Sick 8yrold

[hillyb6]

i am the mother of 6 great kids

5 boys 1 girl

the long story made short is i now suffer some unknow gi problems and have lupus

crohns is known to run in my family and my father was adopted and so i have no idea on his side

my dhs side not sure about either

i have an 8yrold daughter that has had strange gi issues off and on her entire life

as a infant and toddlerhood unexplains runs eventually told by gi dr it was due to

antibotic killing all the good bacteria in her digestion and they put her on cultrueall for about 2yrs and

we took hre off milk not in cooked products seem to get better

so all seemed good for a few years last feb 16th she came home with a horrifing headache sobbing

gave her tylenol put her to bed she woke up screaming about her head and not being one to complain much i was owrried i took her to the er and they thought due to the fever it ws strep, it wasnt

they did a ct scan of hre belly from something that didnt look right in her blood work, and they said she showed inflamtion of her instestine, said she didndt have fat banding which is common with apendisitst so they didnt know, sent her to the local childrens hosptial whty said its appendtistist and took out her appendix that just the beginng of the nightmare we are currently in, she felt better but with in 3wks she started getting horriable migraines, her entire face turns bright red, her blood pressure goes up, and she runs a low grade fever they said its a virus, they have said it was alot of things i kept taking her back because then she comapling her neck was hurting, and then her right knee none of it made sense finally they could only tell me her blood work showed inflamtion not due to infection, her knee ws a bit inflamed for unknown reasons, they ct her head found nothing wrong, put her naproxin it helped then the stomach pains started first randomly then over the sumer more and more often, as school approached more freqnetly enough for me to think it was more than just something random, hre headaches still comming and sometimes still having knee pain, someone mentioned to keep a food journal found out things like pizza, gold fish crackers, harvert cheddar chips, sandwhichs, cookies, fried chicken strips all seemed with in 10-20mins she complaining hre stomach hurt, i took her to the dr they put her on previcid saying if it was a ulcer or reflux it would fix it said wait 3 month and if its not better than referral to gi clinic,

she woke up monday am in srevere agony of her stomach crying and crying took hre to the er she has 104 temp and they said it the fever causing her stomach to hurt told me to just give her tylenol and it will go away, her new ped did a celiace panel yesterday so we are waiting for the result we do finally have a appointment to a gi clinic in a few weeks they said it would be months but amazing we got in, is there anything i need to know to ask or push for is ther eanyother tings that can cause this besides celiacs, is there any connection so the foods and her headaches? i read that surgery can trigger problems, the gi clinic said it could be soemthing to do with the surgery she had last feb

anyone with any idea, help or support would be welcome thank you for listening

sorry for the typos man i need to get spell check

[Lisa]

Surgery can certainly be a trigger for Celiac to kick in.

I am glad that you doctor thought enough to do a celiac panel on her. But, I understand that they can rule in Celiac, but cannot rule it out. It's refered to a false negative.

It should not take long to get her result back. Then you will know which direction to turn.

I wish you both comfort while you wait.

Lisa

[Nancym]

Just wanted to commiserate with you on the frustration of getting a diagnosis. And I wanted to suggest two things: First is, keep pushing to get a proper diagnosis. I've seen so many episodes of this health program on TV (Mystery Diagnosis) where parents keep getting terrible answers back from doctors and nearly lose their children to some awful disease. So keep pushing for an answer and use the internet to help you find answers. Don't let them fob off non-answers.

My second bit of advice is to try a very restricted diet on your daughter no matter what the celiac tests come back as, after you're done with the testing. So very many of us had negative tests but found our health again after trying the diet.

Good luck, Momma!

[hillyb6]

thanks its nice to hear others out there

[chrissy]

i don't know if this info helps any, but we have recently discovered that gluten seems to cause headaches in one of our celiac daughters.

[hillyb6]

i don't know if this info helps any, but we have recently discovered that gluten seems to cause headaches in one of our celiac daughters.

yes i have b een reading and have read that others mentioned headaches but its not listed on any sights i read with symptoms of celiacs does anyone know why not

[FeedIndy]

There are over 200 signs and symptoms of celiac disease. I have yet to find a list that even comes close to naming them all. That's why it is so hard to miss and why doctor's think it can't be celiac because you don't have a handful of symptoms traditionally thought to indicate celiac.

