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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.

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12 posts in this topic

I have quite a huge story so here goes. 

 

At the age of 14 I was diagnosed with both PCOS as well as IBS.  I've suffered from depression, every once and a while a terrible headache and constant fatigue and occasionally experience heartburn and canker sores in my mouth since I hit puberty.   Whenever I had terrible stomach pains it was always pinned to be IBS and so I was given medication to help with that, but it never worked.  So I just figured everything else was a normal thing, and continued to live my life. That and I don't think I or my family really new anything about Celiac disease or Gluten intolerance. 

 

I moved out of my parents home and to a different country to marry and live with my husband this past July of 2013, So I'm now in the process of immigration.   Shortly after moving I began experiencing terrible headaches 3-4 times a week. I constantly had a headache.  Then, the fatigue kept getting worse and worse to the point I literally would sleep 10 hours and then take a 2-3 hour nap during the day. 

 

Then, the beginning of February I remember I ate a really wonderful wrap, which then gave me heartburn. The heartburn literally lasted 2 weeks nonstop and nothing I took made it go away, it was excruciating.  During that time I also started to experience terrible diarrhea.  

 

My first thoughts was that it was a gallbladder problem since I have history from my mother and her side of the family having gallbladder attacks, I'm just shy of Nineteen, so having a gallbladder problem when I am fairly healthy and young seemed to just not be right - None of my symptoms were matching much with anyone else in my family that had a gallbladder problem, and they suggested that it could be something else because of the color, texture and smell of my stool (Sorry for being blunt)  but after dealing with the constant need to visit the bathroom roughly an hour after eating something I looked into it more and have for now, self diagnosed myself with Celiac disease which was probably misdiagnosed as IBS.

 

I sprung into action and since my husband and I have just moved into a brand new place didn't have to worry about cleaning everything to make sure not to cross contaminate (All of our silverware, toaster, pots and pans, cups, plates ect. are all brand new)   

 

I've been gluten free for 48 hours now, one of my friends is diagnosed with Celiac and helped me gather a few things to eat and I'm no longer experiencing diarrhea after I eat but it is still irregular colored stool.  Now I'm feeling unsure of if I misdiagnosed myself because it seems awfully soon to see changes (My bowel movement are the only change, I'm still experiencing the headache and fatigue)

Currently I'm unable to have anything confirmed with a Dr. because I am not covered with insurance and so blood work and a potential endoscopy will cost me a fortune for being a newlywed... (But I will be visiting a Dr. in September when I'm back in the United States) 

 

How soon is it normal to be seeing changes in any of the symptoms I've been experiencing for several years? 

I'm so desperate to have relief for all of these things I've been experiencing and I don't want to waste the time and money on Gluten free if that really isn't the problem.  I've already gone and read the Newbie 101 post on Coping but either overlooked or just didn't see any information on a timeframe for seeing a difference? Is seeing a difference so soon a sign maybe it's something else?

 

Thanks in advance for all of the advice and help. 

 

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Welcome to the board.

 

Some symptoms can improve within days but others will take weeks, months or even years to improve. The fact that your D imroved already is on the fast side of things - so far so good.  ;)  Pale stools are (I believe) from issues with fat digestion and that can take months to improve. I'm guessing that will need a LOT more time.

 

Some people even get worse before they get better. Some experience withdrawal which can make you quite miserable for a couple of weeks, and then other symptoms will continue to pop up many months into the gluten-free diet.  From what I have seen, bloating, headaches and sometimes D are the first to improve. Eventually hairloss, fatigue, and skin problems follow suit. Symptoms having to do with joints or nerves seem to be the slowest to improve... These are generalizations though. It really is different for everybody.

 

Hope you feel better sooner rather than later.

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Hi and Welcome!

 

Just wanted to add that if you're unsure about your self-diagnosis and are unable to get tested, stick to the gluten free diet for a couple of months and then test it with a piece of regular toast of something.  Do it on a day when it will be ok to spend the whole day in the bathroom feeling miserable.  If during the 2 months of gluten free your symptoms continue to improve and you get a bad reaction upon reintroducing gluten then you'll have a definitive answer.  But you need to give it at least 2, if not 3 months to get it out of your system.  And you need to be prepared for a bad, potentially violent and painful reaction if you decide to test it out by eating gluten again.

 

The fact that you already see an improvement with the diarrhea is a good sign.  If your issues had nothing to do with gluten it would be unlikely that removing gluten from your diet would make any difference at all.

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Hello and welcome!

Good for you for playing your own detective when it comes to your health! That will serve you well. Stay curious and be willing to try new things that might make you feel better. Unfortunately doctors don't always know best, especially when it comes to the spectrum of gluten intolerance. (That does nto mean you should not see one, just try to find one that is supportive of your findings about your body.)

