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

Help-retruning Poster...loosing It!

kimber

Recommended Posts

kimber Enthusiast
kimber
Posted

Hi everyone

I could use any advice/support as I feel like my world is crumbling...

My ds will be 3 in October...he was diagnosed with reflux at 2 weeks and has been on reflux meds since then (now PPI-prevacid)

He's also on 3 different allergy meds and mirilax (tried him OFF mirilax a few weeks ago and he didn't go for 4 days)

2 skin tests and a recent RAST were all negative

Recently I kept a diary and Zach reacted to corn, popped corn, and grapes

He can be the sweetest child one day, then a TERROR the next

His episode consists of major major tantrums, constant crying, gas...pale skin, DARK circles....agrressive/angry behavior

He had b/w ordered by his GI and stool test and all were negative

I feel like I'm loosing it...I just want a normal life and to figure out what's wrong...

I can deal with whatever special diet he needs...but I don't know what that is?

I tried him on a gluten-free diet and he did really well...more energy etc, then he started having episodes again...

He is already dairy/soy free, and I'm starting to wonder what he can eat?

It has been a while since he has been gluten-free free (only gets a small amount of regular pasta on occasion..no cookies/snacks)

yesterday I made Whole wheat pasta and today he is VERY VERY lethargic, sad, pale, etc...it breaks my heart!

I really don't know what to do anymore??

We see a new GI in 1 mnth and I don't want to put him through unecessary testing and won't result in any answers

Kim

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

BUMP

If you want to start a gluten free diet and need information, PM nini for her newbie pack of information.

Any gluten gestation is not acceptable.

Check some of the posts from those who have problems with grapes.

We have people here who also are corn free.

L.

AndreaB Contributor
AndreaB
Posted

Definately get him totally gluten free with no cheating and be very careful about cross contamination. Check his meds to see if they have any gluten ingredients in them, as well as if they have any soy or dairy ingredients. Also check personal care products. If you can get all the gluten, soy and dairy removed then you can better tell what you are dealing with. It sounds like gluten is causing problems from what you wrote. Also, if he is allergic to soy you may want to watch out for peanut butter. Those two are from the same family. You could always switch to almond butter which will give you a little calcium too. Corn causes some people problems and from things I've read are best left alone or in small quantities if you can handle it. How does he do with rice or millet?

Please keep us updated on how he is doing and feel free to come here as often as you need to to talk.

evie Rookie
evie
Posted

Kim

kimber Enthusiast
kimber
Posted
  • Author

Thanks everyone for your support

Zach's gluten.dairy/soy free cereals are corn based

It's so hard to think about getting him gluten, corn, dairy and soy free

I'm sifting through recipes and different options

Thanks again, Kim

Kim

It sounds like you have your hands full Kim. Feel free to come on here and vent, ask for help or whatever helps you!! :) We are all here for help. Many here ha e been thru amny years of finding help but from my reading it seems children get diagnosed faster than mnay adults have. I understand the average for adults is 11 years, mine was more like 25 so I am glad I finally found the right Dr's a few months ago or I would have been down the drain I was losing weight so fast!! :angry: there has been alot of resaerch lately, I read recently that now autistic children are often found to be celiac and going on gluten free diet helps them a lot.

It seemed for myself it took nearly 3 months to start feeling even a bit better, could it be that your son was not on the gluten free diet long enough to be helped much or he ate some gluten food you were not aware of?

Sometimes grammas and etc feel sorry for a child & think they are deprived. B) hope I have been a bit of help. Prayers for you to help with the problems.. evie :)

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
      133,347
    • Most Online (within 30 mins)
      7,748
    Carla Mort
    Newest Member
    Carla Mort
    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.