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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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raindrop    1

I have been gluten free for 2 and a half years. I have on ocassion tried a small amount of a product with gluten or accidently ingested something with very bad side affects. Until this last time it has been migraines. I used to cope with at least a mirgaine a week before giving up gluten. I had to take very strong pain killers and I would miss classes, as I was in university at the time. It was miserable. But I feel that I coped with it better than I do now when I have a reaction.However, I have found that taking aspirin right after being contaminated with gluten can prevent a mirgaine. This is great news. But, I had some other side affects this time, not to mention a strong emotional reaction. I had an emotional reaction before too, but I thought it was because of the migraine pain. Now I am thinking that the emotional reaction is actually an allergic reaction.

I instantly got bloated and I am on my third day of cramps. I could not go to the bathroom for two days. I have some relief today. I had a low fever for a day and a half, and swelling in my hands and feet.

Emotionally, I feel so misunderstood. By my partner, colleuges, everyone. The minute my colleuges decided to go to a place that sold fried food instead of a restuarant with more choices, I became anxious. I felt like crying. I was so afriad that I would accidently come into contact with gluten, but I was not able to express that. I asked if the menu had choices and everyone said that it did. I did find an item on the menu that was fine. However, I decided to eat some home fries and I instantly began to react with the bloating as I said above. They must have been fried in the same oil as ongion rings and contaminated with gluten. I have been off and on crying since it happened and extremely depressed and anxious. I refused to go to the store the other night and I have been anxious about my partner.

I feel so frustrated that this happens and I feel that I have no control over it. Then with feeling misunderstood, I feel so alone.

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Marilyn R    239

I asked my neurologist if depression, apathy and anxiety could be considered neurological vs. psychiatrical responses to being gluttened. She said those symptoms were psychiatric, but I'm not sure she's correct. And I don't think most medical professionals know the full extent of this confounding disease.

I'm surprised that you would ingest gluten and follow it with pain killers. You seem really intelligent, and I'm sorry, but that's not very smart!

As for the dinner with colleages, if they choose a place you don't approve of, can you tell them that you're sorry but you have other plans? (Even if your other plans are to go home and make safe food for yourself?)

I'm really sorry that you're feeling so bad, and hope you will resolve a way to go totally gluten-free. Your partner should be part of your band wagon, not part of the feeling of defeat.

I really wish you well. At 2 1/2 years, I assume you know which path you need to take...if not, please ask. There are plenty of people who want to hemp.

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eatmeat4good    313

Gluten can cause the emotional reactions you are having. Doesn't matter if they call it psychiatric or neurological...it is gluten effecting the brain and the emotions. It is very common...many threads here on the anxiety/depression reactions to gluten. Sensitivity can increase and that may be why you are having more symptoms with your gluten reactions.

One other thought. If you are allergic to salicylic acid...it can also cause a profound sense of despair and grief, along with other symptoms. So while it may be helping your pain, it can be causing other reactions. Check out salicylic acid and aspirin allergy symptoms on google...and see if any of it fits. Something like one in hundred are allergic to aspirin/salicylic acid.

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GFinDC    609

If you are eating out a lot you need to be very careful to choose good, safe, gluten-free restaraunts. Check ahead of time with the restaraunt to verify they understand gluten-free and can support your needs. Otherwise don't go there and eat. Another option is to ask the restaraunt if you can bring your own food in and just order a drink. Or eat your meal before going to the place with your friends. You can google the name of a restaraunt and gluten free and get hits for many. Probably a lot of those hits will be to threads on this forum rating or describing the experience people had there.

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Raindrop, I feel a lot like you do when I get glutened as far as the emotional/neurological reaction goes. I feel so alone and have a hard time dealing with anything. It is hard to deal with the need to find safe food. It is hard to ask for what you need from your partner. My kids who are also super sensitive celiacs help me through it. My partner seems incapable of understanding. You just need to fight through it and keep eating safe and it will go away. I don't eat at restaurants anymore.

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Raindrop, I'm sorry you are feeling so low. My daughter (the one with celiac disease in our family) has moments of sadness with and without glutening. I think if you were surrounded by more supportive people, it would help with this, at least to some small degree.

We rarely eat at restaurants. There are a few that are knowledgeable about gluten and totally 'get it', but so many don't get it or even understand that it takes only trace amounts to cause serious problems. My in-laws have developed relationships at certain restaurants and ask for the same server, etc to make this a bit smoother.

If you are going to a new restaurant, definitely call ahead and ask for the manager (try to call during non-busy times or ask if there's a better time to call - you don't want someone feeling rushed and forgetting something). Try to get a copy of the menu ahead of time so you can ask pertinent questions. If all else fails, ask if you can bring your own food due to a medical condition. If it doesn't look like you can eat anything, don't go. We refuse all invitations to sandwich and pizza restaurants, even though they usually offer a salad bar. The cross contamination risk gets her every single time.

If you don't mind my saying so, you may benefit from seeing a psychiatrist about being more assertive. I realize that may offend you, so please let me explain. For many years, I had trouble being assertive about things I wanted (not related to Celiac by the way) and I finally saw a psychiatrist and went through assertive-ness training (it probably had another name). I'm typically a quiet, people-pleaser and I never wanted to rock the boat. I learned that if it affects me adversely, I need to speak up. Sometimes, it's still difficult, but I speak up enough to make a difference in my life. It doesn't sound like the people around you take your medical condition seriously. I don't think that will change until you start letting them know that last minute changes about where to eat isn't okay with you. It's better for you not to go. (And also, always ask about fried foods if you are at a new restaurant - we have learned the hard way that not all restaurants treat fryers/oil the same way).

