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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 Gluten-Free recipes: Gluten-Free Recipes
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LilyBujak

Symptoms still persisting

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I was diagnosed with celiac disease about a month ago and have adhered to the gluten free diet ever since. However, I have not felt ANY better. I have constant stomach pain, fatigue, and severe acid reflux and bloating. Although I did notice a slight difference for a few days, I am back to the symptoms. They are worse than when I went in and got diagnosed. Last night I ate dinner (gluten free I double checked) and spent the rest of the night throwing up and having completely watery diarrhea. I am 5’6 and weighed about 135 before diagnosis and am down to 114 today. I was 118 when my dietician checked on Friday. Is this something I should go to the doctor about again? Please help cause I’m starting to think I will never get better!!!!! 

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Posted (edited)
20 minutes ago, LilyBujak said:

I was diagnosed with celiac disease about a month ago and have adhered to the gluten free diet ever since. However, I have not felt ANY better. I have constant stomach pain, fatigue, and severe acid reflux and bloating. Although I did notice a slight difference for a few days, I am back to the symptoms. They are worse than when I went in and got diagnosed. Last night I ate dinner (gluten free I double checked) and spent the rest of the night throwing up and having completely watery diarrhea. I am 5’6 and weighed about 135 before diagnosis and am down to 114 today. I was 118 when my dietician checked on Friday. Is this something I should go to the doctor about again? Please help cause I’m starting to think I will never get better!!!!! 

It can take months to heal.... but who made this supposedly gluten-free dinner?  There is more to it than just gluten-free ingredients.  You might be better off sticking to some simple gluten-free food you fix yourself for a few months.

Read the newbie thread for some tips.

 

Read the newbie thread for some info.  

 

Edited by kareng

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Gluten free medically is different then fad,  your food has to be prepared in gluten free dedicated cook ware. Gluten is a protein smaller then a germ. You sort of have to decon your kitchen and replace several kinds of cook ware like new colanders, wooden spoons, scratched pots, pans, Tupperware etc. New condiment jars (butter, jam, nut butter jars often get contaminated by spoon to bread/gluten food to jar. etc.
Eating food prepared by someone else in a non gluten free cooking area on glutened cookware....gets you sick and one exposure can leave you sick for weeks to months.
When you start going gluten free, then reintroduce gluten with this disease, your immune system goes on a rebound attack and the symptoms get much worse. SO after going gluten free, exposures to even tiny amounts will normally have much worse reactions.

For now go to a whole foods only diet, eat only food you cook, avoid processed foods for now til you heal a bit. Simple meals low on sugars and carbs if you can to ease the bloat. Get crockpot liners and do crockpot meals of chicken and veggies in bone broth, or crockpot roast. Sheet pan meals on foil lined sheet pans of soft meats and veggies. Eggs are nice, and can be done hard boiled cand chopped up in meals, scrambled, or omlettes.

Few simple hacks and to start off cheap.
Foil Line Baking dishes/cookie sheets for safe cooking and easy clean up
Freezer/butcher paper down on your counter for a safe prep area and again easy clean up
Crock pot liners for your crockpot for safe cooking area, and easy clean up
Nordicware makes microwave cookware for quick cheap, and safe ways to start off, they have omlette makers, steamers, grill plates with covers, rice cookers etc.
PS
It is also not uncommon for us to develop other food issues, sensitivities and intolerance issues. Keep a food diary and record what you eat, how you fix it, season it etc. and how you feel and time frames. Might help you find out other foods that are bothering your. Also remove dairy and oats, Dairy is a common issue as the enzymes to break it down are not really going to work that well with damaged villi, you can try reintroducing it when they heal. Oats are commonly contaminated.
https://www.wikihow.com/Keep-a-Food-Diary
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

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Oh hon I am so sorry you feel that way! I had the exact same symptoms before I was diagnosed. There are a LOT of foods that have hidden gluten - buillon cubes got me many times before I found out some can have wheat in the yeast. Drinks and drink additives like creamer and stuff for coffee too. If you haven’t already, find an app you like that has a setting for allergies (I use the ShopWell app) and scan all the food barcodes of what you’ve been eating. I’ve found many surprising foods with gluten, that I thought were safe. 

 

That being said, it can take weeks or months to fully heal, and it’s possible you have an IBS type thing going now, from the intestinal damage. It took me months for those symptoms to fully go away. I felt better immediately, of course, but it was a long road. I would call or email your dr, and see if they want to see you again. I have a medication from my dr, that I take if I accidentally eat gluten - it stops the intense stomach pain and cramping and diahrrea, if I take it within 15-20 minutes of eating gluten. Called Dicyclomine. It helped my stomach calm down fully initially, and now I only take it when I eat gluten on accident. 

Hope this helps! Keep your chin up, it does get better and easier, I promise. It’s been 4-5 years since I was diagnosed, but I’ve had it my whole life. So I totally understand! Good luck!! 🍀 ~Michelle~

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Thank you for being the only one who didn’t accuse of glutening myself!!! I follow a STRICT diet. My titer numbers were 1:320. I have separate cookware, toasters, and utensils. My grandfather and grandmother, who I live with, have adopted the diet for dinners so there is no chance of cross contamination. If there was any doubt that I had glutened myself I would not have posted on here looking for answers! I understand that it takes time to feel better but symptoms are worse than before I was diagnosed! I will check with my doctor and thanks for the input :)

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18 minutes ago, LilyBujak said:

Thank you for being the only one who didn’t accuse of glutening myself!!! I follow a STRICT diet. My titer numbers were 1:320. I have separate cookware, toasters, and utensils. My grandfather and grandmother, who I live with, have adopted the diet for dinners so there is no chance of cross contamination. If there was any doubt that I had glutened myself I would not have posted on here looking for answers! I understand that it takes time to feel better but symptoms are worse than before I was diagnosed! I will check with my doctor and thanks for the input :)

 

How could we know all that from your first post?  It sounded like you ate at a restaurant or a friends house. Most people who have only been gluten-free for a month are still trying to figure it out.  

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One thing to consider is that you may be eating very differently than before. Healthier but a sudden diet change can cause issues.  For example, more fiber, less fat, etc.

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