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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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Ninja

Frustrated, Upset, Concerned...

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I've not been feeling good for the past couple of weeks and it's really starting to make me doubt whether I'm on the right path. It seemed to start with a trip I took a month ago when I was cc'd over and over. Well then I pet-sat and received glutteny kisses from 2 dogs as they were still chewing their treats. Then it was my conditioner, then it was the dog shampoo and eating with my hands directly after ( :blink: ) and then the grapes last night (no gluten, just high salicylates). I've been trying to go low sals to see if that helps at all given the array of foods that don't seem to agree with me. It's the only thing that makes sense because my reactions seem to follow no pattern (except that I react to higher sals foods) and sals are cumulative, I've learned. I'm having a really difficult time giving up fruit. If there's one food group I would never want to give up, it would be fruit.

I've been supplementing with vitamin D, B12 and a multivitamin, taking probiotics and digestive enzymes. I'm worried that I'm creating more issues by doing this. I should be feeling better not worse, right?! Some days are fantastic – like amazing... and then this happens. I know I need to give myself time to heal, but I'm worried that I'm doing more harm than good here. It's so frustrating. On top of that my mom is so concerned about all of this and how I'm feeling. It breaks my heart when she asks how I am feeling and I can't tell her that I'm happy, or that what we are doing is working... My dad (who is the gluten eater) went away for a week and I noticed an improvement with my symptoms. Maybe it was just coincidence? I know I could be more careful in the kitchen... :unsure:

I just want to feel better and I don't want to do the wrong things. I feel so clueless about it all.

Thanks for listening.

~Laura

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I had some apple cider over the weekend (very high in sals) and I feel glutened from it. If you have a problem with sals, this could be it. I am struggling with the same thing as you right now. Check out the sals thread in the DH forum. There is a lot of great info there.

BTW, your dog is adorable!!! Whats his/her name?

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I'm sorry you're feeling so crappy. :( I've been following some of those threads

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I'm sorry you're feeling so crappy. :( I've been following some of those threads – I don't think I would have figured it out otherwise!

The dog in the avatar is named Honey and the one in my profile picture is Ally – they are mother and daughter. :)

Sweet babies! I love their names.

Hopefully we will both be feeling good soon! Hang in there.

BTW, I can not go near grapes. They leave me feeling glutened from the sals. I find that I can tolerate red apples and strawberries and pears. LIke you said, they add up over time though so I try to limit it to one fruit a day and try to stay away from the high sals ones. (although, I drank liquid sals on sat. in the apple cider) and I can def. feel it.

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I learned my lesson – stay with known safe foods! I seem to be able to tolerate those, too (yay!). Bananas have definitely been a staple.

Very complicated. :huh:

Thanks – you too! :)

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
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    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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