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Thought I Was A Little More Prepared Than This...


jitters

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jitters Apprentice

Okay. My mom has been gluten free for about 10 years now. So I'm not brand new to all this. In fact, I thought I would be a lot more prepared for this. Now I'm realizing I'm totally overwhelmed and scared. I have been gluten free (well, okay I admit I have been cheating more and more lately) for four years. My symptoms are almost non existant so its sometimes hard to stay away from gluten when it doesn't make me sick. I would almost rather it made me extremely ill so it would be easier to stay away from it.

So- I got the results back on my three year old daughter today:

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Cow's Milk Protein Sensitivity Stool Test

Fecal anti-casein (cow


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RiceGuy Collaborator

For the dairy, I've found nut milks are tremendously delicious. I really like them, and the nice part is they are easy to make, so you don't have to buy them. There are other sorts of milk too, such as rice, soy, etc. Dairy free cheeses are available, so check your local health food stores. One brand I know is Open Original Shared Link, but do watch the ingredients, as some products contain casein, and/or hidden MSG.

abigail Apprentice

you may ask to the doctor if a LActose FRee milk will also work for your kid.

good luck, and be strong!!

Abi

Nancym Enthusiast
you may ask to the doctor if a LActose FRee milk will also work for your kid.

good luck, and be strong!!

Abi

That won't help for a casein sensitivity. You have to avoid all dairy.

Nantzie Collaborator

Although I've seen much higher numbers, she's got about the same numbers as my kids did as far as gluten goes. They both showed a dramatic improvement in digestive issues AND behavior/mood issues on the gluten-free diet.

Nancy

jitters Apprentice
Although I've seen much higher numbers, she's got about the same numbers as my kids did as far as gluten goes. They both showed a dramatic improvement in digestive issues AND behavior/mood issues on the gluten-free diet.

Nancy

Thanks, thats what I was looking for. We've definitely had some mood issues lately, I'm really hoping the gluten free diet will help. It sure helps my mood!

shayesmom Rookie
My second question- how in the heck am I going to go dairy free with her? Cheese and milk is a food staple for her. In the back of my mind I always new that she had issues with dairy and gluten, but now I KNOW she does and I am responsible for keeping her healthy until she is old enough to understand this disease and make the right decisions regarding food.

The more and more I think about this, the more overwhelmed I am. I truly thought I was more prepared than this...

Anyone out there with children who are dairy and gluten free? Any tips for me?

My dd is gluten, dairy, soy and egg-free. We also severely restrict food colorings as there is a random reaction associated with them....but we haven't pinpointed which one.

There are a lot of good milk substitutes out there. We don't rely on just one kind, but rather, rotate them. For milk we use any of the following: rice milk, hemp milk, almond milk, hazelnut milk or Vance's Dari-free (potato). For recipes, I often will use coconut milk in lieu of milk or cream.

Cheese is a bit harder to replace because the alternative cheeses invariably contain casein. A while back, someone here posted some cashew cheese recipes. The recipe looked and sounded odd....but we've tried it and it's a very good cheese substitute. It makes a sliceable cheese or just a cheese sauce (a bit like Monterey in flavor). Although it doesn't hold up to heat for long and the texture isn't the same, the flavor is very good. My dd loves it on her pizza, tacos, etc..

Besides that, Enjoy Life makes a good allergen-free chocolate chip. Living Without magazine had a really good dairy/gluten/soy-free pudding recipe if you want an occasional treat.

In all honesty, the best place to look for recipes free of gluten and dairy would be on a paleo diet site. You also may have some luck if you look for raw food recipes or even vegan recipes. I've found that by combining the different techniques/substitutions on these sites that I can acheive a great amount of versatility. Most people don't notice that they are eating allergy-free over here.


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    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
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      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
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