I Dont Know What To Think

[Abbott50]

O.K., a little over a week ago, my wife and I found out that our 6 year old daughter tested positive for a gluten intolerance and probably Celiac and that this may be the cause for her shorter stature. We chose to not have a biopsy and put her on a gluten free diet... so time will tell I guess right now. We are a little confused about the voracity of the tests, but it seemed best to make the change. To support my daughter, I told her dad would do the diet with her. Now more confusion..... Now I (dad) have noticed some things. The loud bubbly stomach that has been a family joke has stopped. I noticed that I am sleeping better and it seems like a rash under my arms and on my side torso that has been unexplained by doctors for ten years is starting to get better. I ate a gluten free pizza... my daughters favorite meal... and I didnt get an upset stomach. I had always assumed that eating pizza just naturally gave you indigestion..... Is it possible that I am gluten intolerant as well? I dont know how to react or if I should be tested or what is next. I am told I must be eating gluten to be tested, but have already been on the gluten free diet.... I have always been a pretty healthy eater, but I dont know if the changes are gluten related or just another step up in the diet??? Any advice?

[Ursa Major]

Well, with celiac disease the best and most reliable test is trying the gluten-free diet. Since celiac disease is genetic, your daughter got it through either you or your wife. It appears to be you.

There is no way the improvements in your health are coincidental. Horrible stomach noises, sleep problems and rashes are three common symptoms of celiac disease.

I think through being a good and compassionate dad, you have figured out how to fix your own health problems.

Since it is obvious that gluten is your problem, are you willing to make yourself sick again (and probably be much worse now that your body isn't used to gluten any more) and eat gluten for about three months just for testing, or will you just continue on the road of good health and keep up the gluten-free diet?

If you are in doubt, just go ahead and eat a doughnut or regular pizza and see what the reaction will be. I bet it won't be pretty.

You can still be tested through Open Original Shared Link, as their testing is still reliable for up to a year after going gluten-free. You won't have to start eating gluten again for their tests.

[Worriedtodeath]

Welcome to the club!! I think a lot of people begin the diet in support of their kid and lo and behold! Health problems begin to clear up. We did this for our toddler and my oldest and myself discovered that we have a hard time with gluten and may even be Celiac. SInce we have to do the diet and the response has been so drastic, we intend to keep on it and not worry about the testing.

Thanks

Stacie

[Nancym]

Ah! You are nice Daddy to support your daughter like that!

Dad, your daughter inherited her genetics from you and Mom. More than likely one or both of you also are celiacs or at least gluten intolerant. Congratulations! This was an unexpected present. Now you can avoid a lot of potentially terrible things that happen to undiagnosed celiacs and you can enjoy just feeling better too!

Oh that rash... you should get it biopsied. That might be your celiac diagnosis right there.

[JNBunnie1]

Ah! You are nice Daddy to support your daughter like that!

Dad, your daughter inherited her genetics from you and Mom. More than likely one or both of you also are celiacs or at least gluten intolerant. Congratulations! This was an unexpected present. Now you can avoid a lot of potentially terrible things that happen to undiagnosed celiacs and you can enjoy just feeling better too!

Oh that rash... you should get it biopsied. That might be your celiac diagnosis right there.

To be specific, there is a rash called Dermatitis Herpetiformis that when diagnsoed, is a confirmed diagnosis of Celiac disease. You only get the rash if you have Celiac. Ask your doctor or a dermatologist to biopsy skin NEAR an outbreak of the rash. Or, since you're getting better, you can just stay gluten free!

[dandelionmom]

I didn't know I had Celiac Disease until I went gluten-free with my daughter. Suddenly a lifetime of tummy and health issues have an explanation.

[lovegrov]

Sounds like you might have it. All first degree relatives should be tested.

richard

[AliB]

If you have only been on the diet for a week then the antibodies should still be present in your system. I would suggest you get your blood taken asap for testing for Celiac.

You are supposed to be still eating gluten for a biopsy, but to be quite honest that is pretty invasive and can still present a negative result even if you were actually Celiac.

As others have said, the best test of all is to avoid the gluten per se. EVERYONE is gluten intolerant to a greater or lesser degree. The grains have been molecularly 'mucked about' with over the last few centuries and have gone from being a simple protein to a very complex one that our bodies cannot cope with very well, and can even damage the gut causing malabsorption issues.

