LookingforAnswers15

Thanks a lot Bttrfly! I am glad they ruled out MS for you. Hope these scary symptoms, especially loss of vision don't occur again.

I definitely can relate to you. I did not notice too many abdominal symptoms at first (but much more lately; my IgE levels are extremely high so maybe that has something to do with it as well) but some other random symptoms. Yes, the migraines are horrible. I don't remember having them before going gluten-free so that with some other symptoms freaked me out. I got the results and luckily it ruled out MS for me too. However, I was not impressed with this neurologist. According to him celiac does not cause neurological problems. Luckily another doctor looked at my mri and sent results to this doctor. It truly is frustrating that some of these doctors do not believe us when we say we are not feeling well or they just say is that we are thinking too much about it or it is because of stress (when the only thing that is stressing me out is that I do not feel well and these doctors are not doing anything). Why would anyone want to spend so much money and time in hospitals unless it was necessary? I think some of these things will remain a medical mystery to us, while these doctors will think they are psychosomatic issues.

Thanks again!

Dear Eloise,

I believe I told you a few times that I thought that you are a strong and brave girl. You are also an amazing fighter! Keep getting better!!! We all want you to get better. Seeing the post about your surgeries and hearing that you are getting better made my day. 

Will continue to pray for you, your family, and the donor's family.

Also, thanks again for everyone who has been letting us know about Eloise's progress.

Hi all,

I have 3 questions:

1) Has anyone done an MRI to rule out other AIs (e.g. MS)? If so, when you were tested, were you given the dye? I was not. I was just asked not to move for about 15-20 mins.

2) Apparently my enzymes GGT and ALP are low. What should I take for that?

3) Magnesium is slightly elevated. Anyone has any experience with this?

Thank you!

Hey,

I hope you can help me figure this out. I was tested a few months ago and while my antibodies are still high, I also noticed that my IgE was 195, normal range up to 100. I asked the doctor to retest me last week and they came back even higher. It is obvious that I am allergic to something but I have no clue what that could be. He said I will do an allergy test but did not specify what I will be tested for. I want to be prepared to ask to test for something specific.

I usually eat very well. Meats, lentils (marked gluten-free), soups, rice, corn pasta (sometimes), fruits, and veggies. I think it is a well-balanced diet. I might eat too much fruit and veggies when I am busy to cook so that might not be good but it does not happen often. Lately, since I have been worried about some symptoms, I realized that I could not eat much at all and I might have even experienced acid reflux. I never had something like that before. I felt that I needed to only eat rice, pasta, and potatoes. I lost some weight as well. However, I began eating more again.

Since it is a summer time and I am visiting my family, I try to eat food that is convenient and easy to make especially since kitchen is not gluten free but I do have my own dishes and towels. I really usually avoid dairy and do not eat eggs often but I have been regularly eating boiled eggs at home and ate some gluten free cheese (soft cheese-similar to feta). I stopped eating cheese again and I do not drink milk at all. So, I am wondering if it could be eggs, soy, nightshades.

I eat bananas, meat sometimes, potatoes, peppers and eggplants once in awhile, corn pasta. I rarely buy gluten free snacks but I know they have soy lecithin. 

Can you please let me know if you have any ideas what I should consider getting tested for? Are there any common food allergies for celiacs?

Thanks a lot!

Dear Eloise,

thank you so much! You are super sweet and your kindness and maturity really impress me. I feel ashamed to be complaining so much when I see you being so brave. And yes, I am also a girl =) but much older than you.I guess I should consider myself a grown up =). I think you are one of the bravest people. I truly hope and pray that everything works out for the best for you as well. A prayer that you have already said for me means more than you think, so please don't create work for your sister to light a candle for me. I would rather have her light an extra one for you. Every time I read any of your posts, I say a prayer for you. You are so good at writing to people and encouraging us. Your parents have an amazing kid =). Sorry for not responding to your bucket list, but I also think it is great and with your attitude and strength, I believe you can achieve anything you set your mind to. I trust in your doctors and I really hope everything will work out. You have a lot of friends here now praying for you, including your new friend . Hugs

Update:

I went to see a dr./ a neurologist. Did some basic tests but an MRI machine was out of service so i have to see when I can get it done this week. I am doing better, just need to get it out of my  mind as much as possible. I walked back from the dr.'s office to clear my mind. Sorry for freaking out but you all helped more than you know. As most of you know, we try to protect our families and friends from our worries but we need someone to talk to especially someone who has faced similar struggles.

