Left Doctors Appointment Feeling Perplexed....

[Islandgirl]

WOW - So many replies! I'm going back in a couple hours to re-read them all & respond! Everyone - THANK YOU! I'm so glad to be here!

I have new news and I need everyones thoughts please!!!!!!! At the 1st doctors appointment, he asked specifically if I had dibetics and/or Crones in my families history - I'm not in touch w/most of the family regularly. Since my test came back negative & I've been pissy, this morning I made a couple of calls. I have diabetics, crones, IBS & severe colitis in several members on both sides of biological parents. Mom is colitis (bad - on several drugs not making a difference) and half-sister (we have the same mother) with 100% of the symptoms I had - she diagnosed w/IBS, on several Rx's none making a difference either. Maternal Grandmother had colitis, non-responsive to any colitis drugs and she died when I was about 15 y/old - so she must have been a fairly young woman.

Okay - the cheese that stands alone is now suddenly not thinking she needs a therapist - maybe just a new doctor???????

[nora-n]

Hi

My daughter got an official diagnosis of celiac with both negative blood tests and biopsies.

And this is here in europe, where the government gives you money if you get a diagnosis. (about 200 dollars a month).

She was so symptomatic on gluten, and bor so much better off gluten,a nd had numerous other typical symptom, including graves disease. On a trial of gluten-free, her antibodies went away and she was no longer hyperthyroid.....

She also had these knives in the stomach.

During endoscopy, she could feel them taking biopsies right at hte spot where sha had had this knives-feeling.....

About those relatives, just what might happen if they try a gluten-free diet?

Have you read the work and background of Dr. Fine at enterolab?

His field of speciality was colitis, and that lead him on to gluten-sensitivity, and gluten-sensitive colitis.

nora

[Islandgirl]

About those relatives, just what might happen if they try a gluten-free diet?

Have you read the work and background of Dr. Fine at enterolab?

His field of speciality was colitis, and that lead him on to gluten-sensitivity, and gluten-sensitive colitis. nora

We've had several conversations since yesterday morning. I think they may get blood tested while they are still eating gluten. If they come up positive, that would be my diagnosis w/out my going back to Gluten for 3 months and re-test. I hope that's what they decide to do - waiting to hear today on that. Plus I have my re-check on Monday w/the doctor and now I have all this family history to fill him in on - anxious to hear what he says.

I have read a few blurbs about Dr. Fine here on the boards. I need to read this - where do I find it?

Last night - very strange. I was out of my regular whey protein powder & used some of DH Casein Protein powder and felt so bad about an hour later until bedtime! Stomach went into orbit and felt just like I did 4 weeks ago before I started Gluten-free. I've had this powder before & don't remember feeling bad, but I was still on Gluten back then. Casein is from milk & I don't recall ever having a problem w/milk before - does anyone have any ideas? All I had yesterday was the 2 protein shakes, some peanuts & almonds.

[Islandgirl]

Morning everyone! I was hoping to have several members thoughts on my newly learned family history. Everyones thoughts and ideas have been SO helpful to me this past week or so.

Anyone have the Dr. Fine link so I can read up on his endevors?

My follow up is tomorrow morning, I'm anxious to hear what he says with this family history I now found out about.

Everyone have a great morning & thankxs again!

[aikiducky]

My thought is that your family really should get tested. Have any of them decided anything about that yet?

Pauliina

[Fiddle-Faddle]

Sounds like your whole family is at high risk for gluten intolerance!

I was just wondering about your reaction to the DH Casein Protein Powder--did you check the ingredients? Maybe it contained barley malt? Or wheat germ?

I don't have the Dr. Fine link, but I bet you could google him ("Dr. Fine celiac colitis")and come up with lots of info.

[Islandgirl]

My thought is that your family really should get tested. Have any of them decided anything about that yet?

Pauliina

Waiting for a call today from them - half-sister was out of town for a long weekend & being brought up to speed today is what I understand.

