New,positive Biopsy Lots Of Dammage

[Gcbec]

Ok here I got, Hello my name is Cindy. I am 36 and was just told yesterday that I have celiac disease. This has been going on for several years really, I also have Lupus Hypothyroid, SVT, and a blood clotting disorder oh yeah and anemia. It really started 7 years ago when my daughter was born 3 months premature, I had blood clot in my lung then a few months later I had ischemic colitis which they say was from another blood clot. I continued to have problems on and off severe pain diareaha nassua vomiting. in 2002 I had intusseseption had emergency surgery. They said this was so rare they have no Idea what caused it, nor did they find out. well 12/04 I again had intussesception went to different hospital and they ran more tests. My blood work came back positive for Celiac but they said it could be from lupus causing a false positive. So they did endoscopy and biopsy and came back positive, again they said could be from lupus so wanted to wait 1 month. I waited 6 months because I started to feel better, I was having occasional cramps and diareaha mostly through the nights. I get fevers night sweets and I am always always tired. I went and had biopsy endoscopy done last week and it came back positive for celiac, the dr said it looks like it progressed much more than they would have expected. They said there was lots of imflamation throughout and there were several areas of concern and they are still waiting on those biopsy to come back. I had a cousin that died from this 2 years ago, has anyone had a biopsy endoscopy or any kind of cancer that might be able to help me further? I am really scared because they are sending me to Manhatten to meet another specialist. They keep telling me they are very concerned. Please help me find information and experiences from people that might have been through this. How could this have gotten so bad in 6 months and could the problems from all these years been the cause?

[Jnkmnky]

Are you on the gluten free diet yet?

[KaitiUSA]

The only thing that will heal damage is the diet. That will reverse damage and you need to get on it right away. The other things you have are linked with untreated celiac.

This site will help you out tremendously.

[Gcbec]

Are you on the gluten free diet yet?

<{POST_SNAPBACK}>

No Dr just told me yesterday. I have been in denial for some time, didnt expect this at all. She said I should start imediatly. I dont know where to start, she set up appointment with nutrisionist on tuesday.

[KaitiUSA]

No Dr just told me yesterday.  I have been in denial for some time, didnt expect this at all.  She said I should start imediatly.  I dont know where to start, she set up appointment with nutrisionist on tuesday.

<{POST_SNAPBACK}>

Many nutritionists know nothing about celiac. You need to do alot of research on this yourself and this site will help with everything you need to know. You are also going to have to look at makeups you wear and products like that. Did you know 6 months ago you had celiac too? You said it progressed alot more then they would have expected...so that made me think you knew about this before.

Anyway, you need to be gluten free right away because having gluten will lead to other serious and life threatening things.

[Jnkmnky]

Are you in the U.S.? There are many great stores you can go to to get the food you need. WholeFoods, Henry's, Boney's, Wild Oats, Trader Joe's...on-line ordering. Here are two sites with great bread products.

Open Original Shared Link

Open Original Shared Link

All of their products are tasty and will help make your transition smooth and enjoyable. There's no reason to live life eating food that makes this diet difficult. There are lots of great food suggestions in the parents of kids with Celiac section. Post Fruity and Cocoa Pebbles are gluten free. Tinkyada pastas are the best. Classico sauces *even the alfredo* are all gluten free. Velveeta cheese is gluten free. Look around this site for good foods that will make this diet doable. Order your breads right away. It may take a week for them to be delivered.

[Jnkmnky]

You may want to avoid dairy products for a few months while your villi heal. You're probably lactose intolerant right now. That may change as your villi heal. Rice milk is an excellent alternative. Soy causes problems in some people.

[Guest zipy]

Hi there,

I was just diagnosed as well...and it was triggered by having my second child. I don't know about all the untreated problems, but I hope that you start the diet soon and that you start to feel better as well. This board has tons of information to help you.

Good luck,

Erin

[tarnalberry]

Welcome to the board, though I'm sorry you went through so much getting here.

As for the diet - start at the easy places, but start now. Until you get a handle on what you can and can't have in the processed food world, stick with naturally gluten free whole foods. Whole fruits and vegetables are gluten free. Fresh, unprocessed meats are fine (though check the labels, of course, to verify that, for instance, you don't pick up ground beef that has wheat added to it). Plain nuts and beans/lentils are also fine. Unseasoned rice and corn are fine as well. Add some olive oil and plain spices (McCormick is a safe and common brand), and you have a wide variety of meals that you can make to get you through the days/weeks of navigating the diet.

