LookingforAnswers15

Hi,

I am sorry to hear that you are having a difficult time. It has been only 5 months since you have been diagnosed and although your tgg is higher than normal, it could be worse. Mine is still higher even after a year on gluten free diet. Although it is hard, be patient. You have already shown improvement and with strict gluten-free diet and avoiding dairy (at least for now), you will heal and feel even better.

I can tell you what I have learned that has been good for me:

- Bone broth. 

- No gluten free processed food (cookies, snacks). I used to eat them but realized I would have some symptoms afterwards.

- Check if you are reacting to soy, dairy (which you already know, so you have to avoid), eggs, nightshades as these are the most common things we react to. I also cut out corn.

- Check out AIP diet.

- Eat bananas- help with digestion.

- Drink enough water.

- Use coconut oil. (You can put one teaspoon into your tea, coffee, cook with it).

I have had so many more scary symptoms and most of them went away after I focused on eating a clean diet. I know it is hard but when you are not feeling well, even if you are in your bed, try to look for some recipes, food that can help you heal. I use pinterest to look up smoothies, anti-inflammatory food, aip diet, etc. This forum has helped me a lot to figure out some of this because my dr. never even mentioned a possibility of me reacting to other things.

I am definitely not impressed with some of the doctors I had gone to. They really need to familiarize themselves with celiac more. One dr. told me that we (referred to a medical community) still did not know much about celiac disease and I had to bite my tongue not to tell him that celiac disease was well-studied but that he was the one that did not know much about it. I really think I knew more about it than he did and he just wanted to argue that I was only under some stress, when the only stress I had was the fact that I was paying him and he did not even listen to me or tried to help.

I hope you feel better soon! Good luck.

THANK YOU CYCLING LADY! I really try not to think about it but once I do not feel well, I start thinking of all changes that I have noticed happening in my body and combined with some bad test results, I get so scared. Thank you again for being there for me on Thursday. You helped so much.

Hugs.

Hi all,

When I was in the U.S., I loved shopping at Trader Joe's. My best friend was in the US and knowing that I loved this store as well as being afraid (cross-contamination) to buy any spices here, she bought me things that she thought I could use. So, do you know if Trader Joe's Spices of the World Turmeric and Ground Cinnamon are ok for us to use? Also, what about Trader Joe's toothpaste and dried cranberries? I am truly hoping I can use all of it. I miss cinnamon like crazy but there is no guaranty that the one here is not cross contaminated, so I am staying away. She also brought me Manuka Honey and I am so happy. For those who have not heard/tried it, I highly recommend it. Based on what I have read, it is super healthy and good for eczema, cough, immune health, wound healing, anti-bacterial, etc.

Is Organic tricolor quinoa (certified gluten-free) good for us? Is it possible to react to it? I have never tried it so I was wondering if it is ok if you are a very sensitive celiac?

I also ordered some New Chapter Vitamins from England and it says on the box that they are gluten-free. However, in a smaller print it says: Contains: fermented soy and fermented wheat (as food source for saccharomyces). Is this safe for me to use? I believe I react to soy so I avoid it. I do not want to sound stupid but I do not know how "fermented soy" and "fermented wheat" differs from regular ones and if I can still react to it.

Thanks a lot!

Thanks Cyclinglady, I really appreciate your support and being the voice of reason. I have been hiding most of this from my family until I know for sure what is happening.  I put them through so much already. I really do not want to be all dramatic on this forum but it is the only place where I can look for help and support in moments of despair. My family and a couple of great friend have been through thick and thin with me and I really feel bad to burden them with even more issues.

I really do not know how to feel anymore. I am just tired of dealing with all of this. Honestly, I am not afraid of celiac but all other possible AIs. It just seems that every time I get a bit more hopeful about getting better, I get knocked down. To my knowledge, when I was tested in another country, CRP was ok. Now, all of the sudden it is so high that it freaked me out.

