Is This Site For Mothers With Children Who Have Celiac?

[rainewhitlock1]

Hello, my name is Amber and my daughter is one and a half years old. My doctor found out she was lactose n tolerant and had a high SED rate level.Since finding that out we put her on a gluten free diet because celiac runs in our family and she has had all the symptoms.She seemed to be getting better on the diet until last week she started throwing up.I took her to the hospital and they admitted her for failure to thrive, they put her back on a normal diet and she continued to vomit,its been 9 days and 2 days back on a gluten free diet but she doesnt seem to be getting much better,I think Im going to take her back to the hospital.They said in order to diagnose her they need to put her on anormal diet but her body cant handle it.Any suggestions???

[Lisa]

Some times doctors make me so angry. It common knowledge that testing for Celiac is highly unreliable for children under the age of five. They are subjecting your daughter needlessly.

Please consider continuing the gluten free diet. The good people (and parents as well) here will help you with the diet. You already have a genetic history and she has shown a positive results to the diet. When she gets a little older, you can have her tested for the genetic tendency gene.

I'd say forget the diagnosis for now and stop the vomiting. You can test for food intolerances too.

I hope she feel better soon.

[rainewhitlock1]

We already have had her tested for food allergys and they were all negative is that the same as food intolerances?

[swalker]

Testing for food intolerances is highly unreliable. Every BODY is different and reacts differently to intolerated foods. The most common problem food are gluten, dairy, soy, corn, eggs, nuts, peanuts and nightshades (potatoes, tomatoes, peppers and eggplant). Food colouring, aspertame and msg are also common triggers so watch labels for them too.

I'd remove the common allergens for at least a week, then add them back one a week to watch for reactions. Keep a food and behaviour diary as well in case other problem foods present themselves.

[mommida]

If she is still vomitting whatever is causing the issue is still active.

The allergy testing is unreliable.

You might have to consider an endoscopy with biopsy, when the vomitting is still an issue.

Call the ped. for a refferal to a ped. gastro. Take your child to the hospital for any signs of dehydration.

[taweavmo3]

How long had your daughter been on the diet before the vomiting started?? She still has inflammation if her SED rate is high.

Just a word of warning, the medical community (most doctors, nurses, etc) for the most part really do not have a clue about Celiac. I've worked in pedi hospitals for a few years now, I've actually been in the room when a doctor gave completely wrong information regarding Celiac to a patient. It's frustrating, but drives home the point that you are your child's strongest advocate, and have to really do your homework when it comes to this disease that so few doctors know about.

Honestly, I would not worry about a formal diagnosis at this point. Besides the fact that she can't handle gluten, she is also at a crucial developmental stage. Pathways are being set now that will effect the way she learns for the rest of her life, if she is sick during most of it.....it has major effects that may require therapy to gain back. That is something I wish more doctors would consider before they recommend a regular diet for the sake of testing.

You can always put her back on a regular diet when she is older and stronger, to get a formal diagnosis. Right now, just do what you have to do to keep her healthy. If you need any more help, this site is wonderful! We have such a vast variety of stories, that there is always someone that can help. Good luck.

[rainewhitlock1]

A soon as my doctor told me that she might possibly have celiac, I put her on a gluten free diet because he said it might be months before we get into see a GI, she was on it for a month and it seemed to be helping and then all the sudden she started the vomitting and i figured that she maybe got some large amont of gluten somehow and then the hospital continued her on a regular diet for a few days , they did all kind off blood tests and everything was neg.They also did the endoscopy -biopsy ,havent got results yet but the only thing that they found was some abnormal bumps in the intestines and her SED rate level was normal i thought because the gluten free diet brought it down with in the month she was on it..

[mommida]

A gluten free diet could skew the results of testing for Eosinophilic Esophagitis, if gluten is the trigger food.

Has the docotor told you what the endoscopy was being done to rule in or rule out? In the time that you are witing for the lab results from the biopsy, keep a food journal. It will be harder to note the physical affects when your little one can't tell you exactly what is going on. Time the food was ingested, ingredients, mood/atttude/pain/ or vomit/"D" reaction and time of the reaction.

If there is no clear medical answer, the next step would be an elimination diet. All top 8 allergens and peas. Since you removed gluten and there was an improvement - I would remove that too.

Enjoy Life products can really help out at this point.

[Kibbie]

Hello, my name is Amber and my daughter is one and a half years old. My doctor found out she was lactose n tolerant and had a high SED rate level.Since finding that out we put her on a gluten free diet because celiac runs in our family and she has had all the symptoms.She seemed to be getting better on the diet until last week she started throwing up.I took her to the hospital and they admitted her for failure to thrive, they put her back on a normal diet and she continued to vomit,its been 9 days and 2 days back on a gluten free diet but she doesnt seem to be getting much better,I think Im going to take her back to the hospital.They said in order to diagnose her they need to put her on anormal diet but her body cant handle it.Any suggestions???

I agree with what everyone else said... I was also wondering if they have checked her out for rotavirus

[rainewhitlock1]

thanks everyone!!!

[Rebecca's mom]

This isn't something that adults usually have to worry about, but most people forget that Play-Doh has wheat in it. If it gets on a child's hands, the hands go in the mouth, and they get a gluten reaction for no APPARENT reason. Same thing goes for sheet rock and joint compound - which our family found out the HARD way last month while doing a home renovation project......

You may want to contact your local Gluten Intolerance Group (GIG) - the main website is Open Original Shared Link, and from there you can look for a group in your area - they should be able to direct you to a local pediatric GI who may be willing to see you immediately, given your daughter's symptoms and your family history of Celiac Disease.

Incidentally, you can have the genetic test run anytime - a person's genes aren't affected by eating gluten. Ask for the HLA Typing for Celiac Disease test - if that comes back showing that she carries the gene for celiac disease, then you can decide to go ahead and continue with a GFD, regardless of the results of an antibody test and/or a biopsy.

Many GI doctors are hesitant to recommend a GFD for someone if they don't have a positive diagnosis, because they are still under the mistaken impression that following a GFD is difficult. You need to do what YOU feel is best for your little girl - you're already doing that, so keep up the good work!

Good luck, and I hope you find something out really soon -

[bear6954]

Could it be acid reflux? My sonw as gluten-free for 1 yr and started to throw up again. Not huge amounts, but at weird times - like play group. It never really bothered him. He would also throw up at night. He first went on mylanta and then we switched to prevacid. I still watch him when he drinks or eats a lot at one time. But so far, on the prevacic (knock on wood) we have not had any issues.

[kaleesmom]

A soon as my doctor told me that she might possibly have celiac... , they did all kind off blood tests and everything was neg.

Be careful about negative blood tests. Up to 20% of celiacs will have negative tests. My daughter was diagnosed at about 17 months by endoscopy with biopsy. The biopsy showed that she had severe disease (although we didn't need the biopsy to know something was making her severely sick!) She was also vomiting every day prior to the gluten-free diet. It took her about a week before we started noticing improvement and no more vomiting. It took several weeks before she started to return to normal toddler status. Her blood tests were negative and she had severe disease! My mother, diagnosed with "irritable bowel disease" and with a history of GI upset for years also tested negative through bloodwork. She started a gluten-free diet just to see, and she says she feels better than she has in years. Every once in awhile, she will cheat and eat gluten, but says every time, it makes her sick.