LookingforAnswers15

Thank you all for your support. I agree that getting stressed out can just cause more symptoms. I am hoping to see a rheumatologist tomorrow. Any specific questions or tests to ask for? 

It has been almost 2 years since I have been gluten-free. I think it has to be something else at this point. No one would be happier than me to be wrong. I really do not know what they will do on Monday. I will ask them to check Vitamin B and D at least. Most of the tests that have been done were done because i kept requesting them or because I went to a private lab and paid for them out of pocket. No one is looking at me carefully. One immunologist that I thought would help me in the end did not. I got the referral for a rheumatologist because I insisted I had joint pain and was still not feeling well. I am just so scared what the future holds in store for me. I cannot believe how much life has changed in last few years. Thank you for responding.

Dear Bartfull, 

I can't even find words to describe how sorry I am to hear this. I am at a loss for words. Thank you for all the support that you gave to me and others on this forum. God bless you. Hugs.

Hi all, I have been away from the forum for some time. Since I knew I could not get any more tests done or see doctors until this next week, I tried avoiding thinking about my health problems as much as possible. Since I began working, that has helped keep my mind away and it was nice not to think about it. However, I would lie if I said that I was not thinking about it, but just not as much as I used to. I know all my test results by heart so I do pay attention to how I feel. Since the last time, I gained some weight. It was my goal (although I looked ok with the weight I had) because I was hoping it would help stop my hair loss. I am losing less hair but I am not sure if this is as result of this or seasonal changes. Unfortunately, for the last month or so, I have eaten some  gluten-free rice treats with chocolate. Prior to that I was just eating meat, fruits, veggies, and rice, cooking with an olive oil. I went to get my blood test yesterday and I am scared. In august, an MRI of my neck revealed enlarged lymph nodes in my neck and one in my shoulder. I do occasionally have a pain around my armpit and I am not sure if it is from that. I went to the specialist and he said nothing to worry about but it has always been on my mind. These are the results that worry me:

lymph% 50,4 (range 20-46)

neut% 39,1 (range 44-72)

neut# 1,80 (range 2,06-6,49)

They also found bacteria in my urine. My cholesterol is 5,2 (0,0-5,2). Proteins 81,0 (range 66,0-81,0).

WBC RBC -ok

It has been cold in my office but it seems that it is much colder there to me than to other people who come there. 

Not sure what to think but Dr. Google freaked me out yesterday. Please offer any advice you might have. I am hoping to see a rheumatologist next week since I had to weight over 2 months for this appointment. Thank you.

Lab just called me. They originally forgot to run Rheumatoid Factor test so they did later. It came back POSITIVE. I am just crying now because all of these results can be related to Rheumatoid arthritis, lupus, and other scary diseases. It seems like I have something else apart from celiac. As much as I try to calm myself all I see is more tests, more hospital, questionable or insufficient treatment if needed. The country I am in has a horrible health care and God forbid it is RA, I am screwed because I read in the newspapers how they do not provide good care/treatment to these patients.  

Hi all,

once again I need your advice. I did not reveal to my employer that I have celiac disease. It is mainly because of where I live and how it is culturally perceived when you have a chronic disease. Although I am good at my job, it would be perceived as a weakness and possible 'trouble' for my employer. Thus far, I have showed that I am a hard worker always coming early or on time to work and diligently doing my duties. My trial work period is 6 months and I am trying to fly under the radar with my health issues. However, that raises a question how to go to already scheduled or when I have to schedule dr's appointments. I truly do not want to lie and I would be completely ok with taking an unpaid day (since I do not have any vacation days for first few months) but taking any time off to go to a doctor will raise other questions and possibly negatively affect my employment. I am supposed to finally get my thyroid checked next week but I am not sure how to explain coming to work late. I  would definitely make sure that I stay longer at work and make up for the missed time at work but I am not sure how to explain being late 2 hours. How can I tell them that I had to go to a doctor? If I do say I needed to see a doctor, should I downplay it (and if so, how) so that they do not ask other questions or require me to provide a detailed dr.'s note since the note would state what and why they were doing these tests? I hate that I cannot just be honest and tell them but majority or all of places here would not hire me if they knew about celiac and other symptoms. It is very discriminatory but anything is possible here. Please let me know how you would handle this. Thank you.

Thank you all. I will have to look carefully and see if they sell those brands here. I drink freshly made ginger tea every day and a lot of chamomile tea as well. 

Hi Annie, hang in there. I know you are going through a lot but although slowly, you are figuring it out. I felt worse as well and realized that other food affected my joints and caused pain. I am waiting to get my thyroid tested now. Regarding Hashimoto, I know what I have heard from one friend who has been recently diagnosed. She is not on any medication either but she takes Vitamin D and I believe Selenite (if that is what it is called). The doctor told her to just keep an eye on her symptoms and if she notices any other symptoms to go back to him.

