A Tmi Question About My Kids'- I Really Need Your Help Please!

[MitziG]

Two kids, 8 & 13, both DX celiacs. 8 yr old has had huge relief from going gluten-free 18 mos ago. No more constant belly aches, better behavior, decreased anxiety/ depression. Went casein free as well approximately 3 months ago due to eczema and has helped even more. Problem- he still complains about a constant dull ache in lower right quadrant. (Not appendix, this has been going on for months) I suspect constipation, but he eats tons of fiber (major fruit eater) and very few processed foods (Rice Chex and occasionally gluten-free pasta- maybe 1 to 2 x mo) doesn't care for bread, kind of lives on fruit and a little meat.

13 yo daughter- felt much better B4 dx 18 mos ago. Her occasional IBS type symptoms of before have morphed into constant alternating bouts of constipation and diarrhea. She too is casein free 3 mos due to eczema, but her tummy issues have worsened actually. Everything she eats upsets her stomach it seems. She complains of lower rt and left quadrant pain, alternating. Weird part, she says she can FEEL poop moving through her intestines. My 8 yr old says he can too. What?! She is a major grain eater, so I have had her cut way back to ONE servings of grain a day (usually Rice Chex or Udis bread) kids a sugar junkie and snitches sugary processed crap any chance she gets. I don't buy it much, but if I do, I have to lock it up or she will eat it all. It is like a crack addiction, seriously that bad. She used to be that way with cheese until we went dairy free and I stopped buying it, so I suspect thhere is another intolerance at play here. The poor kid is always sick though- vomits 2 - 3 times a month from "mystery gluten" (our whole house is gluten-free due to kids and me being celiac...and we rarely eat out...so we suspect public surfaces usually as the source of her glutenings. And no, she isn't cheating. She is scared to eat anything that isn't made at home, and cross examines me over any gluten-free product I buy to make sure it is safe. She lives in terror of gluten) besides the vomiting, there is the constant bellyaches and diarrhea/ constipation.

I'm really at a loss. I am loathe to eliminate another food group (tho we r basically soy free since I don't do processed foods)

Is she chronically constipated I wonder? Could this cause it to end weekly in bouts od diarrhea? I have speculated that she may be as a rebound effect from her constant mystery glutenings, but I don't know what else I can do short of put her in a bubble. Both kids are homeschooled already.

On the other hand, after 30 years of being un-dx, I feel so great by comparison now. I feel guilty for the kids, especially my daughter as she was in better shape BEFORE she went gluten free! I know it was just a matter of time, but still, I feel bad for her.

Any thoughts?

[Mom2J112903]

Do your children have a GI? Sounds like chronic constipation/IBS issues to me. Reminds me some of my son whose motility is junky thru-out his entire GI system. His LLQ is where the most of his pain is as that is where we can see on x-ray things WAY out of porption (colon MASSIVELY enlarged) but has also had the RUQ pain and that is from things trying to move along as well. I would bring it up to the GI and ask them to do some form of motility study on both of them. If there is a gastric emptying problem, whole grain can be very difficult to digest. Check out a GP/DGE (Gastroparesis/Delayed Gastric Emptying) diet if you think this could be the problem but I urge you to talk to the GI.

[kareng]

Do you know how often they poop and how much? I know they are a little old for a bathroom monitor, but because they are having issues, it might be good to look and keep track of. This might help you to know if they are constipated or not. Would give you something definite to show a doctor?

[MitziG]

No, they don't have a GI. The ped GI who dx my son is a jerk who first insisted there was nothing wrong with him, and only found celiacs when I made him scope him. Then when I wanted to have his vitamin levels checked because of his depression/ anxiety he told me there was no need and to stop believing in "internet hoakum"

Daughters GI was nicer, but clueless. He was shocked that the biopsy showed celiacs because everything "looked good" to him and he has been doing this 40 years. By then son was already dx so he sent us out the door with, "you know what to do. Good luck." Perhaps I need to start looking for a knowledgeable one though- hard to find in rural Iowa.

I keep asking them if they poop, and they say yes...and I try to get answers about consistency, ut they are pretty vague. Daughter is embarrassed and son doesn't pay attention. I keep telling him to tell me when he goes so I can see it, but he forgets. Or goes while I am at work. Or so he says.

