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After So Long...

josh052980

By josh052980
in Coping with Celiac Disease

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josh052980 Enthusiast
josh052980
Posted

I've been gluten free now for 4-months, with only minor hiccups. Friday evening I got some gluten in me, though I have no idea where from. I'm guessing cross-contamination. I felt bad for about 4 hours yesterday, then rebounded, and like a fool ate some spicy food last night at dinner (previously spice hadn't bothered me, so I didn't think I'd react adversely). Boy was I wrong. Overnight my guts felt like they were on fire, I've been on and off nauseous all day today and I just had my first run-in with the Big D since going gluten free. I feel like all my progress over the past months has been for naught, just off of one meal.

My guess is that I've got an issue with nightshades, or at least I do in the aftermath of being glutened. It's so disheartening though... I was doing so well for so long, and now I feel like I did before I went gluten free... I'm not really looking for advice here, just kind of venting. For as hard as my family tries, I don't think they really understand what I go through when this kind of thing happens.

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cyberprof Enthusiast
cyberprof
Posted

I've been gluten free now for 4-months, with only minor hiccups. Friday evening I got some gluten in me, though I have no idea where from. I'm guessing cross-contamination. I felt bad for about 4 hours yesterday, then rebounded, and like a fool ate some spicy food last night at dinner (previously spice hadn't bothered me, so I didn't think I'd react adversely). Boy was I wrong. Overnight my guts felt like they were on fire, I've been on and off nauseous all day today and I just had my first run-in with the Big D since going gluten free. I feel like all my progress over the past months has been for naught, just off of one meal.

My guess is that I've got an issue with nightshades, or at least I do in the aftermath of being glutened. It's so disheartening though... I was doing so well for so long, and now I feel like I did before I went gluten free... I'm not really looking for advice here, just kind of venting. For as hard as my family tries, I don't think they really understand what I go through when this kind of thing happens.

Don't worry. One episode like this isn't going to set back your progress, although I know it is uncomfortable. After a few days, you should be back on track. And perhaps it's useful for your family to see you going through that so that they understand better.

Usually, after I've been glutened through an accident or cross-contamination, I eat bland things, cause that's what my body craves. White rice, rice noodles, mashed or baked potatoes, chicken/rice soup - that sort of thing. Lots of veggies and spices and meat are on my no-no list after gluten.

Hope you feel better soon.

rosetapper23 Explorer
rosetapper23
Posted

Something that I've learned through experience is that being glutened either by spicy food or food with peppers (sometimes the peppers themselves are canned ones containing gluten) can be calamitous. This has happened three times during the past seven years, and each time I became extremely ill. In my case, a lot of damage was done to my intestinal lining each time....but this may not occur with you. From your photo, I can see that you're much younger than I am; therefore, I have many more years of damage to contend with.

When it comes to eating spicy food or food containing peppers, if there's ANY chance of cross-contamination or not knowing the source of the peppers, simply walk away from the meal. It's better than living a hellish existence for 2-3 days with possible long-term complications. Be especially careful of paprika, which was responsible twice for my suffering (some brands are fine, but others aren't). At potlucks, people bring what appears to be innocuous potato salad, but they oftentimes mix in paprika....and then I'm in big trouble. So....walk away.

ravenwoodglass Mentor
ravenwoodglass
Posted

You said you felt bad for about 4 hrs then a bit better. I could be wrong but I think you would have had D even without the spicey meal. The spicey heat of the meal may have made things worse though.

I hope you feel better soon. If your still having stomach pain some pepto bismal liquid may help a bit.

josh052980 Enthusiast
josh052980
Posted
  • Author

Something that I've learned through experience is that being glutened either by spicy food or food with peppers (sometimes the peppers themselves are canned ones containing gluten) can be calamitous. This has happened three times during the past seven years, and each time I became extremely ill. In my case, a lot of damage was done to my intestinal lining each time....but this may not occur with you. From your photo, I can see that you're much younger than I am; therefore, I have many more years of damage to contend with.

When it comes to eating spicy food or food containing peppers, if there's ANY chance of cross-contamination or not knowing the source of the peppers, simply walk away from the meal. It's better than living a hellish existence for 2-3 days with possible long-term complications. Be especially careful of paprika, which was responsible twice for my suffering (some brands are fine, but others aren't). At potlucks, people bring what appears to be innocuous potato salad, but they oftentimes mix in paprika....and then I'm in big trouble. So....walk away.

I didn't get glutened from the spicy food, I got glutened, felt sick, got better enough to function and then ate spicy food.

rosetapper23 Explorer
rosetapper23
Posted

Yes, I realize that....but when you ADD spicy food on top of being glutened, the response can be much, much worse. I'm sorry if I didn't make that clear. The bad response can be from spicy food with gluten in it or eating gluten and then spicy food that doesn't have gluten in it. It seems to be the combination that makes the outcome so much worse.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

After I get cc'd, I have to eat bland easy food for the next few meals at least because things are SO over sensitive.

I hope you feel better soon!

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PainfulSpaghetti Newbie
PainfulSpaghetti
Posted

I am so sorry. It is difficult on the best days. It's very hard to find foods that aren't laden with sneaky additives, or coated in wheat flour as even nuts are that they give you to sprinkle on your salads. Sneaky, sneaky gluten!

josh052980 Enthusiast
josh052980
Posted
  • Author

This may be totally unrelated to how I felt, but maybe some of you folks have had the same experience. Last week, I was off my multi-vitamins (I kept forgetting to run out and by more after I ran out), so when I got glutened, I was without vitamin supplements for 5 days straight, then I ate the spicy food the next day (Saturday), still with no vitamin supplement. Yesterday, I was still feeling pretty crappy, but well enough to basically function, so I went out and bought my vitamins, and took one. Within 2 hours I was feeling DRAMATICALLY better.

Do vitamins have anything to do with this, that anyone knows of?

cyberprof Enthusiast
cyberprof
Posted

This may be totally unrelated to how I felt, but maybe some of you folks have had the same experience. Last week, I was off my multi-vitamins (I kept forgetting to run out and by more after I ran out), so when I got glutened, I was without vitamin supplements for 5 days straight, then I ate the spicy food the next day (Saturday), still with no vitamin supplement. Yesterday, I was still feeling pretty crappy, but well enough to basically function, so I went out and bought my vitamins, and took one. Within 2 hours I was feeling DRAMATICALLY better.

Do vitamins have anything to do with this, that anyone knows of?

It may just be a coincidence. However, if you're sick and everything is going right through you, you may be low on potassium and magnesium, just to name two. Taking the vitamins might have an immediate effect in that situation. I know that I feel better when I take magnesium supplements regularly, and the B vit sublingual is imperative if I want to have energy.

Glad you're feeling better.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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