Brain fog is common. I almost felt relieved that this is an actual thing. I always used to be someone who could do anything I set my mind to but after I got out of the hospital and began gluten-free diet, my brain just did not work. I also had dizzy spells and literally had to hold onto something not to fall down because my knees would start shaking. I fainted once but luckily did not hurt myself. I also had a pain in my lower left abdomen. I thought it was an ovarian cyst or something but it turned out that it is from celiac. Once the doctor prescribed me antibiotics that had gluten in it and I felt pain there. 

You will figure it out. It sucks for sure that we go through this but it is the only body we got so we do our best to get better. Some people complain about having a flu and they do not even realize what people with autoimmune diseases go through. 

My advice to you is: pay close attention to all food ingredients now so that you see if some food that is gluten free actually bothers you because your body needs to heal. Also be your advocate. I have been probably labeled a hypochondriac but I live in a country where medical care sucks. For doctors, it is easier to say it is just stress than to actually do their job. I am not the most positive person these days when it comes to me (since I worry about other symptoms) but when I read your post, I felt that you should know that you will get better. Since I have experienced some things you are experiencing and they got better for me, I am sure they will for you as well.

Regarding food: pay attention to your body when you eat: nightshades (eggplants, tomatoes, potatoes, and peppers), dairy, corn, oatmeal, and sweets in general. I noticed that my joints and palms hurt more when I consume sugar. When I had very crazy symptoms and horrible joint and lower back pain, I consumed everything i mentioned above. Then, I cut out all of this and started feeling better. The other day, I found gluten-free and lactose free chocolate and I did indulge in it since I did not have it since September, and soon after I experienced pain in my palm. Even if you cannot eat this at first, you can introduce it later on after you heal. I recommend eating rice and eating sweet potatoes. Also, bone broth is super healthy for us.

Hi, i am very careful about being gluten free so all my make up and shampoo are gluten-free. However, I really need to figure out which hair spray is safe to use. I stopped using it but I really need it to style my hair since I have been losing hair.

Thanks a lot.

Hi, it does get easier. I used to love trying different cuisines and had a lot of things I loved that I cannot eat now. What helped me was not even concentrating on what I can't eat but figuring out new things I can eat. I honestly do not even think about my favorite dishes that i can no longer eat. I am also the only one who is gluten-free free in my family and to avoid cc, I have a few things that I only use, a couple of  pots and pens, utensils, cutting board and cleaning sponge to avoid cc. I prepare 99% of my food. I am not saying it is easy and i wish there were days i can just grab something on the go when i am too busy to cook and hungry at that moment but I always replace it with fruits until I fix something that I can eat. I would rather be hungry than get sick. I also had to get rid of some other things such as sugar, soy, dairy, corn, nightshades (white potatoes, eggplants, tomatoes, and peppers). Since you say you are very sensitive, pay attention and see if you react to some other things. Even if you are unable to consume these now, you might be able to add them to your diet later on after your body heals. We all went through and are going through this so we understand. It is not easy but with time we learn how to cope with it. I think you are in a difficult period after going gluten-free but you will get out of it. I felt fine after going gluten-free and then a few months later realized I was not feeling well because of these other ingredients. I am almost 2 years gluten-free and I have never cheated and have avoided cc to my best abilities but my antibodies are still far from normal since they were super high when diagnosed. So, it takes time but I am hopeful because with every check up, they come down. Good luck. Do not lose hope!

Hi Donna,

do not worry! When they did my colonoscopy it was just as you described like a twilight. It does not hurt, you do not really know what is really happening and once you are done you are just happy that you do not have to think about it any longer that you forget that you had this unusual experience. Do not cancel it!

Thank you Manasota and Cyclinglady. I am not sure I will get a good rheumatologist. The one that is supposed to be good is booked until May so since I can't get to see her, the nurse made an appointment with some other dr. We will see...

Thank you for the support cycling lady.

Hi,

I keep wondering why some doctors choose this profession when they appear not to have a sincere interest in their patients' well-being. Today I broke down and cried because I was tired of it all. The doctor I believed that was willing to figure out what is going on with me showed no interest in helping me and was not interested in my symptoms. I asked to be referred to rheumatologist and my appointment is in 3 months =(. 

