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The crushing depression(physical and mental)that comes when I get glutened (even from CC).

I think a lot of this applies to Celiac Disease too. When our current crop of doctors were in medical school they probably learned very little about Celiac and about the link between health problems and food. Hopefully the next generation of doctors coming out of medical school will have more knowledge on the subject. Plus I think the younger doctors are more open to combining traditional and naturopathic methods.

Sadly I have talked to two people (not a big sample but telling). One of my friends who just started her residency when I asked her what she knew about celiac and she told me that it was a disease you only have to look for in children. The boyfriend of my friend who just finished his residency in GI said that anyone who hasn't had a biopsy and thinks they have celiac should go back on gluten to get the testing as way too many people think they have celiac who really don't have any problem with gluten. Being this is what people are learning in med school right now, I'm not too hopeful about the current generation of doctors knowing much about celiac.

I wanted to add something. When I get glutened I usually get heartburn/reflux as a reaction. For me it only takes a very small amount of CC to make it happen. But the heartburn/reflux can last for weeks. Last time I got glutened I had heartburn for 2.5 weeks, even when I knew there was no other risk of CC. I haven't been able to figure out how to get it away when I get it, but just know that even if you are only getting CC once in a while, it could make it seem constant. At one point when I got glutened worse I had three months of nausea. So even small amounts of CC (mine were from foods that said they were gluten free) can cause long term problems. For me the heart burn didn't matter. It was worse right after I ate, but it didn't require me to eat to get reflux. So know that 1.5 weeks may not be enough time for your symptoms to calm down to make sure your tests are accurate. Good luck finding what is causing your problems.

I was lucky that I think it was caught pretty early in terms of digestive symptoms, though some of the symptoms like knee pain and shin splints (only happens now when i get glutened) goes back to high school. But the D that lead to me going to the doctor was just intermittent when I went in. So I don't know what that means exactly. The doctor tested for celiac and lactose intolerance. Then I got a endoscopy and colonoscopy to confirm celiac and make sure there was nothing else wrong as my brother has crohn's so they wanted to make sure there wasn't anything else going on in addition to the celiac. well the GI doc said she thought it was a good idea to do the colonoscopy to make sure there was nothing else wrong since they were knocking me out anyway.

What really pissed me off about the reactions I have gotten are from my graduate program. I was told by my adviser that it was inappropriate for me to ask about whether or not I would be able to eat what they were providing at the new student lunch. Even though I didn't ask them to change anything. He said that it was too stressful for them to accommodate everyone's dietary needs. It still pisses me off. I was also questioned this fall if I should be in the field I am in given that I have celiac when I talked to my supervisor at school about how to address the issue with my internship. So this was my bad experiences.

Need to Rant:

I am feeling really irritated lately. I have been glutened from CC four times in the last month and a half. I'm not sure exactly where it is coming from, but I think it might be my nannying job. So lately I've been really sensitive.

I just need to rant about this as when this came up I was talking about having had a nightmare where I was back staying with my abusive parents (who I will never stay with again) and they refused to have any food that I could eat in the house. Yes in real life I could go and get food, but in the dream I could not and they literally had nothing.

When I was talking about my nightmare someone who compared my celiac to their CHOICE of being vegetarian. I understand that some people have very strong feelings about their need to be vegetarian. Whether it be spiritual, or ethical. However, it is not the same as being vegitarian, where at least in the US you can pretty much be guaranteed in most, if not all places, these days (though may be somewhat limited in fast food restaurants) being able to get something. And not having to worry about the consequences of becoming sick if someone doesn't switch their gloves. I know after a long time some people have trouble digesting meat, but I've never heard of someone getting sick because of cross contamination with meat.

I was working at a hospital when I was diagnosed. I asked the staff about if the hotdogs were gluten free (they were really good so sometimes i would get one for lunch) but they didn't know. I mentioned this to one of the supervisors in my department when she asked me how it was going with being able to find food and such. She was surprised that they didn't know. But I never followed up with the people higher up from the cooks as I was leaving shortly after I was diagnosed.

