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Officially Diagnosed And One Week Gluten-free!

chilligirl

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chilligirl Apprentice
chilligirl
Posted

So, I got the positive blood test for celiac on October 13th, but was still eating gluten, waiting for my scope and biopsy to confirm the diagnosis. Then on November 7th I found out I was pregnant. November 9th I went gluten free with the approval and recommendation of my doctor, as it's best to be gluten free if you're pregnant and have celiac.

Wednesday I saw the specialist. He took one look at my blood work and said I am officially diagnosed with celiac disease. He'd normally do a biopsy/scope too, just because it's a life long and serious condition, but feels my blood test was a strong enough indicator to make the diagnosis. In March, he wants to test my levels again and see that they're going down. If they're not, it means I'm getting gluten somewhere I'm not aware of I guess. Once baby is born and weaned, he'll want me to do a challenge and then do a scope and biopsy, just to see how far along my disease was.

The doc was really pleased with how informed I was, which was kind of flattering :) I thank this site and a couple good books I picked up!

He also said most of my symptoms sound more like IBS, but is hoping they'll resolve with gluten removed.

I've been "glutened" once - yesterday. Interestingly, it seems I was right in thinking that gluten was making my asthma worse (I started noticing a couple months ago that after eating bread, pasta, etc., I'd be really wheezy). The gluten was hiding in a raspberry milkshake. A few sips had my chest tightening. I stopped drinking it, and ate my salad, and things eased up. Took another sip of the milkshake, and immediate tightening again. Then everything went right through me if you kwim. I actually think that's really positive, that I can tell from just a tiny bit if there's contamination. Makes it easier to recognize it and limit it!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am glad you were able to get a diagnosis and will now be eating safely for you and the baby. I do disagree with the doctor wanting you to do a challenge after the baby is born. I would think long and hard about agreeing to that. You would need to go back on gluten for about 3 months and the object of the challenge when a GI does it is to redamage your intestines, in other words they want to undo all the healing that has taken place in order to diagnose you 'officially'. Chances are that challenge will make you sicker than you were before you were diagnosed. Your body is not going to like you starting to eat what it considers a poison and is going to tell you so. If you get a good resolution of symptoms gluten-free combined with the positive blood tests remember it is your body and your choice whether to challenge and biopsy or not. If you are still having issues it wouldn't be out of line to do an endo, without a challenge to see if something else is causing continued issues but if you are symptom free and feeling good IMHO making yourself sick to prove something already shown by blood and resolution on the diet is barbaric and cruel.

GFinDC Veteran
GFinDC
Posted

I agree with Ravenwood on the challenge after being gluten-free. You will probably know by that time yourself without doing any challenge. I do wonder if you were having a dairy reaction though from the milkshake? It is common for celiacs to be lactose intolerant until our intestines heal. Just a thot.

cat3883 Explorer
cat3883
Posted

Please don't do the challenge. You will get really sick. And if he has diagnosed you you shouldn't have to do that. He will be able to tell by your numbers from your bloodwork. And as for IBS I think all Celiac Patients could be diagnosed with that. Our small bowel is irritated, therefore IBS. Good luck to you. The gluten free diet really isn't hard if you make up your mind to follow it. The first few months are the hardest as you will still feel crummy during that time. But once you feel better you won't want that poison ever again.

chilligirl Apprentice
chilligirl
Posted
  • Author

Thanks for the feedback :) I probably won't do the challenge, as I'm officially diagnosed even without the biopsy, and, as you pointed out, why re-damage my intestines?

As for the milkshake, I don't think it was a dairy issue - I drink milk, eat yogurt, and eat ice cream all without issue.

The gluten free eating is going really well. There's been a couple of times where I've been picking up takeout for the family, and at a loss for what to get myself, but it's worked out.

examples - one day I got Subway for the family, then got beef souvlaki with rice and greek salad for me (checked with the chef, no gluten - yay!). Yesterday, i was hitting the drive thru at DQ for the family, and feeling very sad that I couldn't eat anything from there other than ice cream. Went home and ate my gluten-free chilli. However, checked online, and DQ's grilled chicken salad and honey mustard dressing are gluten-free - woot! Today, dh wanted lunch from our favorite sushi place. I got beef teryaki without the teriyaki sauce. Asked them to make sure the grill was clean, and it turns out, they don't use ANY sauces on their grill - all sauces are added after! So I felt totally safe/comfortable eating my food from there. Brought it home, added a few drops of sesame oil, a capful of sushi seasoning (gluten free), and a bit of salt for flavour - yumm!

The cooking is pretty easy for me - I make the stuff I'd usually make, except use cornstarch for thickening instead of flour. Last night was the first more "challenging" meal: I made a really nice chicken and sundried tomato basil pesto sauce. Made pasta for the family, which I can't eat obviously. For myself, I tried some polenta. Fried it up in a bit of olive oil. It was okay. Didn't love it, but didn't hate it either - it basically just acted as some filler for the sauce.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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