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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 Celiac.com's FREE weekly eNewsletter   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 Gluten-Free recipes: Gluten-Free Recipes
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amyesnipes

New to the gluten free life, please help!

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Hi everyone! I am completely new to gluten free living. 

I have severe hypothyroidism, fibromylgia, an anxiety/depression disorder and some other smaller problems. Through research I have found that gluten can attack the thyroid and cause fibro and depression symptoms to worsen. I went gluten free last Monday. My main question is how long does it usually take to start feeling a difference? Is it different for everyone? I was gluten-free for 5 days and then slipped up and had a good amount of gluten this weekend. I now am very itchy and have a very upset stomach. Could these be from the gluten even though I have only been gluten-free for 5 days? 

 

Thanks for the help!!!!

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Recovery times vary, and we all have slips in converting the the gluten-free lifestyle. I went five years with overt symptoms before diagnosis. After going gluten-free I continued to have symptoms for 4-6 months, while my intestines healed. 

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Welcome.  A gluten free diet has been reported to be helpful for those with autoimmune issues like thyroiditis, but I would encourage you to get tested for celiac disease first.  It might be the root cause of many of your symptoms but you need to be consuming gluten for tests to be accurate.  Learn more about testing: 

http://www.cureceliacdisease.org/screening/

and the reasons why....

https://celiac.org/blog/2016/09/9-reasons-you-should-be-tested-for-celiac-disease/

 

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I second cylinglady on the getting a offical diagnosis if you have not already for celaic or at least getting tested. Do it now before going completely gluten-free. The testing requires that you be consuming gluten, not much just a cracker a day or half a slice of bread for about 12 weeks prior to a blood test and  2 weeks for the endoscope.

On other notes welcome to the forums lets start with a bit of a introduction guide for you to read over, https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Now lets see if we can not address some of your concerns, the anxiety and depression could in fact be made worse if you have nutrient absorption issues. I might suggest getting checked, common ones are B-vitamins, Iron, Niacin, Vitamin D and E, Magnesium, and a few others. We are each different in ones we end up with issues with and have to work with a dietician about balancing it out. You will probably have to take supplements for these for awhile if any are the issue. B-vitamins, magnesium, and calcium can be huge issues with the anxiety and depression department. I might also suggest taking a digestive enzyme and probiotic if you have fibo.

We normally suggest a whole food diet for those who are diagnosed with celiac for the first few weeks or months to help jump start the healing process. I will also share some other products, and links for replacement foods, places to shop, and listing of UPC codes and how to get them from either your local grocer, the company themselves, or a online retailer like thrive.

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

As we are all different you might comeaccross other things you react to like oats, or other grains, or have odd intolerance/allergies develop. A food journel will be a life saver for eliminating and tracking these down if they develop. Just write down what you each day and note how you feel, like your gut, mind, energy, etc. afterwards for a few hours. You might find some odd patterns, that will help you build a diet.

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Hello and welcome Amy, you've found a great site!  :)

12 hours ago, amyesnipes said:

Could these be from the gluten even though I have only been gluten-free for 5 days? 

Yes, that reaction could be a sign that gluten is an issue for you.

I'll third what CyclingLady said above. I'm sure you're anxious to keep the diet going to see if its the source of your problems, but now is the time to get a definitive answer as to whether you're celiac or not. It's a lot harder once you've been off for awhile, but that's what you'd need to do to get tested. Ask for a full celiac panel blood test and make sure you keep eating it every day till the results are in and you've discussed them with a doctor. They may want an endoscopy to confirm.

Once tests are complete then give the gluten-free diet a try REGARDLESS of whether your diagnosed celiac or not. I was negative for celiac but gluten free has resolved many issues for me including anxiety and depression.

Best of luck!

 

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You really need medical advice. Any significant changes in diet should be approved by a doctor. Gluten is not evil. Most if us here have a disease that prevents us from eating it, among many other difficulties.  Go get checked out.

My gi recognized my celiac disease during a routine endoscopy. All following tests confirmed it. Go get tested. It really is very easy.

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On 3/13/2017 at 5:34 PM, Specialguest said:

You really need medical advice. Any significant changes in diet should be approved by a doctor. Gluten is not evil. Most if us here have a disease that prevents us from eating it, among many other difficulties.  Go get checked out.

My gi recognized my celiac disease during a routine endoscopy. All following tests confirmed it. Go get tested. It really is very easy.

While it is always better to have an official diagnosis, unless you know nothing about nutrition, you don't need a doctor's advice or approval to eat gluten free.  The dietary change is not that significant, unless you survive on fast food and cupcakes. It only requires that you eat healthy and the vast majority of healthy, whole foods are gluten-free. There is also good gluten-free bread that is nutritious to replace the gluten filled stuff we can no longer eat.......in fact, a lot of regular bread is crap and offers little in the way of real nutrition.

