• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

One Week, No Improvement?
0

11 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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:(

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,761
    • Total Posts
      932,250
  • Member Statistics

    • Total Members
      64,226
    • Most Online
      3,093

    Newest Member
    FionnualaDH
    Joined
  • Popular Now

  • Topics

  • Posts

    • If you're like me, you've already tried all multiple options without very good answers, thus the reason you are on the boards...
    • Yes, I was. I had two weak positive blood work, then an endoscopy not for celiac but was very inflamed, and one positive genetic for celiac. My diet is very limited right now. I am almost paleo. I am really struggling to find food that I can eat and not bother my stomach. I eat a lot of nuts, peanuts, beans, chicken, veggies, fruit, and soups. I have cleaned out the house from gluten (except for my dad's rolls  ) I can not change out pans and cookware. I could try to get my own personal but it would be hard. How did you get glutened? 
    • thleensd, If you have POTS you should look into Magnesium. Here is a thread started by Ennis_Tx that talks about some of it's many benefits. Also see this link from the affibers.org website that mentions specifically Magnesium Taurate's role in arrhythymia's. http://afibbers.org/resources/taurine.pdf I also recommend trying some some Niacinamide and/or a 100 B-complex 3/day.  B vitamins help us manage our stress. If it (Niacinamide) or the B-100 or B-50  causes you to burp in 2 or 3 months (which has Niacinamide in them) then your symptom's could be caused by co-morbid pellagra. Knitty Kitty has given you good advice as well since Celiac's are low in many nutrient's often. Here is my blog post that explains what I believe happened to me. I hope it helps you thleensd the way it did me. Take a B-complex for couple months to see if it helps. Frequency is more important than the amount. 2x day of of a b-complex will allow your serum levels to stay high throughout the day helping you recover 2x as fast as once a day.  Do the same with Magnesium Glycinate or Magnesium Taurate  (2 to 3 times a day in divided doses) and I think your fatigue will greatly improve or at least your energy levels will increase greatly. I hope this is helpful. ****this is not  medical advice only some of the things I did to help myself. I am too sharing in hopes that other people will hear my story and believe . . . 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • First were you diagnosed with celiac? Second what is you basic diet right now, there are some other common issues that go along with celiac food intolerance wise we might be able to narrow this down. Third did you read hte 101 and make 100% sure that nothing is contaminated? This sounds like you might have contaminated a common used prep surface, utensil, pot. Or have a contaminated spice, condiment, or something new in your house like a cleaner, hygiene product. etc that might be leading to more issues. I can only say if you can get your antibodies checked to see if still elevated to know if it is gluten or something else. Imodium will help with the D, Anise (the spice) and gas X can help with bloating, pepto bismal can help overall. These can help to make it more manageable. \ I might suggest trying to eliminate the chance of it being cookware by getting some cheap new microwave cook ware like a steam tray and omelette maker and just having steamed veggies, eggs, and perhaps a baked sweet potato. Avoid condiments and spices for a bit and see if you can clear it up taking it down to whole unprocessed foods. I find doing this and resetting helps after a issue (I got glutened this last weekend and did the egg and veggie diet with avocado and almonds). Bonus of cooking in the microwave is you get softer end product that is more moist, less burnt and oxidized making digestion easier in my opinion.
    • You didn't ask...but no licking either unless they have gluten free body products on...blush.
  • Upcoming Events