Thank you again.

Thank you Bartfull and Icelandgirl. I am getting ready to go to see a doctor and i am already an emotional wreck trying to hide it as much in a front of my family. 

So, i read my horoscope, which I never do, hoping I will get something positive. It said "An unexpected twist of fate might be a wake-up call from your future, reminding you to keep everything in proper perspective. When life hands you lemonade, you should be grateful and drink it." I cannot say that i believe in horoscope but i really did not need to read this today. Even tv shows and fb posts were related to my fears. Have to go now... thank you for thinking and praying for me.

Hi all,

I used to consider myself brave but not any more. I am so worried about everything these days and I admire so much strong kids and adults on this forum. 

I cannot stop thinking about doctors because I am scared of possible new diagnosis because I have been experiencing other symptoms. I am so terrified to even write down what I am scared of. Tomorrow is my MRI and while I want to hope for the best, I am so scared. I go back and forth when thinking about it and trying to find reasoning for some of my symptoms. I experience so many emotions and I have never felt fear like this before and I have been though a lot. Lately, all my emotions seem so heightened, I feel like someone is choking me, probably get an anxiety attack and just start crying. When I went to see a doctor, i just started crying because of my body feeling weak and being scared. I am horrible at hiding how I am feeling so my family can see if I am not doing well, which hurts them, so then I am worried about their well-being.

Hope that all of you that are going through a tough time now, start feeling better soon.

Hi all,

Ravenwoodglass and Cycling lady, thank you so much. I knew I could count on your advice =). I have noticed that a few members, including two of you , are always willing to help others.

Ravenwoodglass - I was diagnosed a year ago and my antibody levels were very high: 230 and now 120 so they are dropping but I was hoping it would have been much better by the last testing. I just hope that they do not go up again because I think I was accidentally glutened. I am visiting family in a different country so I am thinking (if possible) to have them retested again (just a blood test) to see where I am at right now and if they can tell me anything more. My hair loss is weird...sometimes I loose less, sometimes more but overall it makes me sad to look at my photos from 3-4 years ago. I know that my levels are still high but for a year I was so careful, never cheated so I really was hoping for better results. Now, while I am visiting, I feel like I am surrounded with gluten (since I am the only one with celiac) and although my family tries very hard not to cc my food and I've got my own pots and dishes, it is easy for them to forget some small things because they are not used to having to deal with this. 

Cyclinglady- This is perfect. I needed something like this. I will write it all down and take it to my appointment. I scheduled an appointment with a private gp. 

Dilemma: I am debating whether or not I should immediate disclose to him/her that I was diagnosed. Some friends from here recommended not to. It is supposed to be a routine medical check up where I discuss with gp my concerns and hopefully s/he refers me to other doctors. The reason for that is that I want to see what they think might be happening. I am looking for a fresh set of eyes to look at me carefully. I am afraid that they will consider that all of my other random symptoms that I have been worried about stem from Celiac if i immediately tell them that I am one. I am worried that it is easier to just accept someone else's diagnosis and run with that. I am sure that s/he will immediately ask me when I go there whether I have any chronic illnesses, but since I have never been to a doctor here regarding these issues I am worried that they will just say do not worry it is from Celiac and won't take a more careful look at me. What do you think? Should I mention it immediately?How should I approach it? I think I will and use it the reason why I want to be checked for certain vitamins? I also would like to see If I am allergic to other things but I am not sure if they offer allergy tests. I want to be as honestd open as possible but I am also a bit concerned because of the insurance. I had to buy a new one here and I am not sure if the doctors will be willing to refer me to the specialists  if they think i already have a diagnosis( since additional tests will cost them more money).  I want to be as honest and open as possible but I am also a bit concerned because of the insurance. I had to buy a new one here and I am not sure if the doctors will be willing to refer me to the specialists  if they think i already have a diagnosis( since additional tests will cost them more money). 

Miss Eloise - you are so sweet. I know you are going through a lot now but you still find time to write to many of us offering advice and support. Thank you. Please know that I am keeping you in prayers and I hope you start feeling better as well.

Once again, thank you all!

