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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newly Diagnosed
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Hi Everyone,

I am newly diagnosed and have gone gluten free for about a month. When I was diagnosed with Celiac I was shocked because I really didn't have blatant symptoms. I have been gaining weight over the last few years and couldn't understand why because I eat a healthy balanced diet. My doctor did a very thorough blood work, tested me for hypothyroidism and Celiac. To my horrific surprise I was positive for both. He informed me that eating gluten was no longer an option for me, any my hypothyroidism is a result of gluten intake. Since going gluten free I feel as though Pandora's box has opened. I felt fine the first two weeks but now I am having intermittent issues of constipation, sandy, grain-like loose stools, stomach sensitivity etc. To make matters worse, I accidentally ate something with gluten last night and paid a serious consequence of diarrhea, with stomach cramping. What is going on? zI never had any of this before going gluten free! It is hard enough transitioning to such a strict lifestyle but I feel worse now, than before when I was eating gluten. Has anyone else had a similar experience? The other question I have is: Does anyone have any idea how long it takes to recover from being glutened?

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Good for your doctor! Everything you are going through is very normal. When you remove a toxic poison from your diet, your body notices!

It can take awhile for things to resolve. Stick to whole foods diet for a few months- stay clear of gluten free processed foods for now.

Digestive enzymes can help get your gut bacteria back in harmony.

As for reacting to gluten now when u didn't before, also common. Your immune system is recovering enough to make a stronger stand against what it sees as poison. It is actually a good thing- but it doesn't feel very good!

So, get a bottle of Braggs Apple Cider Vinegar and keep it on hand for accidental glutenings. A tsp in a glass of water gives you serious pain and nausea relief!

Also, educate yourself about how to be gluten free- it is a learning process! You need to toss plastic ware, wood utensils and scratched enamel and teflon cookware- it holds gluten. You need a new toaster and cutting board and will need to do a deep clean of your kitchen. Avoid restaurants for now, the risk of cross contamination is very high and when you are trying to recover you really don't need the setback of accidental glutenings!

Lastly, spend time here. You will learn LOTS!

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Welcome to this board. I also am relatively newly diagnosed, although about 2 months ahead of you. There is much research being done concerning the fact that about 30% of Celiacs experience weight gain instead of weight loss, which you and I have both experienced. Most Dr's look for the weight loss before they even think about testing a patient for this disease...sadly that is still a prevalent note.

I do not at this time have any problems with my thyroid, however, my liver and gallbladder took the huge "hit"! There are many other symptoms I have had, but not ones that "screamed" test me for Celiac. If my Uncle had not been diagnosed, and my brother having similar symptoms, the connection to a hereditary disease probably would not have been made...and I would still be in so much agony.

My first week of being gluten free was amazing! And like so many have said, "clean the kitchen" ridding any gluten exposure! Oh, and NO processed foods and lots of liquids to flush this poison out. I lost 11 lbs that first week! I attribute that loss to the edema and inflammation build up in my body being "flushed" out of my system. Since then I have lost about one lb per week, now at 20 lbs lost...with another 20 to go to be at my goal. I am not starving either!! Before being diagnosed, I really fought weight gain and literally felt I had to starve myself to lose a pound. Now, I understand why. There is a great article on this site by a young woman who experienced the same symptom. Surprised the Dr too! It seems our immune system is so "whacked" that it can tell our body to store fat because it is fighting the gluten and will need that extra storage for the battle. Also, the inflammation in our joints and muscles is a normal reaction in that fight! I also had "frozen shoulder" which has totally abated at this point and my liver enzymes are almost completely normal!!

Give yourself time and patience. Think about how long your cells in your body have been fighting and taking a beating! I kind of thought about this diet as one being similar to a baby trying to digest in their new system. So "babied" myself...soft foods are easier to digest, use your blender to make veggie and fruit "shakes". Eat yogurt as a natural probiotic if you are not lactose intolerant, everyday. Make sure you have some type of vitamin supplement going on as well. Nature Made are gluten free. I added Vitamin B12 sublingual to my daily supplements along with Vit C, Omega 3, Multiple Vitamin without IRON because my ferritin level is somewhat high, I also added Calcium because my Uncle who was Celiac developed Osteoporosis.

