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123glutenfree Newbie
123glutenfree
Posted

So... After realising that I didn't give all my friends food poisoning....

... and realizing that I was the only person violently ill after my big pasta dinner I went for some tests. I am still waiting on the results but in the meantime I am doing some reading.

I have had episodes of D very frequently, but as they were often related to drinking (beer), I didn' t think it was too serious, just part of the hangover... but it has been getting worse... just thought I was wearing out and getting old! (At 26!)

I have the rash too... have had it for years and the doctors have just said it's dermatitis.

I also tried the Atkins diet in the past and my stomach felt great - no bloating for once in my life!

I had a dream last night the Eggo waffles in my freezer were made with rice flour... they're not. :(

I have been trying to eat gluten free as I wait for the test results.

I only get violently ill if I eat a big plate of pasta and nothing else, or drink copious amounts of beer... I can avoid bread and pasta but I am not really willing (or able to afford) making a huge lifestyle change.

So my question is... can any of you eat soy sauce and small amounts of other things that have a small amount of gluten without getting sick?

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Guhlia Rising Star
Guhlia
Posted

Occasionally I can eat small amounts of gluten without getting sick, but I don't recommend doing it. By intentionally glutening yourself (if you have Celiac) you can eventually cause irreparable damage to your intestines which can lead to many, many bad things such as osteoperosis, mental illness, etc... Even cancer has been linked to Celiac when a strict gluten free diet isn't followed.

Luckily for us, there are gluten free soy sauces, actually La Choy makes one that's gluten free. It's not worth the damage you're doing to your body by cheating. Just because you don't get sick doesn't mean you aren't causing damage. Oh, and Van's makes a gluten free waffle that's pretty decent.

Lisa Mentor
Lisa
Posted

Instead of small amount of soy sauce, try the gluten free ones. LaChoy is gluten free.

I have found that the longer you are gluten free, the most sensitive I am to gluten.

If you are positive for Celiac, it most definatly will be a life style change. It is a steep learning curve, but it is doable

How were you tested?

CMCM Rising Star
CMCM
Posted

I am also one who did and felt WONDERFUl on the Atkins diet. I was totally puzzled at the time, but now I understand why!!

About small amounts of gluten: The fact is, the body does its best to create a "tolerance" for gluten. Sometimes it is successful, other times not. Reactions can also be cumulative in nature: You have a tolerance, you eat a bit here and there, it builds up, and it's kind of like a glass finally overflowing when you pour too much into it...finally your body rebels as it gets pushed too far, and you get sick.

I've never liked beer (perhaps because I got so horribly bloated from it), but pasta is one thing that has always pushed me over the edge, not long after eating it!

This is part of the difficulty....I could never fully identify what would make me sick. Sometimes I'd eat gluten and feel nothing at all from it. Other times I'd get very sick. No rhyme or reason sometimes. For me, though, many years ago I had identified soy sauce as a fairly certain culprit. I didn't know it was the gluten...I thought it was the soy originally. If you can get tamari sauce (La Choy's gluten free soy sauce), it tastes the same as soy sauce and won't bother you (unless you have problems with soy!!).

So... After realising that I didn't give all my friends food poisoning....

... and realizing that I was the only person violently ill after my big pasta dinner I went for some tests. I am still waiting on the results but in the meantime I am doing some reading.

I have had episodes of D very frequently, but as they were often related to drinking (beer), I didn' t think it was too serious, just part of the hangover... but it has been getting worse... just thought I was wearing out and getting old! (At 26!)

I have the rash too... have had it for years and the doctors have just said it's dermatitis.

I also tried the Atkins diet in the past and my stomach felt great - no bloating for once in my life!

I had a dream last night the Eggo waffles in my freezer were made with rice flour... they're not. :(

I have been trying to eat gluten free as I wait for the test results.

I only get violently ill if I eat a big plate of pasta and nothing else, or drink copious amounts of beer... I can avoid bread and pasta but I am not really willing (or able to afford) making a huge lifestyle change.

So my question is... can any of you eat soy sauce and small amounts of other things that have a small amount of gluten without getting sick?

123glutenfree Newbie
123glutenfree
Posted
  • Author

Thank you all for replying so quickly!

The doctor ordered a bunch of blood tests - ferritin/iron, various B vitamins, anti-gliadin/trans-glutaminase. The results should be in on Monday.

I have only been off gluten (except some soy sauce) for 5 days and my skin is clearing up - FAST! :D

For anyone else that has the skin problem, I started using L'Oreal's microdermabrasion kit awhile ago. It comes with a special after-moisturizer that also cleared up those nasty little patches around my mouth... but they just kept coming back...

I knew my skin got worse when I drank...

I knew it got better when I ate healthy - less carbs, more veggies

I knew I got "gut-rot" from drinking...

I have had this abnormally bloated belly since my teens, even though I was very thin back then....

I thought my always achy belly was from stress...

There were so many clues...

At the end of the day I am happy to be diagnosed if it means no more sore, bloated belly, gut-rot, D's and skinrash...

Here's to better days!

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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
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    • 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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