Celiac disease brings food, lifestyle changes

Cindy Pickles--NC wrote:

Visit www.enterolab.com .
I have pulmonary hypertension secondary to scleroderma. there is so much autoimmune disease in our family that I decided to research and see if i could come up with anything. to explain. I read a book titled "the Gluten Connection" which was a rebal eyeopener. One thing it said is that you can be gluten intolerant but never get to the point of being diagnoised with celiac disease. The gluten is destroying the villi--thye may be inflammed or partially atrophied but not to the point that the antibodies are leaking into the blood stream. However the antibodies are in the intestines and would show up in the stool. After my blood antibodies came back that they were present but not to the level of calling it cleiac disease my doctor agreed to order the antibody stool test and the gene test. Casein test was also done as casein is structurally very similar to gluten. Not to my surprise was I had boot genes that predispose one to cleiac disease and the levels of the three antibodies was high even after being gluten free for 2 months prior to the test. It makes perfect sense to me. Also cameback cseinintolerant. I am hoping that bygoing gluten free that I can reverse the scleroderma and maybe even the PH. Please give me your take on thses comments. My PCP said he had people he was sure had celiac disease, he would put them on gluten free diet, symptoms would improve but the blood antibodies did not confirm celiac disease. this helps to explain.
Please give me yor take on my comments.

I have never noticed a Celiac forum before. I'll just add what I have experienced.
Mu youngest son has just turned 40. He was very ill at birth and after a year of testing, was diagnosed with Celiac. I remember his first birthday cake being made of rice flower and we had a birthday celebration and then had to take him to the hospital that night for the dozenth time or more sick again. He couldn't have any gluten what so ever, milk or milk products and I had to watch him extremely close not to catch a cold or be around anyone sick. His amune system was so weak., I am a ferfant beleiver in healing and prayer. I took him to be prayed for at the age of two and a half. And he made an immediate improvement. With in two months, he was being allowed milk, small portians of bread made of wheat and in a year was completely off all gluten free food. He was under doctors care and the doctors were just as amazed as we were. Then by the age of ten, he became hyperkentic and I took him off all preservitives and sugar products. It seemed to turn him around to normal until he reached the age of 18. Then the bomb! Or so we thought. He nearly died of an attack of kitoacidosis. We had no idea he had diabetis.Since then he has been insulin dependant. Now this year we find he has a birth defect no one knew about in his heart. We are waiting for the Cleveland Heart institute to let us know if they will take him and attempt to fix his heart. Our Electro Cardiologists have attempted four times in the past six months and failed to fix it.
I said all that to say this;
now we wonder if from the beginning some of these things could have been known when he was diagnosed with Celiac. We will never know I guess. But too many things leave so many questions unanswered.

Also did you ever hear that Celiac is part of the cystic fibrosis family? That may be something for you to check into as for the lung issue.

I have been diagnosed with IBS. I had an upper and lower GI done twice. The second time, there was a trace of celiac disease, but my doctor said not enough to diagnose me with it and diagnosed me with IBS. At the same time, I began to have thyroid problems and had blood work done which showed that I tested 1/2 positive for celiac disease. Nothing else is being done and I still have my "IBS symptoms". What else can be done?
How can you be 1/2 positive? Either you have CD or you don't. Said to say, most doctors are not up to speed on CD. What they were taught 10 years ago is obsolete. Pursue testing on the CD, maybe with a different doctor?

I tend to agree, its much better to discipline your stomach and have disease that you can control. It was hard at first but with time Iearnt how to control this and not get sick.

