I Finally Did It--my Own Personal Gluten Challenge

[chewymom]

I finally decided that I needed to go gluten-free for a while to see if I felt any different. My symptoms have never been that bad--mostly some cramping and loose stools since the birth of my daughter, four years ago. So, I went gluten-free and was really religious about it. After three weeks, I went to visit my mom, and she had made several bread-y dishes, so I let the weekend be my gluten challenge. I ate bread and drank some beer from Saturday morning through Sunday morning.

By Saturday evening I was convinced that gluten wasn't the issue, because I felt fine. Well, I did feel a bit like I was in a fog in the early afternoon while I was shopping at REI, but that was never a symptom I had noticed before, so I dismissed it.

Sunday, all day, my intestines just HURT!!! I don't know how else to describe it. I was uncomfortable all day. That was the worst of it, so it really wasn't too bad. But it was enough to show me that I do have a gluten issue, and I am not a total hypochondriac--and this isn't all in my head. I may go ahead and test with Enterolab, like I did my daughter (who is gluten sensitive), just to give me more incentive to keep up the diet.

I am back to gluten-free, and this has made me realize what my daughter probably means when she complains about her tummy hurting, so I am working to take her off of gluten as well. I had not really done anything about her diet since her test results came back because it was such a LOW number that it hardly seemed worth the headache of making everyone aware that they should not feed her gluten--not to mention how hard it would be in our house of seven to keep from having CC issues. But now I am going to get that gluten out of her diet. I'm mostly dreading trying to deal with her preschool (which serves animal crackers daily) and our church where pizza is served every Wednesday night. I'll figure it out though....

I have no real point, I guess--just that I finally confirmed what I have suspected, but then second-guessed off and on for several years now. I would have never taken any of these steps if it weren't for this board and all of you here!!

[Ursa Major]

What do you mean that you have no real point, sure you do!

Good for you for going gluten-free, and for now making your daughter be gluten-free, too. I am sure both of you will feel better without gluten.

As for the preschool snacks, I have seen gluten-free animal crackers somewhere, somebody else who has little kids with celiac disease will be able to give you more info, I hope.

So, you just leave a bag of gluten-free animal crackers at the preschool, and that's what your daughter gets, when the other kids get the 'regular' kind. As easy as that.

And the Wednesday night pizza at church is just as simple: Bring your own gluten-free pizza with you!

I know you can figure it out, it just seems hard initially. But I am sure it will all be worth it in the end. Won't it be nice when your daughters tummy aches disappear? (not to mention your brain fog ).

[chewymom]

Is there a place where you can get gluten-free pizza/crust? Or do most people make their own?

My daughter's birthday is actually on Wednesday, so I'm waiting until after that to really make a switch for her--I don't think I'm quite ready to try gluten-free cake yet!

[cornbread]

I had not really done anything about her diet since her test results came back because it was such a LOW number that it hardly seemed worth the headache of making everyone aware that they should not feed her gluten--not to mention how hard it would be in our house of seven to keep from having CC issues.

Hi Chewymom,

I'm presuming this is the same daughter who you tested with Enterolab? If so, did they make you aware that a positive is a positive via their test, it's not a case of low positive being less serious than high positive. They have a note about this in the results, or at least they used to. Think of it like a pregnancy test - you can't be a little bit pregnant, it's yes or no. If your daughter scored an 11 and the cut-off for gluten intolerance is 10, then she is most definitely and forever gluten intolerant and every morsel of gluten she ingests is damaging her. I'm sure Enterolab would be happy to back this up if you called or emailed them. Please for your daughter's sake take her positive result as seriously as if it were a 300.

[CarlaB]

Amy's has a gluten-free frozen pizza ... I can't have dairy either, so I'm not much help. I think Kinnikinnick has premade pizza crusts.

Be sure the teacher doesn't give her the animal crackers (available at Wild Oats) with gluteny hands from handling the other kids crackers ... you may want to send hers with her each day in a little bag so they don't get contaminated.

I remember those belly aches when I was little ... glad you are going to help her with them! Everyone always thought I was just a complainer when I was little and ignored mine. In the end, I ignored them, too, thinking that it was normal to be in pain after every meal. Eventually it doesn't even register as pain! I ended up really ill from it, so even if it's a low number now, remember, with gluten it will keep going up till she's really sick!! Now I have other health issues to go along with it.

[ravenwoodglass]

Is there a place where you can get gluten-free pizza/crust? Or do most people make their own?

My daughter's birthday is actually on Wednesday, so I'm waiting until after that to really make a switch for her--I don't think I'm quite ready to try gluten-free cake yet!

Actually some of the gluten free cake mixes are great, I love the Gluten Free Pantry's angel food and their chocolate. I also use their french bread mix for pizza dough, the recipe is on the box, and it is just like the deep dish dough I remember. I get the mixes at both my local health food store and at my Grocery.

[chewymom]

Hi Cornbread,

Yes, it is that same daughter. I believe that you are right, but I've waffled so much. My "story" is this....My daughter has complained of her tummy hurting since she was able. She is my fifth child, and I spent my whole life constipated until she was born, when I suddenly began having runny poo--almost like diarrhea. I attributed it to several things, and then finally we hit a point where my daughter and I both were having diarrhea, severe cramping, and we were both miserable. I poked around online and found this forum and was convinced it was celiac.

A few weeks later, one son began having diarrhea, and another complained of stomach cramps. Long story short--we had giardhia. We had washed our camping dishes in a creek. So I felt like a numbskull for spending so much time researching celiac.

