Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Starting Gluten Free Diet For Child
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


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! :)

0

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.

0

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

1

Share this post


Link to post
Share on other sites

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

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
      104,374
    • Total Posts
      920,569
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
    • SIBO, microscopic colitis, probably celiac here (celiac's a self diagnosis, was gluten-free before getting tested). Now my doctor is suspecting hashimoto's due to low heart rate, so getting tested for that probably tomorrow. Anyway, I feel your pain... Low FODMAPs on top of gluten-free is tough. One thing that has helped me a lot is betaine HCl with meals. I can actually eat some onions, garlic, and fruit again with much less trouble. Make sure you get a safely gluten-free brand. Country Life is certified gfco, so is tested to less than 5ppm and is what I take. Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined