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My Kids' 6-Month Blood Recheck
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3 posts in this topic

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?

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After 6 months both my children still have elevated numbers but they have come down. The GI doctor was not concerned as the numbers are coming down. My son's numbers were extremely elevated (above 300) and after 6 months were in the low 100's. I was told it could take a year to a year and a half for his numbers to normalize. My daughter's numbers were in mid 70's and are now down in the 40's. My son is very careful about eating Gluten free. My daughter tries her best but at some chicken nuggets and a graham cracker the week before her test.

So depending on how elevated their Celiac Panel numbers were it can take awhile to normalize. Keep up the good work!

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10 mos after dx my sons levels were still slightly elevated. Just had a 15 mo re-check and hoping they are at 0 now. Mine and my dd were at zero within a few mos. None of us are cheating. Everybody is different, and as long as the numbers steadily go down, I wouldn't worry too much yet.

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    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
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