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chi1968

Member Since 23 Jan 2012
Offline Last Active Jan 11 2013 01:52 PM
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Posts I've Made

In Topic: Starting Scd Soon!

11 January 2013 - 01:52 PM

So, we've been doing SCD for almost two weeks now. I can't believe how much harder it is to do SCD than just doing gluten free. Corn is in EVERYTHING! We went to buy a roasted chicken at Cosco the other day -- one of our gluten-free staples when we are short on time -- and it's seasoned with sugar and corn starch! gluten-free salad dressing with sugar! Turkey breast with corn starch, even my taco seasoning with sugar and corn starch.

But, we are learning. I made the homemade yogurt, and we've been using it to make lactose-free ice cream in the ice cream maker, sweetened with some honey. My son (the one who's not quite at "normal" levels) is taking salad for lunch every day instead of a sandwich with gluten-free bread. I've been baking with nut flour, so he has snacks to eat (so far, my husband and I are the ones eating the stuff!), he's been eating beans to try and stay full without the carbs from chips or gluten-free bread or whatever.

I admit that I do feel more rested in the morning. He also seems to wake up with a little more spring in his step (as much as a 13-year-old boy can). So, we are hanging in there, waiting to see if this will do him any good.

Off to make some SCD ice cream now.

In Topic: Starting Scd Soon!

01 January 2013 - 08:42 PM

I have no experience with SCD but did want to comment on healing. Your son's initial tTG was 150; you say it is now 95 after one year. You think that is not an improvement? That it does not show some healing? If it were the same or if it had gone up, THEN I would be worried. But his DGP is now negative, showing you both are doing a good job with the diet. Healing is not an overnight thing. Depending on the degree of damage and the individual healing abilities of the body, healing can take years. It took me four years. If next year his tTG is 50 I would say, well done, only another 50 to go.

The SCD may be another appropriate step to take for your son. I don't know his particular circumstances and other intolerances. I know I have many others which must be strictly avoided. It takes a while to figure them all out (3 years for me :rolleyes: ). Have you trialled him with probiotics, digestive enzymes, L-glutamine, anything else to help healing?


Mushroom - our sons' GI doc (2 of my kids have celiac) was on our case when both of their levels came back positivie after 5-6 months of going gluten free. Saying we weren't doing enough.

Now, I'll tell you, we completely -- and I mean completely -- changed our way of eating. We got new pots and pans, new toaster, new utensils, cutting board, cookie sheets, etc. Cleaned out the house completely of anything with gluten. The kids only take gluten-free food for school lunches, if we eat out it's rarely and always at a restaurant that does gluten-free.

So, we had to get them tested in October and one son had gone from 84 to 52 (he had originally started at 175). The older son had only gone from 126 at the 6-month check to 105 (ttg IgA). They made us see the nutritionist because they couldn't believe that he wasn't possibly not eating any gluten. She, of course, confirmed we were doing everything we were supposed to be doing.

Got my oldest son tested two months later by the Endocrinologist (actually didn't know he was getting a celiac test; the doc ordered it along with another test because we are trying to get him on growth stim meds since he has low growth and low to borderline normal growth hormones. Anyway, in those two months is when he went from 105 to 95. So, the levels are going down, which I was happy with. But, according to the GI doc, he should have been negative after only a few weeks.

Now, of course I know that is not true. And, I was actually surprised to get that reaction from the doc because she seems so reasonable and smart. We have to have him tested again in March. If he's still positive, they were going to make us do a no grain diet anyway. I'm just trying to beat them to the punch, hopefully see his levels REALLY drop, heal his intestines, and hopefully jump start some growth. At 13 years old, he's only 70 pounds. He'll be going into high school next year!

We haven't tried any probiotics, but I'm hoping the homemade yogurt for the SCD diet will help. I'm hoping it tastes good, too. He's OK with limiting the grains. He actually really likes meat, beans, etc. We are starting with the normal diet, not limiting fresh veggies, beans, honey, etc since he doesn't have GI issues (I mean like blood, diarrhea, etc). Hoping this will help him get better and then we can sort of start back on gluten-free complex grains, if only in moderation.

So, speaking of other intolerances, I too have found food intolerance since going gluten free. I couldn't eat eggs for a couple of months. And, I've found that tomatoes cause an allergic-type reaction, even though I'm not officially "allergic" (I had a food allergy test about a month before we found out about Celiac for me and my two sons). Tomatoes make my face itch a little bit, and I get really tired. I haven't found or noticed any food intolerances specifically for my oldest son, but I suspect the tomato thing with him, too. My other son now has a milk intolerance, so we've been going lactose free. Another good thing about the SCD diet.

So, we'll see how it goes. We've sort of been eating normal still, trying to use up some of the food. However, the grocery store let me return about $75 worth of gluten free stuff I bought (like Chex cereal, Betty Crocker Gluten free mixes, gluten-free pasta, etc). Used the money to invest in an ice cream maker to make ice cream out of our homemade yogurt. I figured it's a good way to get the kids to eat it.

