This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Ha ha....determined woman. Yep. That's me. Thanks for the encouragement. I was hoping to find some really easy fix that I had possibly missed. ;-) I do try to take a peek before she flushes. Thankfully she forgets to flush and I honestly don't try to change it because I at least get to see it! One of the zillion things I never thought I would be doing as a mother. LOL
Thankfully my kids all eat pretty well. Lots of good fats and plenty of veggies. I just use rice as a filler to help meals stretch and keep them full. We don't do a lot of gluten-free breads because most of the those have egg and my youngest is allergic to eggs and they are expensive. ;-) I need to try to do some white potatoes and sweet potatoes so I don't rely on rice so much but rice is just so EASY!
After the initial blood test we went to the GI doctor thinking that's what we should do next. She laughed at us so we haven't seen anyone specifically about it since. Last Summer we had an appt with a pediatric dermatologist but I figured out the oat thing the night before. We went to the appt anyway and that doc agreed that it could be the oats, wrote us a script for steroid cream that we never filled and we left. Took her of the Quaker Oats and switched to BRM and she cleared up quickly.
She hasn't had any eczema until we switched to this new brand of rice, so I am 99% sure that it's the culprit.
She was just turned 2yo at the original test and had been eating something with gluten every day for 4 months prior to the test.
We eat dairy quite often and she doesn't seem to have any problem with it. I used to be lactose intolerant (nothing huge. Just lots of mucous and sometimes bowel issues when I ate it.) but since I went gluten-free with the kids I can eat dairy with NO problems at all. I thought that was interesting.
I have done food journals and that's how I figured out the eggs, peanuts and possibly avocado. It was just easier when she was in diapers since some of her stuff is poop related. LOL I guess I can do a food journal again.
Oh and as far as the environmental factors...yeah, the eczema started during county fair week. She had been visiting the goats and horses and chickens. Had gotten a lemon shake up at a booth. It took me a while to figure out the rice because I was thinking maybe it was the fair. I contacted the lemon shake up booth to triple check ingredients. It was driving me nuts. Then I remembered we had switched rice.
The test that was done was "celiac and gluten sensitivity from Genova Diagnostics. They tested:
Biomarker: Result: Reference Range
Total IgA 68 Sufficient 17-94
IgA (tTG IgA) <1.2 Negative <4.0 U/mL
IgA (DGP IgA) 2 Negative <20 U/mL
IgA (AGA IgA) 3 Negative <20 U/mL
IgG (AGA IgG) 34 Strong Positive <20 U/mL
It said "patient results are consistent with gluten sensitivity.
There is a chart to flow through at the bottom. She had enough in her system to make the test work. Her tTG and DGP were both negative so that meant she was NOT celiac. Her AGA was positive which meant there was gluten sensitivity.
My other kids had similar results but this NP said because my youngest was so young and had only eaten gluten for such a short period of time she believed my dd was going to be more sensitive than the other dc. Which seems to be the case.
So are you saying this test is not legit? I'm not trying to argue. I genuinely want to know what you think.
We already opened the packages and put the rice into a 5 gal food grade bucket to store. So I doubt we can take it back.
I just called Costco to ask what the name of the other brand of basmatti is. It is Kirkland Signature (their store brand). I talked with the lady about it and she suggested I bring the other rice back in trash bags. Seriously! I can't believe they would take it back, but she was super nice about it and said that the package should have been clear. She gave me a number to call and their brand is processed in a wheat free facility! woo hoo! Now I just need to drive there. LOL
She had the blood test in 2012 after being on grains for four months. It did say positive for gluten intolerance but not celiac. The Nurse Practitioner said that I should treat her as true celiac because she had ingested such a small amount of grains for such a small amount of time in her short life at the time. She really believed that my dd was celiac. I took her to a pediatric GI doctor because I thought maybe that's what I should do. The GI doctor laughed at the test and said "they" don't use those anymore and my dd was not even gluten intolerant....sigh.
So I have just been muddling my way through, basically treating all the kids the same when it came to gluten. I tried to find gluten free but as long as it wasn't in the ingredients and was something that is naturally gluten-free I went with it. Well, my youngest DOES seem to be more sensitive than the others, just like the first NP said.
I'm just having trouble knowing what actually affects her. Her symptoms so far have been the weird poop and eczema. When she was younger she was very thin and gaunt but I think taking peanuts and eggs out of her diet helped with that problem. Now she is a chunk and overall seems healthy. She does have weird poop at times but there is no rhyme or reason that I have figured out. Partly because I don't always see before she flushes. Now, my 6 year old is still quite small and has had broken bones, dislocations and seems overall frail compared to my other kids but I don't know if that's just "her" or if it's related to gluten or something else. They all pretty much eat the same foods (except the egg and peanut thing for youngest). My 6yo tends to eat less than everyone else. I dunno. I'm just at a loss as to how to know what hurts them and what doesn't. Do I just do my best and wait till she is older so she can tell more?
Thanks, I'll have to look into Lundberg Farms. I order gluten-free oats through a local amish store. I can see if they can get this brand. Thanks!
