woolwhippet

I am DQ 3,7 and DQ4 and my blood work was neg but had 'd' , fatigue, mild depression, anxiety, and an odd rash on my bum. The only thing that has stopped all these symptoms is the gluten-free diet. I am now 5 weeks gluten-free and feel like the energetic positive person I was ten years ago. A truly amazing turn around for someone without the official celiac genes and neg blood work. I often think--what if I was not so head strong? How sick would I have to get before science gave me an answer? I have a five year old daughter myself and if she begins to show signs of gluten sensitivity I would certainly have her stool tested and i'd pull her off gluten for a good period of time and see what happens. It can't hurt. It's a healthy diet.

I am lucky that I am the person who makes all the meals in our home. No one even realizes that as I have gone gluten-free slowly so have they! Pancakes, muffins, cookies, all gluten-free. dinners, gluten-free. Hee hee.

Dairy is a great place to start! I'd put money on it that it's the culprit...

I am curious to know more about microscopic colitis. The good, the bad, and whatever else. This is such a smart group of well read people!

I went with the gene test because I know I react to gluten through many months of elimination diets, so I decided just to have the gene test out of curiosity because I felt that the antibody test would tell me what I already know. I also wanted to exclude celiac disease and differentiate between celiac and sensitivity.

I am so glad I did the gene test because after a late night researching I have learned to much of what can also be derived from these results. DQ3 subtype 7 is apparently also the culprit for milk allergies.

As for my having DQ4--I am still trying to figure out why an Irish/northern English Lass such as myself would possess such a gene! I'm blaming those Spanish conquistadors and my specific type is most commonly found in the Andean region of south america.

Nora--that information is wonderful. Thanks for posting it. I have biopsy diagnosed celiacs in my family and I am trying to convince them to do the gene test to see which genes are expressed. I feel that gluten intolerance is a spectrum disorder and I would love to see how genes play a role (as my Uncle tells me he would die it he ate a piece of bread, I just have intestinal problems, and one of my cousins gets depression).

I also wonder if there is a bias in the reasearch because so many test subjects are of northern european descent.

Okay, I have the results. I have neither of the main celiac genes but I do have one gluten sensitivity gene.

HLA-DQB1, ALLELE 1, 0301

HLA-DQB1, ALLELE 2, 0402

Serological equiv: HLA-DQ 3,4 (subtype 7, 4)

So, I am not celiac but it does support why I am reacting to gluten.

I am off to find out more info...

well, I am into week four of gluten-free and my issues are now starting to resolve. I have had on and off symptoms just like you and it seems complicated but I have figured out that the symptoms were from accidental glutenings, gluten-free packaged products, too many other grains and starchy foods, and dairy. When I eat very simple foods (meat, veg, nuts, friut) I do great!

This is my second attempt at gluten-free--I gave up last spring because I thought it wasn't working. Now I can see that it really does take time to heal.

I have discovered that lactaid is a help for me right now too--really made a difference to my remaining digestive troubles.

I go through bowls and bowls of hot air popcorn. Nothing wrong with that stuff!

Tasha, it's Save on Foods that will be trying to get it in here. Did you find Amy's and Tinkyada in a big grocery, or a health food in Victoria? Darn, I was just there the first week of Aug.

Maybe the save on foods manager could contact the manager at Planet Oranic (my second home here in victoria) and share supplier info? Here is a link to their website: Open Original Shared Link

Extreme fatigue, followed by stomach cramps, followed by the big "d", followed later by an itchy butt rash. It's lovely. Really.

I am having trouble with cc. I have bought myself cookie sheets, muffin tins, spatulas etc that are gluten free. I use separate butter and mayo etc. I have my own toaster. But somehow I am getting cc'd. So, say I make my child a sandwich and forget to wash my hands afterwards, is that enough to cc? Just wondering what you have experienced.

Chloe--I am so glad you brought this up in this safe place with these wonderful, supportive people. What you are talking about is called distorted body image--and you are NOT alone. It effects thousands of people. Usually people have these thoughts or feelings when something else is not quite right for them. It's complicated! If you ever used food to soothe youself prior to going gluten free there might be a connection. There is a book out there that is wonderful. It was written for people with eating disorders. I have read the book (no, I don't have an eating disorder per se but ike you was having some bad body thoughts I wanted to get to the bottom of and I was also using food to cope) and it really helped me overcome these thoughts and anxieties. You can look at this website: Open Original Shared Link to learn more about the book.

Take care of yourself!

LK

I've done it. It's actually pretty good! I am eating grains in small amounts now but still use almond meal by choice as my flour because it is much moister than rice flour. I suggest you read up on the specific carbohydrate diet and then modify it to suit your needs (this is what I have done and feel great). I did not feel deprived and loved learning to cook new recipes. And, now packaged food tastes dead to me so I remain happily cooking/baking from scratch.

I have been off gluten for a few weeks. Over the past few days my legs and arms have been burning they are so itchy. I don't see a rash--just intense itching. Is this part of gluten withdrawal or something entirely different?