Hi all,

Hope your summer is going well. I have not written in a while. I have had ups and down and possibly got glutened but my reactions/symptoms are just weird that I truly do not know when I get glutened. I am still looking for doctors who will carefully look at me but I know I won't find them at the hospital where I was going to so I have to go to some private doctors, which will cost me an arm and a leg. Hopefully, I find a good one and s/he helps me. 

I need advice regarding testing. I was diagnosed with celiac and my anti bodies are still high and I want to see if I can do the blood test again and see where I am at now. Can you please tell me exactly which blood tests I need? I know that some of you have been great at giving advice regarding the what type of tests we need to get diagnosis but I am wondering which tests can be done just through the blood test. I really do not want to do gastroscopy right now.

Also, the doctor never told me about vitamin deficiency and nutrition. So, can you please tell me all the vitamins that we might be deficient of as celiacs, so that I can see if the new doctor can test me? I am still loosing hair . I was going to ask about Iron, B12, Vitamin D but I think there are other ones that I ask for. Maybe Magnesium ...

Also, if I am able to get them to test me for other auto-immune diseases, do you know which ones I need to request? I feel like I am starting this process all over on my own. The previous doctor tested me for some but has not explain which test was for what. I googled what was written on the results, but I am still not certain which tests are for what. 

Very random and possibly stupid question: Do celiacs get grey hair sooner than others? Today I was shocked when I found grey hair and I feel like I am young for that .

Once again, THANK YOU!!! =)

Hi Lacey,

sorry to hear about your diagnosis. Your priority right now should be taking care of yourself. If your boyfriend does not understand it is his problem, not yours. You are the one who has to deal with side effects of getting glutened and ultimately being in pain. I do not want to sound harsh, but it is ridiculous that he is getting tired of eating at the same place, while you cannot even eat everything that you used to before. I do not understand how this has not crossed his mind. I don't know your bf but from what you said, he is not trying to even understand what you are going through and you cannot make him get/understand what you are feeling/experiencing if he is not even willing to try. If he just looked at you, how your stomach swells, and how bad you feel after getting glutened, I would hope he would be more sensitive. I would feel bad for a stranger if he/she told me that they had some chronic illness let alone someone I love. You know best if this relationship is worth your energy but stress is not good for you either or accidentally getting glutened. The last thing you need right now is being called lazy and paranoid. He could also take initiative to find gluten free restaurants for you instead of expecting you to do all the work.  Maybe we are "paranoid" sometimes but who can blame us when we feel like crap when we eat something we should not. I only feel safe eating food I cook. I do go to 2 restaurants as well that have gluten free food but if I go to any other place that does not specify it is gluten-free, I am scared of contamination so I usually order something to drink. If you want future with him, you will definitely have to talk about all of this because many households have gluten free kitchen when one of the partners/spouses is celiac to avoid cc. Would he be willing to do that if needed?

I am in no position to be anyone's relationship guru since i am single. All the questions that you are asking yourself about possibly dating other guys and if they will understand often cross my mind. I was glad that I was single when I was diagnosed because I felt horrible and could not even think of going out.  However, in the moments of panic (when experiencing random symptoms) it would be nice to have that special person next to me to be there for me and offer support. I truly do not know how this will affect any of my future relationships. I am much less social than I used to be since I do not go out to eat a lot (I am so scared of cc) and even drinking two glasses of wine gives me the worst hangover BUT I really have to work on my social life =). Don't think that it is impossible to find a nice guy who will love you regardless of celiac. I have not put myself out there so I cannot expect to meet someone until I am ready for that. What I learned so far in my life is that we should never settle when it comes to relationship. There is a quote that says"Once you settle, you get less than you settled for".

I wish you good luck figuring out your relationship. It does not have to be a quick decision, take time and figure out what is best for you. Don't worry, you are still young =).

Hi all,

I do not think there is a connection between Atlas Subluxation and Celiac but that its symptoms mimic those  of AI diseases (neck pain, tremors, weakness, lack of energy, eye problems). I have been worried especially because of my neck (terrified of MG) but after talking to my Gastro doctor, she thinks it has to be more neurological problems. So, I did some research and came across Atlas Subluxation, which described my symptoms even better. Anyhow, I have no idea what I am dealing with and that I will have to figure out soon but I needed to see if anyone had any experience with this.

Have you had problems with the misalignments of the C1 and C2 vertebrae and if so what type of treatment did you choose? There is a procedure that "puts it back in its place" and I have read a lot of patient reviews but they vary from being great to absolutely scary. I will try to find a good neurologist for his/her professional opinion but I also want to hear what you guys have to say. 

