Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

cgilsing

Please Help

Recommended Posts

I suppose this isn't exactly a celiac disease question as my son has already been tested and the results were negative, but I have received so much advice and help from this community and I'm hoping that someone has some insight into our situation. My son is 21 months old and has always had a digestive problem. When he was a newborn he had up to 10 dirty diapers a day, projectile vomited, and had more gas than I have ever seen an infant have. Our pediatrician was completely unconcerned. With time the vomiting stopped and the dirty diapers slowed to about 3 a day. By a year old he was a frequent pooper, but we didn't think there was anything that serious wrong. It started getting worse again though. His poop became less and less solid and less and less digested. It started burning his butt from time to time as well. Now he has 4-5 dirty diapers a day, they all burn his butt (sometimes he has open bleeding blisters), and they are generally runny and undigested. We have gone to a pediatric GI on our own because our pediatrician is useless. He did an endoscope on Ian a few weeks ago and reported that he has significant inflammation of the colon and the secum (where the small and large bowel meet). He started him on a medication called sulfasalazine and diagnosed him with unspecific colitis. The problem is that we can't tell that the medication has done one bit of good. He had 4 dirty diapers today and his butt is so sore he won't sit down. What do we do next?? This guy is the only pediatric GI in 300 miles. I'm scared we aren't going to figure out what is wrong. Does anybody have any suggestions? :(

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Could you give us a little more info . . .Is your son currently gluten free? I know you said his test was negative but did you try him on the diet anyway? Have you checked with the doctor's office to see how quickly this medication is suppose to work or to report that it isn't working?

There are so many false negatives that if you haven't tried gluten-free, I would give it a try.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites

Join eNewsletter

Currently, no he is not gluten free. He was gluten free of course as an infant though and the symptoms were still there. We also have tried lactose free, and soy free on our own. Ian has been on the medication for a week and from what I have read online sulfasalazine is supposed to work in 2-5 days. I'm waiting for a call back from the Dr......

Share this post


Link to post
Share on other sites

Join eNewsletter

Were you gluten-free when breastfeeding him? If you were not, then he was never gluten-free, as the gluten will be in the breast milk.

His symptoms could be caused by celiac disease (and unless a baby is near death, celiac disease tests in babies are almost always false negatives, even if the baby has celiac disease). They could also be caused by dairy (again, through breast milk as well), soy, nightshade vegetables, or other intolerances.

My son would get the raw bum from anything red I ate while I breastfed him (I had to stop eating strawberries, cherries, beets, tomatoes etc.). He couldn't eat anything red while he was little.

That raw bum is caused by an intolerance of some sort, there is no doubt in my mind about that.

If I was his mother, I would eliminate all gluten, dairy and soy from his diet for starters. If that didn't work, I'd take away corn and nightshades. After that, you'd really have to experiment!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Join eNewsletter

Has he been tested for Cystic Fibrosis? My dd's pedi GI ran that test because diarrhea can be a symptom of it. Just keep exploring it, and don't let a dr tell you that your child is ok. Follow your instincts.


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

Share this post


Link to post
Share on other sites

Join eNewsletter

Have you tried gluten, soy and casein all at the same time? (I'd focus on casein not just lactose) At the same time I would also supplement with a good acidophilus (could get worse before better) and give it a good 6 months.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

Share this post


Link to post
Share on other sites

Join eNewsletter

Would you mind posting a typical day's diet for your son, including every meal, snacks, drinks, everything? That way, somebody might spot something specific and be able to help.

I agree, it's most likely something he is eating, but I suppose we should rule out soaps, detergents, fabrics, etc. He might even be allergic to something in his diaper, but I'm still leaning towards diet as the culprit.

Share this post


Link to post
Share on other sites

Join eNewsletter

Also if you used commerical baby food, it may have had wheat in it. Commerical formulas also have dairy and some have wheat from what I've heard. Either could cause the problems your describing.

The inflammation from what we were told can be caused by a food allergy. And our baby often had bloody bottom from the bms.

Did the gi do an upper and take biopsies?

Change ped if you can and have a full battery of things run. Cystic Fibrosis is a biggie as well as kidney issues like RTA all that can cause diaherra. How's his growth?

Stacie

Share this post


Link to post
Share on other sites

Join eNewsletter

hi,

when my son was a baby he cried from the get go. I stopped eating dairy. He got better, but still cried. At one month he had turned yellow :blink: The pedietritions said he was ok, not too yellow yet. I saw a naturopathic doctor. I knew I had food issues, so maybe he did too. I stopped eating: tomatoes and their products, pinto beans, peanuts, and dairy. I already didn't eat any flesh. I did eat gluten then- lots of it. It is an odd mix I know. But it helped soooo much. He stopped crying and stopped being yellow. I think there was more though because when he would teeth, he had terrible reactions. He still doesn't like dairy. If I had continued on eating those things, who knew what would have happened to him. Can he eat banannas. They are medicine for me when things are not right in my belly. Gluten effects my colon. Good luck.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

Share this post


Link to post
Share on other sites

Join eNewsletter

You could try a full elimination diet. I think we went down to meat, rice, potatoes, and a some fruits and veggies (not tomatoes, citrus, strawberries, or anything else you suspect) for two weeks, until symptoms improved, then tested each food individually for a few days. The book, Is This Your Child, by Doris Rapp, MD, details how to do an elimination diet, it's and oldy but a goody in terms of discussing food allergiess. It would be a major pain with a toddler, but might be well worth really knowing which food is doing it. We ate rice milk, rice cakes, and rice flour baked good (after we added back eggs and a few other things).

For the bottom, I had lots of luck with the OTC anitbiotic bacitracin ointment, it helped heal and prevent secondary infections.

Patty

Share this post


Link to post
Share on other sites

Join eNewsletter

My son would get the raw bum from anything red I ate while I breastfed him (I had to stop eating strawberries, cherries, beets, tomatoes etc.). He couldn't eat anything red while he was little.

Anything red? I think this is the strangest intolerance I've ever heard of :) What the heck do those foods have in common?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter