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

Frustrated

Nicole H.

By Nicole H.
in Coping with Celiac Disease

Recommended Posts

Nicole H. Explorer
Nicole H.
Posted

Does anyone ever experience getting glutened and not knowing where it came from?!? I wish we had a self blood tester so we could see if our numbers are up after we feel glutened so that we can narrow down what the culprit was! Anyway, I have had a headache for days and I dont know if I was glutened or Im just sick! Thats another thing I get frustrated about. Everytime I feel off I blame it on gluten but Im not even sure if thats what it is. If I had an allergy or intolerance to something else, like corn, soy, dairy, casein...whatever it may be...what it do damage like celiac, or would it just be something that happens and its my decision whether I want to deal with the side affects? Thanks for the help.

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

Celiac.com Sponsor (A8-M):


Gfresh404 Enthusiast
Gfresh404
Posted
Does anyone ever experience getting glutened and not knowing where it came from?!? I wish we had a self blood tester so we could see if our numbers are up after we feel glutened so that we can narrow down what the culprit was! Anyway, I have had a headache for days and I dont know if I was glutened or Im just sick! Thats another thing I get frustrated about. Everytime I feel off I blame it on gluten but Im not even sure if thats what it is. If I had an allergy or intolerance to something else, like corn, soy, dairy, casein...whatever it may be...what it do damage like celiac, or would it just be something that happens and its my decision whether I want to deal with the side affects? Thanks for the help.

I used to think I was getting glutened a lot of the time (when I really wasn't) when I first started out. Turned out I was just bloated because I wasn't properly digesting/absorbing fats. I have found that if you're pretty sure it's not gluten, it's always something else.

How long have you been gluten free? If it hasn't been that long then it's probably safe to say the gluten is messing you up. It really does effect virtually every other organ. I would definitely cut out dairy for a while, especially any lactose and casein. These can cause symptoms very similar to that of ingesting gluten. Casein has a very similar protein structure as to that of gluten and temporary lactose intolerance with Celiac is very common.

If you did have another food allergy, it is very unlikely that it too would damage your small intestine like Celiac does. If anything it would probably cause inflammation and/or irritation somewhere else in the body.

You could try keeping a food diary and try to notice when you feel like crap. I did that for a while and found out I have to take it easy on fats and no whole grains or cruciferous vegetables.

Nicole H. Explorer
Nicole H.
Posted
  • Author
I used to think I was getting glutened a lot of the time (when I really wasn't) when I first started out. Turned out I was just bloated because I wasn't properly digesting/absorbing fats. I have found that if you're pretty sure it's not gluten, it's always something else.

How long have you been gluten free? If it hasn't been that long then it's probably safe to say the gluten is messing you up. It really does effect virtually every other organ. I would definitely cut out dairy for a while, especially any lactose and casein. These can cause symptoms very similar to that of ingesting gluten. Casein has a very similar protein structure as to that of gluten and temporary lactose intolerance with Celiac is very common.

If you did have another food allergy, it is very unlikely that it too would damage your small intestine like Celiac does. If anything it would probably cause inflammation and/or irritation somewhere else in the body.

You could try keeping a food diary and try to notice when you feel like crap. I did that for a while and found out I have to take it easy on fats and no whole grains or cruciferous vegetables.

Thanks, Ive been gluten free since February...So Im not sure if thats long or not. I know my numbers for my ttg are really low (4)...so my doctor said Im def. staying away from gluten. As for the dairy, it doesnt seem to bother me(at least I dont think!) haha maybe I dont want it to. I love milk, yogurt, cheese! so who knows. I did do the food diary for a while and then stopped, maybe ill try it again!

GFgirlGF Newbie
GFgirlGF
Posted
Thanks, Ive been gluten free since February...So Im not sure if thats long or not. I know my numbers for my ttg are really low (4)...so my doctor said Im def. staying away from gluten. As for the dairy, it doesnt seem to bother me(at least I dont think!) haha maybe I dont want it to. I love milk, yogurt, cheese! so who knows. I did do the food diary for a while and then stopped, maybe ill try it again!

Ive been gluten-free since feb as well, and i decided to try no dairy even though i really really did not want to! but its been 6 months and im starting to add it slowly back into my diet and honestly it helped a lot! i did not think that i t was the problem in the beginning but it really was! i started getting lactose free ice cream and almond milk and it helped i would still eat a piece of cheese here and there and i could tell! but really after a couple months you can slowly work it back in once the damage in your intestines start to heal up! hope this helps!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Food diary is the way to go. It will show patterns that you might not think of when looking back over a few days or weeks. Just make sure to record everything including things put on your lips (chap stick), toothpaste change and gum or small breath mints.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      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.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      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...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      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...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      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 m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748
    Clare Durham
    Newest Member
    Clare Durham
    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

    • 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.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      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
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By AlwaysLearning · Posted

      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.   
×
×
  • 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.