I can't remember the brand we were using from Costco. It was in a purple/black plastic bag. It seemed to be okay but now I am just wanting to make sure the rice we use is gluten-free so there is no question. Especially since we use so much of it.
I have never rinsed rice. I guess I should start.
I might know a good family friend that would be interested in buying the rice at a discount. I tried giving it to another friend whose husband recently lost his job but apparently they don't eat much rice. ??
I have five children. We started down the "dietary issues" path several years ago when I discovered that artificial dyes and preservatives affect my oldest two. That was 2007. Over the years we have done various elimination diets trying to figure things out. But most of the symptoms were behavioral and then some things like bedwetting, under eye circles and eczema. By the time I really suspected grains I had just had my fifth child.
She seems to be the most sensitive. She is also allergic to peanuts and eggs and might also be allergic to avocados but I haven't tested that yet. She is 3 1/2 years old. I used to notice that her poop seemed "off" when I would change diapers. It was just a weird consistency, hard to explain.
When she accidentally gets something with egg in it she will get eczema behind her knees. It goes away within a few days as long as she doesn't eat that again. Last summer she got some behind her knees and I figured she must have gotten something with eggs. But it didn't go away. It got worse and worse and we couldn't figure it out. By the end of summer her legs were covered and it was going to her arms and body. Her legs were cracked and bleeding. I finally figured out it was Quaker Oats. My other dc were eating them but not showing any major problems. She was potty trained so I wasn't seeing any poopy diapers to notice anything. Once we removed the oats and switched to BRM she began to clear up within the week and by 4 weeks she was completely clear.
About a month ago she started getting eczema behind her knees. I "knew" it was food related but could not figure it out. It was getting worse and worse. I finally figured out we had bought a new brand of rice. Contacted the company and it is packaged in a facility that processes wheat. So I'm pretty sure that is the culprit. We took that out of her diet and I found some other rice. That company can't guarantee it's gluten-free though. (ugh) Her eczema isn't going away though! It's only just now been a week so I am hoping that it will get better soon.
If you have read this far thank you! All that to say....HOW do we KNOW what is going on with our little ones? She has never said to me that her belly hurts. But sometimes I will notice "streaks" on her underwear and I am thinking that maybe she is getting the weird mushy poop. I don't seem to notice a problem until it's been in her system for a good while. Looking back I wonder if some behavioral (mood) problems are from gluten but I'm not sure. I don't know that she knows what feeling good is like. Ya know?
Oh and I am unsure of what to do with the 40lbs of rice we have. My four older kids are gluten intolerant and don't seem as sensitive as my youngest. She is the one that reacted to this rice. On one hand, I feel uncomfortable give this rice to the older kids knowing they are sensitive and knowing it is cross contaminated. We eat a lot of rice. But that's a lot of rice to waste.
We purchased rice at Costco (several pounds of it actually) and my daughter reacted to it. Zafarani is the brand name. I went to the company's website and they have a general blurb about how rice is a naturally gluten free food but nothing specifically stating it is gluten free. I called the company and sure enough, it is processed in a facility with wheat. I emailed them later to suggest they put on their packaging "processed in a facility that processes wheat" but haven't heard back.
We had been eating another brand with no troubles but it was not marked gluten free either. I also got it at Costco which is an hour away, so in the mean time I was just going to get some smaller packages locally. None of the packages were marked gluten free, so I called Kroger and the lady there said that the package has to say "may contain wheat" if processed in the same facility. But then she changed it a bit and said if processed on the same line. She said their rice is "a gluten free food" but she couldn't guarantee it was not processed on the same line as wheat. I left the conversation not knowing.
Can anyone tell me what the rule is supposed to be? Are there any companies that produce rice where I can buy in bulk? It's our cheap "filler" food here. Thanks!
Thanks for helping me think it through. We are primarily using sunflower seed butter from Trader Joe's. My other kids are not the best at keeping PB out of 2yo's reach. ;-) We haven't had eggs in the house but recently my husband fixed some. 2yo somehow got in contact and had eczema and diarrhea. So I might keep eggs in the house and use them *in* stuff but probably not doing scrambled eggs anytime soon. LOL
Dairy - You know....I'm pretty sure I am lactose intolerant. When I eat dairy I get lots of mucous and am constantly clearing my throat. Often times ice cream or a glass of milk will send me straight to the bathroom. My sister is lact. int. wore than that. When we eliminated dairy before I noticed my ds and I having the worst gas pains and such when trying a glass of milk. Interestingly, we did pretty good with raw milk, but it was pricey so we just went dairy free. ;-) So maybe I should take our dairy for a bit. I wonder if just taking out all dairy except butter would work. We were eating small amounts of butter before and seemed to do okay. It seems to be milk mostly that disagrees with some of us. In your experience would it be better to go completely dairy free for a time just to help things heal faster or would that make a difference?
I don't have a problem going gluten-free really. In a lot of ways, it's been a lot more stressful not knowing what to feed everyone than being on a restricted diet. I have lots of great recipes that my kids love. Thankfully they are all great eaters. That's one thing all these diets have done for us.