The doctor that is thinking of Hughes seems to think it is possible I have it based on some specific tests she ran. She said if the results are the same the second time around, it means I have it. I feel like I am going to end up being a ticking bomb (with possible blood clots and other cardiovascular problems). I still do not have my ANA and ENA results, RF came back negative and I am still so worried about lupus. High CRP was mentioned in relation to lupus, pneumonia, arthritis, pelvic inflammatory disease, and inflammatory bowel disease.

I have not had clots that I know of.  The healthcare here is not the best. You have to wait months for appointments and tests. We do have some good doctors but it is hard to get to them. If they do not have their own practice and they work at hospitals, you wait for them for a long time. The otolaryngologist has his own practice, so I was able to get to him faster. He said he feels safer giving me penicillin shots because of celiac disease so that he ensures that we avoid getting me glutened with antibiotics since I seemed to react to them the last time.

THANK YOU AGAIN especially for even looking up additional info.

Hi,

I am desperate and I hope someone who has any knowledge about this will respond. I even wrote about penicillin shots and hughes syndrome yesterday. I got results for CRP and it seems so high. I am waiting to talk to the doctor over the phone but do you know anything about this. Thanks.

Thanks Galixie. I have to go back after my next period for another ultrasound and I think she will decide then what we need to do next. You are completely right. If there is a chance that I have some hormonal imbalance, I should know which hormones are out of balance instead of just putting me on some hormonal therapy without any prior tests.  Thanks again.

Hi,

I was wondering if anyone has gotten penicillin shots instead of antibiotics. Last month, I was given antibiotics because I had a very sore throat and my neck was hurting. Apparently, I have a chronic tonsillitis (which I had no idea until this dr told me). Anyhow, last week, I went to the hospital thinking that I would get all my test results that I have been waiting for a very long time (still don't have them all) but I think I caught something else instead at the hospital. Since then, I have not had temperature but chills. I also have a stuffy nose that sometimes turns into a runny nose, my throat is hurting, hard to swollow, some mucus, and I have a horrible cough that prevents me from sleeping and afterwards my chest/lungs hurt a lot. It literally wakes me up every night and I end up staying awake until early morning, drinking tea. 

So, today, the otolaryngologist said that I have everything inflamed: tonsillitis, sinus infection, laryngitis, and bronchitis. I really did not expect that all of this would be a problem. I was hoping that I would be eventually able to cure myself by drinking tea (ginger) with lemon, honey, and coconut oil. He said that he wants me to get pencilin injection for 10 days since I am worse than the last time, and the last antibiotics seemed to have something that bothered me since my stomach was upset and i got eczema on my face so we all assumed it had to be something related to celiac. He also gave me some other pills that the pharmacist claimed that they did not contain gluten (I guess they are supposed to help with mucus as well as to protect stomach from all these other pills). I will start taking them tonight. He also told me to use "Nasonex", which is apparently an American brand, that he thought was extremely good. 

Have you used Nasonex or gotten penicillin shots?

Lastly, based on some results I got back, it seems that the doctor is thinking that I have APS/Hughes syndrome. She mentioned that this can cause blood clots. She said that I have to be retested to confirm this diagnosis. I really do not know how to feel about this. I have learned how to deal with Celiac and at this point feel that I have some control over it since it is on me to ensure that I do not get glutened while I can never know if I have blood clots or may suffer other complications

My celiac antibodies are still high but going down. The range used here is different from the one used in another country where I was tested and diagnosed. If I am converting it correctly, they are still more than 2 times higher than normal but this is still good considering that they were still much higher the last time I was tested. While it has been difficult to wait this long for the results, the doctor that tested me has really tried to run tests that could help me figure out what might be going on. Being in one of the less developed countries in Europe does not help so I guess I need to get used to waiting. 

So, now I have to assume, so if one has this APS/Hughes syndrome, is it safe to get penicillin shots? Any experience with penicillin shots in general?

Thank you!