I hope with time a fix will be found

rls wrote:

tests. i had iron deficiency anemia in 2003. at that time i had a bleeding ulcer. i have the anemia again and had the colon looked at 1/03. well right now i am waiting on the results of biopsies that were taken and also a blood test.
in 2003 i had a bleeding ulcer. this time my gastrointerologist didn't find that. so hence the blood test. i have been reading about celiac disease and frankly have no other symptoms other than the anemia.
so here i am waiting. i decided to start researching. any comments would be appreciated.

rls - I have been anemic for about 15 yrs. I have been to countless medical professionals and have had every test available, etc. w/ no answers. I, like you, had the scopes done about 5 yrs ago - and I really don't think the medical profession knew much about celiac then. During my mysterious "anemia" nobody even mentioned celiac. And of course, now after being diagnosed 6 mos ago - and in denial of that diagnosis (claiming that these Dr. just want to "label" me w an ailment) I have come to terms w/ the fact that now I do believe that I have the disease. I have had extensive dental work done w/ a problem of decalcification (a red flag for celiac) I am only 48 yrs old, and have only had about 3 periods in the past 3 years - and am not menopausal yet, and now my joints are hurting like no other - every single joint - not just here and there. I have never had the IBS/diarreha like so many suffer - but I have recently experienced stomach bloating - like I were 9 mos pregnant! I think the bottom line is that we have to educate ourselves on what the right diet is for our own personal needs. I guess just know that you are not alone...and I will continue to look for support...because like I have said before, I think I would rather give childbirth 100 times over, than be diagnosed w/ celiac.(I was successful w/ a gluten free diet for only 2 months out of the past 6 - and it was one of the hardest things I have ever done...) Good luck!

I have been successfully gluten free for over 4 years. I don't know if I have celiac disease, but I do know that gluten causes me many problems including neurological and GI. My doctors refused to test me for CD, so I confirmed I have antibodies to gluten through Enterolab.

I love that gluten was the answer to my health problems. I thought I was dying. I regained my health not by surgery or toxic medication, but through a lifestyle change. How wonderful that I was in control and able to make such a difference in my health. My only regret is that I did not learn about gluten sensitivity many years ago. I might have been able to save myself years of illness and pain.

Although there are gluten free substitutes for all the gluten products I have given up, I find I feel my best if I don't eat any refined grains.

I am a 3rd generation CD sufferer with 15 first degree relatives who have CD. In spite of familial history, my son has seronegative results in spite of being drastically underweight and a high functioning autistic all his life. We must rely more on the stool tests and dna testing. Why do doctors not use that more? Is it because it's only offered at one lab in TX?

Excellent article, but it didn't go far enough in addressing the issues faced by celiacs in social situations, restaurants, and so on.

Dr. Alessio Fasano was also involved in a study published by the Scandinavian Journal of Gastroenterology in April 2006 in which researchers discovered that gliadin (the protein in gluten) makes the body produce more zonulin, which creates more space between our cells (causing "leaky" or permeable gut. Access PubMed at www.ncbi.nlm.nih.gov/sites/entrez at plug in key words or PubMed ID #16635908 for the study. Dr. Fasano was also involved in another study also available thru PubMed which concluded that too much zonulin triggers any number of autoimmune diseases, including Type I Diabetes, Multiple Sclerosis, Lupus, Fibromyalgia, CELIAC, Rheumatoid Arthritis, etc. If you put gliadin in a petri dish with human tissue, it will attack the tissue! Imagine the damage it can do as it not only makes your gut more permeable, but it wreaks damage throughout your body! They have found gliadin in people's brains after autopsy, so it is able to get through the brain/blood barrier. The MS Recovery Diet Book advocates a gluten-free diet - its authors write that they have both recovered from MS - all this without harmful drugs. It's worth a shot for anyone who is suffering from any type of autoimmune disease.

For people who are newly diagnosed with Celiac Disease, Dr. Fasano's center has a website with videos of people with Celiac talking about their experiences. It's like having a Celiac support group on your computer. The URL for the site is: http://www.celiaccenter.org/videos.asp

marceqwlts wrote:

Excellent article, but it didn't go far enough in addressing the issues faced by celiacs in social situations, restaurants, and so on.

FYI -- Dr. Fasano's center has a website with videos of people with Celiac talking about their experiences. It's like having a Celiac support group on your computer. The URL for the site is: http://www.celiaccenter.org/videos.asp

I wish this article had been more positive. In the DC area, you can get almost all foods listed GF--even in restaurants! Lilit in Bethesda makes GF pizza and sandwiches. They also carry wonderful GF beer and bakery products from Sweet Sin GF Bakery. This is just one location! There are many more options.

