Help Needed With 8 Year Old

[jemma]

New to the forum so hello.

Have been trying to find out what is wrong with my daughter for the last two years but not feeling like im getting any answers so came to ask for what you lot think and advice really.

For the last 2 to 3 years she has been complaining of tummy pain(around belly button and below)

very thin for her age and height.cannot seem to put weight on but increased appitite.

She has geographical tongue which hurts(acidic and hot things make it worse)

Tired but does not sleep well but put this down to not needing to.

Fainting and in my opinion seizured twice but none seen by doctors etc.

vomiting due to pain my daughter said

this went on for 3 to 4 months every day before doctor did anything

We went to the doctor and he tested her for celiac along with usual other by taking blood but all came back negitive.

Had hospital app a few months after again blood taken and all negitive. doctor said it must be STOMACH MIGRAINE

since then

Gas problems and the smell is very bad.

Her stools are brown but they has mucus around and float.does not seem to suffer from diarrhea but sometimes constipated.

irritability.

circles under eyes.

pale complexion.

She seems to have bouts at the moment though where she will be fine for a few weeks or even a month then she gats really bad pains again etc. Have bben eating lots for salads etc and changed bread as husband on diet

She cried yesterday saying she thought they had gone as she had not had one for a while but now they are back,

Any ideas? im stuck

Thankyou.

[Amyleigh0007]

I am so sorry to hear about your daughter. It is difficult when our kids are sick and we can't help them. Your daughter certainly is showing symptoms of Celiac or gluten intolerance. Have you thought about testing through Enterolab? While it doesn't diagnose, it can give you pieces to help put the puzzle together. You don't need a doctors permission to order tests.

[jemma]

I am so sorry to hear about your daughter. It is difficult when our kids are sick and we can't help them. Your daughter certainly is showing symptoms of Celiac or gluten intolerance. Have you thought about testing through Enterolab? While it doesn't diagnose, it can give you pieces to help put the puzzle together. You don't need a doctors permission to order tests.

Hi and thanks for the reply. Have heard of that test and was thinking of ordering it. am wondering if anyone has used this test and there outcome from it as i dont know if doctors would take it seriously .

Am going to look more into it tonight so thanks again. jemma

[ang1e0251]

Can you post her blood results here? There are those who are good at reading those test results. It can't hurt to get a second opinion on them. Sometimes dr's get locked into the entire reading and don't report to you readings that are borderline to them. celiac disease is highly specialized and there aren't a ton of doc's out there who know all the ins and outs. Another point is that there are many with celiac disease who are IGA deficient who never test positive on blood work because of it.

Even if she doesn't have celiac disease, she could be gluten intolerant. That will not show up on any test but she could still suffer strong symptoms from it. Have you ever tried her on a completely gluten free diet? A positive dietary response can show a doctor another piece of that puzzle they need to dx. And if you feel strongly about it, and don't necesarily require a dr's opinion, you can just put her on the diet and see how she does. You must decide whether you want further testing or want to just go for it.

[elle's mom]

It does sound like a lot of your daughter's symptoms do point to celiac. My daughter is a diagnosed celiac (through IgA ttG and endoscopy) so my other children are screened annually. My son was recently diagnosed as IgA deficient, so the blood screenings won't show the antibodies. I'm not sure if they never checked the total IgA the first time he was screened, but this past time they did and his levels were well below the normal range. This means that the blood screening is useless. This may be a possible reason her findings came back normal, if they never checked the TOTAL IgA. Just one possibility for your daughter.

[Pattymom]

Two routes seem like good choices-have you seen a GI specialist. You might want to and consider a scope-it could show celiac even when the blood test doesn't especially in a child. Plus with such significant symptoms it could also show other GI diseases that might be going on. I know how hard it is to put your child through a surgery-i've done it, but sometimes getting information to help is work it. It also rules out/find other diseases that you wouldn't want to ignore. My brother has severe Crohn's disease, so we wanted to make sure that wasn't going on for DD as well.

The other route, try the gluten free diet and see what happens ( I also choose this route with a different one of mine) The relief from the gas and pain was big enough to convince my negatively blood testing 13 year old son to stay gluten free-nothing like pain to motivate you to make changes. Sometimes the relief is so worth the lack of official diagnosis.

so we are now a totally gluten free household-I have 3 children who need to be gluten free and myself ( I tested positive on bloodwork after going off gluten for my nursing infant-I didnt' know I was sick until I felt better) One child and husband who can eat gluten.

good luck finding answers, hope you dd is feeling better soon,

Patty

[mstroud]

I'm not sure I have any advice for you as far as testing, but your daughter sounds a bit like my son. He was 7 when he was diagnosed and had the dark circles under his eyes, pale skin, fatigue even though he slept a lot, abdominal pain, and leg /joint pain. He was also starting to show signs of depression. The GI first said he really thought it was abdominal migraines, but the blood work and scope both came back positive. They were both a 'slight' positive and the nurse said we probably caught it early. Maybe that's why your daughters came back negative ... maybe it was early or maybe a false negative.

My middle son had his blood work come back negative, but positive for the double DQ2 gene (mine came back that way was well). My doctor and my middle son's doctor both said separately that we should probably just follow the gluten-free diet since we both had what could have been symptoms. So, we're now all 3 on the diet and wouldn't go back!

I really hope you find answers. I think one of the toughest times in my life was having my oldest son in pain every day and not knowing how to help him!

Keep us posted on what you find out!

[amysmom]

I don't know how long it has been since she was tested but it took awhile for me to have my daughter diagnosed. She was diagnosed with diabetes when she was 5. At that time she kept complaining of stomach aches and the doctors wrote it off to sugarfree products. A little over a year later she began to have seizures with no explanation as to why. I stopped using all artificial sweeteners and soon after. She started waking up with stomach pains and vomiting and after she would vomit she would be fine for about another 3 monts when it would happen again. I asked the doctors to check her for Celiac and they said they checked her when she was 6 and she normally would be checked every 5 years. Even though the doctor didn't feel like her symptoms were significant they checked her anyway. It came up borderling so they rechecked her 3 mos later with more blood tests that the first and her antibodies were extremely high. She finally had her biopsy and diagnosed at the age of 8. She has been gluten free for 7 months and has been seizure and vomit free since. I hope you get an answer