Hi Nelly, 

Have they recommended dietary changes or they just wanted to provide "quick fixes" (if they can be referred to as such) before giving you pills or vaccines? I really do not know anything about that but when it comes to allergies, as a celiac you need to know what you are reacting to and/or allergic to. If you already know or suspect some, I would recommend completely avoiding these for some time (at least 30 days) and then slowly start reintroducing them (e.g. first milk, wait and see how you react, then others but one at the time so that you know for sure if it bothers you). I really do not know if eating any of these in moderation is good for you right now.  Some people (like me) are super sensitive and I had eczema develop after I ate just one gluten-free granola bar that had to have something I am reacting to. So, everything in moderation would not work for me. Also, I read on one allergy test that getting negative results does not mean that the body is not reacting to certain things. Therefore, as celiacs we need to listen to our bodies.

Has anyone used Chinese medicine? I came across "sairei-to" and it seems to be helpful with autoimmune issues in general. However, I really do not know anything about Chinese herbs/medicine so I wonder if it is really helpful. If so, is it possible to order online? Thanks

Hi Victor10,

do not worry about having a terminal illness. Gas was one of the weirdest symptoms I experienced at first and it made no sense to me but I know for sure now it is directly connected with celiac. It is uncomfortable and embarrassing but unfortunately it happens. It will go away after being on gluten-free diet. I have had gas issues (that lasted a few days) twice. One time before my diagnosis and it lasted I think at least a week (this was over a year ago) and recently last month when I ate that stupid granola bar that stated it was gluten free, dairy and soy free. So, you won't be stuck with gas forever. Do not worry about this as long as you are eating healthy. What helped me was just eating clean diet. I do not eat any gluten free processed food and I occasionally drink ginger tea (which is anti-inflammatory and great for you in general). 

Also, cooking with turmeric is great. I know that you said that you do not really cook much but you can buy New Chapter gluten-free turmeric pills. Turmeric is also know to be anti-inflammatory. 

Make sure you drink enough water and eat bananas ( I think you might be the third person that I told this to). I literally lived on bananas that first time and I think they really helped with gas, regulating bowel movement and digestion in general.

Lastly, use bone broth. 

All other suggestions are great but it may take more than a couple go hours for them to work (just like anything else I mentioned). If you get officially diagnosed with celiac (even if you don't but realize gluten is an issue for you), you will learn that there are no quick fixes when it comes to these issues. It takes so little to get glutened but much longer to heal. You just have to keep rolling with the punches. Sometimes we feel better, sometimes worse and it is normal to feel scared and frustrated. I am not a hypochondriac but I have most likely been labeled as one lately since none of these doctors were digging deep enough to figure out what can help me with my symptoms. If I can offer you a piece of advice is that you do not say to a doctor that you are a hypochondriac when you walk into his/her office because that label will stick with you and they might brush off some of your symptoms and worries. It sucks having to justify that these symptoms are not "just in your head". Just because I mentioned that I try to educate myself on some of these health issues, the doctor today said that all the tests I have had done are done on my initiative (did not take enough time to carefully read my tests results because if she did, she would see that each doctor referred me to another). For you, it is good that you know that you are a hypochondriac so you can actually use that as a coping strategy. For example, if you ever get overwhelmed with fear of terminal illness, take it as - I know I am a hypochondriac so it is most likely not the worst case scenario that I am thinking about but I will look into this issue to figure out what is going on. Maybe it will help you control these fears.

Waiting for the results is stressful  and scary for sure. As much as I was happy that they tested me for specific things this last time, I have been waiting for my results for a very long time and having to call the hospital to see if my test results are in is truly scary. During this time, I have went through ups and downs and my emotions have ranged from feeling terrified to hopeful. It depends on how you also feel that day and stress definitely does not help. I would describe this as a roller coaster ride. At some point, you just want to find out. That saying 'what does not kill you makes you stronger' could be applied here. Although I would be the first one to say that I do not feel that I am strong at this point, I as well as other celiacs are and have to be strong. We go through so much that we learn to deal with things that people without chronic illnesses do not even know how because they did not have any experience with this. I see people complain on fb about having a cold or something like that and I literally miss those days when these were my only worries. 