I don't overdue on the excercise yet. My poor joints and muscles really took a beating! Now, I have noticed my skin is "sagging", so I really need to work on that. OH, and vitamin D...I take some sun every few days for the natural absorption and really careful not to take too much.

Wishing you well on this new journey...we have much to do!! :)

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Welcome to this board. I also am relatively newly diagnosed, although about 2 months ahead of you. There is much research being done concerning the fact that about 30% of Celiacs experience weight gain instead of weight loss, which you and I have both experienced. Most Dr's look for the weight loss before they even think about testing a patient for this disease...sadly that is still a prevalent note.

I do not at this time have any problems with my thyroid, however, my liver and gallbladder took the huge "hit"! There are many other symptoms I have had, but not ones that "screamed" test me for Celiac. If my Uncle had not been diagnosed, and my brother having similar symptoms, the connection to a hereditary disease probably would not have been made...and I would still be in so much agony.

My first week of being gluten free was amazing! And like so many have said, "clean the kitchen" ridding any gluten exposure! Oh, and NO processed foods and lots of liquids to flush this poison out. I lost 11 lbs that first week! I attribute that loss to the edema and inflammation build up in my body being "flushed" out of my system. Since then I have lost about one lb per week, now at 20 lbs lost...with another 20 to go to be at my goal. I am not starving either!! Before being diagnosed, I really fought weight gain and literally felt I had to starve myself to lose a pound. Now, I understand why. There is a great article on this site by a young woman who experienced the same symptom. Surprised the Dr too! It seems our immune system is so "whacked" that it can tell our body to store fat because it is fighting the gluten and will need that extra storage for the battle. Also, the inflammation in our joints and muscles is a normal reaction in that fight! I also had "frozen shoulder" which has totally abated at this point and my liver enzymes are almost completely normal!!

Give yourself time and patience. Think about how long your cells in your body have been fighting and taking a beating! I kind of thought about this diet as one being similar to a baby trying to digest in their new system. So "babied" myself...soft foods are easier to digest, use your blender to make veggie and fruit "shakes". Eat yogurt as a natural probiotic if you are not lactose intolerant, everyday. Make sure you have some type of vitamin supplement going on as well. Nature Made are gluten free. I added Vitamin B12 sublingual to my daily supplements along with Vit C, Omega 3, Multiple Vitamin without IRON because my ferritin level is somewhat high, I also added Calcium because my Uncle who was Celiac developed Osteoporosis.

I don't overdue on the excercise yet. My poor joints and muscles really took a beating! Now, I have noticed my skin is "sagging", so I really need to work on that. OH, and vitamin D...I take some sun every few days for the natural absorption and really careful not to take too much.

Wishing you well on this new journey...we have much to do!! :)

GladGirl, do you happen to have the name of that thread about fighting to lose weight, or a link to it? I'm really struggling right now! Gluten free for only 3 weeks. It used to be that if I changed my diet, I could lose 6 pounds of water weight almost instantly. This time around, the first time I've ever gone truly gluten free, I am still quite swollen, and can't seem to lose an ounce. I have not replaced my gluten with "gluten-free" products, but have gone to very little grain at all. I'm so frustrated. And so hungry!

Sorry to interrupt the thread...

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GladGirl, do you happen to have the name of that thread about fighting to lose weight, or a link to it? I'm really struggling right now! Gluten free for only 3 weeks. It used to be that if I changed my diet, I could lose 6 pounds of water weight almost instantly. This time around, the first time I've ever gone truly gluten free, I am still quite swollen, and can't seem to lose an ounce. I have not replaced my gluten with "gluten-free" products, but have gone to very little grain at all. I'm so frustrated. And so hungry!

Sorry to interrupt the thread...

Here is the link to her story....also if you google obesity and Celiac Disease many other studies about this will come up to read...

http://www.celiac.com/articles/1033/1/Celiac-Disease-and-ObesityThere-is-a-Connection-by-Melissa-Croda-q/Page1.html

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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