Gluten Reintroduction ... Your Personal Story Or Advice?
Posted 29 January 2011 - 11:41 AM
All her life, she's had very loose stools with undigested food in them. It's NEVER been a nice brown color, more like tan or yellow. It's always had a kind of "acidic" smell to it, if that makes sense to anyone. She's never been failure to thrive or anything, and other than being a bit irritable, hasn't been an overly fussy child. I've always been worried about her bm's, and one day I accidentally stumbled across gluten intolerance and thought we'd give that a try for my husband (who has all the typical D & C, bloating, etc.) then figured we'd give it a try for my little girl too. Within a week, her bm's had normalized enough to actually make it to the potty on time. Within two weeks, they were a fairly normal brown color, still a little loose though. I took out dairy products, and then it normalized even further. She has frequently (and randomly) thrown up for no good reason in the middle of the night. She did that the night before our planned reintroduction day. But then she was fine again in the morning. She ate a whole banana and drank some water and was bopping around our playroom with my 4 year old.
Then came "brunch". Cinnamon rolls. She only ate about half of what I gave her before she stopped eating and looked ill (in the past she has always loved cinnamon rolls). She went outside to play anyway, and then started looking very red-cheeked (no fever) and sleepy. I put her down for a nap. When she woke up it was time for lunch. Her favorite food was on the menu. She wouldn't eat ANY. Then about 10 minutes later, she threw up bits of cinnamon roll, but no banana. She felt visibly better after that, and has not thrown up since. She has eaten bland foods like gluten-free crackers and bananas since then. She had a bit of yellowy diarrhea yesterday evening. She had gas pains and frequent waking throughout the night. Got in our bed at 6:30am and slept until 11am! This kid normally wakes up by 7am on the dot, every day - definitely a morning person. She looks and smells "sick". She wouldn't eat at first, but was drinking lots of water, and now has had a banana and some more gluten-free stuff. She says that her tummy hurts, and that "her food keeps coming back in her mouth" and that it hurts in her neck, so I'm assuming heartburn or reflux or something? Now she's had a bm, and it was very pale in color, but good consistency, not diarrhea. She's just now starting to perk up enough to want to get out of my bed and move around a bit - and it's 1:30pm.
My husband is skeptical that her reaction was to gluten, and that maybe she's got a virus or something instead. (His own reaction to gluten yesterday was just being really tired, bloated, and gassy, but he wasn't miserable or anything.) He's been skeptical all along, even though I feel in my heart that gluten is the issue for her. "Maybe it's not gluten, honey, maybe it's just a bug and she's fine with gluten."
Can y'all out there help me? Do all of her symptoms sound like a virus, or a glutening, or what? Any personal stories to share about you or your child's reintroduction to gluten?
Posted 29 January 2011 - 06:37 PM
Posted 29 January 2011 - 09:46 PM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 30 January 2011 - 08:24 PM
But I would still really like to hear anyone else's reintroduction stories!!
Posted 31 January 2011 - 10:06 AM
My dd was diagnosed with a blood test and biopsy as I am sure many others here so there is no reason we'd ever do a reintroduction. I would get the blood test done while she is on gluten and get a formal diagnosis. If she doesn't wind up testing positive for celiac then you can always put her back to gluten free and go with your own findings of gluten sensitivity, but to me it would be really important to get that diagnosis done. For us there were a lot of reasons to wanting to get the testing done formally including the risk for other siblings and also the risk of CC in our household. Because my dd is so sensitive to gluten we have had to get the whole family gluten free. If your dd actually has celiac it may not be enough to just eliminate gluten out of her diet. She may need accommodations at school and your whole family may need to go gluten free. Also, with a formal diagnosis you can have repeat tests to help judge whether she is being contaminated or exposed to gluten. It may seem like a pain to get her tested, but I would strongly encourage getting it done.
Since I originally posted this question, she went from bad to worse. Yellow diarrhea, undigested food, gas pains, and horrible reflux. It's EXACTLY like she was before we went gluten-free. No one else in the family is ill in the slightest, and she has no other symptoms of a cold/virus. In addition, I checked her food journal, and the three times she's thrown up randomly overnight since going gluten-free are when she's had a decent amount of dairy in the afternoon/evening. (She had dairy the night before our gluten reintroduction.) I am absolutely, positively SURE that it's all a reaction to gluten.
But I would still really like to hear anyone else's reintroduction stories!!
Posted 31 January 2011 - 11:07 AM
With many celiacs, the intestinal bacteria gets off balanced as well, so it may be helful to give her some gluten-free yogurt for awhile to help balance this out. Every time my son and I accidentally ingest gluten, we have to take a "gluten-free" probiotic for a few days following the incident to keep the intestinal tract in balance.
Many studies show that it can take as long as a year to completely get a body stop showing signs of the gluten intolerance, even after going gluten-free. I suggest keeping your daughter and husband on a gluten-free diet.
As long as they are better without the gluten, that is all the testing one really needs.
My son's doctor didn't feel that it was necessary to test him. He said if he isn't sick on the gluten-free diet, than keep him on it. Since I pack his lunch every day, I don't have to worry. I even signed up to help with all of his classroom parties so I could ensure that he had a gluten-free option. When I wasn't able to do this, the school would keep a gluten-free cupcake around (that I would send) in the event they had an unannouced party.
Being gluten-free isn't easy, but it does get easier with time.
Posted 21 March 2011 - 02:31 PM
Posted 21 March 2011 - 09:25 PM
This is a good link to an article about a recent study on non-celiac gluten intolerance.
There are not tests for this other than food journal and gluten challenge, I'm afraid. Considering her reaction, I'd keep her off the gluten for a few more months and challenge again at maybe 6 months or a year.
My friend's son has never been diagnosed - he's 2 - but after what my family went through, and the similarity with her son's symptoms, she tried him on the gluten free diet. Accidentally, they did a 'gluten' trial when he got in the dog food, LOL.
He had similar reaction, bowel-wise. Bowel movements were very affected. He gets red cheeked, sometimes red rash on his bottom. He gets the opposite - he goes into this manic-hyper craziness that lasts for a day or two and drives everyone insane.
My daughter has severe stomach pain very quickly, usually less than 20 minutes after ingestion (she's a diagnosed celiac, and this is just with cc, not even eating actually gluten on purpose), with lingering lethargy, lack of appetite, stomach pain, and we think this last time she had vomiting as well.
It could have been a stomach flu, yeah, but the only way to tell is to keep her off of it again and try later. Because if just this set her off into vomiting, then actually putting her back on gluten seems like a bad, bad idea.
I'm a celiac, and so is my father. My father reacts like it sounds like your husband does - with just a little gastro distress maybe the next day. He was pretty skeptical of the kids' reactions happening so rapidly and violently, but having been here now for a few 'glutenings,' he's a believer.
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease
23 years with undiagnosed sulfite sensitivity
25 years with undiagnosed mast cell activation disorder (MCAD)
Daughter: celiac and MCAD positive
Son: gluten intolerant
Father, brother: celiac positive
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