Hi, New And As Yet Undiagnosed

[Quasior]

HI everyone,

Sorry LONG!

I'm an Aussie mother of 5, a homeschooler and having problems of the intestine variety... oh, not just me either, some of my children and my mother!

THe more I read about the symptoms and related illnesses of celiac disease, the more I'm convinced I have it.

Lets see...

Stomach cramping, bloating, extreme pain/discomfort

diarrhroea and have done on and off since I was 20, however it picked up after the birth of my first, and steadily gotten worse - was diagnosed with IBS and told there was nothing I could do about it

while I was living in another stqte I asked my doc to give me the prelimanary blood test to see if I had any of the markrs of celiac disease, it came back positive but was waiting so long for the biopsy I moved interstate.

after several years of trying to find another good doc who'd listen to me (because I'd had that initial diagnosis of IBS they stone walled me), and during that time my son started having symptoms, he's 3 1/2 now, but ended up being a intestinal parasite, but once confirmed it was gone he's still got diahrea, vomiting and tummy pains, under weight and small in stature, we'll that actually put a halt on my continuing diagnosis too as I got the bug too, All gone now (and I didn't have that bug for 14 years!).

I was getting really depressed and embarressed to leave home because I felt I'd have an accident just before Christmas, yes I've felt that way on many occasions. I told my doc I was going of dairy to see if that made any difference. It didn't. I then told him to give me those tests again, but this time it came back negative. ARGJ!! After several months of being off dairy I told him this isn't right I was going gluten-free (at this stage I was in too much pain some days to get out of bed except to rush to the toilet, and runs so bad ... anyway he finally agreed to give it a go... I''ve been gluten-free now for 6 weeks, the pain is gone! I am slowly getting more energy! I have very little diahrea.

These are some of the other things going wrong with my health while I wasn't gluten-free:

*Skin rash/ thickening across my fingers.

*aneamia

*thyroid disease (I had underactive and got very overweight)

*lethargy

*depression

*flatulence

*inside mouth swellings/sores

*joint problems and pain, aching

*calcium deficiency

*libido, what libido???

Well breifly talked to my doctore, going to see him about it properly tommorrow. He told me it seems like I do have a gluten problem if alot of my problems have disappeared. He will book me into the hospital for a biopsy.

I have really some misgivings about this. I don't want to go back to that pain! On one hand if I can be diagnosed it will make it easier on my son, won't it? I'd probably do it for that reason... He's going to see the paed the end of April about his arrested growth and weight gain, his tummy problems etc. It might help for a faster diagnosis for him if I was under investigation for celiac disease myself. God knows I don't want him to suffer anymore than he alsready is/has! Also my hubby, even given my huge improvements is very reluctant to agree he could have celiac disease. It would mean the whole family going gluten-free for a start (that will be expensive!) On one hand I would stay gluten-free and take my whole family off it if I could, but my hubby would need that diagnosis to really really believe its true. Such a dilemma. My son has terrible pain, aching joints (which hubby puts down to growth pains?), diarrhoea, slow growth, so pale he glows!, doesn't have the energy a toddler/preschooler should have, tearful/irritable.

And my mother is something else! Her sister has got Chrones disease now, after years of undiagnosed intestinal complaints. She has been diagnosed with IBS, refuses to believe it could be celiac disease, has insulant dependant diabetes, has always felt unwell, lethargic, has frequent other problems. If I were to be confirmed celiac disease I might be able to convince her she might have it too!

I hope you wonderful people can give me some advice. Has anyone else gone gluten-free only to have to go back on to gluten for diagnosis? Was it worth it??? Thanks for your time in advance.

[Crimson]

The only thing I can reply to here is the "growing pains". Mine started when I was about six. My mum took me to several doctors for that and the headaches. The pain, which would start in my hips and radiate down to my knees and further down to mid calf. It was a terrible burning pain....in the bones. I took more tylenol than what a child should. I would pace the floors at night rubbing some kind of terrible smelling icy hot stuff on my legs *I swear I went though a tube of that a month!* then I would pace more and sometimes I would even hit my legs because it distracted me from the pain. I would cry and get angry....

These "growing pains" lasted until I stopped eating wheat/gluten.

They came back with a vengeance *along with the headaches that doctors said were from stress* last month when I got my first glutening in 11 months.

That was all the proof I needed.

I can't see me getting a doctor's diagnosis. I'd have to go back to eating gluten. I'm not sure I can do that. I'm a bit bitter right now about all the signs and symptoms that pointed toward celiac/ gluten intolerance and that so many doctors didn't pick up on it.

I hope the best for your family. But if removing gluten makes you feel better, I don't see a problem with making that decision on your own, with out a doctor. Feel better!

[Quasior]

Hey thanks Crimson,

I agree but I don't really want to put him on the diet just yet. It is mostly because of my parner who doesn't really want to accept it.

On the other hand if he were to be diagnosed then he'd be OK with switching all of our children over. And the other part is I think if it is wrong, and

I doubt I am, considering I've now been formally diagnosed with celiac disease, that it is a huge thing for a little boy to go off

all of these foods (and in fact all of the children will be as a matter of fairness.) Oh, and he is going to see a pead

at the hospital end of April and if he's already gluten-free he'll throw out the test results and I won't be able to get all my

other kids screened.

The GP told me yesterday that they'll definately screen/biopsy him (something I am unsure about but my partner wants

to have happen) and if that comes up trumps do the same for all of the children since now I've been diagnosed.

I didn't have the biopsy, I was diagnosed by successful self treatment of the gluten-free diet and a positive blood test

in another state (the one here came back negative).

So, its kind of resolving itself. I think it helped for my partner to know that the doctor has now confirmed I have it,

and that he's convinced that Raven will prove to have it too, and who knows how many of the children have it

I am certain that my youngest son and both daughters have it, they've all been big until around 6 months then

dramatically got smaller. Geez, I wish I had of suspected all the way back then! I was wrongly diagnosed at

the time of my eldests birth to have IBS. What a big backward step to finding the truth that was!

Anyways, those 'growth pains' they've all had them, some get them worse than the others, Ravens got them worst

of all, and he's a sick little man. If it didn't screw up results and if I could get my hubby on the same wavelength

I'd most certainly make it a gluten-free house right now. He really doesn't want that to happen though... but as I said

with positive diagnosis he'll be on board, I just wish Raven didn't have to suffer in the meantime.

Cheeers, Quasior