Colon Issues With Celiac? Anyone Else?

[Mom2J112903]

I am new here but have been on the GI road most of my son's 8+ years of life.

In short he was wheat positive on allergy testing, pulled off ALL gluten *before* his first scope and only 2wks (and a VERY sick child those 2wks) prior to testing. That scope showed blutned villa but nothing to formally dx Celiac. Thru this time period he was also IgA defficient. So any testing preformed really wasn't "true" to the nature of what we were seeing symptom wise. At that time the GI said to keep him gluten-free for at least a year-we did much longer. Moved away and got into a new allergist and finally a new GI after GI symptoms started back. Allergist said it would be fine to do a regular diet. Well in less than 18 months we went from eating anything and everything to 100% tube fed due to *any* solid food causing extreme pain, bloating and horrid constipation which led to a severly and grossly enlarged colon. When our current GI scoped him, there really wasn't much in the way of food in his system :-( Mainly clear liquids, minus a rice cake or so. The first colonscopy was done in Sept of 2006 and the last was in Sept of 2011, most of those years were gluten-free. Is it possible that the VERY short amt of time caused the colon to get this massively enlarged? Even one bite of solid food sends the child into extreme pain and causes the motility to shut down even worse than it already is.

He has other dx's including Dysphagia, GERD, some delayed gastric emptying, and of course the chronic constipation which has led to megacolon. So in short his GI system doesn't work and IBS is often used to describe him in short when speaking of his intestinal issues.

After recent events, which included a certain little man stealing some gluten filled foods we talked with our GI and he is certain that if we could ever get a *good* scope, we would see the tell-tale sign of Celiac.

His colon's health has us all very worried and we hope to avoid major surgery.

Some back story that may be helpful....his GI system started malfunctioning shortly after birth. I ate a PB&J on wheat shortly after delivering him. As soon as he nursed, he started vomiting. He went to formula and stomach was in MUCH better shape. Started solid foods and within 3 months he was a VERY sick child and stayed that way for a LONG time. Each time he has gotten into gluten not only do we have the increased intestinal spasms and constipation issues now but high temps, joint aches, and skin issues. When he was younger he would have diarrhea numerous times a day. We just can't figure out why the first GI did not see a problem with his colon since it is *so* large today. For the longest time we thought he was having normal bowel movements and it turned out to be diarrhea going *around* the impacted stool.

I would love any and all thoughts, just trying to put another piece to the puzzle together. Sorry if this is all over the place, wanted to get all my thoughts down. Thank you!

[GFinDC]

Hi,

Sounds like a rough time or all of you. Has he been tested for Crohn's and Uc (ulcerative colitis) ? Those are both conditions that could affect the colon. Celiac mostly affects the small intestine. There is a chance of course that he has both celiac and Crhon's or UC. There is a heightened chance of Crohn's for people with celiac disease. The treatments for Crohns' are drugs to suppress inflamation and the immune reaction, and sometimes surgery. It seems like they would have tested him for Crohn's during the colonoscopy but it would be good to ask.

For celiac the treatment is the gluten-free diet. The gluten-free diet means no wheat, rye or barley and some have to avoid oats as well.

Constipation and diahhrea are both common for celiacs, so it is possible he just has celiac. Testing for celiac is somewhat iffy as the tests are not always accurate. But the endoscopy with positive biopsy (blunted villi) and a positive reaction to the gluten-free diet are strong evidence. The endoscopy is often called the Gold standard".

There is a rare from of celiac called refractory celiac. It doesn't respond completely to the gluten-free diet and so they use drugs to treat it. It's a good idea to try a very strict gluten-free diet before thinking of refractory celiac though. Some people react to very low amounts of gluten in their foods. If he is that sensitive, living in a shared household with gluten eaters may not work. He may need a totally gluten-free house. There all kinds of tips on how to live gluten-free on this site. Things like avoiding gluten filled pet foods, using gluten free shampoos, gluten-free vitamins and meds, not sharing condiment jars (peanut butter, mayo etc) not sharing pots and pans, toasters, colanders etc. A crumb is more than enough to make us sick. If he is cheating on the gluten-free diet that is not good.

Welcome to the site. Hopefully we can help you! Feel free to ask questions, there are lots of people willing to share here.

[Mom2J112903]

We were VERY strictly gluten-free with him for most of his life, the entire house was gluten-free and Momma was one TINY gal! Being gluten-free definatly agreed with me!

Currently he is 100% tube fed due to his numerous GI issues and any bite of solid food causing problems. IBDs have been mentioned from a young age but we have never gotten a formal dx and since his colon is so large, it is difficult if not impossible to get further up the colon for the proper biopsies to be taken. We do know that steriods + little man = AWESOME motility :-D Just still serious pain from eating the food though :-( When he has had to be on steriods for his lungs, we noticed that predisone did awesome things for his motility. We just can't have him on that high of a dose of predisone of course. No reason to give him anything to help the motility when it still hurts so much to move the food along the GI tract.

If he is ever able to eat solid food again, this house will go strictly gluten-free all over again. It is just too hard to have two of everything and worry about cross contimination.