A Celiac Update

by inspiredrd on August 28, 2012

I had another celiac dream last night, but I can’t remember what it was about.  Probably because gluten is still clouding up my brain one year after diagnosis.  That’s right.  One year later, as careful as I’ve been, the lab results say my body is still reacting to gluten.  Don’t ask my doctor about it though because according to her, she has “no idea how to interpret these results.”

Awesome.  Just what you want to hear from your doctor.

There is some good news though.  All of my other labs came back normal, including vitamin levels which I was worried about.  No deficiencies to speak of.  My cholesterol is looking stellar (Total cholesterol 178, HDL 81, Chol/HDL ratio 2.2), which means overall I’m healthy.

But…

The tests my doctor didn’t know how to read were NOT normal, and definitely explain why I haven’t been feeling well.

My symptoms that keep cropping up include:
-night sweats
-hot flashes during the day
-headaches
-body aches
-upset stomach
-bloating
-brain fog
-low energy
-finger swelling

My DGP-IgA was negative (barely) at 19.08, and my tTG-IgA was positive at 26.43.  If you have no idea what that means, that’s ok, you could still be my doctor.

What I understand it to mean, according to the University of Chicago, is that gluten is still entering my system and my body is reacting to it.

How is this happening?  Well, I know I’ve been “glutened” a few times while eating out at a restaurant or social gathering.  But what if it’s sneaking into my diet at home too?  We did two original kitchen cleanses in the beginning, but have since become a little bit lax.  The crackers the kids were only allowed to eat outside turned into the crackers they eat everywhere.  Restaurant noodles have made their way into our bowls that are cleaned in the sink with the sponge, pizza is eaten at the table and crumbs aren’t wiped up quickly enough.

I’ve gotten lazy.

And as much as I’ve tried to only use gluten-free personal care products, it’s still a chore to figure those things out.  Maybe some soaps or lotions are getting me?

If you have any suggestions, please let me know.

I’m going to do another cleanout of the kitchen, and will be making September a “whole food” month.  I’ll tell you more about that later this week.

Other than that, I’m going to keep on trucking…and start searching for a new doctor.

  • http://glutenfreetraveller.com/ Gluten Free Traveller

    It’s really challenging when you don’t live in a completely gluten free environment as it’s almost impossible to stay 100% safe when there is gluten around. :( I hope you can figure out what’s causing your symptoms so that you can heal quickly! I know how horrible and frustrating lingering symptoms can be…

    Having a separate sponge for cleaning plates etc is a big one for avoiding cc and something I try to do as much as possible when I’m eating at the homes of friends and family.
    Separate utensils is something else I’d suggest trying (if possible?), especially as utensils drawers can hold wild crumbs!
    Have you checked that your toothpaste/mouthwash is free from cross contamination?
    Good luck! :)

    • inspiredrd

      We weren’t doing a shared kitchen until I let things sneak in recently, so I didn’t have multiple sponges. I just threw away the old ones and will be de-glutening the kitchen again. I don’t cook anything with gluten in the kitchen, and have been careful (I think) to keep crumbs off the main counters where they could get into the drawers. I know my toothpaste is gluten-free.

  • http://heathersokol.com JustHeather

    Do you drink cocktails at all? I tracked mt regular contamination to vodka. Absolut is the worst offender and the most commonly served in restaurants. Good luck! It’s not fun trying to figure it all out, but you’ll get there and feel so much better.

    • inspiredrd

      My tests were done in June, and I know I had some cocktails before that. Now I am realizing that I react to all grain alcohols (even ones that are supposed to be safe), so I have cut them out. Argh, so frustrating to have to figure all of this out! Thanks for the tip Heather.

  • http://www.dineanddish.net Kristen

    Oh hon – I am so sorry… I had no idea people with celiac had to go through so many precautions.
    I hope you begin to feel better and stay feeling better soon!

    • inspiredrd

      Thank you Kristen! It’s a challenge for sure.

  • Tiffany

    I don’t know if you are working with a general practicioner (sp?) or a gastroenterologist, but if you aren’t already I would totally recommend working with a good gastroenterologist. Hang in there!

    • inspiredrd

      Thanks Tiffany, this was my GP. I need to find someone who knows more about celiac.

  • https://talksjustfine.wordpress.com/ Rachel

    Ugh, I have totally been there. You get a diagnosis. Make changes. Feel great in comparison to how you were feeling. Then the honeymoon fades and you realize something is still giving you trouble, or maybe there is a new something.

    August 2008: I was diagnosed with hypothyroidism (finally!!). I had symptoms forever, but because I was thin the doctors were thinking “of course it can’t be hypothyroidism”. My endocrinologist ended up diagnosing me with Hashimoto’s Thyroiditis. Labs came back “normal” but the presentation on the ultrasound with classic.