Son had gastroparesis at time of dx, I don't know if it has totally resolved on the gluten-free diet or not.

[Mom2J112903]

Gastroparesis will not resolve on a gluten-free diet we have DGE in addition to Celiac and other GI disorders. Celiac was found before the motility issues were found for us.

Open Original Shared Link

Open Original Shared Link

And I totally understand about the "did you poop, what kind, what color, etc" questions and kiddos not wanting to tell you or flusing before we can look. Poop is so important in this house and my son will be 9 in Nov, he hates the poop talk! Too bad kiddo

[MitziG]

Hmmm. At the time, the doctor made it sound as though it was being caused by the celiac, and never suggested any follow up care. (This would be the "internet hoakum" doctor. ) my son had been on PPIs for 2 yrs by that time, and my research said they can also cause it, so my thinking was no gluten, no PPIs....no gastroparesis. But maybe not.

I will definitely be following up on this. May just have to make the 4 hour drive to the Celiac Center at Iowa City. THEY should be able to help!

[Mom2J112903]

I am wondering how Celiac could cause DGE or other motility problems? I am very curious though since we have every part of my son's GI system dysfunctional in one way or another. I am always on the hunt for answers

My son has been on PPIs since a very tender age but we had no choice as he was refluxing several times a day and large amts. The DGE (which he has most likely had since birth) was most likely causing some of the vomiting though because it was LARGE amts and often after a feed.

[gary'sgirl]

I have abdominal pain from C, like you describe. That would be my guess for the pain.

I'm sure you have heard this before, but I just wanted to mention it in case you haven't. Many people who are more sensitive to small amounts of CC can't tolerate gluten free Chex. If I remember right they make the gluten free chex on the same equipment as the other chex.

This article mentions that they test the gluten-free chex down to 20ppm's, but that is too much for my kids and I.

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If we are exposed to really low amounts that we don't react to right away, we will react with repeated exposure.

That's just something I thought you could try first to see if it helps.

I hope you can figure things out for all of you - it's a really long road sometimes, but in the end, when everyone starts to feel well again it will be worth it. Don't give up!!

Wish you the best!

[MitziG]

Hmmm, no I hadn't heard about Chex. She eats gluten-free rice Krispies too- but Chex is the usual so I may have to rethink that.

[Darn210]

I am wondering how Celiac could cause DGE or other motility problems? I am very curious though since we have every part of my son's GI system dysfunctional in one way or another. I am always on the hunt for answers

My daughter had reduced motility. "Gastroparesis" was tossed about. Her GI said that it can be caused by Celiac Disease and can resolve once gluten free. The explanation was that the celiac disease caused nerve damage (slowing down the digestive process) and once the nerves regenerated (which can take some time) the gastroparesis will resolve. He thought there would be a good chance that it would resolve and it appears that it did. It took about 10 months of gluten free. Whether that was the mechanism that was truly going on, who knows for sure.

[mommida]

I suggest you find a pediatric gastroenterologist try find out if there is a misdiagnoses here. It is possible to have more than one auto-immune issue. If the lab work wasn't ordered for eosinophil count, the kids weren't tested for it.

There is now a known connection to Eosinophilic Esophagitus and Celiac. Eosinophilic conditions can exist anywhere throughout the GI track. (The symptoms for EoE were like "glutening" reaction. Constipation is a constant batlle in this house even though we et so many fruits and vegetables.

[Mom2J112903]

My daughter had reduced motility. "Gastroparesis" was tossed about. Her GI said that it can be caused by Celiac Disease and can resolve once gluten free. The explanation was that the celiac disease caused nerve damage (slowing down the digestive process) and once the nerves regenerated (which can take some time) the gastroparesis will resolve. He thought there would be a good chance that it would resolve and it appears that it did. It took about 10 months of gluten free. Whether that was the mechanism that was truly going on, who knows for sure.

Thinking outloud, forgive me...

If the Celia being damaged can cause nerve damage which would slow the digestion process, that would be dymotility in the small intestine not the stomach. Yes chances are if you haev dysmotility in one area of your GI sytem, the entire GI system will be affected. My son's very first UGI shows DGE among other things we were never told about until we got the report ourselves years later. His first one was done at less than 6wks of age and the only gluten he had been exposed to was what was in my breastmilk. Although he started at birth with GI symptoms, vomited his entire feed up after his first nursing session. Nurses tried to tell me that was normal and it wasn't breastmilk but amniotic fluid. I didn't buy it.

