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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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Woolygimp

Why Am I Allergic To Everything?

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It took me nearly 15 minutes to get off the floor to type this out. Everything I touch, eat, drink makes me sicker and sicker. I can go from feeling fine and energetic when I don't eat to literally crying in pain, unable to walk, collapsing on the floor because my muscles ache so much, everything feels massively inflammed, muscle weakness so bad that I can barely lift my arm.

Every diet recommends Fish, Eggs, or all this other food that I can't tolerate. I'm pretty sure it was less than 3 fish oil capsules that did this to me.

These extra foods aren't intolerances because I don't get any gastroinestinal symptoms from anything but gluten. I don't think they are allergies because I've never seen "massive inflammation, muscle weakness, fatigue" to the point where it's crippling as a symptom of a food allergy listed anywhere.

I'm having a hard time finishing any of the diets when most of these "recommended" foods make me feel like I'm dying. Fish. Eggs. Nuts. Avacados. Grapes. Then there's grains and dairy, which I KNOW I react to because I have gastroinestinal symptoms and confirmed celiac etc. but even though they make me feel bad, they don't make me feel NEARLY as fatigued/poorly as fish, eggs, nuts and the other foods do.

Except it's not just food but it's medication too. I'm only 25 and I have celiac disease, sjogrens, chronic prostatitis (probably inflammation related), low testosterone (I get test flu after every injection from the benzyl alcohol?, I can't even take hydrocortisone without it making me pass out for hours. It's made me discontinue every medication except the testosterone. I couldn't even tolerate androgel.

EVERYTHING I touch makes me feel run down. Literally, the only thing that I feel comfortable eating is chicken and olive oil.

Fish is the worst for me, and it's a staple food where I'm from. I grew up on seafood and now literally any bit of it will make me feel like I've lost a ton of blood pressure, and literally make me sit in bed for days unable to move - almost in a dream like state. When I'm like that, it literally feels like it takes more energy and willpower to pick up my arm than it does to benchpress 100 lbs on a good day. Literally, picking up my arm when I feel like that feels like they have 50lb weights attached to them.

My life has been in a see-saw. I'll feel bad, then some days REALLY bad, then some days AMAZINGLY good. Albeit the bad days are far, far more common the good ones. But I don't know. I'm lost... maybe I'd be better off if I let the Dr. put me on a ton of prednisone.

I'm losing faith fast and I need some encouragement and I'm finding it increasingly difficult to follow a restrictive diet when most days I can barely get out of bed and most of the recommended foods cause me to feel worse than when I've been glutened... Sorry for the rant, I just really needed to vent.

Friends and family members aren't really willing to help because I put on a good enough "show" that they think I'm healthy, especially since I usually only leave my house on the days I feel well.

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I know how you feel. How long have you been off gluten? Intuitively I think that one of the biggest things you can do to help yourself is to calm down. I know it is really hard to do that but if when your immune system has been tripping for so long because of gluten it becomes hypersensitized to everything. Do you meditate or do deep breathing? When your mind is constantly afraid of everything that you are eating your body will "react" to it because you expect a reaction. Look into rotation diets. These make sure you don't eat the same foods more often than every 4 days. Listen to your body over the doctors. Use sea salt with your meals. It will help your adrenals/blood pressure. Let me know if you have any questions.

-Joe

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I have seen lots of fish oil capsules that are NOT gluten free. I would not go NEAR a fish oil capsule because the supplement and pharma industry is always changing ingredients, and the second you find what is supposed to be a reputable brand, somebody sells the company to the competitor, and the label changes, the ingredients change, and it is screwed up.

Rule: don't eat anything that makes you feel bad, even if recommended. I am on the high end of can eat most things except gluten. If I make a list of suggestions, it is for people to pick and chose from, Not An Edict.

Sometimes people type out their diets and they are eating hardly anything, because they just grew up that way and now are wondering how do the breadless cope? I'm meanwhile looking at their lists, and wondering how does one eat that and live, as it will have no fat and no vegetables or fruit.

Secondly, has anyone tested you for Lyme disease ?

And how about auto immune thyroid, not just thyroid levels ?

Third, make sure whatever a medical professional puts in you is Gluten Free, No exceptions. There are always alternative applications. Eating or getting glutened is going to fool you into thinking it is everything else making you feel awful, whether or not it is.

Forth, the feeling better when you don't eat phase- yeah, that's classic with the auto immune stuff like the sjogrens and the arthritis, until you get the diet lined out on what you can and cannot eat. Run like the wolves. Then crash like one. You see dogs sleeping 18 hours a day. There's a reason for that. ;)

If you really want to feel crappy, go on prednisone for a bit, then taper off carefully.... and a week later, you will feel like **** anyway. This is because steroids suppress your remaining natural hormones while you take them. Steroids are a godsend for emergencies ( I had poison oak all over my face nearly 3 years ago, including my eyelids, plus other areas) but after 2 short rounds of that to knock it back, it took me months to recover. I didn't really have a choice but what can you do. The funny part was at least my joints did not bother me while I was laid flat out for so long, also in a antihistamine and calamine lotion haze. But something changed in my metabolism that round, and I don't like it. On the other hand, I'm still BETTER than I was 10 years ago. B)

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I've been gluten free for over two years. All my gastroinestinal symptoms resolve immediately after going gluten free, and return (along with DH) everytime I'm glutened. I know when I'm glutened and these reactions that I have to these foods are definitely not the same reactions that I get when I'm glutened.

A reaction to gluten can take 3-14 days to resolve, sometimes longer for the DH to disappear.

The reactions I have to these foods last about 6-24 hours, maybe a tad longer, but instead of having any gastroinestinal issues, as I would with gluten, I instead get MASSIVE fatigue, inability to think, crushing weakness, and literally it feels like the blood is draining out of my body.

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Sorry to hear that. I have Fibromyalgia so I know what it is like to be in pain all the time. Just got over another flare and honestly don't know what triggered it. I do know I have to be careful not to overdo things. Perhaps that is what I did. It doesn't seem to take much.

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Sorry to hear that. I have Fibromyalgia so I know what it is like to be in pain all the time. Just got over another flare and honestly don't know what triggered it. I do know I have to be careful not to overdo things. Perhaps that is what I did. It doesn't seem to take much.

I just don't understand why I'm the only person here that reacts this way to food?

It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know.

That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?

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I just don't understand why I'm the only person here that reacts this way to food?

It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know.

That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?

Sorry, I just don't know the answer.

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Okay, I know this is going to sound like a pretty dumb question under the circumstances, woolygimp, but who is recommending these diets for you and why? Have you tried going back to just a very basic diet of say, lamb, rice steamed veggies (I would recommend root but not potato), olive oil, and then adding in just one food at a time once you have stabilized?

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I Know EXACTLY how you feel. I have yet to have met someone like me until now. I want you to know it can get better.. Much Much better. I promise. I am not only allergic to Gluten.. I am allergic to much more. The worst one that gives me pain all over my body is the Weigh. I am also allergic to bakers yeast. I am Allergic to many fruits and veggies as well. I did not know what I was allergic to until I went to a holistic Doctor. I got the tests back that told me everything I was allergic to. Everything Dairy.. I am allergic to rice of any kind. Corn. Corn meal... I can basically only eat meats and some veggies. But you know what?? I have never felt better since I cut it all out. Another thing I think you might want to ask your doctor is for a Candida test. It is a yeast infection in your intestines. It causes all those symptoms as well. I also have that because I had no Idea I was allergic to wheat. That's what caused it. I was eating and eating it . Now I am getting balanced out. You can to. Unfortunately a regular doctor can not perform these types of tests. Only a Holistic doctor can. I am not going to Lie. Insurance does not cover it. It costed about 2 grand to get the tests and correct treatment. BUT IT IS WORTH IT. I hope this helped you hun. I do not wish anyone to feel like I did. But there is hope..

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Welcome to the board, FlebbyDebby. Did you notice that this post is about 18 months old? I have not seen Woolygimp around for a while so I hope she is feeling better.:)

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