Re: OT Blackberry Pickin'

[Guest guest]

No problem, , great idea for the Christmas gifts! I guess we will just wait for our patch to grow! We came to Lordstown from Columbiana where on our little 3 acres we had about an acre of blackberry bushes helped by the people who built our house burning the insulation bags and catching our field on fire!

Wouldn't want to do that here, lots and lots of woods :-)

----- Original Message -----

From: rmaher1969@...

Sent: Saturday, July 29, 2006 9:31 PM

Subject: Re: [ ] OT Blackberry Pickin'

,

Sorry it took so long for me to respond to your question. I pick blackberries at my parents house in Fowler (not on the map). I picked a few quarts of Black Raspberries last month and I also get wild blueberries. I Make jellies and jams for Christmas gifts. Cheap, no crowded shopping malls, and everyone LOVES them! The best part, it's hot, it's humid, there are thorns, there is poison Ivy, and mosquitoes. All reasons that I get to go out for a few hours by myself. No one begs to come along and I can just BE.....sort of meditative. BTW, I went to a local park here in Warren looking for raspberries and what to my wondering eye did apppear? I found an awesome wild strawberry patch! Some city slickers jogged by with their headphones and iPods looking at me like I was a crazed homeless woman.

----- Original Message -----

From:

Sent: 7/29/2006 9:13:27 PM

Subject: Re: [ ] What is Celiac Disease (CD) and Should I Test For It?

Hi, Everyone,

I have an Autistic son with Celiac, and I wanted to jump in here with a few things for those who are thinking of having their child tested.

"When full blown CD is diagnosed, it can take more than a month on a gluten-free diet to see changes."

Gluten can actually stay in your system for 8 - 12 months. Our son tested positive for Celiac Disease last June (2005), and when he was retested by the specialist in August of that year, his numbers were down below the threshold of what would be considered positive for Celiac (that's one reason why the "specialist" said he didn't in fact have Celiac -- but, if you read the article, you remember that being on a gluten free diet will make it look like you are testing negative for Celiac, when you're really not). So, it may take up to a year to notice the full range of recovery (including behavior) from Celiac Disease.

"Patients with full-blown CD often have terrible symptoms of gastrointestinal distress, fatigue, failure to grow or gain weight. Therefore, these symptoms are not ignored and the diet is changed when the child is relatively young. But it is possible that far less severe forms of CD exist and are, in fact, quite common. If so, these could go undiagnosed for years. Undiagnosed, the toxic effects of the ingested gluten could prove extremely damaging and could cause what is likely to be permanent damage to the central nervous system."

Aside from behavioral issues, there are far worse things that can result from untreated Celiac Disease...the worst of all is Intestinal Lymphoma. Here's the interesting part...even if your child tests negative for Celiac but has many of the symptoms, it can actually be something called Non-Celiac Gluten Sensitivity. This was described by our sons' allergist as Celiac Disease in symptoms only -- the test results do not support the diagnosis. But, the ramifications of not removing gluten if your child has Non-Celiac Gluten Sensitivity are the same as untreated Celiac Disease. Oh, and there is absolutely no test for Non-Celiac Gluten Sensitivity, and most GI docs in this country don't believe it exists. Fun, huh?

"It has also been suggested that CD is an auto-immune disorder with gluten stimulating increased synthesis of some antibodies in CD patients."

This is no longer merely a suggestion -- CD is an autoimmune disorder -- this is according to our sons' allergist, and even the last quacky GI doc we did see in April. This is important for a few reasons: A) If people in your family, you yourself, or your child have any other kind of autoimmune disorder, you may be more susceptible to other autoimmune disorders; Autoimmune disorders are often genetic; C) Scientists don't really know what causes the body to attack itself and cause an autoimmune disorder.

"Though I cannot have the tests run (because he is been off gluten too long) I am convinced that he was likely showing signs of DH, which were unrecognized by the doctors who saw it."