Wish you good luck! Hang in there. I really hope and think that things will be much better than you expect them to be right now.

Hi Cyclinglady,

good idea. I will definitely look into it but I do not think it will be possible since I have never heard of compounding pharmacies here. I have to figure out something. I will definitely ask. I really need some good news. I just feel it is one thing after another and of course I need to keep fighting and figure this out. Even this doctor today told me I should not be using forum and internet in general to try to figure things out. Thanks to this forum, I figured out about so many things that no doctor has mentioned to me. 

None of us imagined having to deal with celiac and other issues. I am really tired of dealing with all of this. While my friends are planning their weddings and having kids, I am hoping not to be diagnosed with other AIs. I am genuinely happy for them and take time to pick perfect presents for them but later I wonder if I will ever get to experience any of this. This has been on my mind even more after this appointment today and the only thing that I can even focus on (if I have energy and feel somewhat ok) is trying to figure out what can help me feel better. I really think that only people on this forum understand what I am going through. 

Hi all,

I have a question regarding ovarian cysts. I saw a gynecologist today and she found some. I knew I have had one for some time but I was told that it was a water cyst that comes and goes and nothing I needed to worry about. Although no one has told me that I have PCOS, if I am not mistaken,  having ovarian cysts is PCOS. At some point, I was recommended taking birth control pills, which I took but I do not think they helped. After I was diagnosed with celiac, I stopped taking birth control.

So today, the doctor stated that ovarian cysts, especially the one that I have had for some time, can mess up my ovarian wall (or something like that) and that I should be on a hormonal therapy to try to get rid of them. However, she was not sure what to prescribe me since she did not know which pills contain gluten. She also told me to look at birth control pills. I went to the pharmacy and they found one kind of hormonal pills that has corn starch, which I am also a bit hesitant to take since I might be reacting to corn. I called the other hospital's lab and they promised me to have my test results by the end of this week, so I hope they tested me for corn.

My questions are:

1) If you are a celiac and need to take medication/hormonal therapy, which medicine were you prescribed (I am in Europe so I am hoping that even medicine is called differently, I can find something similar to it), and

2) which birth control pills do you use?

I did not expect her to find more than one and to be this concerned. Another thing to worry about... 

Hi Cycling lady, I really do not remember anymore. I was so hungry at that time that I just concentrated on it being gluten-free free, dairy and soy free but I did not think about containing oats. However, I do not think it did. I think it was just dried fruit (dates) with coco and coconut. I meant to take a photo of a wrapper but forgot. I also try to stay away from oats. I enjoy lettuce wraps as well. I usually eat them with chicken and veggies.

Hi Nvsmom, you are right about myfitnesspal. I used to use it religiously when I was healthy (at least believed I was, before my diagnosis) and exercising every day to make sure to track my food and water intake. I need to start using it again and it can also serve as my food journal. Thanks for reminding me about it.

Hi Cyclinglady,

sorry for not responding sooner. I have not been on here in a few days. Thank you for your advice about sardines. I will try to find good ones here but I am not sure about canned salmon and its quality here. Anyhow, I am back at home and I am eating well, so I am gaining weight. I just need to find out if my results will reveal any food allergies. I have been waiting for my results for so long but this doctor was the only nice one willing to carefully look through all my previous tests and order new ones. However, the hospital is extremely busy so I could not get them any sooner. I think I might get them either tomorrow or later next week. 

Soon after posting on here, I bought a granola bar that was gluten free, soy free and dairy free. The entire September I did not eat any processed food apart from this granola bar. Within an hour of eating it, I began having a sharp stomach pain on my left side (I know it is celiac related for sure) and my flat stomach (from loosing weight) looked like I was pregnant. Since then, my hands have been hurting. I just hope it gets better soon but I am still worried about the results. So, I know for sure that this granola bar probably was causing some issues in May and June when I ate it but I was eating other gluten-free processed food and did not realize it.  So, I would recommend to all newly diagnosed celiacs to stick to clean eating and see what might be causing any other symptoms. I was so happy when a local grocery store started offering more gluten free products (cookies, oats, granola bars) that I did not take into consideration cross-reactors and other intolerances. I actually knew nothing about this.