    August 2009: Despite a lab test coming back negative for Celiac, I give gluten free a try. I was so bloated I could hardly stand it, so painful. My endocrinologist encouraged the trial, because Hashimotos and Celiac tend to travel together. 6 weeks later. I drop the bloat and 10 pounds. Feeling so much better!

    November 2010: No more oats, even gluten free oats. They make me nauseated. In the following spring, I tried them again. Still no oats.

    May 2012: Bye bye dairy. Acne improves. Intermittent intestinal cramping went away.

    June 2012: Sulfites! Really? No hard cider or wine. I end up with big blotchy rash all over my body that burns. It’s not immediately, usually 12-36 hours later. Alcohol of choice – rum. Nothing beats a good mojito.

    All of this to say, it’s a frustrating battle. Stick it out. And get your thyroid checked, totally could be hypothyroid symptoms. One autoimmune disease increases your chances for another. Make sure your doctor checks TSH, T3, and T4. Some doctors read labs so that TSH is normal up to 5.0. People with autoimmune disease should definitely stick below 3.1. My sweet spot is 1.2.

    • inspiredrd

      It is frustrating, thank you for sharing your journey!

  • http://www.healthyjasmine.com Healthy Jasmine

    I understand you cannot have your kids go gfree since it is a genetic disease, they may need to get tested later on in life and you need them to eat gluten. I would agree, no gfree oats either, I was still getting very fatigued after eating gfree granola, I am way better and so are others. For lotions, I use coconut oil on my skin and my daughter’s skin, never felt better and no more rough heels (and cheaper too!) I use Pangea Organics and Emminence skin line, awesome stuff! Did you see my post on fluoride? Something to think about since I did a complete overhaul 7yrs ago. I am doing a complete elimination diet per our new allergist request for my son, so everyone is going on the plan in Sept. Sounds like we will be going along the same path soon. :) Hang in there. Also visit http://www.gluten.net for some great info!

    • inspiredrd

      Thanks Jasmine. I had the kids tested this year, but definitely want them to stay on gluten for future testing. I’ll be taking the gluten out of the house though.

  • http://shinelikestars-intheuniverse.blogspot.com/ Jennifer

    Do you drink wine? A lot of the barrels that wine is stored in are usually used to hold grain or wheat first. It took me over a year to figure out it was the red wine. :)
    Good Luck! I’ve been there and still am occasionally.

    • inspiredrd

      There seems to be a huge controversy about the wine barrels. Why must it be so complicated?

  • Sharon

    I am in the same boat. Was diagnosed 2 1/2 years ago and recently had a follow up endoscopy only to find I haven’t healed much at all. Intestines still showing damage. I am also the lone celiac in my house and have 3 small gluten eating children crumbing up my house constantly. I cook 90 percent gluten free but they still eat their regular cereals bagels bread, etc. I try to wipe everything down after I know they had gluten and they are trained to wash hands. I have seperate gluten counter space with toaster where are the gluten foods are prepared. I know my toothpaste is gluten free but I too don’t know where to begin looking for gluten free shampoos soaps etc. some days I feel like I’m an outsider in my own home. Like I don’t fit in or belong with the rest of my family. I need to live in a bubble! It is very discouraging when you feel like you’ve done so much but the tests show you haven’t done enough.

    • inspiredrd

      Oh Sharon, that’s frustrating. I find gluten-free shampoo and conditioner at Sprouts, do you have a Sprouts? They are SO good at labeling for gluten-free that it makes it super easy.

  • jada

    Alyssa, You may have considered this already but have you checked your hormones at all? The symptoms you mentioned can all happen with hormonal imbalances. I have a few of your symptoms too but I think most of mine are adrenal related. Have you had your adrenals checked? Just thought I’d throw those ideas out there! Are you doing things to heal your gut? High potency probiotics, fermented foods, bone broths?? I hope you can get some answers! It’s so frustrated not feeling 100% especailly with little ones!

    • inspiredrd

      I need to do more of the healing foods, that’s for sure. Sounds like a hormone check would be a good idea. Thanks.

  • Real Food RD

    how frustrating! For someone as knowledgable as you to be struggling with this is really discouraging. I how you feel better soon.

    • inspiredrd

      Thank you! You would think it would be easier as an RD. How hard must it be for those with no knowledge of nutrition at all?

