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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.

Howdy From New Hampshire
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8 posts in this topic

Heh... well I'm new here and hoping I can meet with others knowing the same struggle I've been dealing with.

I live in the mountains, and am currently in another doctor-related struggle. Technically I was diagnosed with a blood test, and since being on a gluten-free diet for half a year (at the time), my blood results only proved that I had gotten rid of the gluten in my system. Now a new specialist for some reason is doing genetic testing and well, I haven't even gotten the results back yet.

But I don't think it would matter. Considering I've had cross contamination on multiple accounts... this just proves I do have it. But the struggle lies to be dealt with.

Along with Celiac, I have a horrible anxiety problem. Panic attacks at any little thing and for what reason, I'll never know. And with times being hard enough, I cannot work. I do still live with my parents, although I am 20 years old now. And they've been my biggest support through everything.

I was hoping by perhaps making some penpals here, perhaps it can help me feel more comfortable with Celiac Disease. I'd love to hear about others stories and how they cope/coped with it and so on.

So please feel free to message me. : )

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Welcome RR!

This is a great place for information or just meeting other people who walk in your shoes. ;)

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Hi RozzyRay ( cool name). I'm happy to hear that your parents are supportive. When I first went gluten-free I had a lot of anxiety attacks, not full panic attacks, in regards to food. I would say to not put yourself in scary situations like dinner at someone's house, until you really have a plan and will stick with it -Like bring your own food and not give in. Feel free to vent or ask questions here.

Last advice that helped me when I was feeling bad : find something happy everyday and get out of the house. It might be as simple as watching the birds in the yard or throwing a ball for the dog.

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B-complex (gluten free of course) and fish oil has helped me the most. I forgot to take them a couple of days ago and I could tell a big difference in how I felt. I was on anti-depressants on and off for years.

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Hello- My first post! I joined today after a painful and emotional accidental experience with a gluten filled nutrition drink. I was looking for someone from NH- just curiosity and maybe someone to understand my surroundings and possible advice on nearby gluten-free stuff. I'm in southern NH but would travel for a good gluten-free meal or event.

I've been gluten-free for 7 months- been sick for over 20 years! YEAY DOCTORS! I have many medical issues beside celiac and I haven't worked in 4 years (I'm a psychiatric nurse) but things are looking up the longer I've been on this diet.

I have anxiety issues too- along with a fun array of other gluten induced mental tortures- I may be able to help you get through :)

Wanted to introduce myself and make my mark on the board

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Hello- My first post! I joined today after a painful and emotional accidental experience with a gluten filled nutrition drink. I was looking for someone from NH- just curiosity and maybe someone to understand my surroundings and possible advice on nearby gluten-free stuff. I'm in southern NH but would travel for a good gluten-free meal or event.

I've been gluten-free for 7 months- been sick for over 20 years! YEAY DOCTORS! I have many medical issues beside celiac and I haven't worked in 4 years (I'm a psychiatric nurse) but things are looking up the longer I've been on this diet.

I have anxiety issues too- along with a fun array of other gluten induced mental tortures- I may be able to help you get through :)

Wanted to introduce myself and make my mark on the board

Hi Kayba and Welcome!

Here are some New Hampshire Support contacts:

http://www.celiac.org/index.php?option=com_content&view=article&id=69&Itemid=95

This is also a great place to learn, find suppoert or just share your experience. I have made some great, lifelong friends.

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Hello- My first post! I joined today after a painful and emotional accidental experience with a gluten filled nutrition drink. I was looking for someone from NH- just curiosity and maybe someone to understand my surroundings and possible advice on nearby gluten-free stuff. I'm in southern NH but would travel for a good gluten-free meal or event.

I've been gluten-free for 7 months- been sick for over 20 years! YEAY DOCTORS! I have many medical issues beside celiac and I haven't worked in 4 years (I'm a psychiatric nurse) but things are looking up the longer I've been on this diet.

I have anxiety issues too- along with a fun array of other gluten induced mental tortures- I may be able to help you get through :)

Wanted to introduce myself and make my mark on the board

Hi and welcome to the board. As you will see on this board there are many of us that went a very long time from becoming celiac to finally getting diagnosed. For some the anxiety issues resolve a bit gluten free so hopefully that will happen with you. Do feel free to ask any questions you need to and this is a great place for support.

I am thinking about moving to NH, my DD and DS are in Boston and I want to get a bit closer and get away from the highest taxes in the US. How easy is it for you to find gluten-free food where you are? Do you know if there are by any chance any Wegmans stores in NH? I hate to lose the convience of being able to just grab a item and look for the G.

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Hi and welcome to the board. As you will see on this board there are many of us that went a very long time from becoming celiac to finally getting diagnosed. For some the anxiety issues resolve a bit gluten free so hopefully that will happen with you. Do feel free to ask any questions you need to and this is a great place for support.

I am thinking about moving to NH, my DD and DS are in Boston and I want to get a bit closer and get away from the highest taxes in the US. How easy is it for you to find gluten-free food where you are? Do you know if there are by any chance any Wegmans stores in NH? I hate to lose the convience of being able to just grab a item and look for the G.

Never heard of wegmans but it's getting easier to find gluten-free food around here- all the grocery stores have a section or have gluten-free foods labled through the store- the selection isn't top notch. There is an all gluten-free store in Hillsborogh- about an hour from me- new stuff seems to be appearing around the Keene area where I am. I'll fill you in more if you PM me.

Thanks for the hope on the anxiety issues- both my anxiety and depression have improved dramatically since the diet change- both came flooding back at once full force after the gluten incident last week but are lessening again. It will take a little time to undo 20 years worth of learned reactions and behaviors but as I said above- things are looking up and it's only been 7 months!

Feel free to grill me for info on moving to the area- I'll do what I can to help

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    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good     
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
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