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

One Week, No Improvement?

Mary5757

Recommended Posts

Mary5757 Newbie
Mary5757
Posted

My 18 month old daughter was diagnosed a week ago with celiac. We started her on a gluten free diet immediately. However, a week later she is showing no signs of improvement. She is very lethargic, little appetite, fussy, clingly. She lost weight before we diagnosed her. I'd be surprised if she hasnt lost more:(. I'm so worried about her. Is this normal? How long before you noticed a difference! I've seen so many posts where it seems like improvements are noticed within a few days. How can I be sure there is nothing else going on?

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome!

I know it is very frustrating when you can't see improvement. With the symptoms you list it can take some time. The first symptoms in young children to improve are usually the digestive - tummy aches, diarrhea, etc - even these can take weeks and months, rather than days. It can take time for the inflammation to subside and for her small intestine to start healing.

During these early days minor gluten can still be causing problems - it takes time to remove all sources of gluten. If you haven't, you'll need to replace some kitchen items - toaster or use a toaster oven with foil lining the shelf, separate cutting board, colander, cooking utensils, etc. If your kitchen will remain mixed (preparing gluten) a separate color of cookware/utensils is an easy way to help reduce cross-contamination during preparation.

Hang in there - ask as many questions as you need - the transition is tough, but we've all gone thru it and are here to help.

Wishing your daughter speedy healing.

Mary5757 Newbie
Mary5757
Posted
  • Author

What about cooking on a grill? We are only putting salt and pepper on items that we are grilling but could there be remnants of gluten from previous cooking?

Mary5757 Newbie
Mary5757
Posted
  • Author

Also, do most people recommend everyone going gluten free? So far she is the only one who has tested positive. Poor thing. We are trying to focus on whole foods for now. Although she does have processed gluten free snacks. Thanks for the help and advice! So stressful, I wish it was me instead of her:(

GottaSki Mentor
GottaSki
Posted

What about cooking on a grill? We are only putting salt and pepper on items that we are grilling but could there be remnants of gluten from previous cooking?

For now you can line your daughter's food with foil on the grill.

Some will recommend replacing the grilling racks. Personally I think if it is cleanable - maybe with steel wool if needed - then clean it. For our BBQ my husband cleaned the racks with a wire brush then turned the flame up to high after cleaning and I never had a problem with it.

psawyer Proficient
psawyer
Posted

There could be residual traces of gluten on a grill if buns have been toasted, or other gluten items have been cooked. Once you go gluten-free with it, the amount will diminish. A gas grill can reach over 600 degrees with the cover closed. 30 minutes of sustained heat at that temperature will destroy residual gluten--preheat cycle--don't keep any food at that level--many carcinogens develop in a short time above 550 degrees.

In the meantime, put a piece of foil on the grill to prevent contact between the grill and the food you want to protect.

GottaSki Mentor
GottaSki
Posted

Also, do most people recommend everyone going gluten free? So far she is the only one who has tested positive. Poor thing. We are trying to focus on whole foods for now. Although she does have processed gluten free snacks. Thanks for the help and advice! So stressful, I wish it was me instead of her:(

There is no need for everyone to go gluten-free right away. There are many whole foods that are naturally gluten-free - as you transition you'll find what is best for your family. I suggest dinners be gluten-free so you aren't preparing multiple meals. With an 18 month old you will have to be careful about where gluten is prepared. Do you have pets? - many pet foods have gluten and can be tough to separate from those shorter folks in the house.

The transition is very stressful. Know that it will take time - read what you can - keep asking questions and also know that accidental gluten will happen during the early days - heck they can happen to those of us that have been doing this for years.

Take it one step at a time - I promise it will get easier.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

My stomachaches improved within a few days but I went through a withdrawal with made me feel tired, cranky, and unwell. It lasted a couple of weeks, perhaps your daughter is feeling some withdrawal too.

Best wishes.

NikkiP Newbie
NikkiP
Posted

My 18 month old daughter was diagnosed a week ago with celiac. We started her on a gluten free diet immediately. However, a week later she is showing no signs of improvement. She is very lethargic, little appetite, fussy, clingly. She lost weight before we diagnosed her. I'd be surprised if she hasnt lost more:(. I'm so worried about her. Is this normal? How long before you noticed a difference! I've seen so many posts where it seems like improvements are noticed within a few days. How can I be sure there is nothing else going on?

Hi Mary,

I have read in various places, that some celiacs cannot tolerate any starchy type foods and grains for quite a while, until their gut is totally healed. It can appear that they are intolerant of many foods, but this is because the gut needs time to heal, and most starches may need to be avoided in the early stages. See the Specific Carbohydrate Diet books, by Elaine Gottschall (and there's another author) which, I believe, are also gluten free. They may contain helpful info for you in the early days with your daughter, and possibly in the longterm.

Also, have you had her checked for T1 diabetes? Sometimes the conditions co-exist.

I feel for you, and hope things improve soon for you and your baby girl. Don't be afraid of taking her back to the doctor, even if it's just for peace of mind.

megsybeth Enthusiast
megsybeth
Posted

Did your daughter have her nutrient levels checked? Maybe she's anemic? Good luck! I'm on my third day gluten-free and having a lot of stomach pains, though I'm being very strict. I think the healing process can be painful for some of us.

Mary5757 Newbie
Mary5757
Posted
  • Author

I think they checked for anemia...definitely thought no J1 diabetes. She is slowly showing improvement now. She is acting better but still pretty picky with her eating. Hopefully her appetite will come back soon. Although she's always been a finicky eater.

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.