This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
You should be happy that you have a diagnosis. I know you feel awful and it is overwhelming. I think most of us go through this. I found out in April and I was misearable just like you. In my case it has taken a long time to feel better. It is now 7 months later, and I have to report that I feel about 70% better, but i have more to go.
Celiac disease has a momentum to it. It does not just magically clear up, regardless of how hard you try. It may take up to a year to feel like your old self. The hardest part for me was to understand that notion. If you are constantly questioning the disease, or asking why am I not feeling better yet, you are just spinning your brain in knots. I have done plenty of this but I can now look back and say that I am feeling better. I think you will will too.
Focus on eliminating the gluten at first. Also try dairy, as that is easy to avoid and has a big impact. Not just milk, look for anything with Lactose in it. When you think you have stabilized, you can start to explore other foods. I will say that early on, you will have no way to know whether it is a certain food, celiac, lack of sleep, depression, anxiety, etc. It is hard to diagnose when the food test and results are so hard to match up with each other.
Just know that you are headed in the right direction, keep your vision on a future where you know you feel better, and you will get there.
I have been gluten free since april with not too much improvement in GI symptoms. I reached out for an allergy test and when I spoke with the doctor there, she stated that I really should be on a bland food diet. Since going gluten-free i have been eating fruits, vegetables, nuts, and meats constantly. I have lost 25 lbs from the diet but my intestinal tract has not been happy at all. She stated a few things:
1. Fruits that are high in acid are really not helpful to heal an inflamed gut
2. Raw vegetables are too hard to digest
3. Nuts are extremely hard to break down in an inflamed gut
4. Red meats should be avoided.
5. Coffee and Alcohol should be cut out
She stated that I should be eating a diet heavily weighted towards simple, "mushy" foods. Such as bananas, vegetables that are cooked down to be soft, potatos, lightly seasoned chicken and fish, etc. basically baby food like things until I feel better down there.
I guess that is why I am responding to yuor post. It sounds like what I have just learned from this doctor is relevant to you since you seem to eat a lot of raw fruits, vegetables and nuts. I was surprised to learn that this diet could actually be extending the healing process, when I thought it was beneficial. I have just started the bland diet and hope it helps. Perhaps it would help you too.
Thanks everyone. I have an appointment with a dietitian on friday. I wrote this post last thursday after feeling like I took a major step backwards. Things improved a whole bunch on friday and I felt good. It just shows that it is quite an up and down thing while my body heals. All I can link it to was a glass of whisky i had the night before. I have read that distilled spirits do not contain gluten, however that was the second time I had a glass and the next day felt bad. just going to have to stay away until I am healed and then I can slowly test it.
I have decided to really own this condition and do what I have to do, such as really pay attention to the food I eat, and not only that, change the way I think about food. Its a new day. My psychological issues seem to be getting a bit better too. I cant wait to see how I feel in 6 months!
Thanks for the support. I am sure there will be more times when I feel bad and will call on it again.
Thanks guys. I just received and email from the dr. and to his credit, this is what he says:
"This is not the classic finding in celiac disease, but it certainly
could represent mild, early, or partially treated celiac disease. The
real test is how much better you do on the diet. Since you are feeling
definite improvement, I think you do have perhaps a mild form of
So i guess you are right, for them to be confident, it needs to say something like total atrophy or it was totally obvious. But at least he came around to what we believe is common sense.
So i got my records from Kaiser today and wanted to share them for your input. I quote: (and this is ALL it says)
"the duodenal biopsies show focal partial villous blunting, the significance of which is unknown. the majority of specimen shows no evidence of villous blunting. please refer to the clinical information for additional diagnostic assessment"
looks like they took 5 specimens from the duodenum and four from the stomach (for H pylori). Ok so from what I see they do not mention IEL count, crypt/villi length ratios, etc. either they don't see anything or they aren't looking for them. Either way they should have written something about that in the report. Secondly, why would my GI tell me that the biopsy showed no classic signs of celiac disease, when in fact the ONLY thing it says it that there is some evidence of a classic sign of celiac? I am very confused. I am glad i got this report for myself. I think it confirms that I have all three legs of the stool (no pun intended), blood test, biopsy, and symptoms of celiac, as well as i feel better off gluten.
Thanks for your help and advice, i appreciate it.
Thanks, I agree and asked him for the report straight up. My problem is i have Kaiser and can't go to a new doctor. They are a closed system. maybe I could ask for a second opinion but thats about it. I really need to get the biopsy report and read it for myself. I am also just frustrated that there is no clue as to the follow up. what do I do with my diet? are there more test? could it be other things? why was my blood test so positive? I am really pissed.