I hear you all saying I will share, and I did share with one person. I will try being more forthcoming in the future. My experience has been bad with sharing my celiac with my school was I have been discriminated against. My professors said things from that my asking about what was being served at a lunch for new students (shortly after diagnosis and so I wasn't so aware of cross-contamination) was inappropriate (and having this written into my yearly review) to most recently being questioned about if I should be in the field I am in because of it when I went to talk to my practicum professor who is supposed to be the one who helps me deal with my job (it is an internship). I had to disclose my celiac to my supervisors at internship and they were supportive, but I am hesitant to tell others in case I need them to step in to help me and don't want them thinking that there is something that they will have to do all the time (as it isn't).

This is all so hard.

I am O+ brown and hazel. I am also a Western Euromutt (sorry had to steal that) with some Native American ancestry.

My internship had its first potluck today. I found it really uncomfortable because everyone kept asking me why I wasn't eating the "yummy food" that people brought. It made me feel even more awkward. I know in other social situations people have known about my celiac as they have been social situations, but I didn't really want to share this information with everyone at work as it is none of their business. How do people deal with these nosy people. My supervisors know given that I needed to let them know in case I need accommodations at any point. But this seemed so intrusive from these other people. While I have been working with them a couple of days a week for about 2.5 months, given my position I feel like it is imperative that I keep my personal and work lives separate. How do people deal with the nosy people who wont leave you alone? My supervisors have been great about it, and it isn't that i think that my co-workers will be mean or unprofessional with the information, I just feel a need to keep a strict boundary between work and my personal life. And it is easier to keep those separate if I keep everything separate instead of picking and choosing what I keep separate.

Any advice? Apparently these things happen a lot at my job and I don't want to have to keep dealing with this as only a small percentage of people were there today so next time I will probably get the same questions. One person did figure it out on her own when i turned down her food offers one to many times (I was surprised to have this happen). But otherwise I feel like this is my information and I shouldn't feel pressured to share it.

Thanks.

Hello,

My first suggestion is to take a deep breath. It will take a little while to accept and then change. Mistakes will be made (look at how many posts there are on getting glutened), but it will be okay. There is a steep learning curve, but it will be okay. Take time reading over the board. There are lots of people having gone through this who have a lot of good advice. I would also suggest getting some books on Celiac disease for you and your fiance to read so that you can have the basics all in one place. There are good overview books. I liked Celiac Disease for Dummies when I first was diagnosed. It gave me a grounding and then I was able to learn the details after I had the overview. I was like your fiance and loved pasta and baked items before I went gluten free. However, after giving my intestines a while to heal, I am now able to eat gluten free pasta and gluten free baked goods and don't miss the other stuff as much. That doesn't mean that I never miss some of the foods I can't eat, but I hardly ever notice anymore. I have found new favorite foods.

Did you have an endoscopy? Was any hiatal hernia discovered? Hiatal hernia is when a part of the stomach is pushed into the diaphragm. Do you get hiccups too?

I had terrible heart burn before my Celiac was dx'd, but now that I'm gluten free, my heart burn is entirely gone. I have a hiatal hernia too, discovered only when I had my endoscopy, and bubbly drinks like ginger ale and such would not be recommended. Nor is peppermint. The bubbles would just aggravate the hernia, but a non-fizzy ginger drink, maybe some tea, or a ginger anti-nauseant might help.

Smaller, and more frequent meals, rather than 3 large meals per day can also help.

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I did get and endoscopy. They didn't find a hernia. I do get hiccups, but I think they are more related to stress than what I eat. I only get the heartburn/pressure when I get glutened, but then it can last for a couple of weeks. Right now with my practicum I am having crazy hours and am lucky if I can get any meals at regular times.

Thanks everyone for your input.

