Confused About Celiac And Increased Sensitivity To Gluten

[missuswayne]

This summer after talking with a friend whose son has celiac, I began suspecting I had a gluten intolerance or even possibly celiac, and promptly removed gluten from my diet. After many, many years of nagging GI issues (nothing debilitating, just nagging recurrent stuff), I started feeling better just after a few days - most noticeably I had less gas and cramping after eating, and I started to become more "regular". After a few weeks passed, as a test I ate a piece of pizza, and 12 hours later was sick as a dog (gas, cramping, diarrhea). Over the following weeks I noticed my sensitivity to gluten became more pronounced - at Halloween, for instance, I ate a small piece of Twizzler, not realizing it had gluten. Again, the next day, I was sick. I have read that removing gluten from the diet can cause increased sensitivity in people with celiac, so I wasn't too concerned.

However, it's been a few months now that I've been gluten-free (aside from a few errors, like the Twizzler), and I'm starting to wonder if I've become so sensitive that even touching gluten will make me feel yucky. I have two kids and a husband who do eat gluten, and I prepare food for them on a daily basis, particularly the kids. So, I handle gluten-y stuff, but I don't eat it. But in the last week or two the crampy bloated feeling seems to be returning after I eat. Do I need to banish gluten from the house, or what? Should I not even touch it?

Just a bit of background - I'm 37, I had postpartum thyroiditis (overactive), and have the antibodies for Hashimotos (although my levels are presently normal), Over the years I have been diagnosed with IBS, GERD, and ulcer. I've had depression/anxiety for several years. I had a blood test for celiac after I had been gluten-free for about 6 weeks. It came back negative.

Thanks in advance for any advice!

[climbmtwhitney]

Hi.

Are you using the same toaster? Same old spatulas, wooden spoons, cutting boards, old scratched plastic measuring cups? Or the same scratched pans? Are you sharing the same margarine tub, same jelly, same PB, etc? Cross-contamination is a big issue. And, it is very difficult to use separate everything in gluten / gluten-free kitchen. I've found that we've become hypersensitive too, which seems so unfair. Anyway, we became a gluten-free household and I replaced anything and everything that might cause contamination. So we feel safe at home. I even woke up at night once, sitting straight up in bed, when I realized in my dream that we were still using the kid's favorite plastic divided trays that were full of cut marks. So nice to know that some of my best thinking is while I'm asleep. Ha!

Sonya

[missuswayne]

Thanks for replying - yes, we're using all the same stuff, although I'm careful not to use the same knife to butter my son's toast and then my gluten-free toast. Although we're sharing butter, so there you go.

I have to say, some days I wonder if I was better off before going gluten-free! I know this is the right thing for me to do, but without the positive diagnosis I can't help doubting myself sometimes.

Oh, and as for doing your best thinking while asleep, I do this also. Mostly it happens as I'm just about to drift off to sleep.

[leadmeastray88]

It's still possible that you are Celiac. You had the bloodwork done 6 weeks gluten free and that is long enough to give you a false negative. You need to be eating gluten to have accurate bloodwork. Even then, we all know here that the bloodwork can be terribly inaccurate, as people here have been diagnosed with POS biopsy but had NEG blood.

If you find you need that official diagnosis to stay gluten-free, then you'd need to eat the equivalent of 6 slices of bread a day for atleast a month (I think that's the suggested amount/time) but given your increased sensitivity, I would think that keeping yourself healthy should be enough to keep you on the diet. If you feel so much better on it, you should stay on it.

And I agree with the other poster. Having a combined household like that is tricky because of cross contamination no matter how hard you try, flour flies everywhere and gluten hides in every nook and cranny.

You need your own everything (butter, peanut butter, jam, mayo, anything you stick a knife in, toaster, wooden spoons, pans etc.) unless you decide to go totally gluten-free in your house.

I hope you feel better soon. Sometimes even when we're positive we've eaten something safe, we mess up. It happens. If you're still feeling sick re-read ALL of your labels. Manufacturers change their ingredients without warning sometimes.

I hope you find the root of your problem! Good luck!

[dilettantesteph]

I know what you mean about it was better before going gluten free. I also got more sensitive. It seemed I was doing worse gluten free than before. (Except for the pooping in my pants part.) It gets better over time. After a year and way too many cross contaminations, The celiac half of my family has convinced the non celiac half of my family to go gluten free too. They have to be too careful, and it seems to happen all the time anyway. Hang in there. It will get easier.

