Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
    • admin

      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.

No More Eating At Restuarants
0

13 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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?

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,366
    • Total Posts
      917,513
  • Topics

  • Posts

    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined