Starting Gluten Free Diet For Child

[RLM13]

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

[lindsayanne0]

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!

[lindsayanne0]

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.

[Cara in Boston]

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

[RLM13]

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