neesee

Uhhh, sorry, what did your comment have to do with Ron's response? I assume that the guy who wrote the article in Slate isn't a doctor either...I also am not a doctor...do we need to be doctors of medicine to respond to Slate's incorrect article?

Take care,

Scott

You hold Ron Hoggan up to this forum like he is some sort of an authority figure about celiac disease and non celiac gluten sensitivity. He has no more education on the subject than you or I do. He is a retired special education teacher who is making money selling books he's probably not qualified to write.

Besides, Ron didn't put his response here, you did.

It's my understanding that Ron Hoggan's doctorate is in education, not medicine.

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Celiac's Day

Celiac's Day

Bavarian Inn Restaurant

Saturday, August 15, 2009

INCLUDES:

Lunch

Recipe Swap

Speakers

Beer & Wine Tasting

Dinner

Schedule of Events

11:15 a.m. "Make your own Pizza"

11:30 a.m. Recipe Swap--bring copies of your favorite gluten-free recipe to share with others!

12:00 p.m. Lunch (enjoy a tossed salad, breadstick and your hand-made pizza with our famous Black Forest Sheetcake for dessert)

1:00 p.m. "gluten-free Baking Tips": An informal Q & A session with Linda Sanback, our bakery manager, who has Celiac's Disease

2:00 p.m. Enita Nepper, "Are you malnourished?"

3:30 p.m. Dr. Trudy Gregory, "Living Gluten Free without Breaking the Bank"

5:00 p.m. Beer & Wine Tasting

5:30 p.m. Fried Chicken Plate Dinner (biscuits and jam, vegetable soup, tossed salad with cranberry relish and cabbage salad, Fried Chicken with mashed potatoes and vegetable du jour, and ice cream for dessert)

$65 per person includes meals, activities, tax, tip and cover charge.

Apparently the celiac weekend they had in March was a success.

It's only about 20 mimutes away from me. I've been there too many times to count. It's kind of fun the first couple of times you go. It's very expensive! I didn't realize they had gluten free chicken. Do you suppose they take care not to cross contaminate?

I did buy my Christmas tree from Bronners. I love Bronners.

Open Original Shared Link

Maybe this can help you decide.

I found this online. I think it's interesting. It may pertain to this subject.

Open Original Shared Link

Thanks for posting this one -- forwarded it to my doc. They still cant decide if I'm 1 or 2!

Being celiac and diabetic is not fun but its better than dead!

Type 1s are usually thin at diagnosis. They can't control glucose levels with oral medications. They need insulin because their pancreas's no longer have the ability to make insulin. Type 2s do make insulin. For some reason their bodies no longer react to it. Type 1s get a condition called ketoacidosis when their glucose levels are out of control. Type 2s seldom do. When their sugar is out of control too long, the develop a condition called hyperosmolarity.

They are distinctly different. The damage is the same. My mom was type 1, my dad was type2, my brother is type2 and my husband is type 2. I'm pretty famaliar with both types unfortunately.

It sounds a heck of a lot like diverticular disease. And it is diagnoced with a ct scan and a high white blood cell count.

I made my Easter dinner; scalloped poatatoes and ham, asparagus, corn muffin, and rhubarb cake. Off to MIL for dinner, feeling safe.

Before dinner, she chided me - saying I wouldn't eat in her kitchen because it was too dirty. I assured her that it was just because it had so much gluten in it. I had to micro my dinner and notice that the micro was really dirty - full of food crud - and the counters had crumbs and crud everywhere! I tried to be as careful as possible, heated my food, and ate. And got glutened. Is it possible to get glutend by being in a kitchen like that? Should I just take a sandwhich or not eat next time? Can I say this now? YES, MIL, YOUR KITCHEN IS TOO DIRTY FOR ME TO EAT IN! ( And, probably for everyone else.) I've been sick for 2 days, but feel a little better now. Thanks

Ranger, I noticed that you are 63 years old. That would make your in-laws somewhere in their 80's. If I were you, I would cut them some slack. Maybe they could even use a little help around the house themselves. Take a good hard look at them. They could be slipping. If the kithcen is that filthy, they probably need someone to help them out.