Celiac is an end result of gluten intolerance and whether you are one or the other, the solution is the same. The more people wake up to the damage gluten is doing, the more gluten-free choice there will be and the easier it will become. It will not remove other factors like dairy or other intolerances, but at least people will have more choice.

Just be aware though that any GI or Celiac condition will have stopped the body absorbing vital nutrients which will account for your daughter's growth restriction and some of your issues so it would be prudent to take some supplemental broad spectrum nutrient support, at least for a while until the body has had a chance to heal and start working more efficiently. You may be able to work with a nutritionist on that one.

Don't be tempted to replace gluten foods with high-carb, high sugar foods as that would be counter-productive and may result in gut bacterial overgrowth like Candida which would set up problems in its own right. Keep your diet fairly simple with plenty of fresh, organic if possible as the less toxins and chemical you ingest the better, vegetables and fruit, good quality protein in the form of fish, fowl and meat, eggs if you can tolerate them, some grains in the form of rice, buckwheat, millet, quinoa, and corn if you can tolerate that.

Some can also tolerate oats, although it contains gluten it is in a slightly different form that is better assimilated. Dairy is difficult as that can also often be a source of problems. Some who are dairy intolerant can tolerate goats or sheeps milk but others have to avoid all dairy (like me, and I also don't cope with soya very well which has restricted the options!). Good fats are essential, too, especially fish oils and sources of Omega 3.

I hope things start to improve for you.

[Mom23boys]

That is kind of how it happened in this house.

The nutritionist told us to test gluten for a couple of the kids and hubby's issues clear when we took it out and I got sick when we added it back in. We both did the enterolab testing and both came back with issues.

It sounds like you do have some level of gluten problem. You may want to read around and see if/what kind of testing you want. Good luck.

[AliB]

I think the above posting has been tagged on to this thread by mistake. Very valid and useful to know I am sure, but not quite in context just now.

Interesting about soy though as I am sure I have a problem with that.

[Takala]

Notice how Mr Ralph only joined the forum at 8 this morning and has only made one post?

Maybe "Ralph" just needed a new thread.

It's baaaaaack.

The original 10 page thread on this topic ("Dr." Saviano and the "magic once a month chewable pill to treat gluten intolerance") was locked.

Open Original Shared Link

Here's another thread on "Dr" Saviano and claiming "No Celiacs Can Have Soy"

Open Original Shared Link

And here's a third thread from this forum discussing "Dr" Saviano, this was from last January 2007. I see other people were also searching for info on this person and not coming up with much.

Open Original Shared Link

Now, the interesting part is that the original poster who kept pushing "Dr" Saviano at one point mentions she's got a German boyfriend and she wrote some stuff in simple German. She also wrote, quote:

"She said the pill everybody said I was making up will come out in EUROPE this year, and I don't know where it will be first, but they've been working on it for 11 years and one of the hold-ups was trying to get it out of the form of a vaccine."

At that point my brain went AHA ! Because on other threads posted very recently about this over the counter, "digestive enzyme" supplement called "Gluten Digest" that I was debunking, somebody with a different name was acting all enthusiastic about it and saying they couldn't wait to take it so the could go back to Germany and visit their boyfriend and eat all the pizza they wanted.

These supplement companies pushing the sales of these over the counter things are trying to imply that they are the SAME thing the pharmaceutical companies are doing the zonulin blocking drug trials on right now, and that the stuff has already come to market and it's safe and effective.

The only place where this Saviano person is mentioned on the web as a "doctor" is in these posts on this forum.

I ran some web searches for Bernadette Saviano or "Dr Saviano nutritional counseling", and am pulling up a list of what looks like porn sites. Also, there are some no longer working old geocites sites ("this page cannot be found") where the intro header sentence on the search mentioned celiac.

I searched the phone number given in the old threads as being "Dr Saviano's" 404 531 0900 and am pulling up from the Georgia business listings

Saviano & Assoc

5866 Glenridge Dr NE

Atlanta GA 30328

of course I can not find a website for Saviano and Associates, and notice how it does not say "Dr" or "MD"

I checked zoominfo business listings and it's not listed. There are a lot of Saviano names but no match in Georgia for a Dr.

