Roll Call - November 2006

[aklap]

As usual, time keeps moving like a freight train - or should I say a high speed bullet train!

Last stop: Halloween
All aboard!!
Next stop: Thanksgiving

Which will be here all too soon.

:D

Tomorrow is our 15th wedding anniversary...or is it 150? heheheee You know you've been married awhile when you opt out of anniversary presents for new carpet and new furniture LOL!! Carpet is coming on the 14th & 15th, which means I'll be painting the 10th thru the 13th ;) Thanks for that anniversary present Peg!! :) Not only have we been married 15 years - our furniture is 15 years old too. I'm having a hard time letting go of my LazyBoy, even though it's held together with chunk of 2x4 and a couple of deck screws. It just got broken in ;) hehehehee

We've been doing pretty well. My feet have settled down a bit. Still have the remnants of a cold.

So...how 'bout the rest of y'all? Let's here from ya!

I see the photo setting has not been changed :( I wish they'd display in the post like the old days...

[lmb3]

Hi everyone! Thanks to Al for keeping us on the ball. October was a good month for us, Michael got his dx of Neurological Celiac Disease, Ellie is doing well on the GF diet and completely off the laxative (that the doc wanted her to stay on for another 9 months!!), and Kara finally has her blood pressure under control. It is still elevated, but not high. Now if I can just get her to go GF too.

We will spend November looking at catholic high schools for Kara (I can't believe I have a 13 year old!). Kara will also be getting braces the Monday before Thanksgiving. I hope that doesn't seem too mean to do that right before a feast, but it was the only time we could get in.

As things quiet down medically in our house, the holiday schedule kicks in. We have half of our xmas shopping done :D and are planning a GF Thanksgiving for 10 people with one exception. My DH asks for a gluten apple pie only once a year - at Thanksgiving. With the support we get from him, he deserves it!

I am in a holiday mood already. Despite my DH's rule of no xmas music before Thanksgiving, I am playing it already (when he's not around that is). :p

Congrats Al on the anniversary! We have our 15 year coming up soon and we just purchased new furniture too! That's funny. Carpet is next on my list. That will be our 15 year gift! Romantic isn't it?!?

[jcc]

Hi Al!

Congratulations to you and Peg on 15 years of marriage!

My son just got engaged about a week ago, with a date set for June 16, 2007. As it turns out, they got engaged the same day that my own parents did (Oct 23, my mom's birthday). They want to get married before she starts medical school, so were looking at June and had honed in on June 16 because her parents and grandparents were both married on June 17...so she wanted that weekend. This BEFORE she knew that my mom and dad were married on June 16, and will be celebrating their 55th wedding anniversary at my son's wedding :D. So, lets hope this is all a good sign:D. My future DIL is going to have her bridesmaids dresses and wedding dress designed by her cousin, who just graduated in Fashion Design from UW-Madison. She was talking about wanting Chantilly lace, when my mom piped up and said her dress had been designed and made entirely from Chantilly lace.... so, my DIL might be using the same lace for her dress..but that is still in the works. Anyway... it has been fun!

And of course... just a little over two weeks until Benjamin James comes home... our new Wheaten Terrier pup. And how ironic is it that I found out the Wheaten Terriers are predisposed to gluten sensitivity :eek:. He should be safe in our home :).

That's all for me!

Cara

P.S. For our 25th wedding anniversay this past August, there were no gifts (I still OWE on my carpet...lol...one of my rare no interest till May 2007 purchases).... and we celebrated by going camping...lol. The important thing is the love :D. At least that is how we justify it...lol.

[Zonulin]

It's 27 degrees outside today - yay! I thought those 85 degree days would NEVER go away. ;) Congrats to you and Peg, Al!! Love the fall photo of the maple tree leaves - sigh. I'm still President of MADD (Mothers Against Demented Doctors), still learning. So glad Braintalk with all its helpful information and links is back UP! And that people are finding it again :D GREAT!

Karen

[RathyKay]

I'm copying my update from Child Neuro. I did want to comment on your LazyBoy Al.... are you sure there's no ducttape?

Well... we had our DAN! doctor appointment, but the month has been a blur and I can't remember if that was actually at the beginning of October or the end of September? Anyway, blood, urine, stool, and hair samples have all been sent off for testing. We go back in mid-November to find out all the results and decide on our next steps.