This stuff is pretty heavy on my mind right now because I have been taking care of my elderly Aunt. She isn't capable of cleaning any longer. My brother and I put her in-patient in hospice just last week. She has advanced COPD and dementia.

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The GI I saw at Mayo was very open to the testing done by the naturopath, by the way. She looked very closely at the results, and we discussed them at length. She did not dismiss them in the least.

Debbie

Thank you Debbie......I was really curious about how the doctors at a place as prestigious as the Mayo felt about stool testing. It's interesting! It's also not what I expected.

neesee

Hi,

I see that it's been a while since you posted this, but I wanted to respond. I hope that you are still considering going to Mayo...

I am here at the Mayo Clinic, and I wanted to share my story with you.

After unofficially being dx'd with celiac by a naturopath early in 2008, I started the gluten-free diet with very limited success. I also went dairy-free and soy-free. I followed this diet very strictly for nearly six months. That said, I had negative biopsies and bloodwork over the course of three years. Nothing pointed to celiac. The diet did nothing but make me sicker, and make me lose more weight (60 pounds to date).

After three years of testing by my local GI, he finally sent me to Mayo. I've been here for almost three weeks. This place is truly amazing. Do not let others sway you from coming here. If you are still not feeling well, if the diet is not helping ease your symptoms, if your gut is telling you that there something physically wrong, come to Mayo.

The doctors here uncovered a physical problem with how my digestive system functions. It is completely manageable and treatable. I do not have celiac disease. I am not intolerant to gluten, dairy, nor soy. The Mayo Clinic has saved my life.

Please keep me posted on how you are feeling, and your decision on whether or not you will go to Mayo.

Debbie

Hi Debbie.....I'm glad the Mayo was able to help you. It sounds like you'll be back in the swing of things real soon. It was a good decision to go to the Mayo.

I do have a question. Didn't your Naturopathic Dr diagnose a gluten problem with stool tests? What did the Mayo clinic think about that?

neesee

I don't "worship" anyone, Neesee. I did my research thoroughly when I looked into his testing. He has not published, but there have been other published reports which do put validity into using stool tests for the identification of gluten antibodies. I paid my money and I got results which seemed to back up what was happening with me with regards to gluten and casein. The casein connection gave me the final piece of the puzzle.

This is not worship - this is an anecdotal reference for a testing service that worked for me. Consider how many people on this forum have complained about the lack of a positive result to a traditional test either by blood test or endoscopy, yet they have gotten great results from a gluten-free diet. I think this test is as reliable as anything the traditional medical community has managed to come up with.

I do not worship any person, but conversely I wonder about those that feel the need to condemn someone that they have no interest in. I do admire Dr. Fine for pushing the boundaries of traditional gluten sensitivity boundaries. I wish more doctors would push the boundaries of all areas of medicine. If you don't use his testing service, then why complain?

Laurie

I had no trouble at all being diagnosed with traditional medicine. The gastroenterologist came into my hospital room and took one look at me sitting there in my pediactric pajamas, crying and shaking,and he started arranging all the tests for celiac. I had never heard of it back then. The nurses didn't even know what it was.

So yes, for me, traditional medicine is the way to go. When medical society approves of Dr. Fine's methods and starts using them for diagnostic purposes then I can say I'm wrong about him. I doubt that will happen anytime soon.

When you've been through all the traditional tests, and they are negative,but you know gluten bothers you, just go gluten-free. I don't understand why you need enterolab's permission to go gluten-free. 400$ buys a lot of gluten-free food and supplies.

I don't appreciate being badgered about my opinion on Dr Fine. I should be allowed to express my opinion just like anyone else here. Even if I don't agree. It just seems like unless you agree with the majority, you should keep your mouth shut. This forum is for support. I wouldn't feel right telling someone to use enterolab for a diagnosis. Especially when it comes to their precious children.

To the best of my ability, I will always give proper advice. Yes, I do make mistakes, but I will never advise someone to use enterolab.

Denise

My friends call me neesee

Have you confirmed that he actually received it?

