Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

As You Lose Other Foods In Your Diet?


camprunner

Recommended Posts

camprunner Apprentice

The first time I went off gluten (doing the Maker's Diet), I was physically ill for a couple of months. I could barely get out of bed and did so only for a few hours a week. This is my second time off of gluten and I'm off permanently this time. I have been away from gluten for 2 months now and realize that I'm having severe burning in my digestive organs. I have cut out nightshades and the burning is gone :) but now I am extremely fatigued again. Is this normal? Is my body just detoxing all over again?


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



Celiac.com Sponsor (A8-M):



glutefree Rookie

The first time I went off gluten (doing the Maker's Diet), I was physically ill for a couple of months. I could barely get out of bed and did so only for a few hours a week. This is my second time off of gluten and I'm off permanently this time. I have been away from gluten for 2 months now and realize that I'm having severe burning in my digestive organs. I have cut out nightshades and the burning is gone :) but now I am extremely fatigued again. Is this normal? Is my body just detoxing all over again?

You sound like me :) Anyway, I too have severe burning that seems to somewhat be aleviated by nightshades. I would like to ask - did you also eliminate potatoes? I have eliminated all nightshades but potatoes as I thought maybe it was the acid in nightshades and not the nightshades themselves. I am just curious on that.

Back to your question, I can't say if what you are feeling is normal, but I do believe that it is extremely hard for celiacs to get proper nutrients to keep your body going. You may have cut out the nightshades, but you may have been getting nutrients from those foods that you needed. When I first went gluten free, I felt like I was starving all of the time and eventually it went away as I was able to adjust.

camprunner Apprentice

You sound like me :) Anyway, I too have severe burning that seems to somewhat be aleviated by nightshades. I would like to ask - did you also eliminate potatoes? I have eliminated all nightshades but potatoes as I thought maybe it was the acid in nightshades and not the nightshades themselves. I am just curious on that.

Back to your question, I can't say if what you are feeling is normal, but I do believe that it is extremely hard for celiacs to get proper nutrients to keep your body going. You may have cut out the nightshades, but you may have been getting nutrients from those foods that you needed. When I first went gluten free, I felt like I was starving all of the time and eventually it went away as I was able to adjust.

Yes. Potatoes are completely gone too :(. We have been eating a lot of "new" foods lately and I am feeling better after sleeping ALL weekend. I am still on dairy and I have a feeling it will be gone next and I guess I just want to know what to expect.

glutefree Rookie

Yes. Potatoes are completely gone too :(. We have been eating a lot of "new" foods lately and I am feeling better after sleeping ALL weekend. I am still on dairy and I have a feeling it will be gone next and I guess I just want to know what to expect.

Sounds like we are somewhat in the same boat. So far I have cut dairy, gluten, and am going to cut the nightshades (I was all except potato, but now I think I'll do that too.)

I didn't have much of a problem doing the dairy. I thought I would because I loove cheese, but I was feeling bad enough that I don't have much of an appetite for dairy items anyway. I take a calcium supplement to make up for the dairy and the other important thing is to make up for the lost calories from the dairy and potato products. The fatigue should subside once you get a balanced diet going.

Going potato free is a bummer - how do you find gluten free baked goods without potato starch? Have you found a substitute for potatoes in items such as baked items or soups?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748

    Ozz lock
    Newest Member
    Ozz lock
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      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.
×
×
  • Create New...