Hi all,

thanks for your input. I live in one of the less developed countries in Europe. If I state the country I am from and if  any of the doctors or people that know me looked up celiac and this forum, it would not be hard for them to figure out it was me based on my question, stories, test results, etc. (not sure how likely that would be but better safe than sorry)

Anyhow, regarding this question, I just need to accept that things here do not function like they should. I am very familiar with the U.S. employment procedures and I think any HR person from there would be shocked to hear all those illegal questions I was asked. I would have hoped I was asked more about my graduate degrees rather than these illegal questions.  Truth is that I need the money since I am paying for a lot of tests out of the pocket so I accepted the position. I am expected to have a physical exam, no idea what tests it requires...I will see...However, at work, I am not sharing with any of my co-workers that I have celiac. Thanks again.

Hi, i have a question regarding looking for a job. This is the first time that I am applying since being diagnosed and I am not sure what to disclose. I was so disappointed that some job applications even ask if an applicant has any "chronic" issues. I feel it is discriminatory. Also, after you are offered a job, you have to have a physical exam. If I understood correctly, getting a job is dependent on this. I am so confused by all this. As you can see from online, I have had a lot of issues but i should be able to work and these positions are administrative, not physical in nature. So, my question is how do I proceed if offered a job? Since I am only diagnosed with celiac as of now, do I just mention that?

Hi all,

I thought that I should share this article with you. It is important that we know what can help us or hurt us. Sometimes we take certain medicine/ vitamins/ food that we think is good for us, when in reality can be very bad for us. Despite brain fog and horrible symptoms a few months back, I am glad that I was still able to figure out some of these things. When I went to see a doctor (that I paid a ton of money to see because the clinic was supposed to be have the best doctors, equipment, test), the doctor did not seem to know anything about autoimmune diseases and when I had a cold she recommended taking some over the counter medicine to boost my immune system. I came home and began thinking... my immune system was already overreacting so what affect this could have on me. Luckily, I decided not to take anything. Later, I came across similar information that this article included. For example, Echinacea that is usually good for people when they have a cold is not good for us. I am not sure if all this is true but it makes sense to me. So, if you think this information can help you, you can read the article: 

Open Original Shared Link

Hi all, 

I have read that green tea is excellent for many things, including its ability to protect joints. My question is about making sure about possible cross contamination. Are tea bags safe or do they contain gluten? I feel like I read somewhere that all might not be safe. If so, which brand of green tea do you recommend?

Thank you!

On 2 Jan 2016 at 7:55 PM, icelandgirl said:

Most Dr's will only test TSH for thyroid.  It has a large "acceptable" range of .45-4.5.  I feel awful unless mine is close to 1, but my previous Dr told me I was fine when it was 4.65, even though I felt awful.

 

Hi Icelandgirl, I have a quick question for you. A good friend of mine got tested for TSH and it is 4.6. You said yours was 4.65. How did you lower it down? Thanks a lot! =)

Hi,

since you said that you know gluten makes you sick, I think I would just stay away from it until after you get a child and then if you can, go back to eating gluten and get tested. However,at that point you might not be able to do gluten challenge and have to be ok with not having an official diagnosis. It is a shame that your doctor and/or dietitian did not recommend any blood tests at that time instead of just telling you to go gluten-free. I believe glutenfreemomma told you the main blood tests (IgG,IgA,tty). There is also a genetic test that will show if you have that gene. Nvsmom made a great list of tests for celiac disease (I am not able to look it up for you now) and it is often cited on here, so you can easily find it. Some of the blood tests may come back negative even for people with celiac disease so biopsy is the most reliable. However, I am thinking that if you have celiac, it is possible that the blood tests will still reveal it so if you can, do them ASAP. My reasoning- my blood tests were so out of the normal range that even after one year, the antibodies are still elevated and show in my blood. Also, since you have such a big reaction to just eating a salad, if you are determined to try to get pregnant right after the wedding, I am not sure that eating anything with gluten would be good for you. Your body might be still healing from not only from getting glutened this time but even from previous consumption. Recovering from gluten can take days, weeks, or months. I am not sure if my advice is the best one but this is just my reasoning. There are some very knowledgeable people on here, so they might be able to give you a better advice. Definitely talk to your doctor about this. Congrats on your wedding!

All of you have been so kind and helpful to me and I really appreciate it! =)

Hi, I agree with Cyclinglady. As she said, it is not worth it. Also pay attention to different sources of hidden gluten (e.g. vitamins, sauces, frozen french fries). Also, for you it is important to pay a close attention to everything you eat that is even gluten free. Your body might react to things such as dairy, nightshades (potatoes, eggplant, tomatoes, peppers). You might not react but if you eat something like this and do not feel well, do not worry. You can get tested for food allergies/ intolerances (eggs, soy,etc). Even if it happens that milk bothers you, you can stop drinking it but reintroduce it later to diet after you have healed.

Try to avoid cross contamination (e.g. using same wooden cutting board that was used maybe for cutting bread, toaster, etc).