Trust me -- I have been there, done that, rented the video, as it were -- docs in this country, in general, are NOT good at diagnosing Celiac Disease. This is because there really is no one definitive test that will beyond a shadow of a doubt tell you that you DON'T have Celiac. False negatives are the norm. Most docs in the US will rely on numbers on blood tests or the results of an endoscopy to diagnose it. But, you can have unclear results on a blood test and still have Celiac. You can have a normal endoscopy and still have Celiac. You can even have a negative HLA typing and still have Celiac! But I'll get to that in a minute. Europe is better (Australia, too) at diagnosing Celiac, because they take the symptoms into consideration along with the test results. You are the parent, and if you think your child has Celiac even though the tests say he or she doesn't, I suggest you go with your gut (no pun intended!). Remember, the consequences for untreated Celiac include cancer. Do what you think is right for your child.

"The blood test can rule out or suggest Celiac Disease. If CD is not ruled out it can only be confirmed via intestinal biopsy."

Remember that you can have a negative biopsy (endoscopy) and still have Celiac. It may just be that the damage is not severe enough to flatten the villi in your intestinal tract...yet. If you have a child and you do not want a procedure done on him or her to verify Celiac, you have that right of refusal. The procedure involves knocking the child out, so yes, anesthetic is involved. Most GI docs will tell you this procedure is the only way to confirm a Celiac diagnosis. I say, if it looks like a duck, walks like a duck and talks like a duck, well, it probably is a duck. Ask your GI doc what percentage of his or her patients have Celiac. If they say it's very rare -- less than 1% of their patients -- RUN out of their office! Well, okay, you don't have to run, but that is a clear sign that they underdiagnose it. The actual incidence of Celiac Disease according to the Celiac Disease Foundation is 1 out of every 133 people. Despite what the "specialist" we took our son to claimed, we knew our son had Celiac...his initial blood test was positive. We did not feel the need to knock out a 4-year-old, non-verbal child so she could make her next Mercedes payment. Sorry...she really made me mad! I could tell you some things she said that would undoubtedly anger a lot of you too...But we won't go there now...I'm breathing and going to my happy place.....

"Our practice is to offer a gluten-free diet to these patients unless the HLA genotype is not consistent with susceptibility to gluten intolerance (that is, other than HLA DQ2, DQ8, or DQ1). "

This is mostly true. Although, 96% of all Celiacs have positive HLA typing for one of these, there's still that 4%! My son might be in that 4%, as he tested negative for those 3 markers. But I have a child that, believe me, if he can defy the odds, he will. I hope that serves him well in the positive someday...like maybe he'll win the lottery! Also, if your child has Non-Celiac Gluten Sensitivity, they may not have this marker, but they should still be off gluten. As our sons' allergist said, "You can't ignore the symptoms, even if the numbers don't necessarily match."

There is new science, which is gaining yet more credibility since the new definition of Celiac Disease is an autoimmune disorder, that implicates other HLA markers that are typically not tested for in Celiac HLA typing. This HLA marker is HLA-B8. My son was not tested for this marker. I'd have him retested, but it's not easy to find a lab that will do this typing without a whole lot of complaining (Children's Hospital of Akron will do it with nary a whimper, however!), and it is expensive...but our insurance covered it. Anyway, this particular marker is also associated with several other autoimmune diseases. Interestingly enough, one of the main ones connected to it is Type 1 Diabetes...which, interestingly enough, is a common problem many children diagnosed with Celiac also encounter (not all, however). So, if your child has Celiac, or you suspect they do, also have the pediatrician check their blood glucose level at each visit. Ask them what to look for, and if ever in doubt, take your child in to get checked. It takes only a few minutes, can be done right in the office and requires only a finger-stick test. Usually, you only have to see the nurse for it -- unless you have concerns that you would like to discuss with the doctor.

Thanks for letting me add to this.

--Suzanne