Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am So Stupid

MJ-S

By MJ-S
in Coping with Celiac Disease

Recommended Posts

MJ-S Contributor
MJ-S
Posted

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Don't forget your vitamin pills, and any meds you might take need to be gluten-free also. Tea and any drinks for that matter need to be gluten-free as well.

jenngolightly Contributor
jenngolightly
Posted

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

It's a steep learning curve and you've just started the climb. Be kind to yourself and celebrate your successes! Woo hoo, you changed your toothbrush! {{{Hugs}}}

domesticactivist Collaborator
domesticactivist
Posted

You're not stupid. The sneaky stuff is hiding all over the place!

Here are a few more things you might have missed (I say so only because we missed them at first):

Wood utensils

Cutting boards

Serrated knives

Scratched plastic or teflon (we switched to all stainless, glass/pyrex and (reseasoned) cast iron)

Surfaces from the kitchen that you haven't cleaned since baking (we store our glass jars on top of the cabinets - had to wash all of those and wipe down the surface!)

Condiments you had before going gluten free

Spices you had before going gluten free

Personal care products

Also, it's a good idea to really soak/rinse naturally gluten free nuts, beans, grains, and grain-like things before cooking or eating them.

Good luck, and congrats on noticing the toothbrush :)

Dee777 Rookie
Dee777
Posted

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

Awww you are not stupid, only learning! Almost everything you mentioned I have done too with the exception of the Average Joes, but I WAS glutened at Chili's a couple weeks ago and am still sick as the proverbial dog :(

Don't feel bad about the slip ups, we have so much to learn and it's so overwhelming! I was diagnosed Jan. 25 and am having a terrible time getting used to this too. Keep your chin up!

Dee

modiddly16 Enthusiast
modiddly16
Posted

You're not stupid at all, it was and is a learning curve for all of us. Heck, back when I was diagnosed, they were still saying that Rice Krispie treats were gluten free before realizing that malt was on the list of no nos. I regularly ate those and Twizzlers, because honestly, who would've thought there'd be wheat in those!? It was one of those days at a baseball game that I just didn't feel good and I finally happened to look down at the package and saw WHEAT FLOUR. I was super happy about it.

Hang in there, it'll get easier!

WhenDee Rookie
WhenDee
Posted

You aren't stupid! I have done far stupid-er things than what you listed here, LOL.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

You aren't stupid. Some of us are sensitive to lower levels of gluten than others. I am one of these super sensitive celiacs. It takes us longer to figure out the gluten free diet since there are more precautions which we have to take. Keeping a food diary will help. Also try not to change more than one thing per week because it can take a few days to notice a reaction. It took me a couple of years to figure out my diet, but in the meantime I did continue to improve. You will get there.

MJ-S Contributor
MJ-S
Posted
  • Author

Thank you for all the support! It's a learning curve and I just need to be patient.

One of the dangers of negative blood work is that I've felt that I couldn't possibly be soo sensitive as to have to throw out my favorite wooden spoons which have been washed multiple times since the kitchen went gluten-free (or could I)?

So after not feeling great last week after I stirred gluten-free pasta with an old spoon, I bit the bullet and put aside all my wood utensils. Am now using only the one new spoon I just bought, and will replace the rest. I think I'm already following all your other suggestions. So far so good.

Loey Rising Star
Loey
Posted

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

You are NOT stupid. We all are learning our way around this illness. I'm pasting below a link to a list of medications that are "supposed" to be gluten-free. Check the labels anyway. Also Triumph Dining has a whole series of grocery books, restaurant locators and dining cards that explain celiac in the language of the restaurant and the in english on the other side. Hope this helps!

Loey

Open Original Shared Link

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.