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

Need Some Encouragment


Mama of 6

Recommended Posts

Mama of 6 Rookie

Hi everyone, I am new here, and am so glad to find this forum. I have had a panel done and it came out negative, I am seeing from the other posts that it can sometimes be a false negative. I was so disapointed because I thought it would give me a clear answer. I have had a biopsy done in 2006 because of some other problems with my stomach. I just recently whent back in to see the same GI Dr. and he said my biopsy looked normal. I have been gluten free now since the first of may and felt remarkably better the first three days. Then felt crappy for about 3 days, then felt better again. I was haveing some joint pain so I took Norco (generic for vicoden) and I am feeling HORRIBLE. Every symptom has came crashing back and have been down for three days. Did I mention I have 6 kids all under the age of 11. I started feeling my worst symptoms 6 weeks after the birth of my baby and was told I have Fibromyalgia. I have been sent from dr to dr and specialists all claiming I have fibro. They think I am very crazy because I keep telling them I don't. I also called the company that makes the Norco and they do not use gluten products. So here is my quesion, is it normal to feel good and then bad? Do you think it was from the Norco? Is it possible that I have a gluten intolerance?

Also I should mention that I have had every test in the world done (it seems like) and everything came back normal except I have Gasterpareses which is a slow emptying of the stomach and giagantic cysts on my overies. and suposibly I have fibro. Someone please help me and give me direction so I can get back to being me. Thanks ahead of time for all the support!


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



Celiac.com Sponsor (A8-M):



ciamarie Rookie

Do you have the actual test results, and which tests they took? If you're now gluten-free, it's likely too late to have more tests done, but if you share details on what you have some of the more knowledgable folks should be able to let you know if perhaps you're borderline or something?

Also, yes false negatives seem to be somewhat common. It's also not unusual to go back and forth on feeling good, then not so good when first starting out. There's also a possibility that there are other ingredients that are causing problems, it took me a while to discover I also need to stay away from MSG as well as sulfites (preservatives). I know certain starches and maltodextrin in supplements cause issues for me, and it turns out they fall under the sulfite category. Keeping a quick food diary if you can might be helpful.

Mama of 6 Rookie

Do you have the actual test results, and which tests they took? If you're now gluten-free, it's likely too late to have more tests done, but if you share details on what you have some of the more knowledgable folks should be able to let you know if perhaps you're borderline or something?

Also, yes false negatives seem to be somewhat common. It's also not unusual to go back and forth on feeling good, then not so good when first starting out. There's also a possibility that there are other ingredients that are causing problems, it took me a while to discover I also need to stay away from MSG as well as sulfites (preservatives). I know certain starches and maltodextrin in supplements cause issues for me, and it turns out they fall under the sulfite category. Keeping a quick food diary if you can might be helpful.

Thank you so much for your reply, I will start a food journal and try to stay away from the prestervatives. I just want to get to feeling better! I should get the test results back for my kids today I am scared and excited at the same time.

Razzle Dazzle Brazell Enthusiast

I have read a lot about celiac sufferers developing intolerance and allergies to other substances. I guess because it makes your immune system very inflammatory and sensitive. I think it woildnt be a bad idea to get tested for other allergies as well.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley 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
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • 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.
×
×
  • 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.