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Sick Of Being Sick!

wozzy

By wozzy
in Coping with Celiac Disease

Recommended Posts

wozzy Apprentice
wozzy
Posted

I don't know if it's gluten or lactose or some other allergy that I don't know about (probably soy), but I have been sick like..all the time lately.

Yesterday, we went to PF Changs, but I definitely got glutened, probably from cross contamination. As we were leaving, I got really bad brain fog. Then I got more symptoms as the day went on...Dizziness, nauseous, GI not-funness.

Today, I got sick again. I don't know if it was from these gluten-free cookies I got, from lunch, or from these gluten-free donuts I got (how could I not resist?) but I've also been feeling sick today.

Now it's hard to tell if I have another allergy, or if I really need to lay off the lactose again, or if my intestines are being destroyed again from all the gluten I've been accidentally eating (which isn't even that much), but it's getting to the point where I don't even want to eat anymore because I keep getting sick, and I definitely don't want to ride my bike because I'm so tired and feel so sick.

Oh I also couldn't sleep well last night, which is probably from the glutening, but maybe from my potential sleep disorder as well.

It's even more frustrating because my dad has Celiac disease, but he's one of those who claims it's ok to have a little now and then (he cheats all the time, doesn't care if there's gluten after the first couple ingredients, even eats pizza sometimes! And he gets REALLY sick). And his doctor says its ok! So when I say I'm feeling sick, he acts like it's not that bad and like diarrhea is the only symptom I could possibly have. My symptoms aren't *that* bad, but it's bad enough that I don't want to feel like this all the time.

I've been trying so hard lately. I was diagnosed a year ago, and like for everyone, it's been a steep learning curve. At my house at school in Michigan, I got new pots, pans, toaster, etc...because my housemates contaminated everything. At home, even though my house is pretty much gluten-free (3 of the 4 in my house have it), my parents still haven't gotten new pots and pans or colanders. Also, my mom doesn't quite understand and she often feeds me stuff I can't eat without telling me what's in it (like corn flakes). I probably go out to eat too much.

I don't know if I should a really bland, completely safe diet for awhile or go back to the allergist to test for more allergies again (last year it came up with gluten, oats, pecans, lactose).

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CarlaB Enthusiast
CarlaB
Posted

I am casein intolerant and thought I kept getting glutened, but it was the casein. I've read that 50% of celiacs are casein intolerant. You can be tested by Enterolab for $99 if you want to know for sure. Once I removed the casein, I discovered I was not getting all the cc I thought I was getting. It's actually a lot easier to avoid gluten than I had thought!

It might not be your trouble, but that's what happened with me. I would definately suspect something else is also a problem. A food diary is not a bad idea.

lorka150 Collaborator
lorka150
Posted

i second the casein sensitivity. i am also casein sensitive, and when i cut it out, it helped so much.

however, i would also like to suggest that if you are sick of being sick, then perhaps not eating out or buying pre-made products would help. i kept getting contaminated left and right, and finally, once i stopped taking risks, felt better, and realized the "convenience" of pre-made items and eating out was just more of an inconvenience when i was dead to the world for two weeks.

GlutenWrangler Contributor
GlutenWrangler
Posted

I would say the casein test and a strict diet are your best bet. Convenience isn't worth being sick. Plus you can have really good meals while sticking to a strict diet.

wozzy Apprentice
wozzy
Posted
  • Author

Thanks guys.

I know I need to start cooking for myself more. It's been hard lately because I've been traveling around Ohio and Michigan a lot, and I haven't stayed in one place long enough to buy fresh food and actually use it all before I leave again.

I've been really careful for the past 24 hours, I haven't had any gluten or lactose and I'm feeling better.

charmaine broxton Newbie
charmaine broxton
Posted

Hi there

Does anyone else swell up like a balloon as soon as they eat anything with wheat in it or gluten. :(

wozzy Apprentice
wozzy
Posted
  • Author
Hi there

Does anyone else swell up like a balloon as soon as they eat anything with wheat in it or gluten. :(

You'd think I was pregnant if you didn't know better.

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Matilda Enthusiast
Matilda
Posted

..

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    • knitty kitty
      High DGP-A with normal IGA

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      @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
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      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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