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
confusedks
Posted

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
gdobson
Posted

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
loraleena
Posted

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
aikiducky
Posted

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
confusedks
Posted
  • Author
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
confusedks
Posted
  • Author
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
confusedks
Posted
  • Author
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
aikiducky
Posted

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
Nancym
Posted

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
jerseyangel
Posted

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
confusedks
Posted
  • Author

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.

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. Russ H
      - Russ H replied to Ginger38's topic in Related Issues & Disorders
      27

      Shingles - Could It Be Related to Gluten/ Celiac

      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    2. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

      @Heatherisle, You have good reason to worry. Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency. Thiamine deficiency is frequently found in B12 deficiency. Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease. Thiamine can run out in as little as three days...
    3. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

      Hi There’s been no mention of her adrenal glands as far as I know
    4. Theresa2407
      - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

      Have they checked her Adrenal glands.
    5. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,708
    • Most Online (within 30 mins)
      7,748
    Jackie A
    Newest Member
    Jackie A
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Shingles - Could It Be Related to Gluten/ Celiac

      By Russ H · Posted

      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Pain in the right side of abdomen

      By Theresa2407 · Posted

      Have they checked her Adrenal glands.    
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
×
×
  • 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.