The big event of the month was the failure of the washer to quit filling with water. As a result, the bedrooms and hallway have been emptied, carpet and padding removed, vinyl tiles (or whatever they were made of) removed, along with about 2 feet of wallboard along all the walls in the affected area. The area has been treated for asbestos and we are waiting to find out today if they got it all out. Then we have the joys of fixing it all again. Thankfully, we have insurance, but remodeling is not something I'm remotely interested in. And, we're all getting sick of living in a hotel while this gets taken care of.

Tom's big triennial review is coming up at the end of the month. I'm a little excited and scared, wondering what they'll say about him. Now's the time to find out how far my perception of him is from reality.

He had two strange "episodes" at school yesterday, that made the teachers think "seizure." But, he seemed fine afterwards, and if I didn't see it, it doesn't count, right? Anyway, there was no post-ictal type activity, he was fine trick-or-treating, and he stayed up to his normal bedtime, so maybe he was just a little off at school? I'm ignoring it for now.

The kids had a wonderful time trick-or-treating, even though we can't eat most of the candy. I remember as a kid when chocolate candy was the rare, wonderful treat. Now everyone passes it out. Most chocolate kid's candy today has dairy in it. 95% of what they got last night was chocolate. Very disappointing. I was hoping for more Skittles / Star Bursts / DumDum lollipops. Fortunately, I did have some candy to give them at home (hotel, whatever) in exchange for the "poison."

Guess that's it from my end. I'm very scatterbrained these days from all the house mess.

[annelb]

Happpy to "see" all of you. Congrats to Al, Lisa and Cara - nice to hear good news. Karen, glad that you are back posting and still head of MADD. Boy, do I have some stories I could tell you. Kathy, hope you find more answers.

I am doing great. Anxiously waiting for next week - the International Celaic Symposium. :D I am now GF, CF, soy free, yeast reduced, egg free. I really have not noticed much of a difference. I will probably not be able to be so strict at the convention. That may tell me something.

As a child I had Irish Setters. This breed almost disappeared because of CD. My poor dogs, we never knew that wheat was probably causing all their health problems. I wonder how many other dog breeds are prone to CD? Cara, your pup is lucky to get a family who understands.
Anne

[pakisa100]

Garsh!!! I can't believe how this year has gone past so quickly!

Congratulations to Al and Peg!! New carpet is an awesome gift... one that you can enjoy everyday!

I came back to say that I'm very sorry to hear about your gout issues Rachel. I've heard refined sugar is a big no-no but I'm sure you probably aren't eating that anyway. Wish I had something more constructive to offer on that front.

Congratulations to Cara! *balloons* How wonderful and exciting!! P and I ran away to get married (we ran 3 hours away )... Anyway, our witnesses were the couple that owned the "Inn" we stayed at ("The Benjamin Inn", on Christmas Eve) and they were celebrating their 40th wedding anniversary.

We did consider ourselves lucky and have had a wonderful marriage. It will be 10 years for us this Christmas Eve.

On a negative note: I glutened everyone yesterday. I found some gf/cf soy cheese in the grocery store and didn't realize until later that it has 'food starch' in it.

What made me realize this? I know everyone is wondering...

Well, in our usually non-gassy family (since being gf), a toot is a pretty rare and yes... funny... and quite a big deal.

So yesterday, dd (our 'non-reactor'), announced that she had tooted FIVE time since lunch. Subsequently, and on into the late evening, she would regale us with toots and allow us the pleasure of knowing exactly,the current number of 'toots' achieved. Every time she did another, the number she counted would be louder and followed by even more hysterical laughter. Last count before laughing herself to sleep was 22!! (between 2 and 9 pm)

This is not the way to get 6 and 8-year old children to stay away from gluten.

Other than that, I too, picked up some odd cold. Although I'm kind of wondering if it's really the 'oregano tea' experiment that I did, going awry. I didn't supp. my probiotics and I think that was a pretty big mistake.

Ooops, I have subsequently found out that I did not gluten the family. The not-cheese package does say 'gluten free' right on it. I had to go and look again because I've not had any behaviour problems with the children (esp. ds who goes quite obviously freakazoid)... and that's our number one indicator of a glutening. I was quite puzzled about this... and actually quite worried because I think it would be hard to keep them gf if they didn't have any negative symptoms that came with it.

So, I'm thinking it's the soy that caused all that gas. We don't generally eat beans in our house.[/quote]

The baby turns a year at the end of this month. This last month, he has taken his first steps and is almost continuously clapping, waving, popping kisses and dancing (bops up and down whilst holding the furniture).