I know everyone is saying that you will be given medicine and forget the procedure, but that wasn't the case for me. I remember both the endoscopy and colonoscopy that I got. They did both because there was a family history of Crohn's and so they wanted to make sure that everything else was okay. Everyone told me before going in that my anxiety was unneeded because I would forget everything anyway. But me being me, I remember the whole thing. Luckily it wasn't as bad as I expected.

Thank you all for your replies. They really help. It isn't about laying down because it would happen no matter what I did. I would eat at work and have trouble for the next couple of hours. Even when drinking something. It is getting better. I will make sure to eat easier foods to digest when this happens. It would be really nice if the reactions would stay the same from glutening to glutening as if it comes without the D sometimes it takes me a while to figure out what is going on.

So one of my gluten symptoms is heartburn and nausea and a pressure like my stomach is trying to press up through my diaphragm. How do others deal with it? I take tums for it, but it doesn't help. Do others have things that work better? After I eat I get nauseous (though previously I have had times where I would be nauseous all the time). Why can't it stop and stick to one set of symptoms? And yes I'm sure this wasn't something else. When I get usually sick (from sinus infections to the stomach flu) I loose my appetite.

I have these dreams every once in a while (more like nightmares). It really sucks. Once I wake up I have to figure out if it was a dream or real.

I also suggest that you get therapy. If you are in or near a large city you can look for a therapist who specializes in helping people cope with chronic illness or dealing with serious diagnosis. The best place to start that search would probably be an outpatient clinic in a hospital. If they don't have anyone who specializes in it, they would probably be able to refer you to someone who does. Please get the help you need to feel better.

I was at the store today and bought some gluten free foods (yes the manufactured ones that everyone here says we should never eat). I bought them and got coupons for other gluten free foods that the store has. I thought that was awesome. Most of the time I get coupons for things I can't even buy. So it was nice to get ones for things I can use.

I just got back from my brother's wedding. They were very helpful. Know that the price of things like a place setting at these types of things are set a head of time, and differences in what is served can cause differences in the final bill amount. I am not excusing the person's behavior, she should have helped you as much as possible, even to just say she couldn't do it instead of contacting your nephew. But going directly to the restaurant might cause problems with the bill. You should definitely bring your own food if you go. That is totally okay. That is what I did for meals that they could not accommodate me at. My brother had the rehearsal dinner at a restaurant that had a gluten free menu so I was able to get food there. I didn't eat a the wedding ceremony because it was catered as a buffet.

As someone above said, you will probably be asked a lot about why you are not eating or eating food that is different than anyone else. I can't count the number of times I had to explain my celiac to people. I had to say that was why I wasn't eating, then people often wanted to know what it was. But they were all really accepting. I don't think I explained it that much in a three day period before. Even when I was first diagnosed. LOL.

I get mucus after getting glutened. It can confirm that the aches and pains I feel without much GI problems are actually from getting CC.

I told my other practicum adviser about my celiac. She was very supportive too and knew what it was. She was like, "it will be fine". This is such a much better reaction than I got from my school. It is nice to have support.

Thank you again everyone. I think I am going to have to get a bigger lunch bag. Sadly I don't have my own office or any way to store anything at my work. (All the interns share an office that is actually a full time employee's office so we only have access when someone higher up isn't using it.) And have no space to put things. I was there for five hours today and spent time in three different offices. I wish there was somewhere for me to keep food, but I don't trust the refrigerators. Luckily I haven't had to work in the lunchroom yet. If that happens I'm washing down the table before I put down any of my work.

Thank you everyone for your suggestions. You have given me a lot of other ideas of new things to try along with my friend's recipe. Thanks!

So I have another food question. My schedule does not give me any free time to call companies while they are open so I am hoping you all can help me. I found a rice recipe I like that a friend made, and so am now trying to buy a large amount of plain rice. I was wondering what companies people go with. I can read the labels that say there is only rice in the ingredients, but I'm worried about CC. What rice have people used that they have found works for them.

Thanks.

thank you everyone. I have lunch (or an attempt at it for tomorrow.) I will add your suggestions into my shopping list for tomorrow for the next day.

thanks.