The yogurt maker is arriving on Friday. I admit to being very scared about making my own yogurt.

In Topic: Scd Success Partner

31 December 2012 - 06:35 AM

I just bought BTVC, based on a post I read elsewhere on this forum. Last year, my oldest son was diagnosed with Celiac and, as a result, the rest of the family was tested, It turned out the me and one other son also had it. Now, we had no symptoms, not really things you would notice. But, my oldest is very small for his age. We thought nothing of it because both me and my husband were also the same way growing up. But, his sister took her daughter to the endocrinologist about growth issues and it turns out her oldest has a lack of growth hormone.

Long story short, we found out that my youngest son also has growth hormone deficiency. And, that's how we found out my oldest had Celiac, because that is one of the many blood panels they ran.

Now, after a year of being gluten-free, he hasn't really grown. And, despite following a strict gluten-free diet, completely revamping the kitchen, and everyone in the family following the diet, his levels are STILL in the positive range. He started around 150, I think, and we just had another test and it came back at 95 *(ttg IgA). This is after a year of eating gluten-free. The gastroenterologist's nurse was saying he must be cheating, etc. But, that's a load of bull because I know my son, and he's very careful about "the rules," no matter what it pertains to. And, he checks every label, takes his lunch to school etc etc. We were racking our brains but then I read somewhere that if your DGP comes back negative (which his has been for some time) that means that, yes, you are NOT ingesting gluten. But, having a positive ttg IgA means that you aren't fully healed.

We were just happy to see that the levels continue to drop, so we know we are on the right track. But, I had been wondering if just maybe somewhere he was ingesting a small amount of gluten.

However, when I got and read BTVC, I was floored! This completely sounded like my son. In that, it was very possible that his insides weren't healing because he was still eating other starches. He LOVES his popcorn, chips, pirates booty, anything carb.

So, we are seriously contemplating doing this diet. The ironic thing is that I don't do a lot of baking, etc. If we have treats, they are Glutino or Udi's gluten-free premade. But, I went whole hog and bought a bunch of Betty Crocker gluten-free mixes to make over the holidays. Turns out I didn't need them because my MIL made a ton of gluten-free cookies. (I'm wondering if I can return the mixes to the store????).

What I gather from reading the book is that, once his intestines are healed, since he wasn't having intestinal issues, like diarrhea and bleeding, after his levels drop, it would be OK for him to have the occassional gluten-free grain. Which, I think he would like. It just seems like so much more overwhelming than even going gluten-free did. No more popping to the pizza place to order gluten-free pizza for dinner. No more ice cream treats or hot chocolate, etc.

And, having to make my own yogurt sounds tough. However, I do like how one can make "ice cream" from it. And baking with almond flour sounds interesting.

I just have to talk to my son about this to convince him. I hope this will be the key to bringing his levels down to negative AND help with his growth. The endocrinologist put him through a bunch of testing again this year to try and help explain why he's STILL not growing. And, he did fail a growth stim test. But, his levels for other things are falling in low normal range. So, insurance will probably deny him growth hormones (although we will fight). $1700 a month for that medicine is too much for us. But, is he doomed to be tiny his whole life??

If we start, it will be within one to two weeks. I want to buy some almond flour and try out some recipes. And, then there's the committment to buying the yogurt maker and making the yogurt, which sounds really hard.

In Topic: Nightshade Allergy Symptoms?

19 June 2012 - 03:33 PM

Wow! I echo what Tarantula44 said above -- about feeling great for 5 days, thinking that you are getting better, and then starting to feel bad again!

I never had GI symptoms, but I did have fatigue. After FINALLY feeling like I was getting a good night's sleep after going gluten-free, I suddenly started with GI symptoms. First, it was dairy. Then, I noticed that egg whites gave my stomach issues, so I had to stop eating them.

Now, I was exploring doing the Feingold diet and also reading about NIGHTSHADES. I haven't had tomatoes for several weeks because I THINK they were causing me to feel "foggy" and tired. I'm keeping them out of my diet for a while -- along with some other selected Feingold-suggested foods -- because I want to clear my system of them, to see if I do actually have some sort of reaction when I add them back in.

Just is crappy that we have to feel WORSE after eliminating gluten!

In Topic: Intolerance To Egg Whites

17 April 2012 - 02:26 PM

Egg intolerance with Celiac is not unusual.

Are you buying egg whites in a carton? Sometimes they have stuff added that may cause some people issues.


Hi -- no I'm just buying regular eggs and separating them out. I usually make 4-5 egg whites for breakfast every morning with my oatmeal. I haven't done that in a few days, though. Still feeling sick but not sure if that was because I went to a birthday brunch for a friend and the only thing I could eat (besides bacon) was -- of course -- eggs! So, I had an omelet. Been pretty sick since but not sure if that is a coincidence??

Just had a yogurt as an afternoon snack. I don't eat a lot of dairy, but here we go again. Stomach pains and bloating. Am I just resigned to vegetables and maybe some chicken or fish??