[missuswayne]

Yeah, I've already warned my husband that our home might have to be gluten-free. He's ok with that, and the kids won't even notice (my 4-year old already claims to prefer gluten-free cookies). I don't have room for two toasters!

As for the gluten test, there is no way I'm going to eat all that gluten just to get the positive bloodwork. I have two kids to take care of, I can't make myself sick like that in order to MAYBE get a positive result. I just don't think it's worth it. I've got a recommendation for a celiac-friendly family doctor that I'm going to make an appointment with and see what she thinks, but that's my feeling at the moment.

I also realized, after posting my original question, that I might have gotten glutened this week by accident, which could have resulted in the pain I've been in. I had Starbucks' pumpkin spice lattes 4x this past week, and completely forgot to ask about their gluten content (they are so, so delicious I was probably in denial). And literally 5 minutes after I posted last night, I thought, huh, I wonder if those lattes are the problem. Turns out they have caramel coloring and natural flavors in the ingredients. Not a guarantee of gluten, but I'm pretty suspicious. I'm going to call Starbucks customer service on Monday to see if they can shed any light on the situation (there is NO gluten info on their web site, which is pretty annoying).

[climbmtwhitney]

I also realized, after posting my original question, that I might have gotten glutened this week by accident, which could have resulted in the pain I've been in. I had Starbucks' pumpkin spice lattes 4x this past week, and completely forgot to ask about their gluten content (they are so, so delicious I was probably in denial). And literally 5 minutes after I posted last night, I thought, huh, I wonder if those lattes are the problem. Turns out they have caramel coloring and natural flavors in the ingredients. Not a guarantee of gluten, but I'm pretty suspicious. I'm going to call Starbucks customer service on Monday to see if they can shed any light on the situation (there is NO gluten info on their web site, which is pretty annoying).

I'm pretty sure I read a post a few weeks ago about Starbuck's Pumpkin Spice Lattes CONTAINING gluten. Try a search here and see what you find.

Hope you're feeling better today!

Sonya

[ShayFL]

I think 3 others got sick off of that SB Pumpkin spice.

[missuswayne]

aaaaaaargh!

i really loved them. they just didn't love me back! it's a relief to have figured that out, though.

I think 3 others got sick off of that SB Pumpkin spice.

[leadmeastray88]

I'm pretty sure I read a post a few weeks ago about Starbuck's Pumpkin Spice Lattes CONTAINING gluten.

Yup, that was me who started that thread

Here's the link:

Open Original Shared Link

I have called Starbucks Customer service directly, and they never got back to me. Not by email or phone. So I don't know that they contain gluten for sure, because caramel spice is supposedly safe in the US and Canada. Could be the spice part / something else.

Here's a recipe someone else posted for homemade pumpkin spice latte:

Open Original Shared Link

[ksymonds84]

Yeah, I've already warned my husband that our home might have to be gluten-free. He's ok with that, and the kids won't even notice (my 4-year old already claims to prefer gluten-free cookies). I don't have room for two toasters!

i've seen toaster sleeves when I was at my favorite gluten free bakery for sale. I bet you could find them online. I may buy them for the next time we travel. I think it was $4.00 for a pack of two and they are reusable. You simply put your own bread in them and use whatever toaster you like! I've been gluten free for 10 months, After two months I was so sensitive it drove me crazy to any cc. Now I notice, If I accidently get glutened, I react quicker instead of the next day but its overwith faster as well. So healing can have alot to do with it.

[missuswayne]

Yup, that was me who started that thread

Here's the link:

Open Original Shared Link

I have called Starbucks Customer service directly, and they never got back to me. Not by email or phone. So I don't know that they contain gluten for sure, because caramel spice is supposedly safe in the US and Canada. Could be the spice part / something else.

Welllll, turns out for me it wasn't the pumpkin spice lattes after all. The same week I thought I was sickened by the lattes I also happened to start taking some vitamins again that I had stopped taking a few months ago, some very expensive vitamins that I thought should not go waste. Not long after consulting with you all here, I actually looked at the labels on the vitamin bottles, and lo and behold GLUTEN in the form of defatted wheat germ!

So, I quit the vitamins and got myself a pumpkin spice latte and I'm all good now!