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

Very New To This.lots Of Questions

dragonsrebel

Recommended Posts

dragonsrebel Rookie
dragonsrebel
Posted

I am very new to this site only being diagnosed two days ago(april 7,2008).I have to say i am very scared and very frustrated. Scared cuz I know nothing about celiac and frustrated because I have been misdiagnosed for 23 years. I have been through surgeries and test I know i probably could have avoided had i been properly diagnosed. I have suffered from the following > Insomnia, acid reflux, severe muscle pains, siatica, headachs, neck pain, numbness and tingleing in my face and arms, depression,anxiety, constant yeast and bladder infections, and skin irritations. I have no idea how many of these are caused by wheat. Altho im sure alot of them are. I have seen doctor after doctor anly to be told either nothing is wrong with me or sent for more tests which only come up negative. Finaly i was sent to the right doctor who only had to do a simple blood test.The blood test was postive. The doctor told me that normal levels are 4.0 mine were 99.2!!!!! I have been reading this forum non stop and have had a few questions answered but have many many more. I go for biopsy on april 28 and have no idea what is involved. If there is anyone who can help me with my questions please reply to this

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted

welcome to the forum!

It is actually a pitty that you had to wait for 23 years but unfortunately that is the case for many others in the forum. For me it was only 12 years....any way

You are going to have a biopsy.That's good. Your doc has to see yor intestine and see the damage. I promise you will not understand any thing. You are going to fall asleep and when you wake up the doctor will tell you it is over. Some feel a pain in the throat. I did not. But do not start the gluten free diet before the biopsy cause this will have an effect on the results.

You are scared cause you now nothing about celiac .Well the most important is that you have to stick on a completely gluten free diet for the rest of your life and if you do so all the symptoms will disappear as time goes by. If they are going to leave in 1 month or in 2 years no one can tell you. But they will eventually go away. The gluten free diet sound scary in the beginning but it is not.....there are so many products (chocolate, pasta, cookies) and so many recipes that you are going to have no problem at all. It is very important that you are very careful not to eat hidden gluten (cosmetics, shampoo, mouthwash, tooth paste, food that you consider to be innocent). You can get a lot of help in the forum as far as hidden gluten is concerned.

I don't know what else you need to know......What are your questions???

Meline

happygirl Collaborator
happygirl
Posted

Post your specific questions---I'm sure that many members will be happy to help in any way they can.

jmcbride4291 Contributor
jmcbride4291
Posted

Unfortunatly you must stay on gluten for biopsy. However your choice since blood positve, the only 100% test is the gluten free diet. Biopsy and other tests can come up negative and are very wrong. Once you do go gluten free be very careful with foods. Make sure you speak to the manufactures. Some state glute in ingredients, some do not and it could be in natural flavorings or citric acid, or coloring. It is not as hard as it sounds. The biggest hurdle is shopping in the begining. Yes Celiac can cause a great many other health problems. Bone, thyroid, diabetes, cancer, neurologic, etc. You name it. When in recovery if you accidently ingest, you will know, becausse your body becomes more sensitive. You might also crave the exact things that make you sick. This will change in most cases. Once gluten free your likes and dislikes can change. Infact your head will clear and its almost like you never got to meet the real you due to your whole life you been basically poisoned and it affects your brain. I am not an expert but have done extensive research and it was not too long ago when I went gluten free. Many doctors do not have extensive knowledge. Becareful of medicines. Tylenol, iboprophen, and prescription. Many can contain gluten. Im sure many in this forum can verify this and all our members are very helpful. Do not hesitate to contact me, even by personal message. If I can help I will. Good luck!

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. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

      Supplements for those Diagnosed with Celiac Disease

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

      Insomnia help

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

  • Member Statistics

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748
    jimiiiii
    Newest Member
    jimiiiii
    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

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      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
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      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
      Insomnia help

      By nanny marley · Posted

      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
      nothing has changed

      By nanny marley · Posted

      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 
×
×
  • 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.