So, I went to the State of Georgia's, Secretary of State, search for Business Corporations webpage, which is a very nice one. And I plugged in "Saviano & Associates"

Here she is

Open Original Shared Link

Business Name History

Name Name Type

SAVIANO & ASSOCIATES, INC. Current Name

Professional Corporation - Domestic - Information

Control No.: K400841

Status: Active/Owes Current Year AR

Entity Creation Date: 12/30/1993

Jurisdiction: GA

Principal Office Address: PO BOX 720576

ATLANTA GA 30358-2576

Last Annual Registration Filed Date: 2/20/2007

Last Annual Registration Filed: 2007

Bernadette Saviano is listed as the Registered Agent, the CEO, the CFO, and the Secretary. Same address, po box 720576, Atlanta 30358, and a business street address of 750 Hammond Dr bldg 8 ste 100 Atlanta 30328

This is the only business represented by this agent in this state. The registration for this business corporation was created in 1993 and is currently active. Thank you, Georgia.

I tried looking up the 750 Hammond Dr Bdg 8 Ste 100 address on google maps and it's a business park. I couldn't find a matching business address. Okay. So I went to a different search engine and finally got a hit on the street address on the page for Atlanta Metro Celiacs "List of Physicians and Dieticians used by various members of our Atlanta Metro Celiac Group. This list is in no way an endorsement of any particular physician...." Open Original Shared Link

Internal Medicine

Harry Delcher

750 Hammond Dr. Building 8, Ste 100

Atlanta, GA 30328

It looks like Harry K. Delcher, MD is a real physician and endocrinologist practicing in Atlanta, Georgia. He might be recently retired as vimo.com lists his State Board of Georgia medical examiners license as expiring on 4/30/2007 and his having 42 years of practice.

When I put the names Bernadette Saviano and Harry Delcher together in a search, it brings me back to the post on the gluten free forum again http://

www.glutenfreeforum.com/lofiversion/index.php/t28942-100.html

here is a post on that thread by "fj45guy" Feb 10, 2007

quote:

I am new to this forum and all this Glueten free stuff is new to me and a real pain in the a@#$. However, I can tell you that Bernadette Saviano is real and does do what "srokie" said she does. I am not going to get into any pissing match about this, I just saw the post and thought I would let others know that she is very intelegent, I would go so far as to say brilliant, and is very ahead of the medical field. I was refered to her by serveral people whom she has helped cure their sickness when other docs had no idea. These people who recommeded me all have PHD's so they are no slackers in their field either. As I said, I am new to all this, and just wanted to help others if possible. I live in Atlanta, GA where she practices. Believe it or not, your choice. Good luck to all and I would not hesitate calling her if you are in need. Oh, by the way, the Endocrnoogist sp? mentioned is her husband and they share office space.

I'm not assuming or implying any wrongdoing on anyone's part here as identity theft and spoofing is a common problem on the internet. I think with more searching somebody could track down the elusive Bernadette Saviano (or who's playing her patients on the internet) but she's not a medical doctor. There does seem to be somebody by that name using the same office address of Dr. Harry Delcher, while the phone # they used is not the same as his, it does trace back to the Saviano & Assoc business, whatever that is, that is listed as a business corporation in Georgia. The listing would be for tax purposes if somebody was selling something, or running a small business, for example.

[Abbott50]

Thank you to the people who offered some wisdom and advice.... it is much appreciated. It is sooo nice to know there is a group like this. The more I think about it, the less likely I feel like I need to be tested.... The changes are too monumental..... besides my daughter obviously inherited gluten intolerance from me anyway. We have always been label readers and healthy eaters anyway, and so far it has not been too difficult. Besides I love Quinoa pasta.... that's good right? Thanks again for the great advice... I plan on being an active member of the forum as I learn more.

PS. Maybe I am new to this, but shouldnt we stay on topic? I have no idea what the subject about Dr. Saviono is about... what the heck?

[jayhawkmom]

The original topic, that of the daddy who went gluten-free in support of his daughter, should be readdressed. =)

But, before I do address the original post, I want to say that I was here last year when "Ralph" or whatever her name was before, started going all crazy about Dr. Savviano and the problems with soy. S/he would not let it rest. But, as my inlaws always say... "ignore irrelevant behavior."

Back to the original topic.... that's exactly how it happened in this house!! My daughter was dx, and I went gluten free to prevent her from feeling "lonely" Incidentally... all sorts of issues I'd been having started to improve - even disappear. Amazing how that happens... isn't it??

I think it's really awesome that you are helping your daughter, but the health benefits to you are going to be SOOOOO worth the effort! And, your little girl will be forever thankful!

Best wishes to you!

[Takala]

I thought since I had read all that stuff before but did not start posting on this site until fairly recently that it would be best to show there was some... thought put into it. I didn't want to sound flippant.