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I just left the Dr's office. He said he doubts my symptoms are related to gluten....supposedly I have too many ailments for them to be linked to gluten. He didn't even want to do the test. I love my Dr, he has been amazing up until now. 

Should I go ahead with the gluten free diet to see for myself if it works for me? It's s healthy lifestyle anyway right?

Thank you all so much for your input. I greatly appreciate all the help!!!

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You can go gluten free, ( I would with hypothyroidism and Fibro), but seriously, I would get a second opinion.  Why are you hypo?  Did your doctor run a thyroid antibodies test?  Does he/she know anything about celiac disease?  I just took my FIL to his doctor and she was clueless about celiac disease!  Okay she mostly see geriatric patients, but you can develop celiac disease at any age!  

Celiac disease affect many body systems:

http://www.montana.edu/mountainsandminds/2012/fall/celiac.php

I like my Internist and my daughter's doctor, but both are clueless about celiac disease too.    My Internist in all fairness works with over 2,000 patients.  She can not know everything!    I also find that if you document your request in writing, doctor's tend to respond better.  Yep, a letter works.  If your doctor is wrong and you have celiac disease, you have a leg to stand on.  

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On 3/17/2017 at 3:15 PM, cyclinglady said:

You can go gluten free, ( I would with hypothyroidism and Fibro), but seriously, I would get a second opinion.  Why are you hypo?  Did your doctor run a thyroid antibodies test?  Does he/she know anything about celiac disease?  I just took my FIL to his doctor and she was clueless about celiac disease!  Okay she mostly see geriatric patients, but you can develop celiac disease at any age!  

Celiac disease affect many body systems:

http://www.montana.edu/mountainsandminds/2012/fall/celiac.php

I like my Internist and my daughter's doctor, but both are clueless about celiac disease too.    My Internist in all fairness works with over 2,000 patients.  She can not know everything!    I also find that if you document your request in writing, doctor's tend to respond better.  Yep, a letter works.  If your doctor is wrong and you have celiac disease, you have a leg to stand on.  

Thank you for the advice. He did do the blood test for my thyroid so hopefully he can get that on track. I was diagnosed about 5 years ago and still have not gotten my levels right. 

I'm going to ask around to see if anyone I know has a Dr that knows about celiac's. 

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On 3/18/2017 at 3:35 PM, amyesnipes said:

Thank you for the advice. He did do the blood test for my thyroid so hopefully he can get that on track. I was diagnosed about 5 years ago and still have not gotten my levels right. 

I'm going to ask around to see if anyone I know has a Dr that knows about celiac's. 

I have both Celiac and Hashi's and the comment about you having too many symptoms for it to be Celiac means you need a second opinion, no matter how wonderful your doctor has been to you.  That is the very definition of a Celiac....someone who appears to be falling apart with a number of seemingly unrelated symptoms.  Not to mention they have failed to get your thyroid balanced in 5 years?  That probably means you are not absorbing your meds correctly so your thyroid will remain wonky until you absolutely rule Celiac in or out.  If after all testing things are still inconclusive, then I would go on a strict gluten-free diet and see if it helps.  But you have to give it at least 6 months.

I was diagnosed with Hashi's at least 15 years before the Celiac.  My thyroid was never right until I went gluten free. I kept needing higher and higher doses, because my intestines were becoming more and more damaged.  Don't let that happen to you!

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I'm sorry you had to go through that! It is so frustrating. Thank you for your suggestions. I'm going to get a second opinion. 

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On 3/17/2017 at 7:01 PM, amyesnipes said:

He said he doubts my symptoms are related to gluten....supposedly I have too many ailments for them to be linked to gluten.

As others have said as Celiac affects the auto immune system it can present in a lot of different ways or none, here's a short summary:  http://www.cureceliacdisease.org/symptoms/ and here's a much longer list of associated conditions:  https://glutenfreeworks.com/gluten-disorders/symptom-guide/  It would be easier to list things that it can't affect! :D

Again, once testing is complete, even if negative, please give the gluten free diet a proper chance. 

Best of luck to you :)

 

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22 hours ago, amyesnipes said:

I'm sorry you had to go through that! It is so frustrating. Thank you for your suggestions. I'm going to get a second opinion. 

Yeah...me too but it was all a learning experience.  Mostly I learned to not completely trust doctors because, unless they have Celiac themselves, they really don't fully get it.  They just don't read the obvious signs people show.

Let us know how it all works out and good luck!

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