Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can Someone Explain Why I Feel Sick More Often?


Schatz

Recommended Posts

Schatz Apprentice

I was diagnosed a month ago. Before that I was getting sick every month or so and then it increased to every other week or so. Once I was diagnosed and went gluten free, it seemed that the two times I had gluten I instantly became very sick. Before I was gluten free I was obviously eating gluten all the time, yet I wasn't sick all the time. Now that I'm gluten free if I get the tiniest amount of gluten I'm up all night super sick and it lasts for days.

Why am I more sick now?

I had blood tests done and I've been told I have no deficiencies. I do however, show that I have Hashimoto's.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

You might be getting sick from other food intolerances (soy, dairy, alternative grains, processed gluten-free foods), or you could be getting sick from cross-contamination. I can't really do that topic justice, but if you use the search engine on the forum you will see. It involves cutting boards and wooden spoons, anything with crevices, like scratched non-stick pans and stuff.

Ok. You have to toss out stuff that is scratched and porous and start over. That's a wee start on the subject.

Good luck to you, and welcome to the forum. Hope you feel better soon!

Schatz Apprentice

You might be getting sick from other food intolerances (soy, dairy, alternative grains, processed gluten-free foods), or you could be getting sick from cross-contamination. I can't really do that topic justice, but if you use the search engine on the forum you will see. It involves cutting boards and wooden spoons, anything with crevices, like scratched non-stick pans and stuff.

Ok. You have to toss out stuff that is scratched and porous and start over. That's a wee start on the subject.

Good luck to you, and welcome to the forum. Hope you feel better soon!

I already have gotten rid of everything in my house. I replaced everything in my kitchen except my stainless pots and pans and dishes. My kitchen is completely gluten free. We do not have any gluten foods in the house at all.

I have gotten rid of all my body products such as hair products, lotions, and makeup that had gluten.

I have been tested twice for other food intolerances and both times I came up negative for everything tested.

I've been tested for vitamin/mineral levels and they are all normal.

My thyroid levels are in the normal range although I do have an elevated amount of antibodies that are attacking my thyroid. So far, my thyroid has not been damaged enough to cause it to malfunction enough to be seen through testing.

I just want to know why I get so sick from even tiny amounts of gluten at this point when before I was gluten free I was only getting sick every couple weeks.

lovegrov Collaborator

Some people become even more hyper sensitive to gluten after going off it.

richard

pricklypear1971 Community Regular

Just because your thyroid test results are in normal range, doesn't mean you aren't having symptoms.

There are many Celiac and thyroid symptoms that overlap.

Additionally, some people develop more or hyper sensitivity after going gluten-free.

Jestgar Rising Star

I have been tested twice for other food intolerances and both times I came up negative for everything tested.

The only reliable way to test for food intolerances is via elimination diet.

Leper Messiah Apprentice

I have a similar clinical presentation as you Schatz. As soon as I've gone off gluten, it's much more difficult to stay off it seems - I think richard's comment on hypersensitivity is the most logical and robust argument, albeit just another smack in the teeth of course.

I seem to get glutened by the minutest bit of cross contamination and for me this means 2 weeks of feeling exhausted and a further 1-2 weeks recovery every time. If someone made a safe gluten free food pill I'd take it for brekkie, dinner and tea; I have completely and utterly lost my romance with food.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Schatz Apprentice

I'm sure I do feel the effects of my thyroid. I alternate between symptoms of hyper and hypo. Not fun.

It does seem like I have become super sensitive to gluten since going gluten-free. Just doesn't seem fair does it?

I, too, have lost all love of food. I told my dh I feel like it's just not worth eating. I used to love food. Especially pastry and bread. Go figure. Now, unless it's a pure piece of fruit or veggie, I cringe when I see it. I have no desire to eat.

I'm still feeling the bad effects from eating a "gluten free" Amy's frozen dinner. I so very very sick. I ate it Sat night, and I'm still not right. My head, for one thing, has just been one long constant headache since then.

Food is no fun anymore.

Schatz Apprentice

The only reliable way to test for food intolerances is via elimination diet.

True enough. See? Food is nothing but problems.

Marilyn R Community Regular

My parathyroid was attacked vs. thyroid. I used to be supersensitive but I think finally I've crossed the threshold.

What helped me, (not to suggest that it will necessarily help your medical condition) was to read as much as I could aat the library about food allergies and sensitivities.

The only way I could function at first was to start eating only whole foods prepared at home by myself. (And I'd made the house gluten-free, bought the new cooking stuff.) I had to start rotating food families in my diet. And I had to try stuff I'd never eaten before to attain the rotation diet. I've never had a problem from fish or seafood, nor any vegetable except corn. The alternate grains smacked me, so did soy and dairy. Then the alternate milks with masked soy ingredients smacked me. Corn smacked me bad. Nitrates weren't kind (like the stuff in wine, dried fruit, bacon, ham, sausage).

Allergy testing won't show food intolerances, even my Allergist ackowledges that..."Now that's a whole different story".

Good luck, it's a tough journey but you can figure it out or outlast it!

angel9165 Newbie

I have a similar clinical presentation as you Schatz. As soon as I've gone off gluten, it's much more difficult to stay off it seems - I think richard's comment on hypersensitivity is the most logical and robust argument, albeit just another smack in the teeth of course.

I seem to get glutened by the minutest bit of cross contamination and for me this means 2 weeks of feeling exhausted and a further 1-2 weeks recovery every time. If someone made a safe gluten free food pill I'd take it for brekkie, dinner and tea; I have completely and utterly lost my romance with food.

I so miss that romance. I'd take a pill in a heartbeat!!

