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

Heredity


jmcbride4291

Recommended Posts

jmcbride4291 Contributor

I have posted a few query's and have alot of questions. I have never felt so lousy in my life. From having no energy, a throbbing intestine, dry skin, blurred vision, and feeling like I am be eaten alive, now I am worried about my children. I have read that tests are not accurate but expect that my children may be subject to this. One's liver readings are high with no Dr. with an answer. Two have attention problems in school. When my first was born, he had severe colic and could not keep formula down. He also was diagnosed lactose intolerant at one time. They are just kids but their behavior is extreme at times and do have social issues. Is there a 100% way to actually get them diagnosed? Can celiac also cause weight gains for no good reason?I have had several Celiac indicators in my life now that I look back and my mother had epilepsy, thyroid problems, and she died young from stomach cancer. My grandmother had RA, Thyroid issues. To make matters worse is my wife gets nausious alot, teeth enamel problems, hair loss, orthopedic problems, skin issues, etc. Her mother and sister share fiber myalsia, colitis, skin problems, orthopedic issues, etc. I do not want to sound paranoid or go off the deep end. These are all classic indicators from what I have read and I am quite concerned. Any help will be very appreciated, Thank you!


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



Celiac.com Sponsor (A8-M):



shayesmom Rookie
I have posted a few query's and have alot of questions. I have never felt so lousy in my life. From having no energy, a throbbing intestine, dry skin, blurred vision, and feeling like I am be eaten alive, now I am worried about my children. I have read that tests are not accurate but expect that my children may be subject to this. One's liver readings are high with no Dr. with an answer. Two have attention problems in school. When my first was born, he had severe colic and could not keep formula down. He also was diagnosed lactose intolerant at one time. They are just kids but their behavior is extreme at times and do have social issues. Is there a 100% way to actually get them diagnosed? Can celiac also cause weight gains for no good reason?I have had several Celiac indicators in my life now that I look back and my mother had epilepsy, thyroid problems, and she died young from stomach cancer. My grandmother had RA, Thyroid issues. To make matters worse is my wife gets nausious alot, teeth enamel problems, hair loss, orthopedic problems, skin issues, etc. Her mother and sister share fiber myalsia, colitis, skin problems, orthopedic issues, etc. I do not want to sound paranoid or go off the deep end. These are all classic indicators from what I have read and I am quite concerned. Any help will be very appreciated, Thank you!

You don't sound paranoid at all. But you do sound like you need to be gluten-free as does your entire family.

As far as testing goes...I really don't know what to tell you. Even with all of the symptoms and getting everyone tested, you may never get the diagnosis you seek. So the question really becomes....just how bad off do you need to be before you take control of your own life and trial the diet? The diet isn't particularly harmful to anyone so why not try it out as a family? Truthfully, there is nothing more to lose and a lot to potentially gain. I know that this is a leap of faith for some....but sometimes a little bit of faith goes a very long way. I went down that road with my dd and now I am gluten-free as well...and my husband has no symptoms and he sticks with the diet at home (with exception of the occasional beer). I couldn't begin to count the number of positive things that have happened since we started down this path. It's been life-changing...and mostly in a good way.

Good luck in deciding what to do.

jmcbride4291 Contributor

Thank you very much. Now I need to get everybody on board. I truly agree and feel the same way. More to gain and nothing relly to lose.

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. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    2. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    3. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    4. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
×
×
  • 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.