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

Okay Sooo Do I Ahve celiac disease Or Am I Sick In Head?


VydorScope

Recommended Posts

VydorScope Proficient

Been thinking about this as I layon the couch in pain and lets for a min (or 5 or how ever long this takes...) ingore the IgA score of 0...and the non-postive bisopy...

Few years back I was fat. Did not look fat, not realy... but had gained about 4-5 inches in the wiast, and was pushing on 200 pounds. I have a large frame so very few ppl would have called me fat... I alos had high BP, low engery, etc. So I decided to do somthing about it. I did a LOW CARB (ie low to zero gluten by its very nature) diet, and lost 40-50 pounds. Regained my engery, and lowered my BP. I attrubited all that to the wight loss. Well I want on a "somewhat" low carb "mantiance diet" to keep my wieght under control (ie added littel gluten back in my diet), and over time my health degraded again. Found out my son had celiac disease so we all went gluten-free (mainly for convience), and my health started to improve (but did not realy notice it at the time, was sooooo gradual), then one night was out on a date with my wife and we got some pizza (its rare treat around here!) and got sick right after it.

Then after that decided to try the gluten challenge for re-testing me. My engery fell off, stools got loose, got the pains back, etc! Took the test and it came back not-celiac disease, oh wait we ingoring that... umm okay well then when gluten-free for a bit like 2 weeks, and then one sunday ate some gluten (little cakes and things at a church event), and that night had hamburger with a bun. 12-15 hours AFTER eating the cake I get all the old junk back, pain, etc etc.

SoooOOooOooOoOoOO if we ingore the nice objective tests, does that sound like celiac disease or am I sick in the head again? :huh:

I am very sick of being sick! :(


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



Celiac.com Sponsor (A8-M):



Guest nini

Vincent... I think you already know the answer to this my dear... Celiac is Genetic... Does your wife have it??? If not, then the most likely source is you. Based on your positive dietary response and subsequent negative response to being glutened, I would say that definitively shows that at the very least you are Gluten Intolerant and that is the main source of a lot of your problems. Even the experts are aware that the testing is still in developing stages, they don't have all the testing down. And no two experts ever seem to even agree on the standard for diagnosis. Listen to what your body is telling you.

I went through what you are going through. A friend told me she thought I had Celiac 6 or 7 years ago... I didn't listen. sortof. I kindof tried the diet, it kindof worked, I went back off of it... 2 miscarriages, life threatening pregnancy (very high blood pressure) and subsequent deterioration of health before ALMOST DYING before the Dr.s figured out what was wrong with me. Celiac. The very thing my friend had told me about 4 or 5 years earlier... Go Figure.

ianm Apprentice

The dietary response you have experienced is all I would need to know. I have never been tested because it is just so obvious that gluten is the problem. Since you son has it and celiac disease is genetic then that is another sign. You know what needs to be done and your body, not a medical test is telling you all that you really need to know.

tarnalberry Community Regular

Listen to your body. Celiac or not, you need to avoid the stuff! :-)

VydorScope Proficient

Reviewing this thread this am a few thoughts struck me...

1) My son did not show postive on the IgA scale either, making it likly we are both IgA deficent, and if the <insert not nice adjactives here> insurace company would allow the other tests I would test postive.

2) I have celiac disease. If I can get the ELISA test covered I will check for OTHER things, but no way am I going back on gluten for it! :o

3) I am only slighly hurt that this has not been pin'd yet :);)

The thing that bothers me a bit is... I am a son of a 100% Italian father, whose parents came over from Italy as childern via Elis Island. I ate ALOT of pasta and pizza growing up. I mean ALOT. It used to make up, prbly 75% of my diet! I never had problems like this till 3 or 4 years ago??? Thats one reason why I have been so hesitant on beliveing the celiac disease would fit me.

jerseyangel Proficient

Vincent--I'm glad you are going to keep on being gluten-free. Hopefully, you can get your tests for other possible sensitivites, but you can and will get better by being gluten-free. As you heal from the gluten, I wouldn't be surprised if the other sensitivites become more obvious and you can omit them and see how you do. After I was gluten-free for a while, thats what happened with me. I became aware that corn, for example, was a problem. Never realized it before, I guess because the gluten was causing so much trouble. I also really identified with your Italian history--my mom's mom came over from Italy when she was 4. My dad's dad also came over as a child. Both of their spouses are Italian.. We had pasta every Sunday of my life as a kid as well as bread salad, homemade soup w/ pasta--it was in everything! I always had a sensitive stomach, but my Celiac didn't really kick in until 2 years ago.

jenvan Collaborator

I agree...sometimes things can't be 'conventionally' confirmed...but if your body hates gluten, that's all you need to know.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,705
    • Most Online (within 30 mins)
      7,748

    Gigisboysx2
    Newest Member
    Gigisboysx2
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      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.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
×
×
  • 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.