[Gcbec]

Welcome to the board, though I'm sorry you went through so much getting here.

As for the diet - start at the easy places, but start now.  Until you get a handle on what you can and can't have in the processed food world, stick with naturally gluten free whole foods.  Whole fruits and vegetables are gluten free.  Fresh, unprocessed meats are fine (though check the labels, of course, to verify that, for instance, you don't pick up ground beef that has wheat added to it).  Plain nuts and beans/lentils are also fine.  Unseasoned rice and corn are fine as well.  Add some olive oil and plain spices (McCormick is a safe and common brand), and you have a wide variety of meals that you can make to get you through the days/weeks of navigating the diet.

<{POST_SNAPBACK}>

Thankyou all so much for the information. I am gonna start the diet as soon as I can. I still am left wondering if anyone here has had lots of dammage and besides diet was anything else done? And has anyone here ever moved on to late stages like cancer? I am going to a specialist in NYC Dr Peter Greene so hopefully that will help. Thanks again and I know how important diet is now just got to face up to it.

[Guest zipy]

Hi again,

I'm the first diagnosed celiac in my family. My grandfather passed away almost 10 years ago of colon cancer and had always been lactose intollerant, my uncle has had parts of his colon removed because of cancer, he's always had digestive problems as well. I'm not in his shoes and I can't make him get tested for gluten intollerance, but I'm highly suspect, there are too many coincidences. So, for me at least, I can say that I think there is probably a link between gluten and cancer in the family. I'll keep a positive vibe for you while you're going through all your tests.

~Erin

[Canadian Karen]

Hi Cindy! Welcome to the board!!

Well, now that you know that definitely you have celiac, you can start firstly by getting gluten free immediately. The second most important thing you can do is think positively. There are people on this board who literally were knocking on death's door before they finally got the celiac diagnosis and have worked their way back to a healthy active life.

Celiac can be devastating to your body. It can be so debilitating that you literally are convinced that you are dying. I know, I've been there. In fact, if it wasn't for all the knowledgeable, supportive people here in this forum and the invaluable advice and encouragement they have given me, I am afraid to think where I would have been by now..... I at one point was convinced that due to years of damage done due to celiac, that I was past the point of no return. After I finally grasped the enormity of the situation (being celiac, that is), I gave this disease the respect it deserves and smartened up and started taking this diet really seriously. I learned many things that I was doing wrong i.e. exposing myself to cross-contamination (like using the same toaster as the rest of my family), not checking medications properly (I was using Gax-X Chewable Tablets like candy for the gas not realizing they contained gluten), wasn't careful enough with my shampoos, make-up etc. (I now use Pantene stuff now as the hair products I previously used contained gluten).....

Celiac often needs a "trigger" to kick in and the birth of your daughter 3 months premature sure is one heck of a trigger! I know, I have twin boys who were born at 31 weeks gestation and were 3 lbs. 12 oz. each. I also know the stresses that go along with the NICU and all of the ups and downs of good days and bad days that your preemie has. The good thing now is that now you know, YOU CAN TAKE CONTROL AND DO SOMETHING ABOUT IT!!! You have the power to change your life and change the way you live and eat. Think of it as your body is yelling at you, telling you THIS STUFF IS NOT WHAT I NEED!!!!!

Any support, encouragement or answers you need, you will find here. There are a bunch of really great people on this board who have been down this road and will help you go down it also..... Anything you need to know, just post away. If you are having a not so great day, let us know and you will get all the encouragement you need. Just remember, you had the strength to weather the storm of the NICU and all of the stresses of having a preemie, you can weather this storm also!!

Hugs and welcome!

Karen

[Guest BERNESES]

Just wanted to say welcome Cindy- you came to the right place. Here's a link that has been enormously helpful to me in finding gluten free food if you don't have a health food or Whole Foods store near you. It's:

Open Original Shared Link

You want to click on the upper right folder that says April 2005. This list has really helped me but still READ LABELS. i would also suggest reading "Wheat Free, Worry Free" by Danna Korn (spelling?) ASAP. It's enormously helpful. We're glad you're here. Beverly

[Ignatia]

There is so much information on the internet that you may find out more here than what a "nutritionist" can tell you. My experience with them has also been that they haven't a clue.

While you are learning about the diet, simplify. Eat just a few things that you are positive are gluten free. I had to start cooking all my own foods; we rarely go out anymore. Keep it simple for awhile until you can start adding foods you know to be safe. You will be surprised how fast you feel better.

