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

Any Help Is Appreciated :(


jay88

Recommended Posts

jay88 Apprentice

Hi everyone recently been diagonosed with celiac disease (22 years old) ive been gluten free for 8 days but im not happy with my improvement is this normal.

before i was diagnosed

Chronic Insomnia

Erectile Dysfunction

Stammer

stomach pains

Severe constant headaches

Brain Fog

Fatigue

This is how my recovery is going

Chronic Insomnia (no improvement)

ED (first day off gluten fine since then no improvement)

Stammer ( 100% gone :) )

stomach pains (no improvement)

Headaches ( come and go not as bad)

Brain Fog ( 80% better)

fatigue (70% better)

Can anyone tell me their timescales on recovery thanks please reply :) x


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



Celiac.com Sponsor (A8-M):



sahm-i-am Apprentice

Hi Jay88,

I'm glad some of your symptoms are improving - at least that is something. But it will take longer to heal. I have been gluten free for 5 months and am slowly getting my energy back just this past month. My 11 year old daughter has been gluten-free for just a couple of months and she was feeling better (no D, no stomach pains) within a few weeks. So, everyone is different. Hang in there - it took a while for gluten to do the damage, it may take a while to heal.

Wendi

bincongo Contributor

Hi everyone recently been diagonosed with celiac disease (22 years old) ive been gluten free for 8 days but im not happy with my improvement is this normal.

before i was diagnosed

Chronic Insomnia

Erectile Dysfunction

Stammer

stomach pains

Severe constant headaches

Brain Fog

Fatigue

This is how my recovery is going

Chronic Insomnia (no improvement)

ED (first day off gluten fine since then no improvement)

Stammer ( 100% gone :) )

stomach pains (no improvement)

Headaches ( come and go not as bad)

Brain Fog ( 80% better)

fatigue (70% better)

Can anyone tell me their timescales on recovery thanks please reply :) x

I wish I had the answer. I am 2 1/2 months gluten free and I have good days and bad days but the good days seem to be more frequent now. It can depend on how much damage your intestine has and if you are still being exposed to gluten although you may not know it. If your doctor hasn't checked for thyroid problems you may want that done. My insomnia has not gone away but I am still hopeful. They say 6 months to a year is about the shortest time to heal.

jackay Enthusiast

I also have chronic insomnia. It has been 10 months that I have been gluten free and very strict about cross contamination. I was getting more sleep but never developed a sleep pattern. I range anywhere from no sleep to a full night of sleep, although a full night is rare.

I got sick about a week and a half ago and figure it was from gluten. Normally, I only have the effects for 24 hours. this time it lasted over a week. My anxiety and insomnia are back full force. I started taking an antidepressant again Friday night and got some significant sleep that first night. The next night I didn't get much sleep and last night no sleep again.

I have used this antidepressant in the past because it is suppose to help with sleep. It always works the first night and that's about it. I'm seeing a psych nurse tomorrow to talk over medication with her. I am getting too run down from lack of sleep.

bluebonnet Explorer

for me, my chronic insomnia has taken months before i saw improvement. its by no means cured but i have noticed a significant difference. on that note, i also notice if i accidentally eat gluten that my nights will consist of mostly tossing and turning and no matter how tired i am i will only get a few hours of restless sleep. i seriously do not understand how i functioned all these years on the amount of sleep i got. i think for most people insomnia just takes longer to improve. oh and i got some helpful tips about b vitamins and sleep so find those links and check them out. have you had your b levels checked? best wishes ... sleep will improve, it just may take longer than you want! :)

kareng Grand Master

did they blood test for iron, vit d, vit B 12? Nutritional deficiencies can cause a lot of problems and a long time without supplements (vitamin pills) to get back to normal.

mbrookes Community Regular

For the sleep, you might try melatonin (OTC) It has really helped me. Just be sure the brand you buy is gluten free.