[hillyb6]

There are over 200 signs and symptoms of celiac disease. I have yet to find a list that even comes close to naming them all. That's why it is so hard to miss and why doctor's think it can't be celiac because you don't have a handful of symptoms traditionally thought to indicate celiac.

thanks it makes this soo hard to navigate when you cant get standard list

her new ped jumped straight to celiacs before i got to that point when i was listing her problems

and since her surgery she asked if celiacs ran in our family i said i dont really know crohns and lupus

and my gi had ran a panel of blood and more and more and more blood i wonder if he ever ran a celiac panel of it that was the next step i should call and find out we have moved and changed insurance so

i need to find a new gi dr i can stand

but everyone seems tripped up by the headachs and even had the nerve to ask me it if keeps her from going to school i said first off she loves school and has ltos of friends and is doing wonderful all a's and b's

she is the type of kid to go to school sick not the i dont want to go type, and i said yes it has caused her to miss school when she has bene up allll night sobbing in pain, grrrrr i hate drs sometimes she had real physical changes when she is in pain her blood pessure goes up she runs a low grade fever, has awful headache her entire face is bright red her eyes even get bloodshot and watery, soo there is actuall proof soemthing is going on

thanks for the info

[chrissy]

i hope that this will make sence-----but i wonder if celiacs can get some symptoms that are caused by another celiac symptom, rather than by the celiac itself. for example, my youngest celiac daughter has complained for quite some time (even before diagnosis) that her legs would feel numb. we never knew why. i have learned that constipation can cause the legs to get an uncomfortable sensation like a nerve is pinched---or some people can actually get numbness from it. now, the celiac is not causing the leg sensation, but it might be causing the constipation or bloating that leads to the uncomfortable legs. without knowing the whole picture, someone might say that celiac can't cause you to feel like a nerve is pinched in your legs, when actually it IS causing it, just indirectly. this is just an example, but i think it could be a possibility and would explain some symptoms that docs claim cannot be celiac related.

[2kids4me]

I can positively say my daughter had migraines linked to celiac. Once she was diagnosed they went away - totally.

She would stagger down the hall, grabbing her head and crying, go to her room and ask that the lights be turned off - but they already were off!

The ped GI doc said that if the headches did not go away once gluten free for a while, we should see a neurologist. But that was not needed becasue she has been headache free.

I'll see if I can find the link to an article that discusses the neurologic symptoms associated with celiac.

Oh, and she also had neck pain, back pain and hip pain. HAD being the key word here, they went away too

EDIT - added sites You can also google: celiac and migraines - lots comes up

Open Original Shared Link

Migraines linked to celiac disease

Open Original Shared Link

Conclusions

Our results suggest that a significant proportion of patients with migraine may have celiac disease, and that a gluten free diet may lead to a improvement in the migraine in these patients.

[hillyb6]

I can positively say my daughter had migraines linked to celiac. Once she was diagnosed they went away - totally.

She would stagger down the hall, grabbing her head and crying, go to her room and ask that the lights be turned off - but they already were off!

The ped GI doc said that if the headches did not go away once gluten free for a while, we should see a neurologist. But that was not needed becasue she has been headache free.

I'll see if I can find the link to an article that discusses the neurologic symptoms associated with celiac.

Oh, and she also had neck pain, back pain and hip pain. HAD being the key word here, they went away too

EDIT - added sites You can also google: celiac and migraines - lots comes up

Open Original Shared Link

Migraines linked to celiac disease

Open Original Shared Link

Conclusions

Our results suggest that a significant proportion of patients with migraine may have celiac disease, and that a gluten free diet may lead to a improvement in the migraine in these patients.

thank you all soo much we are still waiting for her results they had to send them to virgina i am not sure why they were sent there but they expect to have resuls on monday i am disappointed to hear that the blood work is so unclear i was hoping for a cut and dry answer , she does have a gi appointment on the 31st she is currently suffering from a very bad case of the flu much worse than the other kids in the house

i think i read somewhere that celiac people have a lowered immune system so it simply doesnt have the strength to fight illness as well i dont know if this is true but i9t sure seems it is for her

i can wait to start her on a gluten free diet as soon as i can get out from under our ice and snow and get out of my driveway on monday i am driving to the nearest whole foods and stocking up on foods for her to try i cant watch her suffer every day, she has gotten to the point she dosen really want to eat cause she get sick she has lost 3 lbs in a week sigh good thing she was at a good healthy weight before so she can lose it and not be under weight and i pray it helps with all her other issues

has anyone noticed their kids be extremely clumsy she falls soo often lately its scary and she wasnt this clumsy when she was little so for her to fall going up and down our steps or jus walking in a room is sort of distrubing or it could be some werid growth spurt who knows

[2kids4me]

Yes to the clumsy part especially for Kathryn. My personal opinion is that they are sick tired, not sleeping well and any person who is tired is more clumsy.

My daughter is always more sick than anyone else if she gets a "bug"... in our case it has been that way since she had Kawasaki followed by celiac. if the immune system is being "taxed" by another problem it cant deal with additional stress.

It cant hurt to go gluten free and you can judge by response to diet.

There are so many helpful people on this board who can provide you with insight and practical help. Give her foods rich in antioxidants and unrefined food for now - stick close to natural as possible. Veges and fruit, grains - like brown rice, quinoa....you may even want to limit or avoid dairy...try leafy green veges, steamed veges, broiled chicken and/or fish...

Hang in there, I remember vividly what it was like to watch Kathryn stagger down the hall , so pale - very alarming