[Zonulin]

Hey Kim -

Love the mental image of your beautiful dancing, kissing baby boy! Not to mention the 22 toot story...;) (not to be confused with the 21 gun salute). Glad to see you posting - thanks for the warning about the "gluten-free" product....:rolleyes:

Karen

[pakisa100]

(not to be confused with the 21 gun salute)

Bwaahahahahaaaaaa a a a... cough.... cough... choke (wiping the tears away) ;)

[jcc]

The 22 toot story.... :D

It was a very cute story, Kim. I can totally imagine the ongoing thrill...lol.

Cara

[darlindeb]

Hi everyone--sounds like lots of news going around in here. Congrats to everyone with good news and sorry about the glutening of the family. Stinks that it said gluten free and wasnt.

I'm still trying to get this intolerance thing all figured out. I don't know if I can ever get all this figured out--it seems 1 step forward, 4 back all the time.

Happy Thanksgiving to all of you.

[JudyLV]

I am here and am a bit worried about how quickly Nov. and Dec. usually fly by. I spoke with my older son's pediatrician about his low cholesterol (fasting 103) and he pretty much said "you have enough on you plate right now" (referring to the health of my other 2 kids). Needless to say I did not let that comment go. But then Dr. Fasano's nurse sent me an e-mail stating that he did not think the low cholesterol is related to malabsorption. I really need to get one of Karen's "Warning: I question authority" buttons.

Oh, and my husband went in for his "I turned 50 physical" and I told him to ask to be screened for Celiac. He came home and said the doc said they could not justify doing the blood work but would take some biopsies when he had his colonoscopy. I just looked at him and explained they would be looking in the wrong end. He followed up during his GI appointment and they said they would scope both ends.

--Judy

[OZZ]

I spoke with my older son's pediatrician about his low cholesterol (fasting 103)...But then Dr. Fasano's nurse sent me an e-mail stating that he did not think the low cholesterol is related to malabsorption.
--Judy
I thought I read somewhere that was a sign of possible CD??? Especially if the triglycerides were low?

[OZZ]

October 2006 is the month I finally felt better!!!

I was diagnosed GSCD (gold star Celiac Disease) June 2005...17 months ago. After 17 months of strict GF diet I finally feel better! It is amazing like someone turned on the light! I am sure when I have my next set of blood work I will finally show a drop in my EMA and TtG's. I did not do anything different with my diet other than added more Vitamin D and took some prenatal vitamins once-in-awhile. And truthfully now I have been negligent in taking any vitamins since I feel so much more normal. Oh and I did quit exercising entirely for quite a few months because every time I did exercise it seemed to set me back or cause an injury. I kept trying to go to "Curves" with my daughter but would end up pulling ligaments or just plain relapsing even though I didn't push myself or even do 2 rounds.

In September I started back to work and feel energetic even at the end of the day. I do notice some MG type symtoms if I do too much but nothing like last year or even a few months ago. My stiffness in my right leg seems to be loosening up and letting me walk up hills and inclines without so much limping. I do notice a lot of weakness still in chest muscles and legs and bad balance on right side but do notice a little change in raising myself on right ankle. I am remembering things which is so...cool! At one point I was confusing my own SS# all the time and would actually have to look it up...same with my cell phone number. When someone posted the article on dementia and cognitive problems, it was like they were discussing me. I always told my neuro that I felt like someone was squeezing my brain and would get waves of warm feelings (in my brain) when this happened but it went mostly ignored. I told him how I would suddenly not know where I was going while driving and this also was said to be normal. But the worst was when I was at a school function and they were introducing a person and everyone clapped except for me....I was waving....:eek: LOL....funny now but not at the moment when I realized this was totally inappropriate and had no idea why I was doing this. At that moment, I new I was on a downward spiral and if I didn't figure out what was wrong I was going to die or become an invalid. Thank heavens there was braintalk and all the wonderful people who gave me knowledge and strength to fight back!

