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

Hit A Bottom!


confusedks

Recommended Posts

confusedks Enthusiast

Some of you may have been following my posts. We are in the process of getting tests for Celiac. I did get enterolab reults which said I have the gene and everything on the celiac panel came back positive...not extreme but enough that it said to go gluten-free. I have already been gluten-free for about 5 weeks. I have had severe anemia in the not too far past, and had iron iv's. I don't know if I am getting glutened or i am anemic again. What are some places that I might be getting glutened without knowing. I have checked my shampoo, etc. and it's all gluten-free, except my deodorant. Does anyone have suggestions for the extreme EXHAUSTION?? and does this get better? I am so tired I dont know what to do. I can't make it through a day and I am really crabby (i'm usually not.) Also, my stomach has been getting so bloated, my mom joked that I look at least 5 months pregnant. my usually 27 inch stomach is getting up to 33 INCHES!!!!!!!!!!!!!! Thats HUGE!!!! I am a tiny person so i look really pregnant. Does anyone have any hope? Thanks! :(

Kassandra


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



Celiac.com Sponsor (A8-M):



gdobson Explorer

I don't know, Kassandra. There are so many ways things can sneak into your system...toaster, oven racks, I've heard dishwasher and dishtowel. Is your house gluten free? I find that's the safest way. How about eating out?

My son kept reacting to something we couldn't figure out and had to return to the old food diary method. It turned out he was having a reaction to certain red food dyes

loraleena Contributor

Have you checked all your toiletries? Did you get new toaster, kitchen utensils, pots and pans? Also a lot of people need to eliminate dairy as well for a while. I would recomend getting a good gluten free digestive enzyme to take with food to help you digest things. It can take a long time to see results and you may have withdrawal in the beginning, so hang in there.

aikiducky Apprentice

You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

confusedks Enthusiast
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.

confusedks Enthusiast
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.

confusedks Enthusiast
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Did you take the B12 in a pill? If your intestine isn't absorbing properly it might be that you didn't absorb the vitamin. Some people take shots, or let the vitamin dissolve under the tongue - it gets straight into the blood stream.

What more can I think about...you might also be deficient in other nutrients I guess, is it possible to get tested for vitamin levels more broadly?

I hope others will have more ideas. :)

Pauliina

Nancym Enthusiast

Pet food with wheat? Bird food containing wheat?

It could be something completely unrelated. Lots of autoimmune diseases have brain fog and fatigue as symptoms. Perhaps you should talk to your doctor?

jerseyangel Proficient

I was severly anemic at the time of my diagnosis. At that time,I had a hemiglobin of just 8. It took about 4 months before the extreme exhaustion started to go away. It took 6 months for my anemia to subside (hemiglobin of 14.6)

Quite possibly, you need to give it a little more time. At 5 weeks, I was still tired, lethargic and bloated.

It sounds like you are successfully gluten-free, and I was going to mention dairy free for now, but saw that you already are.

Have you noticed any positive changes at all?

confusedks Enthusiast

Thank you for your responses. We are in the middle of getting new insurance so I will hopefully be able to get to my hematologist about the anemia. I have been anemic for over a year and it is impossible to get rid of!! I think that is part of what is causing the exhaustion, but I can't tolerate the oral iron so we resorted to IV's, but they cost a fortune. My ferritin went from literally nothing to over normal, back down to really low, in about 4 weeks. My state of the art hematologist can't figure this out. I don't know what to do becuase I feel like no matter what I do, I'm anemic. Another problem is that I haven't had my period in 5 months and my OB/GYN wants to induce it, but when I get my period (since it's REALLY heavy) my hemaglobin goes down about 2-4 points!!! So, its a catch, I get screwed either way. UGH!! Im really annoyed!

btw, I dont have pets, so petfood is a non-issue. :)

Kassandra

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,055
    • Most Online (within 30 mins)
      7,748

    Amaly
    Newest Member
    Amaly
    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

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.