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Member Since 23 Jan 2012
Offline Last Active Jan 11 2013 01:52 PM

Topics I've Started

Starting Scd Soon!

31 December 2012 - 05:50 PM

So, after reading a post here the other day, I was intriqued by the the book, Breaking The Viscious Cycle, which describes the Specific Carbohydrate Diet (SCD).

You see, after a period of over one year (very strict adherence to the diet), my oldest son's ttg IgA levels are still positive (currently at 95 down from a starting point of about 150+).

His DGP levels are negative and have been for while, which I read means that it proves he has no gluten in his system. But, the positive ttg IgA level means his gut is still not healing.

He has no symptoms other than low growth. So, we bought the book and are starting within a few days.

I bought the yogurt maker today (along with an ice cream maker, because I want to make homemade ice cream from the yogurt).

I'd love to hear about anyone's experience with SCD.

My Kids' 6-Month Blood Recheck

19 June 2012 - 03:45 PM

So, after getting a call on Friday from my kids' GI doctor saying their preliminary test results looked normal, TODAY (3 work days later), I get a call saying that their celiac panels show elevated levels. The NP said something like "well, it wasn't the celiac panel they called about last time, it was everything else (I'm assuming iron, thyroid, or whatever else they tested?).

Then, she goes on to say that they (the kids) must be cheating on the diet. This is greatly upsetting to me because 1) I was diagnosed with Celiac around the same time (we all got tested when we found out one of my kids had it), and 2) I buy the food AND feed the kids, and I KNOW that NO ONE ate gluten. We changed out all of our kitchen utensils, pots and pans, EVERYTHING. We are ALL eating gluten free, and my kids, especially the oldest, is very anal about checking to make sure whatever he eats is gluten free. To hear they think our kids are sneaking food or whatever just makes me upset.

So -- it's really about 5 month's later for one of my kids (by the time we got the initial diagnosis, etc). 6 months for the other.

Is it that it hasn't been enough time, yet? I thought going strictly gluten free would have made a difference by now. I mean, barely no eating out, and only ordering off of the gluten-free menu. Maybe eating out 2 times a month! ONLY buying food that is gluten free, vitamins, toothpaste, etc. I should know -- our grocery bills have gone up significantly making sure we are only buying gluten-free cereals, pasta, pretzels, oatmeal. We eat a lot of salads and chicken, vegetables, fruit, some dairy. Even our condiments -- gluten free!

I argued (well, strongly suggested) to the NP that, no, my kids are NOT cheating on the diet, and that we were all eating gluten free. She said she'd talk to the doctor and get back to us. We actually have a follow up appt. in a couple of weeks.

What do you think?

Intolerance To Egg Whites

16 April 2012 - 06:16 PM

I've gone through 26 pages of posts, and I didn't find anything that talked about having Celiac but also intolerance to egg whites.

I know I'm not allergic to egg whites, as I had a comprehensive food allergy test a couple of months before my Celiac diagnosis. But, since I went gluten free in January, I've started to notice that my stomach gets upset and I get bloated and gassy whenever I have egg whites.

I've heard of some people being more sensitive to dairy once going gluten free, but I've never heard of problems with egg whites unless you've already had an issue.

Am I the only one? Also, can stopping gluten cause a reaction to the other IgA antibody trigger foods? Do I now need to start worrying about dairy, soy, chocolate, corn?

Tendonitis And Broken Bones

15 February 2012 - 09:18 AM

I would just like to know what people's experiences are with any sort of tendonitis; back, joint, or hip pain, other kinds of "itis"; and broken bones.

I'm 44 and was just diagnosed positively about a month ago. Before that, I didn't have any sort of GI symptoms or anything to point that DRs to test for celiac. I found out about this by accident (long story).

In the past few years, I've had plantar faciitis, achilles issues (ongoing), my shoulder joints "pop" when doing certain exercises and I actually found out I have a micro tear in one shoulder's tendon. Two days ago, my big toe on my right foot started hurting -- seemingly for NO reason -- as if I have a stress fracture. I can't put any pressure on it at all. The pain is constant. (ie, not getting better or worse with rest or exercise). I had a stress fracture in this same foot YEARS ago (like 35?) while in college, and it is sort of the same feeling but a bit worse. I had done some lower body weight training that day -- which had included walking lunges -- but nothing seemed to hurt me at the time. I was actually in bed sleeping(!) when the toe started to hurt.

So, my question is, have any of you experienced what you feel is these sorts of pains, either for seemingly no reason or, if you exercise, for example, do you find yourself getting injured way too much?

I had a DEXA scan after my diagnosis. And, although the numbers are in the negative percentile, they seem within a normal range (I haven't yet discussed this with my DR).

Gi Symptoms And Canker Sores After Going Gluten Free

10 February 2012 - 08:43 PM

I was diagnosed by "accident" with Celiac. One of my sons had a test for Celiac disease during a routine screening for growth and development issues. When he was diagnosed, we were all tested. I, and one other child, came back positive. None of us had any symptoms, at least the "classic" GI symptoms.

Now, for years, I had canker sores, off and on, some years worse than others. But, I remember a particularly bad year when I had them maybe 4 times, probably after my 2nd son was born. My dentist told me it was a virus and prescribed Valtrex. Nothing seemed to work until I stopped using flouride toothpaste. Why this worked was a mystery to me since I also used a flouride mouth rinse with no issues. The theory that is was some sort of additive in the toothpaste.

Then, years later (recently), when I was looking into the symptoms of celiac and saw that canker sores were a symptom, I thought I had found the answer.

Well, I've been gluten-free for just over 3 weeks. Like others I've seen on the board, I experiences a few days of withdrawal symptoms, when I felt tired and had migraine-type headaches. But, after about 4-5 days, I felt better and the bonus was that I no longer felt tired when I woke up in the mornings. No longer did I feel like I hadn't slept a wink when I supposedly had gotten 8 hours of sleep. This, if anything, was probably my only noticeable celiac symptom (that I'm aware of so far).

About a week and a half ago, I ran out of my toothpaste and started using one we had around the house. Within a few days, I got three canker sores. I finally put two and two together and realized that it could be the toothpaste. I stopped using it, finally got my old brand back, but the canker sores just are not going away!

Also, like I said above, before going gluten free, I didn't have any noticeable GI symptoms. But, now, even though I don't have diarrhea, I have VERY loose stools. Sorry to be so gross. But, there is just no form at all. Why would this be? Is it from some other issue? Like before, eating gluten made me slightly constipated, but not really, enough to have more solid BMs, and now that I'm off, some other issue I have is causing them to be the opposite?

Sorry to be so gross.

But, I feel like I have reverse celiac or something. Like, I had no symptoms before going gluten-free (other than a positive blood test, confirmed biopsy, and maybe feeling tired). And, now that I'm off of gluten, the symptoms are all starting to appear. What gives?

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