 

It's really hard to say how long your symptoms will take to subside. We are all so different! But if you eat nutrient-dense whole foods, rest as needed and stay hydrated, then you will be giving your body what it needs to heal. The improvement you have already seen is a good sign! For now I would say the best thing is to focus on improving your digestion/healing your gut, to make sure you are accessing the nutrition in the foods you eat. And, like Cooties says above, stay gluten-free for at least 2 months before you even think about re-introducing gluten. But know that if you should want an official dx you will need to do a gluten challenge.

 

Pale or clay colored stools can be a sign of biliary insufficiency (you are not producing/releasing enough bile and therefore not digesting fats properly, as nvsmom said above). Are you now or have you been following a low fat diet? That can cause the bile to become thick and viscous from lack of use, when it is supposed to be thin and watery. You could try taking bile salts, or try a raw beet slaw as a condiment daily, especially with meals that have some fat. Grate a raw beet, a raw carrot and a green apple, toss with lemon juice and olive oil. (Beet is a great bile thinner)

 

As far as the heartburn, this is often a sign of insufficient stomach acid (contrary to popular belief that it is from too much HCl). You might try taking a little apple cider vinegar in warm water before meals. This will help get your gastric juices flowing and that sets the stage for proper digestion and optimal nutrient absorption. Some people use digestive enzymes, too. Make sure you chew your food very well and eat when you are relaxed, not stressed.

 

I hope this helps!

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Thank you guys so much for the help and thoughts. 

 

This honestly, is terrifying to me.   I don't want to sound melodramatic but I don't know how I'm going to do this even though I know I have to. 

 

Only my Mother is being supportive of me, everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 

 

Based off of symptoms, I really think this is the issue but people are pressing me saying I probably have a parasite or it is just stress related -.- 

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Only my Mother is being supportive of me, everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 

 

 

Celiac is found in about 1% of the population but non-celiac gluten sensitivity (NCGS) is in 5-20% of the population (with 6-10% the most common stat). Really, 1 out of every 10 has an issue with gluten, so I think MORE people should be discovering that gluten is a problem - I think it's under diagnosed.

 

I would guess that 75% of us were told that it's all in our head, or it's stress related... It should almost be a celiac sign - "You've been told it's all in your head".  LOL ;)

 

Keep at it and you'll get your answer. A food and symptom journal will help you keep the "proof" straight. Many celiacs find it helpful to keep one while recovering.

 

Hang in there.

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You don't sound melodramatic at all! I was terrified, too. It's ok to be scared. You don't know what's going on with your body yet. I second the food journal rec. I kept one for 9 months and it was invaluable. Focus on simple WHOLE foods. These are the most nutrient dense and that's what your body needs to heal.

 

And the people who don't believe you...well, they aren't living in your body. You do not owe them an explanation at all and don't let their doubt drown out your gut instincts. Many people are scared by the idea of dramatic dietary changes in addition to being ignorant of this issue. Once you start getting better, some of them will come around. (Some will never, but that is not your problem!) All of my tests were negative, but I KNEW that I had DH. I had doctors tell me that there was no way I had DH (their reasons were not sound, but I will not go into that here) I finally found a doctor that supported me and believed me. Don't be afraid to keep looking for a doctor if the first one or two don't seem like a fit.

 

Stay strong! And sleep as much as you need. Your body needs it.

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 everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 

 

Based off of symptoms, I really think this is the issue but people are pressing me saying I probably have a parasite or it is just stress related -.- 

 

My own father says it's not a real disease and that I need to get tested. I keep reminding him I'm positive for two different biopsy procedures and all the blood work. He STILL doesn't believe me. He asks all the time. I keep saying I'm eating whole foods that I prepare myself. He can't get over it. Oh well. I do what's healthy and it sounds like you do too.

 

If your D is better, keep with the gluten free. It can't hurt to eat healthy, whole foods. 

 

Keep us posted and keep working as hard as you can. Stick with the gluten free to see if it helps. And try not to get discouraged. It's a slow process but worth it.

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I was laying in bed with my husband last night and really broke down and started crying. 

 

Every time we try and go to the grocery store I just want to run right back out.  Today I left in tears. 

 

I honestly feel awfully pathetic crying over food. . . because it's food, life goes on.  But imagining all of the things that I have to cut out that I enjoy and loved having every once and a while and looking into alternatives that are NOT cheap, seriously just breaks my heart and I want to have a meltdown :( 

 

I tried talking to my Mom today (who I thought was going to be really supportive and understanding, she is 3,000 miles away from me) and she kind of has done a 180 on the supportive scale.   When I'm whining about not being able to eat my favorite cake or pick up fast food once and a while. . . I DON'T want to hear "Well you can eat fruits and veggies" . . . .Or how I should be more positive. I have my whole life to learn how to be positive about this.  I've only really known for a few days and so I need some time to contemplate and get over the shock. 

 

I don't want people I'm going to for comfort to try and make a positive situation out of this like "You'll lose the extra weight you didn't know why you couldn't shed" or "imagine how much better you'll feel"  or "Now you'll really have to be super healthy and that's great!"  . . . why the heck would you say that to someone who doesn't a free day to eat whatever they want? 

I'm sorry for being so whiney, I really just can't believe this is happening to me.

 

I'll try and keep doing updates on how I'm feeling, thanks for all the kindness and support.

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I'm glad you got all of that out of your system.  Many of us have left a grocery story in tears in the beginning.  But now its time to get serious and live gluten free if that's what you choose to do.  Please keep in mind when you come back to the States later this year to see a Doctor that he will not be able to do any testing without a full gluten challenge.  Choose whole foods for now, no more than 5 ingredients is a good rule.  Check out the Whats For Dinner Thread for meal ideas.  

 

One more thing, it's time to stop feeling sorry for yourself.  One pity party a year is all that's allowed  ;)

 

Good Luck

 

Colleen

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First, lose the obvious gluten foods (breads/pastas).  Focus now on what is naturally gluten free.  Breakfast: Eggs, butter, bacon, ham, potatoes...make omelets with vegetables, cheeses.  (All that is missing is the toast.)  Cereals - there are gluten free rice cereals; add fruit.  For muffins, make your own corn muffins (Redd's is a good mix), and add blueberries, etc.  

 

Lunches:  Yogurts with added fresh fruits.  Rice cakes with peanut butter/jelly.  Salads with cheese and bits of meat or egg.  Boar's head deli contains no gluten.  Canned soups (just check the ingredients - Progresso makes several gluten free per normal).  Leftovers from dinner.  Use olive oil and vinegar (not malt) - commercial salad dressings usually contain gluten.

 

Dinners:  boiled ham and cabbage;  ground beef stuffed cabbages or peppers;  corned beef & cabbage - don't forget the carrots, potatoes.  Beans and rice with salad.  Rice pilaf with bits of meat.  Mexican food - corn hard shell tacos.  Baked potatoes with chili.  Steak and veg; baked chicken with potatoes/veg.  Porkchops and saurkraut in a crock pot.  ---  When I stopped the gluten, it started to come to me how many things I eat are naturally without gluten. Do not fret.  They sell Rice wraps too - go for it. :)  

 

I did not find it difficult to go without bread.  If you love pasta tho, I suggest under sauces and such try a spaghetti squash; delicious.  I tried a box of gluten-free Barilla pasta and while it is ok, I'd honestly prefer not to bother with it at all; it just reminded me of how it was not the real thing.  I don't expect squash to taste like pasta; but I expect pasta to taste like pasta.  Eventually, you'll find recipes and resources for the things you miss - gluten-free pizza dough and pasta substitutes.  Even bread, tho I hear what you make yourself (if you get the right recipe - do the research) is better than store bought gluten-free bread.

 

While you focus on eating whole foods and what is naturally gluten free for a few weeks, you don't have to worry about it, and it gives you time to research where the hidden gluten is.  Read labels always, and use the internet.  

 

I tried a wonderful black bean brownie recipe - amazing.  I used eggs which made it not vegan, but if you read the comments, you'll see the recipe is versatile.  THAT is what you need to be looking for.  Anyhow, here is the page for that:  http://minimalistbaker.com/vegan-gluten-free-black-bean-brownies/

 

Interesting you felt your symptoms were gall bladder related - so did I.  I am diagnosed as non-celiac, but I believe I am gluten intolerant/sensitive, and I don't need my doctor's permission to eliminate gluten.  Am only 4.5 weeks now gluten free.  Within 6 days, the BMs were different.  They are getting more "normal" as I progress, and that is the biggest change thus far.  I do not miss bouts of constipation/explosive D.  I find I am not hungry, and rarely have a craving for anything.  Food leaves me satiated, and doesn't set me up for a continuous grazing feeling.

 

Get yourself a probiotic and a good multivitamin.

 

I hope you stick with gluten free, use the internet, and keep a journal about how eliminating gluten has you feeling. Good luck and heal.

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Thank you guys so much for the help and thoughts. 

 

This honestly, is terrifying to me.   I don't want to sound melodramatic but I don't know how I'm going to do this even though I know I have to. 

 

Only my Mother is being supportive of me, everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 

 

Based off of symptoms, I really think this is the issue but people are pressing me saying I probably have a parasite or it is just stress related -.- 

 

 

You're not alone - the majority of people feel terrified when they first figure out they have a disease - whether it's an official diagnosis from a doctor or not.  Take it one step at a time.  And as you start to heal and become healthy again you'll start to feel better and it will start to become easier.  And once the people around you realize that you're now healthier than they are and have more energy I would be willing to bet that they'll start to come around.  And even if they don't you won't really care because you'll be feeling better.  :)

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