A while later, a friend of mine was hospitalized--she's very thin, and she was becoming dehydrated from vomiting and diarrhea. She learned she has celiac. Because of what I had learned on here, I was able to be a good resource for her. Meanwhile, my daughter and I were feeling much better. But as time went on, I realized that although better than we had felt for a few months, things still were not normal.

I started down this path again. I mentioned the loose stools and tummy cramps to my daughter's pediatrician who said basically that diarrhea-type of poo is just normal for some people. I thought that was odd, because I have four other kids, and nobody's poo looks and smells like this. Still, sometimes I wondered if she just complained about her tummy when she was upset or just didn't know how to explain what was going on that was bugging her. After all, she is 95th %ile for height and weight. As for me, I am overweight myself, so I would off and on wonder about celiac and then dismiss it.

I finally had my daughter tested because I was so weary of her tummy complaints and just had to know. I knew I'd never find a doctor in our small southern town who would take me seriously, so I went with Enterolab. Still, I doubted that their test really was accurate, since most doctors don't accept it as legit. If her numbers had been really high, maybe I would've been convinced--I don't know. But because her number was SO close to normal, I halfway blew it off. I didn't want to go around claiming she has celiac, because we still don't know that. She doesn't look like she does--she appears healthy and all. And I sure didn't want to seem like I was copying my friend--like I was after soeme attention. And I especially didn't want to go down this diet road only to switch back when the going got tough (like when I had to explain to schools, grandparents, other moms, etc. why my daughter couldn't eat "normal" foods).

And then finally I decided that I likely wouldn't believe the Enterolab results on myself either, so why waste money on it, even though I was/am still dealing with loose stool and stomach cramping. So I decided that fro two reasons--one, to prove that the diet would be do-able for my daughter, and two, to see if I had any improvement in my symptoms. I did improve, and the diet didn't kill me. I learned about lots of other foods that are out there.

And so, call me dense or stubborn or whatever...I am finally ready to help my daughter by changing her diet. Thank you for the gentle reminder of what I need to do--I plan to start in earnest with my daughter this weekend, after her birthday celebrations are over.

And if the rest of you have made it this far, thank you for the suggestions of gluten free products. I need to look into them, and also play around with some gluten-free all purpose flour I just bought--maybe my old pizza dough recipe will work with this! (Just no beer crust--bummer!)

[CarlaB]

You can get gluten-free beer!!

[Guest nini]

if I can help you with any suggestions for you and your daughter feel free to ask. You can e-mail me at nisla@comcast.net if you like. My daughter was 3 when I finally was dx'ed with Celiac and accepted my fate and then discovered that my daughter's health issues were also caused by gluten. I was classified as morbidly obese by my Dr., since my dx and going gluten-free 3 1/2 years ago I have lost 110 pounds. Doesn't that alone make you want to stick to this gluten-free lifestyle?! LOL!

My daughter is now 6 and very healthy and happy and loves her gluten-free food

[daffadilly]

It is common for people with compromised immune systems (us) to get giardhia.

Also it is common to blow off the test results from Enterolab, when you do not want to change your lifestyle. that is what my son & daughter in law did with my grandson. when they found out that he had "only" two DQ1 genes for gluten intolerance, not celiac disease. Which is really the same thing & I blame Enterolab somewhat for giving these people an out, in their minds anyway. because they think oh well it is just gluten intolerance. I also paid for the poop tests but my daughter in law never sent them in. because my son refuses to go on the diet (& does not want his kids on it) although he has had celiac, I now know since he was a child. He is 36 now & has liver damage already & just went thru a round of antibiotics from a bad ear infection, so his health is starting to suffer. & of course the kids still get tummy aches, the 6 year old recently had birthday cake and had the D for two days. I told my daughter in law, that it was not normal...

So good for you for getting this before your child gets a serious life threatening illness.

You know someone keeps emailing me about a little girl that has leukemia etc & how at deaths door she is, all the while they are feeding her the favoite foods, like pizza etc. she gets awful tummy aches, because of the chemo they say...

It makes me cringe to think how many people are actually harming their children...

I would also encourage you to get the gene test thru Enterolab, there is no debating the genes that you have. It is also just easier to take the whole house gluten-free, instead of trying to cook two meals etc. & just throw out the flour canister, because that stuff is lethal floating around in the air.

[rinne]

What a great mom you are "chewymom" to be so thorough going in your investigation and consideration of the problems your daughter is having.

I started down this path again. I mentioned the loose stools and tummy cramps to my daughter's pediatrician who said basically that diarrhea-type of poo is just normal for some people. I thought that was odd, because I have four other kids, and nobody's poo looks and smells like this. Still, sometimes I wondered if she just complained about her tummy when she was upset or just didn't know how to explain what was going on that was bugging her. After all, she is 95th %ile for height and weight. As for me, I am overweight myself, so I would off and on wonder about celiac and then dismiss it.

IMO your doctor is an idiot in regards to poo. I recall a thread I read recently about a doctor write "non-specific childhood diarrhea" down as if it was normal, the scary thing is it may becoming "normal" because doctors are so uneducated in regards to nutrition as to be dangerous to their patients.

[skbird]

About pizza - if you are anywhere near a Whole Foods, they have a great pizza crust there in the freezer section (Whole Foods Gluten Free Bakehouse). Sort of like a Boboli crust. I was surprised I could eat them because I can't have corn or potato either and that makes gluten-free baked goods tough to find for me, but these are mainly rice and sorghum and are DELICIOUS.

A little pricey, but heck, it's good!

Stephanie