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.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can 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-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is 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 Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Where can I buy gluten-free stuff?
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Hi! I was officially diagnosed a couple of months ago now but I have been gluten free for about 4 months since my endoscopy. However, in the last month I have noticed some worrying post diagnosis and treatment symptoms. My appetite has shrunk enormously. I used to be able to eat bowls and bowls of food and still be hungry, I could consume food even when full and I was constantly snacking. I understand over eating is a big part of celiac disease before going on a gluten free diet but food is such a huge part of my lifestyle. This last month I feel as though I have lost myself a bit as huge parts of my character like my love for food, huge appetite and my non fussy nature have all been turned upside down. I could easily not eat any snacks in a day now and not have to have all my meals. I thought I might have lost weight so I weighed myself on the same scales I did a couple of months ago. I am a young tall girl and was 10 stone for the last year at least. In the last few weeks I have lost half a stone which is 7 pounds and am now 9.5 stone. This is not intentional and I did not aim or want this to happen so I am concerned about any continued lack of appetite and weight loss in relation to my health. Therefore, I am going to weigh myself each week and make sure I am eating all three meals. If it continues I'll visit the doctor. Also, I am noticing fatigue still which was a huge part of my pre diagnosis symptoms. I get to a certain point in the afternoon where I feel like I need to go home and rest because I can no longer continue. I have no stamina and it is restricting my freedom, which I feel has already been taken from me as a result of this diagnosis that came at a frustrating point in my life which was a huge nuisance. Finally, I am also finding it a bit of a struggle to get my head around the whole thing still and to understand what it means for me and my life. I am very worried and scared that it will impact me not just physically but mentally and socially and it scares me. I guess this was more me getting all this off my chest and into the open, if anyone has any advice or feedback I will be hugely grateful.
I've lost 3-4 pounds. It surprises me, as I would have expected to lose more, considering how limited my diet has been, how sick I was since early May, and now walking 35 to 45 min. after dinner. I think it's the increased gluten-free bread and shortbread cookies. I've eaten more of these as they settle my stomach and are safe when I'm not sure what else will work. I think I may also be having more sodium, so there may be a bit of water weight.
I am actually doing better. I've been on Famotidine 20 mg., 2x daily for about 9 days, and added Vit D a few days ago. I've been able to drop one of 4-5 stacked pillows at night, and will try dropping one more tonight. I am down to Tums (1500 mg.) around 3-4 a.m. for mild heartburn / upset stomach, and again when I get up. Not much else, maybe occasional simethicone.
i tried returning to a salad at dinner, just lettuce, tomato, and onions, but seemed to have more trouble overnight, so quit. I'm mostly eating an egg with toast, well cooked sweet potatoes/mixed veggies, tuna, some salmon, hamburger, chicken, Ian's fish sticks, bone broth, Schar's breadsticks and shortbread, some soy milk or macadamia milk, and the bakery gluten-free bread.
Welp, according to the lady at the gastro's office, my tests were all "fine" and I don't have cancer or celiac. I asked for a copy of the report so hopefully that will happen.
I guess I will follow up with my family practice doctor and see what they think I should do next, but I am not going to go back on gluten again. My eye doctor is concerned about an inflammatory condition in my retinas, that is rapidly advancing over the last year and thinks that anything I can do to decrease inflammation should be done. So to me, that means sticking with gluten free and lots of vegetables, especially the leafy greens.
Also need to figure out why my liver enzymes are elevated. This is the third time in the last 9 years according to my old labs.
I've gone over all my supplements and my one medication (compounded thyroid) to make sure they are all gluten-free. My plan is to live like I have celiac disease from here on out. My only dilemma is what to give people as a reason why I can't eat the food they make for me. For now, "Gluten makes me deathly ill" is going to have to be good enough.
thank you all for the help and advice! I've found a wealth of information here and am currently reading Dr. Fassano's book and a couple of different threads on this forum that are incredibly helpful.