procedure of the colon) at age 2.5. It showed impacted stool the entire lenght of his colon. Luckily the gastrografin enema helped his constipation issue and it did clean him out. He then was put on miralax and was on it till he was almost 4. He still wasn't "regular" but at least he wasn't impacted anymore. Since coming off the mirilax at 4 he has always has issues with not having a BM but maybe once every 4-5 days and would complain of stomach aches and bloating. He would loose his appetite.

I was diagnosed with celiac when he was 7.5. I had him and his brother immediatly blood tested. Both were negative so I figured they were allright. I toyed with the idea to trial him gluten free but never could commit because repeat blood testing was always negative. What really got me convinced to try him gluten free was having his younger brother diagnosed with celiac 15 months ago. I saw the drastic improvements in little brother and it really concerned me that my oldest son had stopped growing and was falling on the growth chart. I had his blood work redone and set up an appointment with a pediatric GI. His blood work was negatve again, but we had him scoped just incase he was a seronegative celiac. His scope/biopsy came up clean, but I stuck to my guns and put him on a three month gluten free trial. OMG! His constipation issues have resolved to where he is going at least every day to every other day, no more gas pains/bloating, his color improved, he gained 6 lbs in 3 months and is slowing starting to grow in height. While technically speaking he doesn't have celiac, I know for certain that gluten is bad news for him. GI doc is on board with us especially given that he has a brother and mom with celiac.

If there is any chance you will be persuing any further testing, keep your son eating a full normal gluten filled diet to ensure the best chance of accurate testing. When you are done with testing I would put him gluten free regardless of the results.

My youngest son did not have a biopsy (had positive blood work) and my husband and I regretted that decison later. I put him back on gluten after him being gluten free for 4.5 months in the hopes to do a full challenge to get a biopsy. The results were disastrous and we had to quit giving it to him just after three days. He reacted so bad that we knew we couldn't put him through that. In hindsite I believe all his issues since an infant were gluten related, but it wasn't until he was almost 6 that it even showed up on blood work. He is how I found out I had celiac. It took me over 2.5 years to figure it out and by then he was 3.5 years old and we thought he was fine so he continued to eat gluten until he was almost 6 when he was diagnosed through his positive bloodwork.

Good luck on this journey. There will be a lot of bumps in the road, but in the end it is worth it to have a happy healthy child! You might want to consider having all his siblings and parents tested also.

[PiecesOfMe]

I cried when I read your post because I could have written that to a tee. My son is 14 and has the same exact problem. I had to pick him up from his friends house at 12:30 this morning after he text me stating he is having pains again in the stomach.

We had the same exact experience as you did with doctors. Xray/magcitrate & miralax/xray to see if he is cleaned out. We paid a fortune for "I don't knows", different prescriptions for ulcers and muscle relaxants that my son refused to take because it made him so groggy he could barely stand and walk. Doctors would question him if he liked school because they thought he was using this as an excuse to get out of school. My son is in leadership classes and advanced classes with A's and B's. He likes school and has a hard time when he is not there, he is a self-directed kid. This gut problem is frustrating him to no end.

I know exactly what you are going through. Please keep us updated because if I can find the answer through your post, it would be helpful.

Also, I am taking him to the doctor today. Thank goodness we changed insurances the first of this year because the last one (Group Hell) couldn't figure it out as stated above.

[researchmomma]

I had to chime in. My daughter has had fecal impaction since she was 6 years old (that was when we had the first xray). We had negative blood work (low IgA) for Celiac and no genes so they refused biopsy. We eliminated gluten 6 weeks ago. She always has been constipated and after 6 weeks, she doesn't seem constipated! Her stools are soft. This is brand new for us and it is great. Never thought I would be so excited about poop!

[Marlie]

My child had severe stomach pain about a year and a half ago and everyone thought it was appendicitis so was sent to ER. After 2nd trip to ER in 24 hours they did an xray and found a clog in her intestines. Fortunately they did Celiac testing while she was admitted and the DGP IGA and DGP IGG tests were positive. About a month later they did an endoscopy which showed no damage to the Villi and negative for genes but had lymphocytis (sp?). After being Gluten free due to initial testing, went back and saw GI who said she wasn't Celiac, so we slowly added back Gluten. Six months later we took her back Gluten Free after lots of post nasal drip problems. If she eats Gluten she will have severe stomach pains and bloat. I don't care what the doctors say but she has issues with Gluten and I don't need a prescription to manage it, so I don't really give a darn. Blockages were never a problem until that one time, but she has been sick with many other things, so I guess we kind of got lucky. By the way, she was negative on all other blood panels.

[PiecesOfMe]

Update on my son's status:

He got the flu Wednesday. He was colder than an iceburg while hot on the outside and his gut was hurting and his knee caps were on fire he said. I felt bad because it was a huge deadline at work and his dad was locked in jury. His dad made a doctor appointment after work but got tied up so I took him. This doctor asked questions and was intrigued by his 1+ year long painful stomach problems. He listened to my son as my son told him about all the doctors and specialist and the tests he's had. The doctor turned and said "Has he ever been tested for a gluten problem" I said yes but the only did a base test and nothing more. He then said "Do you know that 25 out 100 people are gluten sensitive?" and "The tests they have are way behind the times. You should do the simplest test of all, take him off gluten food first, then if that is not the problem, then next comes no gluten and no dairy, if that fixes it, then put him slowly back on gluten and see how that goes." "If it is still a problem, then we need to seek other avenues and testing." Now, my DH is on board with gluten free since a doctor said this.

Finally, a break through!