All the best and I hope I haven't offended you.

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mushroom    1,205

I asked my neurologist if depression, apathy and anxiety could be considered neurological vs. psychiatrical responses to being gluttened. She said those symptoms were psychiatric, but I'm not sure she's correct. And I don't think most medical professionals know the full extent of this confounding disease.

I

There is a very close link between psychiatry and neurology. I once worked for a neuropsychiatrist; i.e., he had passed both the psychiatric and neurology board exams. It is very hard to tell where one ends and the other begins. I would not trust anyone who made such an emphatic statement.

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Marilyn R    239

There is a very close link between psychiatry and neurology. I once worked for a neuropsychiatrist; i.e., he had passed both the psychiatric and neurology board exams. It is very hard to tell where one ends and the other begins. I would not trust anyone who made such an emphatic statement.

Thank you Mushroom. That same neurologist tried to convince me to have a nerve biopsy. Why? To diagnose me. (But not with celiac disease, and all of my neuro problems are linked to celiac disease.) I think I'll cancel my next appointment. I appreciate the heads up. Why pay the co-payment if she doesn't have a clue?

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raindrop    1

Thank you all for your comments and concerns. I did not realise that aspirin could cause an allergic reaction. I will look into that.

I am feeling much better today. My digestion is terrible and going on day 4, but my others symptoms, anxiety and depression are much better.

Somone made a comment about taking a painkiller after ingesting gluten. I am not sure why this is not healthy? I get mirgaines after eating gluten, and I have had migraines that last three days.

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GFinDC    609

Thank you all for your comments and concerns. I did not realise that aspirin could cause an allergic reaction. I will look into that.

I am feeling much better today. My digestion is terrible and going on day 4, but my others symptoms, anxiety and depression are much better.

Somone made a comment about taking a painkiller after ingesting gluten. I am not sure why this is not healthy? I get mirgaines after eating gluten, and I have had migraines that last three days.

I don't agree with that myself. Pain killers are not a bad idea if you need them to get some sleep.

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I also wanted to mention that if you have strong cramps after being glutened, your doctor can give you medicine that can help with that. It seems to shorten my daughter's overall reaction as well. All the best :)

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I believe it's been about two years now since I've eaten out at any restaurant, including when I did a road trip across America and back. I simply brought my cutting board and other tools and stopped at grocery stores along the way and made really big salads, plus eating bananas and other fruit.

I'm mostly a raw foodist anyway, so restaurants just aren't for me. And I'm not someone with any sort of social obligation (work functions, etc) so it isn't hard for me. For people who are having professional luncheons and things of that nature, I really feel for. :( Seems like it would be super hard.

But when it comes to friends, family, etc I just put my foot down a long time ago. I told them all I have very severe allergies and a very specific way of eating and demand that it is to be respected. If it isn't, I dropped those people from my life long ago. Everyone in my life now admires me for my strict diet.

Don't feel talked into doing something that isn't good for your health. Be strong and say no.

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MarionG    2

I have been gluten free for 2 and a half years. I have on ocassion tried a small amount of a product with gluten or accidently ingested something with very bad side affects. Until this last time it has been migraines. I used to cope with at least a mirgaine a week before giving up gluten. I had to take very strong pain killers and I would miss classes, as I was in university at the time. It was miserable. But I feel that I coped with it better than I do now when I have a reaction.However, I have found that taking aspirin right after being contaminated with gluten can prevent a mirgaine. This is great news. But, I had some other side affects this time, not to mention a strong emotional reaction. I had an emotional reaction before too, but I thought it was because of the migraine pain. Now I am thinking that the emotional reaction is actually an allergic reaction.

I instantly got bloated and I am on my third day of cramps. I could not go to the bathroom for two days. I have some relief today. I had a low fever for a day and a half, and swelling in my hands and feet.

Emotionally, I feel so misunderstood. By my partner, colleuges, everyone. The minute my colleuges decided to go to a place that sold fried food instead of a restuarant with more choices, I became anxious. I felt like crying. I was so afriad that I would accidently come into contact with gluten, but I was not able to express that. I asked if the menu had choices and everyone said that it did. I did find an item on the menu that was fine. However, I decided to eat some home fries and I instantly began to react with the bloating as I said above. They must have been fried in the same oil as ongion rings and contaminated with gluten. I have been off and on crying since it happened and extremely depressed and anxious. I refused to go to the store the other night and I have been anxious about my partner.

I feel so frustrated that this happens and I feel that I have no control over it. Then with feeling misunderstood, I feel so alone.

I am so sorry that happend to you. People that don't have Celiacs cannot understand what we go through. You can explain to people what it does to you. If you need to, do it multiple times. This has been a very effective tool for me especially in the beginning. Next time they decide to go to a restaurant where you cannot eat don't go. It might be a bummer for awhile but it's sooo much better than being gluted.

Also I would say anyone who doesn't believe that there are serious emotional side effects from Celiacs is sorely mistaken. I was suicidal off and on since high school, depressed most of the time, felt like I was going crazy, diagnosed with drepression then Bi-Polar disorder, given a bunch of meds that I refused to take and guess what? shortly after being gluten free ALL of that is gone. It is so true what someone else said that Celiacs and its myriad of symptoms is not very well understood in the medical field.

I wish you the best!

Marion

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