  • Real Food RD

    how= *hope*

  • http://www.rockahealthylifestyle.com Ken Scheer

    If your stomach is still reacting I would recommend trying to get the entire family eating this way and not allowing any gluten to get in the house. Now I know it is harder with little ones but unless you can keep things extremely clean you will run into this issue as well. As far as the hair and skin products go, this could be your issue. I’m not sure what you’re using but that could be your cause. Are you having these issues daily? I can tell you that I’ve been feeling off as well but that could be a multitude of things but when I’m in and out of my car all day…..the heat is causing some of my biggest issues. Let me know how else I can help. I hope you feel better soon!!

    • inspiredrd

      Thanks Ken, I know I need to do another kitchen clean. Maybe I should post a sign on the door too, “NO GLUTEN IN THIS HOUSE!” :)

  • http://www.sideofsneakers.com Heather @ Side Of Sneakers

    How frustrating! It’s so hard when doctors, who are supposed to have all the answers, give you a big fat question mark. :(

  • Tamara Groat

    I”m 50 and have most of your symptoms!.. I believe mine are all hormone leel related, and so its a never ending “fine-tuning” with my Dr. Right now things are OFF, and I’m definitely experiencing the night sweats, the daily hot flashes, and the low level of energy, and sleeplessness at night as well…I don’t know anything about celiac, but I do know that these symptoms are also related to hormonal levels.. good luck in your search for the correct balance

    • inspiredrd

      Thanks Tamara, I’ve been wondering about the hormone connection.

  • http://glutendude.com Gluten Dude

    Although you’ve gotten some good advice above (and some questionable advice as well), I think you nailed it yourself. You got lazy. Celiacs can’t let their guard down, even for a second. All it takes is one lousy slip-up and we’re screwed. It’s the unfortunate nature of our disease. Time to rededicate yourself for your health and your sanity.

    BTW…loved this line: “If you have no idea what that means, that’s ok, you could still be my doctor.” Sad…but funny.

    • inspiredrd

      Rededication happening right now. Thanks Dude.

  • http://golbsalt.com go lb. salt

    svedka & chopin are gluten & grain free vodkas – safe for the celiacs we have.

    udderly natural products have great gluten free products – soap & lotion. one cautionary note, they do contain dairy and nut oil as additional allergenic concerns for those who have issues.

    this is a great place to start weeding out additional glutenizing influences aside from your alcohols of choice.

    good you’ve ruled out other deficiencies, that suggests your gluten intake is not through ingestion or other deficiencies would be occurring (or at least not so significant as to cause other deficiencies).

    absorption of gluten through the skin would still show affects of glutenizing.

  • http://golbsalt.com go lb. salt

    FYI, udderly natural can be found online udderlynaturalproducts.com and they are local. they will be with us this evening at the market in Scottsdale.

  • jada

    I just talked to a friend of mine who is also celiac and she just found out she has hashimotos as well. I don’t kow If that’s already been checked but If not it’s something to look into. It’s far more common than we think. Most conventional doctors don’t test for it.

  • Pingback: September Whole Foods Challenge()

  • http://gfreegirlpastaworld.blogspot.com Jennifer M

    I just stumbled on your blog from the “dude’s” site and wanted to offer some advice….since you kinda asked for it. :)
    I was diagnosed in 2001. Up until 2 years ago, I felt crappy all the time. It wasn’t until we did a clean sweep of the ENTIRE house, that I started to feel better.
    When you have celiac, you really can’t have gluten in your house.
    no lotions, no shampoo, hand soap, make-up, etc.
    I would encourage you to do it.
    It seemed so wasteful, but we gave all of it to friends and local shelters.
    We started with the pantry, then to the spice shelf…then went through all the cleaning and personal care products. Then I went through my make-up and perfumes and medicines.
    I am 2 years out and feel incredibly different. YOU CAN DO IT!

    • inspiredrd

      Thanks for the advice! I’ve checked the soaps and lotions, use gluten-free shampoo and makeup. The only thing left is a few snacks that the kids have. I guess I should get it all out.

  • Lily

    I use gluten containing body wash and it’s fine. It’s really only cosmetics you may ingest you actually have to worry about, since you can’t absorb gluten through your skin. You could have a secondary skin reaction, but it isn’t the same, and it isn’t dermatitis herpetaformis! Which I have, when I get glutened.

    It can take a really long time for gluten to finally be totally gone from your system, especially if you’ve had periodic slip ups over this year. But impress on your kids how vital it is that their crackers don’t get near Mommy’s food. And make sure you have separate cutting boards, toaster, pourous cookware, etc. if you have a dishwasher sharing pots and pans is fine, but without a dishwasher you’ll want your own frying pans and pasta pot. Maybe make everything gluten free a certain color? There’s a lot of red cookware out there (my cutting boards and toaster are red in my shared kitchen- it’s like a big STOP sign for gluten!) and it works really well.

    I also found after six months or so off gluten completely I was way more sensitive than when I started.

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