I also wish they had provided resources as well. For families in the DC Area for have children with Celiac Disease, we have a Local ROCK Chapter. ROCK stands for Raising Our Celiac Kids. I am the leader of this group and we love to have new members join us to learn how easy it is to be Gluten Free!

You can find our group on the yahoo groups pages at: http://health.groups.yahoo.com/group/NoVa_MD_...

Please join us. We share information and have Gluten Free fun events for the kids all around the DC Metro Area. In fact, we have a GF Spring Egg Hunt and Family Pot Luck lunch coming up Saturday April 5th in Columbia MD.

There are also other groups in the area that support individuals with Celiac Disease. The Washington Area Celiac Sprue support Group can be found at www.dcceliacs.com . They have an upcoming meeting on Saturday March 22 in Bethesda MD. The No Vo CSA group can be found at: http://www.csaceliacs.org/Chapter_Pages/DCMet...

Celiac is not so bad. We are all so much healthier now that we finally know what had been making us so sick! Hook up with one of the above groups and find out about all the places we can go to out to eat and/or purchase wonderful gluten free foods :)

I have 2 children with 1/2 diagnosed Celiac Disease, meaning we chose not to do the invasive biopsy under GA for 1 and another is too young still for the tests to be accurate. I have 1 who is IgA deficient which gives some of the blood tests a false negative.

It's a nice article, but it fails to say testing is only 29%- 33% effective in catching Celiac Disease in the early stages before Total Villi Atrophy has occurred (biopsy and blood tests). Most people know they are sick and are searching out answers before Total Villi Atrophy occurs.(Pub Med article figures)

The main thing for anyone making health decisions to know is that just because your tests are negative, does not mean that you won't benefit from a Gluten Free diet (when you are suffering from Celiac like symptoms).

And the best thing about being GF? Being Healthy! My kids will turn down chocolate chip cookies and donuts in favor of Strawberries and Raspberries!

It isn't a death sentence, it puts the focus of a social gathering on socializing and not "the food".

Cindy, I think I know you. I am also in NC, have PH and suspected lupus or scleroderma and after several years of intestinal symptoms and drastic weight loss, finally diagnosed with Celiac disease. I am now feeling better on gluten free diet and wondering too if I can improve PH symptoms. I would love to speak with you more. How do we connect?

Cindy Pickles--NC wrote:

Visit www.enterolab.com .
I have pulmonary hypertension secondary to scleroderma. there is so much autoimmune disease in our family that I decided to research and see if i could come up with anything. to explain. I read a book titled "the Gluten Connection" which was a rebal eyeopener. One thing it said is that you can be gluten intolerant but never get to the point of being diagnoised with celiac disease. The gluten is destroying the villi--thye may be inflammed or partially atrophied but not to the point that the antibodies are leaking into the blood stream. However the antibodies are in the intestines and would show up in the stool. After my blood antibodies came back that they were present but not to the level of calling it cleiac disease my doctor agreed to order the antibody stool test and the gene test. Casein test was also done as casein is structurally very similar to gluten. Not to my surprise was I had boot genes that predispose one to cleiac disease and the levels of the three antibodies was high even after being gluten free for 2 months prior to the test. It makes perfect sense to me. Also cameback cseinintolerant. I am hoping that bygoing gluten free that I can reverse the scleroderma and maybe even the PH. Please give me your take on thses comments. My PCP said he had people he was sure had celiac disease, he would put them on gluten free diet, symptoms would improve but the blood antibodies did not confirm celiac disease. this helps to explain.
Please give me yor take on my comments.

I would like more information on just what foods are good for you & those that are to be omitted. And what flours to use and any recipes,espicially for main course.

I want more info on what foods to omit and what flours are best to use,and recipes for main course. AND just what were your symptons that made you aware of the desease?