Finally Some Progress!

[Guest GrimTribe]

So, my girlfriend, Tracy & I have, for three years, been trying to figure out why my now-5 yr old son Steele has these awful cases of constipation.

The first time we realized he had a serious problems, it got completely out of hand. He was only 2. He spent several days lethargic & not eating much. Whatever he did eat almost immediately came back up. His tummy was so distended he had clothes that were tagged too big for him that didn't fit.

So we decided to try to cheer him up. We went out to eat with his 3 sibs.

While waiting for our food to arrive, Steele vomited dark green fluid. It was stomach bile.

Tracy & I took him to the local children's hospital, Arnold Palmer in Orlando, FL.

After digitally (I mean a gloved finger or two...maybe three) examining my screaming and weakened baby boy the doctor admitted him. He scheduled a biopsy & kept him on enemas & stool softeners.

We were there for 4 days, he and I. When we went home, I called back to the hospital every day to get the results of his biopsy. I had to go back to work. With Tracy as House-Mom, I got in one night and she sat me down to tell me the results.

You see, they had tentatively diagnosed his issue as Hirschsprung's Disease. I had a friend at the time who was born with it & had the surgery back in the early 70s to correct it. He says he is told by his parents that another child in the same nursery had the same condition & surgery and died.

I freaked.

Then Friend goes, that was 30 years ago. Nobody dies from it anymore!

OK, so we waited for the biopsy results and.....

It was *inconclusive*. Apparently, they didn't get a good sampling & they couldn't tell just what was going on.

We was PISSED.

Pardon my grammar, but there really is no other way to convey our fury.

I basically told that Doctor with his huge man hands to pucker up to my hinder-parts.

Tracy & I embarked upon our own researches. We located Doctors, explained his symptoms, and heard the same thing over & over: stool softener, he'll grow out of it, enemas.

So we worked to keep his stool soft. He eats a good fiber rich diet, low in excess sugars, fats, etc. Tracy obsessively plans our meals around good nutrition. She used to work in a group home & she' s been so trained to do this she literally does it in her sleep. Our diet is so balanced I lost weight steadily until I hit 30 & got the Weight Packer Depo Provera Shot. Suffice it to say, I will never take it again.

Despite the good diet and constant monitoring of his bowels, Steele kept getting these rocks the size of an orange. The only way to clear it so he could pass was manually. We both hated it. He hated it.

None of us is pleased with the situation.

But through it all, Steele is a happy, loving little guy. Smart as ten whips and cute enough to model.

This year, I got all of my kids off public assistance and onto my insurance through my job at the local cable company. With what I make there, I can finally afford to give my kids

[wowzer]

Your story reminds me a lot of my son. He is now 20 years old. I never got a diagnosis other than improper toilet training. He is adopted with an Irish background. I hope your find the answer to your son's problem soon. Good Luck

[Generic]

Welcome to the board!

[ravenwoodglass]

Welcome, you have come to a great place for knowledge and support. I am glad you know to look into this now. My whole family has celiac or gluten intolerance, the precursor (IMHO). My childhood was much like your sons, the enema bag was never put away at our house. But there was nothing wrong with me. Yea right.

The one thing I can not stress enough is that after they do the blood work and any endo tests they demand for "proof" of whether or not he is celiac please make sure to do the diet, strictly for a bit. Get very knowledgeable about second hand gluten and also about it's presence in non food items. I pray you don't just go by testing, it could delay his diagnosis by many, many painful years. Dietary response is the true test.

It took 15 years after the daily D set in for me to be diagnosed, a lot of damage was done in those years to myself and my children by not just the disease but also by the drugs they give to combat the symptoms. All because I don't show up on blood work. Even with all the problems my children had growing up it was never even looked for. They were tested, and came out positive, the year after I was finally diagnosed correctly. By then it was too late for my son to regain the growth that was lost due to celiac.

[Guest GrimTribe]

Thank you for the good advice.

And I have learned to take what the Doctors think they should tell me & go back over it. It took nearly 15 years to diagnose my Carpal Tunnel Syndrome. I just had the last surgery on the 21st.

The first neuro-doc I went to for the test swore I didn't have it.

So, why, I wondered, do my hands hurt? Why are my fingers numb? I've reached up and taken my file out of a Doctor's hands because she was side talking me. Let's say, I understand the frequency of false returns on tests.

I admit I've made a nuisance of myself on more than one occasion & I truly believe they would too if it was their child/spouse/sibling.

My Partner & I have spent the last 2 days having moments of "Holy crap we have to...He can't eat...We can't put that there..."

Steele's chore was feeding the animals. We have 5 cats & 2 dogs. Except, the food is made with a wheat base. We went through all the chores the kids have and honestly the only thing he could do without getting Glutened is the windows, but he's only 5! I taught his older sibs to do laundry that young but we have a 2yr old who spills her food all over herself, the dishrags, the dust from the flour with our frequent baking....

These miniature epiphanies are wearing me out.

My eldest, Ben, spent about 3 hours cleaning the kitchen last night once we told the elders about our theory. Until he was 11, he was terribly allergic to bananas. When his test came back negative, the first thing gave him was a huge fully ripe banana.

He remembers a time when anyone who had touched a banana could put him in bed for days, so he went to work with a vengeance to help us protect his baby brother.