Thank you!

Have a nice day!

Thank you for replying! I am sorry you are going through tough times too. Thanks for being so positive, I know I need to try and get on and try to ignore... Being medically minded I am looking for answers on Dr Google... to my detriment. As much as I don't want to die, for myself I want to live! But it is more for my little boy, we are so very close, and I don't know what would happen to him. Thinking about about it makes me want to vomit! And cry! Tomorrow hopefully I will drag myself up a notch! For his sake. And I will continue with my healthy lifestyle, you are right there is nothing I can do!! Many thank you's, hugs

You really do not need to thank me. Fear is one of the worst emotions. Some very kind people calmed me a bit down yesterday. I would not call myself positive these days when I am thinking about myself but we can be more rational,positive, and composed when looking at someone else's situation. I am having a hard time not thinking about my issues but I am trying even if it means watching one movie after another. I have also spent a lot of time looking up things online. However, I feel that I have to because of my experience with doctors.

Please, please do not even think about the worst case scenario!!! When is your dr.'s appointment? Find something to do to distract yourself as much as possible. I am sending you positive thoughts, prayers, and hugs. 

Hi, I'm sorry that you are going through this and I really have no medical advice to offer. I am also so scared regarding some of my symptoms so I know it is so hard to try not to think about it until we get to see a doctor but please try! Hang in there! It is better that doctors do not speculate about possibilities although it can seem shady to us. I know that I would want to know the best and worse scenarios and possibly hearing something bad (which does not mean that is actually happening to you because you do not have test results) would just freak you out for no reason.There are so many scenarios, including good ones, so until you get tested you won't know. Your healthy lifestyle is a good thing. You are doing everything you can at the moment. 

I really appreciate your kind words and support. Bringing someone with me to the appointment could be a good idea but there are still finals at the university so I am not sure if my best friend will be able to come. I am really trying not to think about it but it is hard.

I will definitely ask her to print out all of my results for me. Once again, thank you! 

Hi all,

I have recently joined and posted a couple of times already because I am freaking out.I do not think I am strong enough to deal with another (possible) AI disease. I am in a bad place and I have never been so scared about my future.

As I said in previous posts, I am afraid to give you all of my symptoms (although I know you could be helpful but as I said, not having a doctor to consult me, it will freak me out even more) at least until I get to talk to a dr. I have been researching online a lot on my own and as I said I am already freaking out.

I managed to get an appointment with the gastro dr. that diagnosed me with celiac. The last time I saw her (last month-my yearly check up), she could not really tell me much because they forgot to test my blood for anti-bodies and celiac related tests(did not really explain what exactly). So, I did blood test again and then she sent me to do BMD and ultrasounds, which were ok. She asked me just to call her for the blood results and that we would meet after i complete these 2 tests. When I called her, she said the antibodies were still high but did not want to go into any details. I asked her if she would give me the results so that I could have them if i found a GP and she said it was not necessary to show them that. Now I am worried why she would not give them to me.

I am scared of Myasthenia gravis. I have not been tested for that and since she never explained what she tested me for, I began typing all the results and abbreviations online trying to figure it out. So last month she added additional tests, which included Crohn's and Graves (based on what I googled). My mom has Crohn's and i do not have those symptoms. 

So, I know that tests are not good based on that brief phone conversation, I feel like crap and terrified.  Some people say: things could be worse, try to be positive and I agree so I do not want to complain but I never ever thought I would have to be dealing with something like this. I am sure you understand this feeling as well.

Any recommendations on what to specifically ask her when I see her? I was going to ask her to confirm all AI tests she did and if I need more tests. Tuesday cannot come fast enough but then again, worried what my results will say =(.

Thank you all for your response! I really appreciate it!

Since I am a student, I live in the residence hall. I have my own room with a small fridge but I share kitchen. However, I keep all my food and dishes in my room. If I have to use kitchen and see any bread crumbs I do not come anywhere near it. I also use oven a lot. I buy these special plastic baking bags, where I put meat and veggies in it and bake it. I feel much safer preparing my food that way so that I avoid any contamination.