[hathor]

I have read a few blurbs about Dr. Fine here on the boards. I need to read this - where do I find it?

www.enterolab.com

particularly: Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Dr. Fine's CV: Open Original Shared Link

There is also information at: Open Original Shared Link

Another article that may be of interest: https://www.celiac.com/st_prod.html?p_prodid=1417

[empoweredmom]

Your reaction to casein is not so surprising . . . if you do the tests through Enterolab you will probably find out that you cannot tolerate gluten or casein (a milk protein that is very similar in composition to the protein structure of gluten).

This is my first reply to this group, however I have been reading everyone's stories for months - it is the only thing that has kept me from thinking that I am going crazy. My brother was diagnosed with Celiac a year ago through a biopsy. I didn't know much about the disease, so I started to do some reading. SURPRISE - I found myself connecting to many of the stories of people suffering atypical symptoms. I went on a gluten and casein free diet on January 1, 2007. Within 2 weeks I felt better than I have ever felt - I mean GREAT! I have lost 35 lbs in the last few months, still have 30 to go. It seems that I am one of those who GAIN weight with gluten intolerance. The psoriasis on my face and arms went away within two weeks of the diet change. I now know that I have been glutened because I get blisters on the inside of my nostrils that pop and scab over almost within 4 hours of the gluten intake. I could go on for hours with all the ways that the change in diet have helped me.

Based on my positive results with the elimination diet and my brother's positive diagnosis, I asked my children's ped to test them for Celiac. I got the typical "are you crazy" look and reaction from an uneducated health professional. She reluctantly ran the blood panel, and, as she suspected, it was negative. I proceeded to have them tested through Enterolab. My 3 year-old's results are back, and she IS gluten and casein intolerant, does not have full blown Celiac. We are waiting on my 7 year-olds results, however I anticipate that she is also gluten and casein intolerant based on past health issues. Both children have been on gluten and casein free diet since the day after we took their samples to be mailed to Enterolab. They are already showing the benefits of a 'healthy' diet for them. Their peditrician will not acknowledge the test results and thinks I am totally nuts to put them on a 'restricted' diet for 'no reason.' SHE obviously has not suffered from food intolerances as I have - why would I put my children through all the problems I have been through.

Anway, long post to say . . . stick with it. You are not crazy - you know how you feel when you do/do not eat certain foods. Learn to listen to your body, it will not steer you wrong. AND strongly encourage your family members to be tested. They are suffering needlessly.

[Islandgirl]

Wow - great postings! Empowered, Great for you! I'm so glad you changed your food and felt as great as I did. It was so dramatic for me that I swore it was a placebo effect - even though I really thought I'm way too anylistical to succum (sp) to a placebo effect - anyway...... I used someones saying here at the doctors office this morning... "You know medicine, but I know my body"....

So, this morning I got his PA - LOVED her - super nice gal. I retold my story of the last 9 months, added in my family history and she basically said... if it walks like a duck, talks like a duck.... you get the jist. She said that unless I REALLY wanted that scope test (which you have to be twighlighted for)and go back on Gluten for a minimum of three months, then I can just leave it alone as long as I'm feeling great. I really don't want that test nor can I imagine going back on gluten at all, let alone for three months. She said they are writting down that I am allergic to wheat in my file and for insurance reasons, that would be better than Celiac because if our insurance ever changes, I won't have a pre-exsisting condition to deal with. I asked her if there is any other thing out there that coud be wrong with me that by stopping gluten would make me 100% better & she said no. She said "We have our answer, but without a positive test to back it up, we're lisiting allergy."

I can live with that & DH seemed glad to hear that it wasn't in my head (???), meaning they said something conclusive (wheat allergy) and not your test was negative, so we don't know.

Empowered - I too have for the first time in my life, lost weight easily and been able to actually manage it the past 5 or 6 weeks almost without effort. It feels like my body just settled down and relaxed, like it was dog, dead tired and it just settled into a cozy recliner. I don't feel like I'm struggling anymore - like me and my body are on the same team finally - too weird????

I'm getting the blood tests faxed this afternoon - I'll update this when I get them in because ya'all know way more than I do about what that all means. And I have to look up what Entrolab does that the blood test doesn't - didn't I read it's a fecal test? How much does that cost? Will also look up the links this afternoon - Thankxs everyone - chat more this afternoon!