The ultrasound today didn't give us much more info than we already have. But the technician made comments, in fact several times, about the amount of air in Steele's abdominal cavity.

I'm waiting for a better time to call his Dr for an appointment next week to follow up. I still haven't heard from the Ped GI but I'll be working on that today too.

Upward & onward, of course. There's nothing I won't do to keep my BabyBoy safe, even if I have to deny him hamburgers & ice cream. It's small thing to me, but horribly unfair when you're 5!

Regard

~Raven

[ravenwoodglass]

  GrimTribe said:

Thank you for the good advice.

And I have learned to take what the Doctors think they should tell me & go back over it. It took nearly 15 years to diagnose my Carpal Tunnel Syndrome. I just had the last surgery on the 21st.

The first neuro-doc I went to for the test swore I didn't have it.

So, why, I wondered, do my hands hurt? Why are my fingers numb? I've reached up and taken my file out of a Doctor's hands because she was side talking me. Let's say, I understand the frequency of false returns on tests.

]

This really jumped out at me. Are you still having any of this type symptom, has it returned or have you had other problems with pins and needles sensations in other areas of your body? Do you yourself have any even seemingly unrelated health problems? The reason I ask is for years we thought I had carpal tunnel, it turned out to be related to my bodies not being able to manufacture B12 due to the undiagnosed celiac. Don't forget that gluten intolerance is genetic and if there is a problem with gluten for one family member there is a high likelihood of it being a problem for others. Often symptoms are atypical and so it is never thought of.

It sounds like you are trying to degluten your home for your DS. Might I suggest that the whole family try the diet for awile?

[Guest GrimTribe]

  ravenwoodglass said:

This really jumped out at me. Are you still having any of this type symptom, has it returned or have you had other problems with pins and needles sensations in other areas of your body? Do you yourself have any even seemingly unrelated health problems? The reason I ask is for years we thought I had carpal tunnel, it turned out to be related to my bodies not being able to manufacture B12 due to the undiagnosed celiac. Don't forget that gluten intolerance is genetic and if there is a problem with gluten for one family member there is a high likelihood of it being a problem for others. Often symptoms are atypical and so it is never thought of.

It sounds like you are trying to degluten your home for your DS. Might I suggest that the whole family try the diet for awile?

My sister and I have had an ongoing convo about this for the past 2 days. She has been diagnosed with lupus FINALLY. She's had issues with her joints since our early teens,and my knees are just about a lost cause. The osteo-doc that did my CPS surgery is already eyeballing my knees.

We've been going over all the mystery illnesses we had growing up, and as adults and we keep finding correlations when we compare that to the info I'm getting on celiac disease.

She lives in LA right now, but we grew up in TX, land of a million allergies. I never had any allergy complaints, but I was the only one of 5 our mother breastfed.

Nikki and me were up until the wee hours last night going "Hey remember when I had..."

Like I said, these mini-epiphanies are wearing me out.

I do understand that she & I both should get tested. I want to test all of my kids. Between us we're collecting our family medical history to try & to trace it back. We know our father had chronic stomach issues & our mother had a benign tumor either on, in or around her stomach or intestines when I was about 10.

So we do have a work in progress as far as checking every possible avenue we can think of.

Nikki spent years being told her chronic pain was in her head or it was bursitis because she was too young for arthritis or it was something else-here take this pill, talk to that doctor specialist, let me run this test, you need more exercise, you need more rest, you're too heavy, you're loosing weight too fast....

As for me, I've had an angiogram & a biopsy on my cervix in the past 2 years. I also had a blood transfusion in 2004 due to dangerously low hemoglobin/hematacrit levels in my blood. I've spent the time since terrified of being over-tired but unable to sleep. that's how I felt for three whole days before an industrial young PA caught my blood about to throw me into a coma. I also deal with chronic pain & fatigue on a daily basis.

Which is why I approach doctors & their batteries of tests with research of my own. I've learned the lingo, and actually get a lot of wide eyes and raised eyeborws when the White Coats find out I can speak their language!

I like my osteo-doc, but he's convinced my knee troubles are due to my weight, which was OK until I hit 30. With the info I'm coming across, I have wondered if it runs deeper than an X-ray can see.

I know I sound more than a little jaundiced about doctors. Everyone I know considers me a patient person. I'm not nearly as nice as I used to be, so soft spoken & believing everything I was told by doctors. The contractions & such became too much to bear.

I hate feeling patronized. That Pat-On-The-Head, Now-Run-Along, I'm-The-Doctor-Here attitude chaps my hide.

I'm not gonna take it. My kids' health & my own are too important.

Keeping my fingers crossed (when they aren't cramping or numb!).

~Raven

[ravenwoodglass]

You and your sister and I sound like we have similar histories. I was told everything was in my head for years as they fed me more and more toxic meds that barely controlled symptoms. I was tested over and over for MS, Lupus, Rheumatoid Arthrits, you name they have stuck a needle in it, Xrayed and MRI'd. By the time I was diagnosed I had lost all hope. Within a few months I had my life back to the largest degree that I had in years. Just to be able to get out of bed with it being less than a half hour production was great. Not to mention how great it feels to be able to hold a paint brush or type freely for as long as I want.

I really hope, although I would not wish celiac on anyone, that you have found the answer to heal your family. If it is the answer it is a big change for most of us to go through but it is so worth it.