My mother is crippled by arthritis and osteoporosis, in a wheelchair for the rest of her life. Her father and four brothers all died of colon cancer. I feel so good on the diet that I don't think I will have to deal with any of those problems. Mom eats my same diet, because I do all the cooking and even she feels better.

We have been on it for 5 years now. Neither of us takes much medication any longer and before the diet, we were both a walking drug store.

Please educate yourself. Make sure you are not ingesting gluten. Don't dwell on "gluten free". Do dwell on all the great foods you still can eat. Gradually you will find recipes and products you can eat. Read labels. Miracles will happen in your life and health.

[Ignatia]

[You were curious about damage that some of us suffered. I spent my whole life with dreadful allergies, gas, bloating, constipation, cramps, fatigue, aching joints and many other complaints from my early teen years. I am 62 now.

When my doctor did a colonoscopy, he told me that diet had nothing to do with my SEVERE ULCERATIVE COLITIS! I was bleeding to death. I got no relief from his prescriptions and ended up back in the hospital twice for a week each time from "unknown illnesses." My daughter finally figured out what was wrong with me. My doctor had tested me for Celiac (because I looked Irish and am) but it came back negative, which is common; therefore his announcement of diet not being cause.

My daughter told me to stop eating gluten. A friend of hers was a Celiac. From that moment, I haven't touched gluten in 5 years. Within 24 hours I felt better, more energy. Within 2-3 weeks, I stopped taking acid reflux meds; didn't need them. My joints quit hurting, I lost 30 pounds (not from lack of food, just the diet), I have energy, my allergies are less and I feel great. After a year, I noticed my bleeding had stopped. Asked for another colonoscopy. The gastro doc was amazed that I was totally healed because of the diet.

We probably all have damage done from years of not being on the diet. But, you can heal. Just give it a chance. My mother in her wheelchair is healing and feeling better. Just wish it could help her walk again. Gluten intolerance, I am sure, is the reason she is crippled with osteoporosis. Your colon is so torn up by gluten that it cant absorb calcium and other nutrients needed to avoid other diseases. Get off the gluten and you'll feel great.

Susan in Texas

[thomas3000]

Hi susan,

I loved your post!! It's amazing what the body can do once the stressors are taken off. Just let everyone know, I'm not celiac, but am gluten intolerant. My family has a history of depression, anxiety disorder, strong tobacco addiction..These are all signs of gluten sensitivity. My aunt and uncle both suffer from panic disorder and are currently taking meds for it. If they miss the underlying factor here(gluten), I'm afraid of the health consequences they will have in the future. I told both of them to stop eating gluten, but they won't listen. We're english, dutch, irish, swedish, scottish, scandinavian. Does it get any clearer than that? I also suffered from panic, ptsd, depression, but have found the genetic link. My symptoms are fading away thank the lord, it's been a tough struggle, but I thank god he made me stubborn enough not to see conventional docs and find my own answers. I found out that 6 percent of people get correctly diagnosed accurately. My doc focuses beyond symptoms and finds root causes to illnesses. I didn't correlate my mental symptoms with my diet, but I'm living proof that living gluten free will "cure" depression and anxiety disorders.. I hate the FDA and the AMA for profiting on illness, unless they just don't know the truth behind this hidden epidemic...Would they even accept it?? Who knows...

[Pharm]

I just recently had 2 positive blood tests for celiac disease. I am waiting on the endoscopy in January. I read as much as I could about the disease & got lots of info & help from a friend who is celiac. I decided to cut out gluten as a test about 3 months ago. I noticed changes for the positive within days, some of which I haven't heard mentioned by others such as; NO MORE- cold feet at night, thick sinus phelgm..esp at night,aches & pains, extremely dry skin, gas/bloating, smelly bowel movements, lack of energy etc. I was amazed by the quick changes for the better & have never gone back. The more I read & the more follow this board, the more I think gluten hurts almost everyone, just to different extents. Many of my realtives have similar symtioms as I did & even many people in general complain of aches/pains/sluggishness etc. Does any else sense that gluten may be a bad thing for everyone & that we are just more sensitive than most or have I gone overboard with this?

[ravenwoodglass]

I just recently had 2 positive blood tests for celiac disease. I am waiting on the endoscopy in January.

<{POST_SNAPBACK}>

I agree with the poison for everyone statement. It impacts much more than just the gut. I believe its' most serious impact is on the brain. It seems to occur long before the gut symptoms show up and makes life really miserable. Please be aware the doctor will need for you to poison yourself for a time before the endo. I wonder why they demand it. I ended up so sick from the gluten challange I couldn't even make it to the test! Oh well we all know in the US medicine is money.