I live mostly on veggies, fruits, and meat. Last month I did drink milk (i was not drinking it at all after my diagnosis, and then i would have a cup of coffee with milk once in a while but last month I drank a bit more 1,5l in 2-3 days), ate Vanilla Haagen Dazs ice cream (confirmed that it was gluten-free) and I did eat some gluten-free sweets (made of corn and nutella). I am wondering whether I am allergic to soy lecithin, corn. I also ate some ginger cookies (labeled gluten-free). I usually do not eat anything that is not labeled gluten-free, including rice, lentils, beans, etc.

On Tuesday I will insist on finding out what they tested me for. I really think that one of the reasons that doctors are not telling me things is because of their more relaxed approach to celiac and telling me that I do not have to worry about taking gluten-free vitamins, sounds crazy to me. Another reason could be the language barrier as they do not feel comfortable explaining it to me. I do not know.

I was truly hoping that my gastro doctor would try to help me more. I was not even told whether or not I should take vitamins and I was given only iron after I asked about it and it was low. Now it is in a normal range, but still on the lower side. It is unbelievable how tired I get these days and random muscle pain and weakness. I truly feel that people on this forum are more willing to offer advice than some of the doctors I had seen. 

Thank you!

Hi all,

these last few days I really need answers and support more than ever before. I am terrified because I have no idea what is going on with my body. I used to be a healthy person (or I thought i was) who ate healthy and exercised. These days I am constantly tired and in pain. It has been a year since I began following gluten-free diet and I have never cheated and rarely even eat at gluten-free restaurants. Prior to my diagnosis, I only had constipation so I did not even realize I was sick until I ended up in the hospital because I was so dehydrated, and they had to run multiple tests to find out why. After I was diagnosed, I did not have much energy, had these weird brain fogs sometimes but not bad in general. But for the last 9 months I started noticing other things. I have had problems with eyes, tremors, twitches, headaches and unfortunately no one is looking at me closely. I am not in the US and the doctors I get to see either do not speak English very well or do not really care. It does not help that I have some weird insurance so even finding a gp seems impossible. Apparently, I have been tested for a lot of AIs but I do not really know exactly which ones (I was never explained but I will ask next week) and I think they think that I am just making stuff up. They just tell me not to think about it, that I am not the only Celiac and people live normal lives, etc. When I ask them about getting tested for other things, they say they do not know where to send me since I do not have a gp. I have an appointment with the gastro dr. who diagnosed me next week. She already told me over the phone that while my tests have improved some there are still high. She seems nice but I also get a feeling she is tired of me (although I only contact her when I am supposed to but seems that she does not like when I ask questions). According to her, I do not need to worry about buying gluten free vitamins or using gluten free shampoo, lotions, make up, etc. However, I am still very strict about this and only use things I ordered from the US. 

These doctors are more interested in typing up results than listening to me. My life seems to be about dealing with these issues. I am a student and I spend more time feeling ill, scared, or at the hospital. My family and close friends have been supportive but I feel I am becoming a burden and while others are worried about graduating, finding jobs, and starting families, I live in fear of what the future will bring. I hate answering to the question-how are you? I just want to say I am ok.

Yesterday I posted a question about Gardasil because I would hate if I somehow contributed to this. It is possible that I inherited a gene from my mom (I was told I could not be tested here to make sure) so I wonder if by getting those shots I somehow activated it. A friend of mine posted an article on fb about gardasil and its possible connection with AIs.

This forum seems like a great place for answers and support. I want to write down all my symptoms and hear your opinion but at the same time I am worried that I will read something that will freak me out especially because I do not even have a doctor to turn to in case I want to check it out. I used to be positive and social and I am not anymore which I do not like at all. While other people have exciting things happening in their lives, I deal with medical issues and one person made a comment "so everything in your life is about going to doctors" and the way it was said was so rude and hurtful that I have not spoken to that person in 6 months. I look for private doctors, pay out of pocket for some tests but I still do not know why I feel the way I do. 

I do not know what to do...

Hi all,

I was diagnosed last year and since then I religiously follow gluten-free diet. However, I do not feel any better and I am afraid of other auto-immune diseases. I have been trying to figure out how and when all my symptoms began and I cannot exactly remember because prior to my diagnosis I did not have or did not notice too many problems (I was working a lot so I wasn't really paying attention to myself as much as I should have). Anyhow, a few days ago I began thinking of all shots that I got and thought of Gardasil. I found some stuff online about its possible link with auto-immune diseases. Have you heard of this? Do you think there could be a connection? Have your doctors said anything?