GlutenFreeManna Rising Star

I'm sure I do feel the effects of my thyroid. I alternate between symptoms of hyper and hypo. Not fun.

It does seem like I have become super sensitive to gluten since going gluten-free. Just doesn't seem fair does it?

I, too, have lost all love of food. I told my dh I feel like it's just not worth eating. I used to love food. Especially pastry and bread. Go figure. Now, unless it's a pure piece of fruit or veggie, I cringe when I see it. I have no desire to eat.

I'm still feeling the bad effects from eating a "gluten free" Amy's frozen dinner. I so very very sick. I ate it Sat night, and I'm still not right. My head, for one thing, has just been one long constant headache since then.

Food is no fun anymore.

Sorry to tell you but Amy's has made a lot of people sick. They are processed ont he same line with wheat products. Stick with mostly whole foods and you'll feel better faster.

T.H. Community Regular

So sorry you get so sick from gluten cc now. :-( It's really a frustrating experience, and I wish the medical community knew more about why it happens. At this point, it seems that all the information anyone has is that it DOES happen to a number of us. Even those who have regular sensitivity often have worse reactions to gluten within a few months of going gluten free, sigh.

One thing to know about the whole gluten free thing: gluten-free foods all have a maximum allowed concentration of gluten (usually 20 ppm). So there is gluten in them. <_< The majority of celiacs can tolerate that level, but some need to be careful of their processed products and it sounds like you might be in that category. A few of us hang out in the super-sensitive forum here, who are having this issue.

It's kind of like low cal diets: if we eat enough low cal food, we still won't lose weight. If we eat enough gluten free foods (low gluten, really), then some of us can hit our gluten threshold and get sick. And the gluten threshold varies by individual.

As an example, my father and brother eat Amy's and never, ever get sick off of it. My daughter gets sick from them maybe 1 in 3 times. I get sick every time and I'm pretty much on a fruit/veggie/specially chosen meats diet, with one brand of olive oil and salt to go with it.

Just wanted to say I really, really sympathize with feeling like everything is making you sick. I was the same way; it was awful. I remember weeks of looking at food and deciding whether the hunger pains or the potential reaction were worse. Often, hunger was easier to manage. Horrible feeling. Really - virtual freaking hug from over here, because heaven knows we need as many as we can get when we feel this way!

But, a few recipes that might get you a few calories or variety and not make you sick (hopefully)?

Orange baked sweet potato - juice about 3-5 oranges. Boil down the juice until it's about 1/2 the original volume. Bake a pink-fleshed sweet potato, cool, scoop out the flesh, and mix it with the juice. Spread it in a pie pan and bake it again until warm. Or just mix it when the sweet potato is still warm and eat it that way. The orange makes the sweet potato really tangy and nice...well, for a sweet potato, LOL.

Salad dressing - any citrus that you juice (orange, lemon, white grapefruit) and boil down to 1/2-1/3 volume can taste nice over something like a spinach salad. Makes it easier to stomach, sometimes, just having that little bit of flavor. Any fruit's juice, boiled down, can be useful as a sweetener ingredient. Apple and grapes do well. Dates, too, if you mix with a little water and blend in a blender - a sort of date syrup, as it were.

Homemade tomato sauce - Chop up a bunch of tomatoes and put them in a pot, add salt. Put on high simmer/low boil, stirring periodically, until the tomatoes have softened and the skins are starting to separate. Put into a blender, blend it up, and put it back into the pot. Boil on low until the right consistency and taste - it'll get sweeter as you cook it longer. This is where you could add onions, meat, veggies, more salt, herbs, and so on. (After all this started, I began an herb garden. It's made a huge difference, both in taste and finances). I have also used some of this, thinned it out, and eaten it like soup. Avocados added to that are tasty.

Veggie pasta alternatives - spaghetti squash - cut in half, scoop out seeds (which you can then salt, roast, and eat), and nuke it cut-side down in a small dish in the microwave, with a little water underneath. Zucchini - peel off the outside, then peel the rest of the zucchini into strips until it's all gone. Let the strips sit, uncovered, in the fridge for a few hours. They'll get limp. Then you add them to the tomato sauce and let them cook for a few minutes, and they're kind of like noodles. I've heard the same can be done with carrots, but haven't tried that yet.

Popcorn - a lot of people do well with plain popcorn. If it's a problem for you, that may be a sign that you're super, duper sensitive...or that you react to corn. Corn sensitivity sometimes doesn't show up well with testing, but lots of folks have issues with it.

I know it's not much, but when I was in the situation you are, thinking of anything seemed more than I could do. So, maybe a few ideas to get you past the worst of the hump. :-)

Schatz Apprentice

Shauna, thank you so much.

mushroom Proficient

The transition to gluten free eating is not an easy one for some of us - I am sorry you are having problems. One explanation given is that while you are consuming gluten on a regular basis your body is overwhelmed by the onslaught and puts up a feeble fight, as much as it is able. Once the constant attacks stop it is better able to mount a defense against the occasional invaders, and does so vigorously, thereby making you feel much sicker than you did before. It's your body's way of saying, "Enough already! I thought we were done with that stuff!" :D In this way it does serve as a useful reminder that you have been lax with gluten, and try to look on it as a good thing - your body is policing for you what you are doing and telling you when you make mistakes.

This is not to say that there might not be other foods that are giving you trouble too, unfortunately. Some of these may be only temporary due to your leaky gut and will go away when you heal. So if you are sure you are not getting any gluten be on the alert for something else that might be zapping you. There, don't you feel better now? :rolleyes:

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,116
    • Most Online (within 30 mins)
      7,748

    Mary Pack
    Newest Member
    Mary Pack
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.