The UK has so many gluten free products. I happened to visit it just after I was diagnosed and I was sooo happy with the variety of bread that I was able to find just at Tesco. However, I would recommend not to go crazy eating all gluten free cookies, muffins, granola bars. I think I went overboard with that because I was so excited that I could buy that there. However, apart from possibly containing soy, eggs, milk, it is a lot of sugar that is definitely not healthy for us. However, you can buy awesome flour (not sure what it was called, there were white bags with blue and red writing. One of these bags (i think with blue writing but I am not sure) is great because whatever you make, you just need to add water, no need for baking powder, so it is so easy to use it). Good luck.

Thank you Gemini, Icelandgirl (thank you for posting it again after the first one disappeared ), and Nvsmom and once again, Happy New Year!

 I started taking 4000 IUs of Vitamin D. Thank you for telling me that it takes time to raise it. I am not sure when I will get it retested but I am not worried about that now since I began religiously taking Vit. D. I know I need to get it up and I will just continue taking supplements. 

Regarding ANA, I really do not know what to think about my tests. I was also thinking that it could be because they were done in different countries. Nvsmom, you really know a lot about testing. As you said Gemini, I really do not like that they do not provide actual numbers. 

I was tested for thyroid some time ago and they said it was ok but I am not sure which tests they had done. What tests do you recommend that I have done for thyroid? I have to take a look again through so many test results I have.

 Thank you again!

Hi all,

First of all I hope that those who celebrate Christmas had a wonderful time with their families. I also want to wish everyone a very Happy New Year filled with recovery and happiness. There are a few individuals (you all know who you are) who have been responding to my posts and have been very helpful and kind to me. Thank you. I know I get overwhelmed and scared and I appreciate your support.

Getting necessary tests done is a bit complicated in my case since I have to get them done in different places: 1) the country where I used to live and where I was diagnosed and still have health insurance until the end of this year, 2) my home country that does not always have all necessary supplies/ substances to run these tests so I have to wait for a long time for the results.

So, in August (in my home country) my ANA was weak positive and in November, I was retested again. I just got the test result this week and it was written Positive (with one +). Apparently, ANA can have up to four +.

I did not know that I was going to be retested in my home country in November, and a week or so prior to that, I had to go to the other country where I was diagnosed for a 6-month celiac blood test. I asked the doctor if she could also order ANA test and she did. So, the last time I posted, I wrote that my ANA test came back as negative. 

So, in November, I ended up having ANA test done twice and once it came back as positive (in my country) and once negative (in another country) and blood was taken maybe 7-10 days apart. How is this possible? I was not given any range values.

I was supposed to see my doctor in my home country once I got the test results, but the doctor has been out of the office.

My Vitamin D is lower than normal: 24 (normal range 30-50), but I hope it can get better since I am taking Vitamin D pills.

My right hand, wrist hurts, joints in my entire body make popping sound, I am still losing hair and my hands and feet are cold. I am wondering if this can be caused by APS or something else. This is why I am still concerned but I know that there is nothing I can do and what is meant to be, will be. Any advice? Thank you.

Dear Kareng, Gemini, and Dee, thank you for your response! Gemini you were right, I needed to back away from my computer so that is why I have not been online for some time. Thanks again for being there for me.

Hi,so my quest for answers continues: I got some results back. My ANA test was repeated and this time it came back negative and RF <20 (normal range), which really made me happy. My IgG is still 60 (normal range <20), which slowly but surely is going down (it was >200 when I was diagnosed), so I will take this as a good progress. I am just waiting now for the anti-beta-2-glycoprotein I antibodies test for APS but it is 99% sure I have it. 

My question is about Leukopenia. My doctor did not even mention anything about this but when I came home, there was just written Comment: Leukopenia. I have a lower number of white blood cells (WBC). The normal range starts at 4, mine is 3.9. However, I know that this number was always lower. I believe it was 2002 when I first started having ovarian cysts. My lab results then showed lower WBC but no one seemed concerned. At that point, I considered myself healthy. I exercised, rarely got sick, etc. However, it is possible that I already experiencing celiac symptoms. I had some rash on my arms. 

I read that a variety of things can be causing this, including other autoimmune diseases in particular lupus. I finally started hoping that lupus is off the table with ANA and ENA being negative. 

Do you have any knowledge/experience of Leukopenia? Should I be concerned?

Although my own research has helped me get rid of some symptoms, reading online also opened my eye to so many other AIs and their dangers, which can be good and bad. Good because I know what I need to do to feel better and bad because I worry about other AIs. I really do not even think much about celiac disease. I make sure I eat gluten-free but I spend more time worrying about the "unknown". I never used to be this way before but this changed after I started learning about autoimmune diseases. Any advice would be appreciated. Thank you.