There was this great anti- soy hoax running around the internet last year.

Anyway, back to the original topic, yes, if you are motivated enough just by how you feel not to need testing to change your eating habits, you don't have to be tested. Testing will not make you react differently to any dietary choices. If you have other interelated conditions or symptoms, and the doctors are pulling the skepticism number on you, you may want to mention it to your doctor that you had a very positive response to changing your diet. But we here in the 'states are currnently between the rock and the hard place if we have pre existing conditions and end up having to change insurance. I stopped eating wheat 5 years ago after a very long, frustrating 2 decades of misdiagnoses and what triggered me to stop eating it was a specialist who blew me off because I didn't test properly for what I already had, and who told me point blank no relationship between diet and any disease. It occured to me recently that I could mention this to my current doctor since they are balking at testing me for something else I'm showing signs of. So they order "some blood tests" and surprise, surprise, I don't have any blood antibodies (and the office person on the phone tells me I don't have celiac.... well .... duh! I debate to myself whether to tell her "Oh Goody That Proves I'm Compliant !" and figure why bother it's going to just sail right over her head anyway. I asked if she had the thyroid results and she said the doctor hadn't seen it yet so she wasn't allowed to say until he did... that was nine days ago. Now somewhere on my records is yet another wonderful flunked test the Medical profession can hold against me the next time I get stuck with a new Dr and start listing my physical attributes. Yet if we have different insurance they could possibly try to claim I was not notifiying them of a "pre existing condition" if I sought treatment for a related problem.

So the actual documentation of whether or not you actually "have" a disease can have interesting ramifications as you enter the twilight zone between middle aged adult and late middle aged adult but not yet old enough for Medicare coverage. Especially if the workplace of the adult carrying the insurance coverage is currently undergoing some.... reductions and changes in workforce personel at this time.

The reasons I have read from doctors say that the diet is so difficult and so challenging and (this is the kicker) such a lifetime committment (sounds like a really, really bad arranged marriage, doesn't it?) that they just can't rationalize the thought of telling patients to stop eating gluten if they DON'T PASS THE DIAGNOSTIC TESTS.

And this is, if you think about it, a really uhmmm, masculine point of view, the old fear of committement thing, oh my gosh, what if I was wrong, and that person was deprived the rest of their lives from eating junk food !!!

What if I was deprived the rest of my life from being able to function. Let's put things into perspective. I'm not going to starve to death. It's just one food group. I have never resented this, I have never said, you absolutely must somehow "cure" this. This is my second chance at having a life.

[Abbott50]

Takala, thanks for your comments..... you do bring up a good point. It might be wise to have a blood test while there are still antibodies for "official purposes" if you will. I think I have to consider it, even though I already know what the result will be. My GP will probably act like I am nuts to ask for the test.... but of course, he is the one who never considered gluten the many times I came in for different things.... oh well. The good news is I am feeling better, still a little spacey, but better. I ordered my first gluten free menu today at a restaurant.... I was suprised to see one so readily. Kind of funny, but I was nervous about asking....

[jayhawkmom]

I ordered my first gluten free menu today at a restaurant.... I was suprised to see one so readily. Kind of funny, but I was nervous about asking....

I just wanted to throw this out there for you... I've been at this for a year and 8 months. And, I still get "nervous" when I have to talk to a manager, waiter, server... whatever, and ask for a gluten free menu. In most cases, I go with the menu option that *obviously* contains no gluten, or I've familiarized myself with their "normal" menu in comparison to the gluten free menu found online. But, when my daughter's with me... it's a whole different ballgame.

So, I just wanted to let you know that even those of us who do this "all the time" - still have days when we feel insecure about it. At least.... I surely do!

[luvthelake21]

As other people said think about not having testing because it goes on your medical records. I am currently dealing with getting insurance and I don't have Celiac and it is no fun. My 11 yr. old daughter is officially diagnosed and hubby probley has it to. I wish it was not on my daughter record. We did not get hubby checked because we did not want it on his medical records. Good luck on whatever you decide and glad you are feeling better.

[AliB]

"Lifetime commitment". What twaddle. Isn't EATING a lifetime commitment? Isn't SLEEPING a lifetime commitment? Isn't using the toilet a lifetime commitment?

They eat different food in India. They eat different food in Japan. They eat different food in Tonga. They eat different food in Siberia. So what? We eat different food too. We live on the island of Gluten-free.