I believe he was sent a registered letter. That means he had to sign for it.

I would love to be wrong about the guy. I hope he responds to Gentleheart soon. How can you mistreat someone who is as kind and trusting as she is? It's just wrong.

neesee

I think my reference was to the remarks that said a non-response by Dr. Fine automatically confirms his work cannot be defended.

Laurie

No....that's not what I said. I said if he doesn't respond that's all you need to know about him. You obviously mean nothing to him. Do you allow other people to treat you that way when you ask them a question? If you asked your own dr a question and you know he hears you but he ignores you and walks away, would you continue to see him? I seriously doubt it. Dr Fine is doing the equivalent if he doesn't respond soon.

You all practically worship this guy and I just plain don't get it.

neesee

I think Gentleheart wrote a fantastic letter. She is a true lady. I sincerely hope Dr. Fine responds for her sake. Such a dear person should not be ignored. If he doesn't respond, I think that says everything you need to know about him.

neesee

I corresponded with the originator of this group letter and as of January 17th we have not yet heard from Dr. Fine. Our letter was sent certified and reached his office prior to the Christmas holiday. I want to again thank Gentleheart for her efforts. It was my opinion that the group that initially worked on this letter deserved an update - Gentleheart disagreed - so I'm sorry if I am stepping on toes but I believe in transparency and communication.

There might be a legitimate reason for Dr. Fine's delay in responding so let's not rush to judgment. I personally do not feel that we should send Dr. Fine a 'polite reminder' or contact him in any way as this just gives him the 'out' of claiming that he is simply too busy. Recall that 27 interested parties 'signed' this letter, including former patients, and that we used the name of this forum. I hope that Dr. Fine will respond soon and answer our sincere questions.

I was thinking about that letter today! Granted, I didn't sign it, but I am interested in what Dr. Fine has to say. So Gentleheart you are mistaken. The forum does deserve to have an update. Frankly, I'm not at all surprised by Dr. Fine's lack of response.

neesee

I'm sorry to hear of your son's new diagnosis Here's a pretty good article about nephrotic syndrome. Open Original Shared Link

neesee

He has pancreatic cancer. He had this type of surgery. Open Original Shared Link

Which weight watchers meals- I could bring them to work. Always exciting to see new stuff!!!

Chicken Santa Fe, Santa fe style rice and beans, and there's another one with turkey medalians in a cranberry sauce. I forgot the name of it. The thing of it is, WW states these are gluten-free at the end of the ingredient list. My middle aged eyesight appreciates that.

Wow! I don't even bother to look for stuff like this anymore. I'm going to check this stuff out.

Who would have thought it? Cereal and several weight watchers frozen dinners are gluten-free too. I found the weight watchers stuff a few months ago.

vit b12 was 315 ref range 180-914. I see the gi doctor the end of this month. After my diagnosis over the phone all I was told by him was to see him after 3 months on the gluten free diet. Now I am wondering if I should have had more things done before. Heck, I figured out it was celiac I shouldn't have to think of everything! Anybody have a bone mineral density test done? Should I have one? Is there any link with very low total cholesterol and triglicerides? I had those checked appx 4 years ago and had a doctor tell me she never seen a patient with as low triglicerides as mine before. I don't have the exact results but I am going to get them next week out of my medical record.

My cholesterol has always been pretty low due to the celiac. At it's lowest, it was 96 total. Several years later into the diet, my triglycerides tested at 28. Twenty-one years later my cholesterol stays at around 150. I don't know the hdl,ldl or triglycerides anymore. My newer drs choose not the share that with me. Makes me kinda mad. I like to know what's going on with me.

I just got my son's blood work results that they took in the hospital. They took the first set before he was admitted and it was very positive. But I'm trying to find the ranges online and am having NO luck! Here are the 4 "Immunology" lines on the paper -

IgA

Gliadin IgA Ab

Gliadin IgG Ab

Tissue Transglutaminase AB IgG

Does anyone know the normal ranges for these? I was to be able to read the results. Thank you!!

Emily

What were you son's numbers? You didn't list his results.