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scstampin

Member Since 17 May 2012
Offline Last Active Sep 14 2012 08:15 AM
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Topics I've Started

Letter To Other Parents In Classroom?

30 August 2012 - 09:47 AM

My 3 year old daughter dx in May will be starting preschool next week. Her teacher has been really great, and she wants to send a letter home to all the other parents about Celiac disease. Parents will be very involved in the classroom, and help out during parties, field trips and everyday things. We want them to be aware as well of the precautions they need to take while working in the classroom as well.

Wondering if any of you have a sample letter or anything that you have given to the other parents of the kids in the class?

Thanks!

Starting Preschool...what Precautions Do We Need To Take?

09 August 2012 - 12:52 PM

My daughter was diagnosed in May, and will be starting preschool in September. She has a twin brother, who will be in the same class. He does not have celiac (as far as we know right now...blood test was neg, but we aren't convinced).

Anyway, I was very overwhelmed at first, but now feel like we have found a new normal at home. BUT adding preschool into the mix is starting to stress me out! She will be 4 in the fall, so this is her first year of preschool and she hasn't been in daycare, so she has pretty much been with me since being diagnosed. Since being diagnosed we have only had babysitters come to our house, and we went gluten free in the house, so we don't have to worry when she is with a babysitter. The thought of her being at preschool around gluten is making me super nervous!

We will be sending her own snacks, and she will have cupcakes in the freezer there for anytime they have treats.

What other precautions do we need to take????

Does she need her own playdough?

They have a sensory bucket that they have pasta in, and they do crafts with macaroni noodles. Does she need to stay away from all of that, or can she use it but make sure they make her wash her hands right after?

What do you do for school/preschool for your child.


Thanks!

Can You Help Me With My Gene Test Results?

20 June 2012 - 11:24 AM

My GI ordered the gene test for Celiac, and I requested a copy, but I have no idea how to read it, can anyone help?

DQ Alpha 1 01,05
DQ Beta 1 03,5:01

Then it says under Interpretation: see comments. But there are no comments. It just says gene pairs not present. My 3 yr old daughter was diagnosed with celiac through blood and biopsy. And I have a ton of symptoms... diarreah, severe upper abdominal stomach pains, nausea, low iron, bone and joint pain, hair loss, bloating, insomnia....and the list goes on. (I finally realized that this stuff is NOT normal, and I need to figure out what is causing it!)

So, do these test results mean I could not have Celiac disease?

Also, would that mean that my daughter got the genes for it from my husband and he should be blood tested as well even if he has no symptoms?

Thanks!

Dr. Kinney In Minnesota Anyone?

10 June 2012 - 09:56 PM

Hi, I am wondering if anyone has ever seen Dr. Kinney in Minnesota? He is who I am seeing, and I am wondering if he is very educated about celiac disease. I was having a biopsy done for other reasons, and I asked them to biopsy for Celiac as well. The nurse said fine, but that celiac disease wouldn't cause my abdominal pain I am having anyway.

They took 2 biopsies from my small intestine and they were negative.

Meanwhile, my 3 year old daughter was blood tested and biopsied, both of which were positive.

My symptoms include diarrhea, bloating, nausea (especially in the morning), severe upper abdominal pain, iron deficiency anemia, hair loss, extreme fatique, axiety/depression, joint pain, bone pain, tingling hands and feet, infertility, irregular periods, chest pain, racing heart, late puberty, GERD and Barrett's esophagus, bruising easily.

It seems with my symptoms, that they should at least look at the possibility that the damage was missed in the biopsy... right?

They don't seem to think that. They said the biopsies were negative, you don't have it.

Has anyone else seen this doc or been diagnosed by him?

Where To Go From Here?

02 June 2012 - 07:22 PM

I need some opinions on what to do in the situation I am in, and also wondering how common it is to get a false negative on a biopsy and blood test?

A little background info... I will try to keep it as brief as I can.

I had my gallbladder out last december, after 4 years of uncomfortable pain in my upper middle abdomen. After having my gallbladder out over the last 6 months I have still had pain in the same area, only now it is WAY worse! Severe abdominal pain that at times leaves me unable to even walk. After the 2nd ER visit in a couple of months due to this pain, I was referred to a GI doctor.

In the meantime, my 3 year old daughter, has been having severe constipation, along with other symptoms I now know are related to celiac disease, and she was also referred to a pediatric GI. They tested her thyroid, and did the blood test for celiac.

Before we got her results back from anything, I had an endoscopy and colonoscopy done upon my GI docs orders. We had talked nothing of celiac disease, but when I was in the prep room I asked if they would biopsy me for celiac. The nurse said celiac disease would NOT cause my abdominal pain (?), but they would do the biopsy. (nevermind that I have diarreah all the time, low iron, and other issues too).

My biopsy came back negative for celiac, and the endoscopy showed inflammation in my esophagus and stomach and bile pooling in my stomach, and I was diagnosed with GERD. The pathology report showed Barrett's esophagus.

I did ask how many biopsies they took in the small intestine, and I was told 2.

Shorty after that we got my 3 year olds blood test back, which was positive for celiac. We then had her endoscopy done, which also came back positive for celiac. Her symptoms are severe constipation and compacted stool, low iron since about 1 year of age, distended belly, short stature, colicky as a baby, and irritable as a toddler.

As soon as we got her biopsy result, I took my other 3 kids in to have the celiac panel done, as well as myself, even though I have had a negative biopsy.

I have not gotten the kids results back yet, but mine came back and are negative. After finding out my daughter does have it, I thought for sure my blood test would come back positive with all the symptoms I have, and I though that the biopsy was probably a false negative.

What would be the chance though that both would come out false negative?????

Here are some of my main symptoms...

diarrhea and constipation (I seem to go from one to the other, never in between)
low iron for years
infertility (in later years, no trouble with 1st 2 kids, but had a hard time getting pregnant trying for 3rd, was put on clomid, and got twins!)
dry skin
anxiety/depression
lots of stomach aches and nausea
upper abdominal pains
easily bruising (as of recently)
fatique
insomnia
just overall "yucky" feeling

So, as I said, I was surprised mine came back negative. Knowing now that my daughter has it, and with my symptoms, I really thought this was going to explain all of my issues!

I know I could just go gluten free and see if it helps, but I also feel like I would like to have a diagnosis to know for sure since it is gluten free for life, and I don't think I want to go off and then eventually go back on to get a diagnosis.

What would you do from here? Get another blood test in a few months, do the gene testing????

In case anyone is interested here were my blood test results:

IgA 4 (normal range 0-19)
IgG 2 (normal range 0-19)
tTG <2 (normal range 0-3)


Thanks for any input you can give me!