Anyhow, thanks for the advice.

Hi, I agree with cap6 about fries. Based on everything I read thus far, most frozen fries have gluten in them. Make sure to check the brand, if it has anything written on them and contact the seller. I started making my own fries, especially sweet potato ones. It takes a bit longer but it is worth it. One thing that has been difficult to deal with as a celiac is that we always have to have some food prepared/available since we cannot grab just anything to eat. So, that is good to keep in mind when our schedules are busy and having left overs is great.

Hi Ravenwoodglass,

I love meat and could eat it every day but because I read it could cause joint pain, I stopped. However, I will start eating chicken again. My symptoms this summer became worse after eating eggs,drinking coffee with milk, some soft cheese, nightshades, and gluten free products (chocolate and cookies). Maybe my symptoms were caused by nightshades and dairy but since I ate all these around the same time, I cut eggs as well until my allergy test comes back.

I need to find Thai Kitchen skinny noodles. That sounds amazing! They are so easy to make and delicious! Thank you. I love olive oil so I cook with it. I also know how to prepare amazing lentils with turmeric, onion, and olive oil.

In general, I do love food. I don't think there is anything that I actually do not like but there is not much selection when it comes to gluten-free products here. When I go home, I need to learn how to make bread. They sell small packages of nuts that are overpriced so I am looking forward to fall markets where I can buy walnuts. I found banana chips and was ecstatic but the label said that it could contain up to 20 ppm, and since I have had so many problems lately, I did not dare to even try it.

Thank you again. 

Hi Cyclinglady,

These are the main veggies and fruits that I usually eat. I eat whichever one I have in my fridge. So, my diet pretty much is made of fruits and veggies and tuna. When I am at home, I also have cooked meals such as baked chicken with cabbage, meatballs with carrots, onions and olive oil, and soups. I am a pretty good cook and enjoy it but I just don't know what is safe for me to eat right now. All of these foods I found online to be anti-inflammatory so that is why i have included them in my diet. I read that meat, especially red meat is not good for arthritis and since my body was hurting, I stopped eating it. However, I am worried that what I have been eating lately is not enough. I have never been a vegetarian and I feel like I need to eat something else. I love lentils and rice but I do not buy it unless it is labeled gluten free. I am not at home right now and I am staying abroad only for a few days so all my dishes are in storage. Therefore, everything I prepare is easy to make but the truth is that I am also afraid how my body will react to other things. My results should be available in a week (finally!) so then I will know for sure what I need to avoid. 

I literally go to the grocery store every day but I just do not know what to eat. So, that is why I turned to you guys. When I was in England, I was able to buy freshly baked bread but that is not available here. I am pretty sure I react to corn so I cannot eat some corn pasta I am able to buy here. 

Hey,

I have never thought I would be asking this question. If anything, I always had to count calories to make sure I did not eat too many. 

So, I started following AIP and it helped a bit with joint pain. However, I noticed that I lost weight. I do not want to loose any more and would like to gain. 

I eat bananas, tuna, sweet potatoes, cucumbers, broccoli, carrots, apples, pineapple, pomegranate, celery, garlic, avocado, berries, cantaloupe, spinach.

So, in a day I might eat 4-5 bananas, 2 small tuna (about 160 grams together-cans), cucumbers (2-3), carrots, apple, pomegranate, avocado, sweet potatoes. I just do not know how to raise the number of calories right now eating only veggies,fruits, and tuna. I was looking up online all different ways to eat healthy and address possible arthritis pain and some guy suggested eating veggies and quinoa but I cannot find one here that is labeled gluten-free. It seems like I have been waiting for my results forever, so I do not know what my food intolerances are yet so i completely cut all processed food and anything with soya, milk, eggs, corn, etc. This is how I ended up eating only, veggies, fruits, and tuna.

