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Really Bad

gluten free overseas

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gluten free overseas Apprentice
gluten free overseas
Posted

I think I was glutened really badly. I bought some buckwheat flour--the same flour I've bought in the past. It looked different, but I bought it anyway. I made bread and pancakes with it and am in really bad shape now.

I get immobilizing anxiety, I feel like I'm losing my mind. Along with vomiting and pain in my back too. I'm so discouraged. After about 5 hours, I'm able to breathe enough to sit in a chair and watch TV or check email.

I'm having flashbacks of being in the hospital and being in so much pain and the doctor saying he couldn't do anything else. I thought I was dying back then. I know I'm not dying now, but it feels like it.

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rosetapper23 Explorer
rosetapper23
Posted

I'm so very sorry you were "poisoned." Gluten seems to act like poison with so many of us with celiac. I wish there were something I could say to make you feel better....but I know that you just have to get through the worst of it before that can happen.

I fully understand what you're going through...and I hope you start feeling better soon.

Keep thinking, "Better times ahead...."

eatmeat4good Enthusiast
eatmeat4good
Posted

God, I hate that feeling of going downhill when you know you have been glutened. I wish I only had the gastrointestinal problems, but I have full on neurological problems...anxiety and despair set in and it seems it will never go away. It is horrifying. I know what you are going through. Sorry you have to go through it. I was lost completely when Dr.'s said they couldn't help....so I know the despair of that feeling too. Hopefully this will pass quickly and you will be ok soon. At least we do know these episodes are temporary in spite of how horrifying they can be. hang in there.

gluten free overseas Apprentice
gluten free overseas
Posted
  • Author

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

AVR1962 Collaborator
AVR1962
Posted

Try to be patient with yourself. I do understand exactly what you are saying. I get so depressed when I get glutened. My speach and balance are affected and I too feel like I am losing my mind and do crazy dumb things like leaving on burners and buying food for a planned meal twice. I sometimes wonder if I am ever going to figure it out but then when I get to feeling better I realize I have just got to be careful. Part of it is learning what works and what doesn't and forgiving ourselves for our mistakes and moving on.

Juliebove Rising Star
Juliebove
Posted

Sorry to hear that. Gluten isn't an issue for me. But I do have an egg allergy. A couple of weeks ago I stupidly ate a bite of the gluten-free bread on my daughter's sandwich, totally forgetting that the wrapper listed egg in the ingredients. And then I paid for it. It happens.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

Unless these are regular glutened symptoms for you it would be a good idea to visit the doctor or even the ER. We tend to forget that not all symptoms are gluten related and you could have something else going on. The not being able to open your eyes and sagging has me a bit concerned. Do give us an update on how you are doing.

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gluten free overseas Apprentice
gluten free overseas
Posted
  • Author

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

Glad to hear you are doing better. That picture is of my little Pooh Bear when he was a couple years old. I have got to try again to get a picture of Maggie, she is a Blue Merle Dapple Doxie and adorable also. I have trouble resizing pics and the ones I have taken so far are too big. Thats my task for today.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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