Thanks for the well wishes. I am learning fast!

I was trying to figure out exactly what about the sushi I ate made me sick and discovered that imitation crab has gluten. Thought I'd pass that on for those who don't know yet.

I am in the healing process right now too. I have been on and off gluten for six months now and my dr tested for chrones and colitis because I still had d off gluten. For me, I had soft stools for a while a few times per day and then the d went from 3 times per day to 7 and the 14.

While searching the bookstore for answers I found a book called "Breaking The Vicious Cycle". 5 days on the diet I had my 1st normal stool in a very long time! I can't tolerate brown rice, potatoes--pretty much any starchy food, and lactose containing dairy. I cook my veggies very well and eat very plain food right now. Seems to be the magic formula. I have tried to rush introducing starches and raw food but it always takes me back to "d". I'm told that once the intestine heals I will be able to tolerate these foods once again. Try reading up on the Specific Carbohydrate Diet. I don't follow the diet exactly but the premise behind it makes sense to me.

Lenore

What's the scoop with mars bars?

Why didn't you order the Enterolab tests for gluten intolerance? This will give you something more medical if you feel you need it, even if your particular doctor doesn't accept Dr. Fine's test. At least with that test, you don't have to eat gluten.

Are you well now off gluten? Then just continue. Your doctor should realize that there are quite a few false negatives with blood tests. It seems silly to continue to be sick and accumulate enough damage that the antibodies show up in the blood or the villi have been damaged.

You know, I am now wishing I had ordered the full panel but I was trying to be cost effective! I had justified in my mind that if I have the genes then I will never again eat gluten so as not to trigger a response. I also thought it would be a good way to rule it out--you know, no genes, no celiac. Wishful thinking!

If it is in your family, you have a higher risk than normal; if you are of Irish decent, even higher.

Thanks--I may try your method if I have the courage! Yes, I am Irish. And it is my Irish side that all are confirmed celiacs. I guess the whole Irish conncetion is true then!

i had the anti tTG done in may and my result was 4. It needed to be 10 to be positive. So I continued to eat gluten, got terribly sick, stopped eating gluten and got well. My doctor (and I live in a place where you can't up and switch doctors because there simply are not enough doctors to go around) was adament that I must be ill for another reason so ordered barium swallow and enema and stool sample and blood samples galore and the cherry on top was a lactose breath test. So far all tests show nothing (still waiting on a collitis test that is being analyzed at the moment). I know deep in my heart and gut that I am gluten intolerant--otherwise why would I get well when it's out of my diet? I also have an uncle and 3 cousins who are bonified biopsy diagnosed celiacs. I know that if I am gluten free a biopsy would not be accurate. I just couldn't be sick anymore--I had to give up the gluten and live my life (the waitlist here for biopsy is very long). I have ordered the gene test from enterolab as a way to verify celiac disease. Am I on the right track here? Is it worthwhile for me to see a gi specialist? Or is it a waste of time? I wish in some ways I had been diagnosed because some people think this is in my head or that I am following a fad diet. I know biopsy is the gold standard for dx but can celiac be officially diagnosed through diet and the gene test?

Over the last 18 months I realize that I have withdrawn from most of my friends. I have been sick and feeling gross and worried about being near a bathroom, and feeling a little crazy. So I am sitting here realizing that is has been a very long time since I had a friend over for a cup of coffee or initiated any one on one social stuff. I am telling myself that this aspect of my life will all come back once I am better (and I am getting there fast). For the first time I am missing people where as when I was still very ill I didn't really care too much.

Any one else experience this and come out the other side?

If they had to sh**t 14 times a day those doctors wouldn't be so dissmissive. Sorry, I am bitter. Been told a few too many times that it's all in my head.

How long after being gluten free will it take for nutrient stores to be back to normal? I am sure it's different for everyone but does anyone know a timeline?

Thank you thank you! I think what you say makes perfect sense. I will add rice 1st and go from there. I don't think I will go back to those proccessed foods in any great quantity. Thanks again.

Hello! I havebeen on and off gluten for the past year or so after gradually getting sicker and sicker. The reason for the off and on was a negative blood test. I took the neg as permission to go ahead and eat as always. Of course, I wound up sicker than I have ever been. So last week I gave up gluten entirely. The 4 days ago I started the specific carbohydrate diet. The "d" stopped yesterday. I am happy! BUT since I have now eliminated all grains, starches, refined sugar, and lactose (still eating cheese so milk protien must not be the problem) so I do not know which one of these things caused my problems!

Any advice from someone whose been there? I think I should stay on the specific carb diet for a month or so and then start adding things back. But how and in what order?

Thanks so very much!

Lenore

I am considering ordering the tests from enterolab. I am wondering if anyone had negative blood test and a positive enterolab result. I am also wondering which test I really need. Is it worth it to do the full gene/gluten/dairy or ???

Thanks!