How do you make sure you get enough calories? Everything in my diet is healthy but I don't think it is enough. Thank you!

Hi,

I have never tried cod liver oil that I can remember but at some point I think I was cooking with Chia seeds, coconut oil and beef broth and I do not remember having any problems. But, it is very possible that mixing all of this is not helping you. Maybe try rotating these. One day broth and coconut oil, other cod liver oil, etc. Good luck! You will figure it out.

Hi Beth, I am sorry to hear that your are going through this. It sounds very scary. What type of blood work did they do? I really do not know what to think anymore. For how long have you been diagnosed with lupus? I used to have it in my lower back sometimes but it has not happen in some time. They did EKG yesterday and said it was ok and I refused getting an x-ray because I had one done in August and it was fine but at that time I did not have pain. I was hoping blood would show what this could be and if there was any inflammation in body. Can I please ask you what your treatment plan is  ? I hope you feel better soon! Good luck on Monday!

Thanks Bartie. Your message literally made me cry. Thank you for being positive for me. I really thought I prepared myself for anything until today. I was just concentrating on looking up anti-inflammatory foods. Dealing with different doctors in different countries, insurance, etc., took a toll on me. This doctor that I got to see today last time told me to - move to another country (meaning to leave her country since I am studying abroad), spent more time talking how i needed to have a primary care doctor so that I did not have to come to the hospital than she did trying to help me. She also said that I was not going to die that day when I was trying to tell her that I think this is related to autoimmune diseases. I was given some painkiller today and I asked the nurse if it was gluten-free and she told me that all pills are gluten free (which we know it is not true). She made me take it although she did not even check it. 

Thank you again! From your lips to God's ears.

Thank you Kareng and Cyclinglady. Also, thank you for the ideas Cyclinglady.

Sorry I was not clear. I was freaking out. I noticed there are a few amazing people on this forum who also have lupus and they are able to live their  lives. I though I was prepared even if that ends up being diagnosis. However, after reading about chest and especially heart (and being it referred to as a major complication), I saw it as a helpless case, thinking if it is heart related, not much can be done. So, that is why I asked if there is any hope.

You are also probably right about blood test. Two nurses struggled with it. The first one gave up and the second one spent some time trying to find a way to get blood. This was not a problem even when i was severely dehydrated last year when I got admitted to the hospital last year, so it was strange. 

Thanks again.

Hi,

Some of you probably have noticed my posts inquiring about different things. I am still waiting for my results for Lupus and RA but I really need advice and support.

For a week, I have unexplained horrible chest pain. Like something heavy pressing on my chest and sometimes difficult to take deep breaths. When I eat, I get pain and what it seems like a low grade fever, sometimes goose bumps, have no appetite, losing weight and hair. Even when I scratch my hair, i can get goosebumps.

Typing all of this makes me realize how bad all this sounds and freaks me out even more. Many of the symptoms fit lupus based on what I read.

Today I went to see a doctor (was not able to see the one that ran my immunology tests) and she did just basic exams, listened to my lungs, heart, and some basic blood tests. The nurse said that she was not able to get blood to flow in the vain in my left hand and it took her a long time to do it in my right arm. Looking at it now, it does not even show any blood from the needle there. On my right arm there are a few puncture wounds. This has never happened before. Doctor's conclusion regarding my blood tests - nerves and maybe a small cold. She did not even consider a possibility of being it related to autoimmune diseases since I had ANA and those other tests in February. 

Also, my periods have changed in the last two months but I don't want to go into details since this forum is for everyone. 

I said it many times before, but RIGHT NOW I AM OUT OF MY MIND. I don't want to die and I read about lupus and how it affects heart, lungs and blood vessels. Is there any hope?

Hey, I have been taking Solgar's. I recommend them because it states on the bottle that there are gluten, wheat and dairy free. I found it on Amazon for you. Check it out:

Open Original Shared Link

Thanks Colleen.

I did not even know about this. I am trying (not doing very well) to be positive but I am so scared of the unknown. So, I really appreciate having you guys on here to hear me out.