[MitziG]

Neither of them have any reflux issues, or heartburn type symptoms (though DS DID have for years prior to celiac DX, hence the PPIs. From what I just googled about EoE that would seem to rule that out then, wouldn't it?

Last night, DD had hamburger, lettuce and tomato on a corn taco shell (Ortega) She had stomach ache and diarrhea until 6 am this morning.

This happens several times a week. Her sleep schedule is trashed because of it. She has no energy. I don't blame her. She is also losing weight because she doesn't eat much, and what she does eat doesn't stay in.

She was a teeny bit chunky before going Gluten-free Casein-free, so the first few pounds were fine. But I don't want her to lose anymore!

I guess I need to get her to a GI. Just so frustrating because my experience with them so far has been they just don't know much and I hate the idea of starting this whole tail-chasing scenario all over again. We spent 3 years doing nothing but dr appts it seems, and NONE of us want to start up again!

[mommida]

Sorry I ran out of time to really finish that post.

EgD (eosinophilic digestive disorders) are just an example of other issues that exist along with Celiac. (diagnoses have been going up recently). Since they have been describing sensations of stool moving through them, it may be time for a colonoscopy. I don't have the most recent numbers for Crohn's or Coloitis connections to Celiac.

My daughter's symptoms for EoE was like a gluten reaction. "D", vomitting, tummy pain, and constipation. Never had food stuck in her throat or difficulty swallowing.

You are going to need a doctor's help to diagnose any Celiac complications or a secondary condition.

[Mom2J112903]

I have been hearing more and more people whom have Celiac have an IBD, but then again my son has many symptoms of IBD but not a formal dx so I have been looking for a connection and speaking with many different people.

I often wonder if my son has EoE even though bx says no but we all now you have to get the bx in the right place ohterwise the test is pointless.

[Kelsmom]

Hi, I don't know if this will help you at all...but my daughter (8yrs old) was diagnosed back in April 12') She is so gluten sensitive that the littlest bread crumbs will set her up for being so ill all night long. After she was diagnosed and we started gluten free, she was experiencing pains like you have described. I journaled everything, read every label and scratched our heads trying to figure out what was making her sick. Finally, one day she said to me, "Mommy, i have been eating the (gluten free) Cinnamon Rice Chex everyday and since then I have been sick". Sure enough, I read the label and one of the ingredients is Canola oil. I read somewhere that some Celiacs are sensitive to canola oil and as soon as I read the label, it hit me. Ever since then, if she ate anything with canola oil, she had a reaction. Now that we know the problem, we are very careful to not buy anything gluten free made with canola oil. It is a challenge to find things that aren't, but she is MUCH better since. Good luck to you!

[mommida]

I have been hearing more and more people whom have Celiac have an IBD, but then again my son has many symptoms of IBD but not a formal dx so I have been looking for a connection and speaking with many different people.

I often wonder if my son has EoE even though bx says no but we all now you have to get the bx in the right place ohterwise the test is pointless.

EoE is a tricky diagnoses. There is more evidence of a seasonal "flare", strongly suggesting AIRBORN reactions. The eosinophils are deeply embedded in "normal" looking tissue. Eosinophils are active (damaging normal healthy tissue) for 12 DAYS. That means people are trying to track what is making them feel so ill and it started nearly 2 weeks ago!

I'm jus having a thinking moment...

Celiac Disease is described as "immune system" attacks normal healthy tissue of the small intestine (when "triggered by gluten". No one really states that it is definatively only "this part" of the immune system active in Celiac. Now that doctors are ordering the pathology report for eosinophil counts they are being found throughout the GI track.

[MitziG]

I think we may have gotten a clue. Daughter has been eating a TON of applesauce lately- her new favorite food. This morning I made some paleo pancakes with applesauce in them- and she goes running to the bathroom. I am wondering if we are dealing with fructose malabsorption?! I was just reading about it, and it kind of fits. At least there is a reliable test for that! I have an appt scheduled for her next week.

Could explain DS issues too. He is a fruitaholic- loves apples and grapes in particular. I read it can cause constipation, which I suspect is his issue.

While that diet would be a pain in the rear of course, it would be nice to know that there is a solution to their issues!