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

Celiac disease diagnosis

Lochella

Recommended Posts

Lochella Newbie
Lochella
Posted

I recently got diagnosed with Celiac disease I must of had it my whole life, in 35 I've always had severe stomach problems in and out of hospitals and misdiagnosed until now. My small intestine is severely damaged in now waiting to see a dietitian and my specialist wants to see me again in 2 weeks. How do some of you deal with the pain of the healing process and what helps you? I'm in so much pain?

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

Welcome Lochella :)

Hopefully you can draw some comfort from finally having an answer and thus starting the path to good health. Healing is going to come from your own body as you progress on the gluten free diet and it stops fighting itself and starts repairing that damage. You're still in the very early days and it's not an instant process sadly. 6 months is the usual figure bandied around for seeing significant improvement, although hopefully you'll get some signs of improvement much quicker than that.

The single best thing you can do is to eat good simple whole foods and make sure absolutely no gluten gets into your diet. There's some tips here: 

With stomach pains peppermint tea is my go to drink. Avoiding caffeine seems to help as well as its rough on digestion at the best of times. This may be a time to ease up on alcohol as well and consider dropping dairy, many find they're lactose intolerant but this can correct itself in time. 

You will find lots of good info, advice and support here, I hope the community is of help to you as it was to me. 

Best of luck!

M-SMOOTH Explorer
M-SMOOTH
Posted

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Jmg Mentor
Jmg
Posted
6 minutes ago, M_SMOOTH said:

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Welcome too! :)

Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Ennis-TX Grand Master
Ennis-TX
Posted

Going to suggest a whole foods only diet, no process foods or dairy for now til you start healing, Many of us suffer from deficiency issues as mentioned before, common ones are Magnesium, B vitamins, Iron, Vitamin D vitamin d E, folate, the list goes on. I really do suggest starting with magnesium in the form of Doctors Best or Nature Vitality Calm, the doctors best is easier on the stomach while the calm seems to be more effective if you can deal with it (magnesium Citrate is harsh on the stomach and can cause D)  I also suggest a blended supplement for b-vitamins like Liquid health Stress and Energy and the Neurological Support from the same company, 1 tbsp each 2-3 times a day works wonders for energy.   You might have to look into additional supplements you might be low in and for this I suggest talking to a dietician and getting tested to see about your levels.

As for pain and suffering normally you get over the withdrawal and healing starts after 2-6 weeks on a strict gluten-free diet that means no contamination or cheating. I suggest replacing most cooking appliances, cleaning everything, using freezer paper for a prep surfaces, new pans, cooking utensils, and use new liners/organizers in your drawers. Power scrub your oven and run on a cleaning cycle, same with fridge/freezer.  Got to get rid of every crumb and residue there is. I suggest tossing any baking dishes with scratches, cookie sheets, roasting pans and getting new ones. Lining things with foil when cooking helps, New toasters is a must.

When I started out I did so with just a toaster oven, microwave, and combo rice cooker/steamer/crock pot. Did roasted veggies, steamed dishes, stews, and got a bunch of microwave cooking ware like omelette makers, etc so I could cook safe gluten-free meals for myself.  Later I slowly got new pots, pans baking supplies, utensils etc.

M-SMOOTH Explorer
M-SMOOTH
Posted

Well I took test for deficiencies today won't get the results till Tuesday then I can go from there.. road to recovery 

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. 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...
    2. 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...
    3. 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...
    4. David Blake
      - 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

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      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
  • 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
      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 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      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.