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.

Recommended Posts

Nicole H. Explorer

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
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
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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,762
    • Most Online (within 30 mins)
      7,748

    dangunderson
    Newest Member
    dangunderson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • 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.