Thank you all so very much. I admit I am getting overwhelmed here. Playing private investigator for each of the kids and myself gets a bit confusing.LOL I think part of my problem is that when *I* am not eating right my mind doesn't function at 100%. Therefore, I miss some things with the kids.
It is frustrating that these doctors don't want to work *with* me and take some of the information I have read or found personally with my family and use it to see the big picture. They just blow me off and dismiss what I am saying. It's especially frustrating when we are the one paying them.
My main thing is that I don't want to eliminate foods that don't need eliminated. So what do you think of this plan?
-Keep all the preservatives and artificial colors out of everyone's diet for now.
-Keep 2yo off peanuts and eggs as those are obvious allergies.
(one thing I am wavering on is keeping everyone off peanuts. My other children's blood test for allergies showed peanuts as a problem but that can be false positive. None of them have a severe reaction like she does.)
-Take everyone off gluten.
Do this for a while (how long??) and see how everyone does. I'm guessing we will show positive results within a week or so and definitely by one month. If we don't see good results by one month(?) then continue to avoid gluten but also:
-avoid other grains
Which would you do? Dairy or other grains?
My son's blood test for allergies showed allergies to tons of grains and beans. But again, those could be false positives.
Last thing. They all seem to have inhalant allegies to pollen, dust, mold, cats and dogs. The allergist prescribed Zyrtec and Flonase. I really don't want to do those things. Should I wait till we get the diet back in order to try those meds? I hate changing too many things as once as then it's hard to know what helped.
Nirole - We have done various "diets" over the years. It all started when I figured out my oldest couldn't do red40 food dye when she was about 2yo. When my 8yo son was 2-3yo he was having horrible behavioral and speech problems, night terrors, eczema (which they have all battled over the years), lots of behavior that would point to autism spectrum but I don't think he is autistic.
In 2007 (ds was age 3) Took out preservatives and all food dyes - In 3 days his speech jumped over a year in ability and his speech therapist told us he didn't need therapy anymore. His night terrors stopped. He now made eye contact and could sit for more than 3 seconds.
Some things that still lingered were: sensory seeking, aggression (at times), slow speech and later he was (is) a struggling reader. He also would have trouble with his bowels and sometimes wet his pants and not even know it.
Since then we have tried various elimination diets. I noticed bedwetting stopped for my oldest two on an elimination diet (the one Dr. Doris Rapp suggests in her books), skin got better, behavior was good. But when we added things back in I never could find the culprit. We did it again and same thing happened. There was never an immediate "reaction" to any one thing. I don't know if it was a build up or a combination of foods or what.
Fast forward a few years. It is 2010 and I now have five kids. We try the SBP (Spectrum Balance Protocol) diet. Mainly for my ds who is struggling with his schoolwork. It's basically a grain free, dairy free, bean free, nut free, sugar free (and some other things free LOL) diet. We followed this diet for about 10 months. During this 10 month period we were all doing really well. After the initial 2 weeks of detox. blech! Everyone's poop was perfect. We all lost weight. Not that my kids really needed to but they never got to be horribly skinny so it seemed just fine. No one was sitting on the toilet forever trying to "go". No eczema on anyone. Behaviors were great! My son was beginning to make progress reading.
I was nursing my youngest during this time. I got a great deal on some farm fresh eggs. This was an easy protein that was allowed on the diet so we went egg crazy for a bit. I noticed my youngest started getting eczema. My next youngest shared a bite of boiled egg with her one day and she broke out into hives. I then put two and two together and figured she was allergic to eggs. I went egg free and her skin cleared up. She weaned a month or so later.
It had now been about 10 months on the diet. I was burnt out. Didn't know what to do or what the right decision was. Was it really worth it to be free of all these foods? Maybe it was just one thing we were eliminating and the rest would be okay. constantly second guessing. Lots of other stress in our life at the time and long story short I gave up on the whole diet. My kids ate Little Ceasar's pizza and Kentucky Fried Chicken for the first time. They started eating peanut butter again. I would sometimes slip up and my youngest would get something with egg in it. Her eczema came back. She would get splotchy at times and I thought it was eggs but turns out it was peanuts. Over time I figured out that she is allergic to eggs and peanuts. She has been free of those for several months now and the eczema is gone and no hives.
Once we went off the diet her poop got nasty. It became very goopy/mushy and had this sort of powdery residue that you could not get off her bottom unless she got a bath. Everyone else's poop got bad too. The first few months my son's looked like he didn't even digest his food. If he ate oatmeal it looked like he vomited oats into the toilet when he had actually pooped. Now everyone is constipated but will sometimes have diarrhea. My youngest (the 2yo) still has the weird mushy poop. My son has backpeddled in his reading ability and behavior is CRAZY for all of them. I am constantly bloated and just feel so tired all the time. My head itches constantly which it would do before the SBP diet but not while we were on it. We have all gained weight. The kids look like normal chubby kids that are ready to hit a growth spurt, but I have gained a good 30-40 lbs. yikes!
I'm not sure if that is what you were wanting or not. LOL Maybe you can see something from outside the box that I am missing. I just don't know what to do at this point.