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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?  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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Guest spruette

Hi, Introducing Myself.

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Guest spruette

I was just diagnosed with Celiac Sprue (Disease) yesterday. I am brand new to this diagnosis, for years I thought it was irritable bowel causing all my troubles. Then last year, had a gallbladder removed and I still became sicker. Last week I had an endoscopy done by a OUTSTANDING gastroentrologist and he found in a biopsy that I was suffering from Celiac Sprue.

Couple of questions,

1. Anyone ever have any throat problems along with their other symptoms? Mine for a while felt like I couldn't breathe or that it was "closing up" on me. I was in the ER a lot the past few months before finding my doctor and they kept calling it asthma. But asthma meds didn't work. Nothing did. I am seeing an ENT Thursday but wondered if I am allergic to gluten, can I be suffering some sort of shock from it as well? Just wondering on that one.

2. I saw the post below about joint pain. I have a very very painful left knee, and also suffer from TMJ, could those be caused by Celiac?

I am extremely new to this only finding out 24 hours ago, so forgive my ignorance. Just looking for some guidance and maybe make a friend or two along the way. :)

{{Hugs To my Fellow gluten-free friends}}

Connie

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I feel and still feel like my throat is closing up......when i try to take a deep breath it feels like someone is sitting on my chest and I just cant do it. I have also had chest pains and doctors just tell me that it is somthing to do with my muscles around my heart and not to be worried, but this is extremely frustrating. If you find out anymore information on it I am willing to go and see and sort of doctor for this and willing to try anything.

I have not had to many joint pains, just what I find is that my hip, nee or shoulder may lock up and it hurts when it pops.

I was just diagnosed about a month ago and I am really new to this whole thing to, but what I found was that I went and saw a nutritionist and it really helped, she was so wonderful and she has the diease so it makes it really easy for her to talk to. The one thing that she stressed was cross contamination. If you need any help or possibly have any questions, feel free to ask and if I can help in anyway that would be wonderful. Welcome to the Message Board! and good luck :)

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Guest jhmom

Hi Connie and Welcome :D

I cannot answer your questions but I am sure someone else will be along shortly. Since you were recently dx I thought I would share a few links that really helped me in the beginning:

Mainstream gluten-free Food List

gluten-free Food List ** must have Adobe to open link**

gluten-free Recipes

Safe and Forbidden food / ingredient list

Good luck on your new way of eating, I know you will be feeling better soon!

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I used to have problems with asthma but I haven't used my inhaler since going gluten-free. It's been just about a year for me and the differences are amazing. It will be worth the effort! Good Luck!

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Spruett,

Hi, I too have just been diagnosed with celiac disease. This is all really new stuff but thank God for the internet. I went to the library and only found one little paragraph in a medical journal about Celiac. I have had joint pain for years and the Dr. I went to for 12 years just kept trying me on different kinds of arthritis meds. like Celebrex and a host of others. I was also recently diagnosed with Diabetes, which my NEW dr. seems to think is connected to celiac disease. Some mornings I could hardly get out of bed and a couple of times I couldn't, and I am only 40 Yrs. old. :blink: I also like you have had throat problems, mine for about 6 years. It too the DR. thinks could be a result of Celiac. I don't know, but all I do know is that I went to my other DR. for 12 Years and have nothing but a pile of insurance reciepts to show for it, and my NEW Dr. found out all this in less than 2 months. Don't know if this helps but anyway, GOOD LUCK! B) Hope you feel better soon.

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Guest spruette

Nice to meet you everyone.

I wanted to reply to you all seprately more personally, but I am still figuring out the board here and how everything posts.

Thanks SO much for all your advice. You all seem really nice and I am glad I posted yesterday. I had my first gluten-free chocolate chip cookie tonight and loved it. It was by Pamela's Bakery or something. My Goodness, everything is so expensive though. Wish I could find some less costly foods. Looking for recipes alot on internet to make stuff myself.

I will look at the websites offered here too. Thanks for those, btw.

Looks like I am in the right place. I am happy to know that I am not alone with this being new to me too. Last week, I thought there was something freakish about me, and that I was too different. But without feeling sorry for myself. I just thought it would be very difficult to weed out wheat and gluten products and concerns with health symptoms. It's so great to know that someone thought about a support board for us so we have each other to kind of help through all this.

I am 29 and also looking at possibly testing for diabetes, it's interesting that their may be a connection since Type 2 diabetes runs in the family. Does it cause excessive light-headedness? I am praying that it isn't. At least for a little while. I want to try and get used to one diet at a time.

Sorry to ramble. Thanks to all of you with your great support and advice. I will post here as often as I can. :)

Take care!

Connie

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;) connie--if my memory serves me--many type 1 diabetics also have celiacs, but most celiacs who go gluten-free and stick to the diet can most times not develop type 2 diabetes--i think anyways--you may want to read more about this--google it and see what you find--celiacs + type 2 diabetes--i do know that kids of type 2 diabetics are more prone to the disease---so much to learn huh :( deb

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About type 2 it doesn't run with celiac, only type 1 i am not sure why, that is waht i am doing my science fair on.

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Minibabe....I also cannot take a deep breath w/o the feeling that my throat is closing up, but....I have pulmonary fibrosis. PF is listed as a disease probably associated with celiac disease. My celiac problemssss were exposed after I started taking prednisone and actimmune for the PF. So, the reason for my post is to suggest that if you are also having shortness of breath you should consider seeing a "good" pulmonologist. My PF went untreated for two years after it was noted by a radiologist, but my then primary doc didn't pick up on it.

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
    • I am 33 and just diagnosed with celiac in July 2017. I am gluten free but still suffering from costocondritis and stomach acid issues. I am also dealing with some neurological things like pins and needles in my left shoulder blade that come and go. No deficiancies right now that we know of othwr than vitamin D which I have a prescription for. My symptoms were not bothersome until right after my first child and then everything fell apart. 
    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
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