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



Celiac.com Sponsor (A8-M):



jackay Enthusiast

For the sleep, you might try melatonin (OTC) It has really helped me. Just be sure the brand you buy is gluten free.

I don't know if it would work for Jay88 but melatonin doesn't seem to work for me.

I tried 3 and 6 mg. doses. Still no sleep pattern. My doctor doesn't want me to take any more than 6 mg. With melatonin, some nights I get fairly decent sleep with waking only once, some nights awake every hour, some nights awake every two hours, some nights I get to sleep easily and then wake up in an hour or two and can't get back to sleep, some nights don't fall asleep until very late into the night and other nights I don't sleep at all. It is the same without supplementing with melatonin.

I think the nights I get fairly decent sleep is that the human body needs sleep. After getting so sleep deprived, it finally crashes. Back in December I slept for nine hours one night. I thought I was finally recovering and sleep was turning around. It was just a fluke and only happened that one night. It was heavenly though.

GFinDC Veteran

Sleep, what do you need that for? :blink: I have had my share of sleep problems too.

If I eat dairy I can't sleep. If I eat food colorings I can't sleep. If I watch scary movies I don't want to sleep.

Lots of us have other food intolerances beyond gluten. You may need to experiment a while to find if any other food intolerances are affecting your sleep.

By the way, 8 days is a nice start on the gluten-free diet, but you most likely have a lot to learn still. Avoiding processed foods may help you, and also avoiding soy and dairy.

lucia Enthusiast

My insomnia only cleared up in response to herbs I received from my acupuncturist. (Herbs are also available through a Chinese herbalist.) I don't know what I would have done otherwise. I couldn't find any relief. It was awful. I feel for you.

jackay Enthusiast

My insomnia only cleared up in response to herbs I received from my acupuncturist. (Herbs are also available through a Chinese herbalist.) I don't know what I would have done otherwise. I couldn't find any relief. It was awful. I feel for you.

lucia,

I tried herbs and didn't get anywhere with them either. I just can't seem to get on the right track. It is a viscious cycle with insomnia and anxiety for me. One feeds off the other

txplowgirl Enthusiast

My insomnia and anxiety went away after I got rid of the gluten, dairy, and soy and started taking 5 mg of melatonin and 100 mg of 5-HTP together. Now, I get about 7 hours a night straight. This is a big improvement over waking up every couple of hours and then staying awake for an hour at a time every single night since I was 8 years old.

srall Contributor

8 days in I was seriously in the detox stage. I started feeling better after 2 weeks. 7 months in I still have good days and bad days. If my diet is very pure and full of whole foods, lots of protein and veggies, I feel at my optimum. Good luck. Give it time.

jay88 Apprentice

Thank you everyone for all for the wonderful replies! :)

I will take all the advice given to me on board and persue my quest for optimum health because we all deserve it!

I wish everyone a speedy and full recovery

thank you again :)

rdunbar Explorer

Hi, for insomnia, i understand vitamin D3, calcium and magnesium supplementation is supposed to help, besides most people w/ celiac tend to be deficient in these anyway, so you probably can't go wrong.

also, making sure your bedroom is totally, and i mean totally dark really helps.

GFinDC Veteran

Thank you everyone for all for the wonderful replies! :)

I will take all the advice given to me on board and persue my quest for optimum health because we all deserve it!

I wish everyone a speedy and full recovery

thank you again :)

You are welcome! Hang around, if we are full of anything it is free advice! Cheap at half the price. :)

lucia Enthusiast

lucia,

I tried herbs and didn't get anywhere with them either. I just can't seem to get on the right track. It is a viscious cycle with insomnia and anxiety for me. One feeds off the other

Jackay,

Sometimes people try prepackaged herbs, but that's not what I mean. I actually received specific herbs that were put together for my condition (as determined by my acupuncturist). The Chinese herbalist will talk to a person about her condition and read her pulse and tongue, and only then prescribe herbs.

It felt like such a miracle that I just want to share.

Lucia

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.