• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Starting Gluten Free Diet For Child
0

5 posts in this topic

Recommended Posts

RLM13    0

Hi, I have just registered with the site as I have been searching the web for weeks now to try and find out what could be wrong with my 11year old daughter.

When I look back over the last two years there have been times I remember her saying she feels sick or has tummy ache. She is very active and involved in lots of sports clubs but over the last 4 weeks she has stopped them all as she has been so unwell. From an early age I mentioned whether she may have Asthma as she suffered from a lot of chest infections but was always just given antibiotics, after a visit to A & E about 3 years ago she was prescribed an inhaler but even though she has kept up with the preventer and inhaler the Doctors would never officially say she has Asthma. At a doctors appt last September we mentioned the tummy aches/sickness and muscle pain and was told that it all came down to growing pains and the fact that she does a lot of sport.

Over the last six months the feeling of unwell has become more often and before Easter she was struggling to go to School, another visit to the doctors and was told basically there was nothing wrong with her, even though she was now feeling sick constantly and having several very loose bowel movements every day. I asked the doctor about food allergies and he looked at me as though I had said something wrong, he said it was very difficult to get tested so we should keep her off dairy for a month and if no improvement remove wheat/gluten from her diet. My daughter and I left feeling very frustrated. Within a week we were back at Doctors (different doctor) and after weighing her again noticed she had lost a bit of weight. The doctor booked a blood test and stool sample and prescribed her Zoton in case it was a problem with too much Acid in her tummy. After a week of no change I took her off the Zoton tablets as they had Lactose in them. Back at the doctors we were told her tests were normal and the doctor handed me an information sheet about celiac disease. Since last Thursday she has been on a lactose and gluten free diet and the tummy aches have almost gone but she is now struggling with headaches and a tight chest.

I apologise for the long post but I am very frustrated with not getting any answers. I finally demanded that she be referred to a Peadatrician but why didn't they test for this originally because if I do see more improvement I can't imagine putting her back on a Gluten diet just to be tested again.

Any help or comments would be greatly appreciated as I feel like I am on my own.

Thanks Ruth

Share this post


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


I hear you on the 'feeling like your on your own'. It's so frustrating. I am still learning to trust my mommy gut. And from reading about your daughter, I think you should trust yours! I'm a newbie here to so am sure you will get some really helpful info from others on here - I already have.

I am one who has not gotten the official test done on my son. After the myriad of things he's gone through and doctor after doctor brushing the food sensitivity idea off, I ventured on my own. I did take him to a couple of alternative med specialists...both pointed out gluten and milk immediately. Why is it not an obvious answer for a regular doctor??? Anyway, I went ahead and removed them and it has helped him so much.

I know one reason people want the official diagnosis is it will help with getting the schools to comply. The way I got this accomplished was I started journaling what my son ate and his reactions. After doing this for a couple weeks or so, I put the information together, and sent it along with a letter to my doctor explaining my observations of him off gluten & dairy vs. on it. I requested she fill out the form for the school so I could go a full 30 days without either and then re-evaluate after that time. The doc went for it!

Anyway, long story not so short (sorry) - if you can't get your doc 'on board' with you...move on without them. Moms know best! :)

Share this post


Link to post
Share on other sites

By the way, I should dd that I don't intend to come off as saying a diagnosi isn't important. It is. If you feel you are on the right track, then keep at it. Good luck.

Share this post


Link to post
Share on other sites

I would urge you to get a copy of the test results so you can see if the proper tests were done (often the entire celiac panel is NOT done).

Keep you child on gluten if you are going to seek a second opinion.

Our first Pediatric GI said my son does NOT have celiac based on his genetic test (so just ignore his odd blood tests?) When I pressed him further, he told me I had "read too many magazines . . ."

Luckily we live in Boston and our Children's Hospital has a special Celiac unit. We took him there and they did an endoscopy and found him to have extensive damage.

Trust your gut and don't give up until you have answers.

Cara

  • Upvote 1

Share this post


Link to post
Share on other sites
RLM13    0

Thanks for your responses, it all really helps to know that there are others are in the same position, I should have said the blood test wasn't for food allergies, it was to check liver function and general health, that is why it is frustrating when they could have checked for it.

Have been reading other posts and all have been very helpful.

Thanks again X

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,866
    • Total Posts
      938,397
  • Member Statistics

    • Total Members
      65,764
    • Most Online
      3,093

    Newest Member
    Isobel Brady
    Joined
  • Topics

  • Posts

    • I had my endoscopy first - I was anemic and having Restless leg syndrome and palpitations.  The doc came out and said "You've got this scalloping of the intestines that we sometimes see in celiac. I took biopsies. I'll order some blood tests" My antibodies were off the charts high. I had no GI symptoms. Pathologically, celiac is divided into 3 stages:  Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy Grade B1/Type 2: villi still present but shortened  Grade B2/Type 3: complete villous atrophy Most people that have untreated, symptomatic celiac have some degree of villous atrophy/blunting. But your biopsy still could be celiac. But, I agree with ironictruth. If the labs are positive and you get better with a gluten free diet, I think you have your answer. When I had a repeat endoscopy 15 months later, I still had IELs which apparently can take several years . Or it could be from the NSAIDs I take for my aches and pains...... Let us know what the labs say....
    • A half-time report on what we've learned about each other so far in the Relational Aspects of Food Sensitivities research. The study is geared toward gaining perspective on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. It may ultimately yield strategies to address the social and emotional impact of living with food sensitivities. It aims to provide coping strategies, solidarity and empowerment to our community. View the full article
    • Feel free to discuss ANYTHING here. Nothing is tmi! We have heard it all. And you can be as dramatic as you like, we will still be here for you.  SSRI's are a bear to come off of. I got off one and for MONTHS I had the zaps in my brain. I must say I did not do it slowly or carefully and put myself in the throngs of withdrawal. Did you get off your med with the help of a doctor? (It's best to do so.)
    • If you do have celiac disease, antibodies can continue to rise and attack for days, week or months after a gluten exposure.   I hope you feel better soon.  
    • Thanks for the thoughtful replies, everybody!  I want to highlight that it's just been almost 4 weeks since I've eliminated gluten (and I've been very strict about it) - prior, I could eat gluten with no issues that like this. A sandwich would rob me of energy, but not in a way I could associate with having eaten the sandwich. How insane that four weeks off of gluten could produce this new exposure reaction for me   1.5 weeks into being gluten-free I felt well enough to taper off my OCD meds and so, while I haven had had any noticible negative reactions, SSRI withdrawals can resemble gluten exposure (although the symptoms I don't think are often delayed) - so I wonder if a weird mix is happening there.  And also... I'm mostly just stunned that my body could react so extremely now to what it used to take with relative ease a mere 26ish days ago. It's good to know this is an actual thing and not me being dramatic about my new eating regimen.   It literally feels like death and like I'll never getting through it - but I'm staying reasonable about it and woke up this morning feeling less terrible (although I've had to make several trips to the bathroom - tmi I know).  Thanks so much!
  • Upcoming Events