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Help - How Long Until You Get Better And What Sets You Off?

Montana Julie

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Montana Julie Newbie
Montana Julie
Posted

Hi, All-

I was recently-diagnosed with celiacs, and I've been trying to learn everything I can.

I've been on my new diet about 1.5 months, and I've overall been lots better. However, I sometimes get recurrences of my old symptoms, and I really don't know why. I did make some mistakes early on (oats) but I'd like to think I got those ironed out.

I ate some Korean food with suspicious soy sauce (I asked, but I don't think they checked the label) on Sunday, and was "off" on Monday and I'm really hurting today.

Could that be the cause? Seems like it's been too long... How long do you guys go between eating something bad and feeling bad?

Also - for you "veterans" - how long does it take for the new diet to really work and for you to stabilize? Do you get recurrences? Perhaps stress-induced?

Anyway - I'll appreciate your help!!!

Thanks!

Montana Julie

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gf4life Enthusiast
gf4life
Posted

Most soy sauces are fermented with wheat. If you can ask to check the lable next time or bring your own wheat free soy sauce and have them make your food with that it might be safer.

For me it usually start with gas, bloating and fatigue within a few hours and then by about 8-12 hours the pain starts. This lasts for a few days. The diarrhea hits usually by day 2-3, and last a few days. The fatigue lasts usually for about 2 weeks and that is one of the worst parts about it. I also get DH (the Celiac rash) and the sores take usually a month or two to go completely away. I currently have some on my neck, back and thighs from a glutening 2 weeks ago. Needless to say I try really hard not to get glutened!

That was the first time in months that I have been glutened and I am still not sure how it happened. It was either at the VBS my kids were at that week or when we ate out. Most likely the VBS, since my daughter was already feeling bad the day before we ate out and the pain hit me wihile we were eating out, which didn't fit my normal pattern. I was assisting the kitchen at the church with my kids gluten-free snacks, but the CC potential was extreme! Expecially when they fed my daughter's gluten-free snack to someone else and had to make her a new one when I wasn't there...They swear they didn't give her any pretzels in her "trail mix", but I feel there must have been enough crumbs around to contaminate it. I could have picked up enough gluten just from being in the kitchen, but who really knows. In fact i didn't know for sure it was gluten until I got the rash. I ONLY get that from gluten. The other symptoms could have been something else.

Sorry I'm rambling...

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    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

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    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

      By Scott Adams · Posted

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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