My family:
DH is relapsing some with stomach and fatigue problems. He keeps accidentally glutening himself...eating what he thought was a taco chip but was a pita chip caused major nausea for a couple of days. I remind him that I felt worse before I felt better so he is looking toward an end to this in a few months. In Chicago he was glutened from eating out.
DS is doing fine on diet and tends not to eat out as he is 25 and doesn't want to deal with explaining his issues in front of people.
DD1 older daughter has not finished testing but plans to. No more retina bleeds but is having a hard time with night vision.
DD2 youngest is relapsing right now. She is a senior and having some anemia issues again so we go to the Docs on Monday. She is on a prenatal vitamin 2x a day. I did notice she quit taking her B's and D's so I am wondering if this is her problem. She didn't start the diet until March so I also remind her that it took me 16 months before I really felt better. She is also having bone pain which concerns me. She never had a density test so I may bring that up on Monday. We also had her tested and got an IEP for her from the school. She showed and strong decrease in her long and short term memory in the last couple of years. We did this because although she has a high average IQ she was having a very hard time with tests. This will help her when she gets to college.

Thanks again to all the great people here who continue to post and support all of us!

[Razzle0]

November already - amazing how fast this year has gone! Work has DH and I very busy lately. And no further info on why I can't eat without pain yet, although many tests have ruled out some nasty stuff I'm glad got ruled out. They did find Lupus Anticoagulant and a high ANA titer (higher than last year), but I don't have enough symptoms in the right places to qualify as Lupus so they've called it an Undifferentiated Connective Tissue Disorder. So I'm eating anyway and gritting my teeth through the waves of pain - too tired of not having something solid to chew on (after ~10 weeks liquids only). One of my MD's thinks it could be Whipple's Disease (bacterial infection), another thinks possible fungal infection - cultures are pending (will take another 6-8 weeks to receive any results). Hopefully all these tests will be worth it and they'll be able to finally figure out what's going on...

Glad to be a part of this board, I learn tons just by lurking here. Having login problems (took 3 tries today, for example), so I don't post as often as I would like to.

-Razzle
Gluten Sensitivity; DQ2; GF since 7/05
Sulfite Sensitivity
UCTD
Small Bowel partial obstruction (narrowed in jejunum & ileum = pain after eating; dx pending)
Allergies
etc...
DH has Eosinophilic Gastroenteritis & too many Allergies

[Electra375]

HI
I'm here! I'm so glad these forums are back.
It's been bitter cold, I'm 27 wks pregnant and got a stomache virus, lower intestinal and still getting over it since Thursday PM, it's Sunday now. My dd has it, my ds1 has it and I'm just banking ds2 has it as he has been asleep all afternoon. My dh shows signs as well, but "he never gets sick" and he doesn't.
It was probably a year ago I found this board. It was Sept a year ago that my ds2 went GF. A lot has happened in a year, I thought we'd all be GF by December of this year -- nope, but I think we are moving that direction as a family.
I wish I had the engery to devote more time to baking, if I did, I think we might be GF as a family.

[Hanna]

I am writing this as you all are my virtual friends. After radiation, I ran to Los Angeles from Paris and spent 4 days with my father before he past away. His skin was beautiful as he had been on a gluten free feeding tube for several months. The why's as to his demise, we shall never know though I will answer any PMs.

I saw after a week in the States that genericmedicine is poisining those who are gluten intolerant. Can we mention brand names as well on BT?????? I was glutened at least 3 times in a 9 day period. Best to stop consuming. The partial seizures started.

Airlines have little respect as to gluten free diets. I did my ordering in America only to find nothing was on the plane.

My father is at rest, I am relieved that he is at peace. Hanna

[Zonulin]

Oh Hanna - I'm so sorry to hear about your father. How terrible. What a terrible time for you, and to have insult added to injury regarding getting "glutened" while travelling... So so sorry. As for the brand names - name away!! We'd all appreciate the heads up on this stuff!

((((hugs)))) to you, Hanna.

Karen

[annelb]

Dear Hanna, I am so sorry to hear about your father. I am glad that you were able to spend the 4 days with him. How is your mother doing? Are you still in the States?

Yes, you can name names. You may help someone else by doing so.

More ((((((hugs)))))) for you,
Anne

[Hanna]

I am back in France. The brand name is Maalox and Kirkland. UGH...........

[lmb3]

Hannah

Sorry to hear about your father. I am glad that you were able to spend some time with him.

Take care of yourself!

[RathyKay]

Hanna, I'm so sorry to hear about your father. And then to get glutened on top of it all. We were never big travelers, but after adding GF to our diet, I really dread going anywhere.

[jcc]

Hanna,

I'm so sorry to hear of the loss of your father. My prayers are with you.

Cara