LookingforAnswers15

Fiveoaks,

it sucks being diagnosed but you will do everything you can to adopt to this lifestyle. I am sorry that you have to go through this as well but it is better that you know now. While it must be difficult to also know that your husband has diabetes, you two have each other to support and lean on. If anyone will be able to understand what you are going through, it will be him since he also has health issues that affect his daily life. As many will say, it is a lonely disease but luckily you have a lifetime partner. I have been disappointed by many people and their comments such as "so, the only things happening in your life are health problems". 

Also, it is good that you know about your lactose allergy. It will just help you heal faster knowing you need to avoid it. I am really upset with my doctors. They did not test me for any of these allergies and vitamin deficiencies, knowing that I do have celiac. At that time, although I was like you and trying to learn as much as possible in a short time, my brain did not even work well to make this connection. I continued to probably hurt myself by occasionally drinking milk and eating ice-cream.

I know it sounds awful now but it can get much better. I accepted having it and I truly do not even care what I can eat as long as it is good for my body. I used to love food but now I just eat because I have to. I only pray that I do not have other autoimmune diseases. 

Take a deep breath!!! Good luck!

Hi, I really do not have a medical advice to offer. However, since your husband cannot go to a doctor now and he does have to eat, concentrate on plain food. Since he can handle rice, just plain rice (unsalted) might help him. They usually give it to patients after surgeries, I think. Also, I might sound silly since I already told someone else to eat bananas, but I would recommend that he eats that instead of applesauce. I just remembered that even when I was sick and no one even thought of celiac (although looking back there were typical celiac symptoms), I only could handle eating bananas. I know that applesauce is sweet but at the same time I think apples are considered to be good for losing weight and can be sometimes somewhat sour, so I would avoid that. Also avoid sweets, processed food, and spices. Good luck!

Thanks Maddi.

Hey,

Earlier this month, the mri of my neck revealed enlarged lymph nodes on both sides of my neck and one lymph node in my armpit area. Previous ultrasound of neck did not show anything. I got an MRI done because I insisted to check my neck thinking it would show atlas, c1,c2 thinking any problems with those would explain my headaches.  I did not know that this is actually a different kind of an MRI so instead I got this the MRI of neck-soft tissue.The radiologist who read my MRI said that I needed to follow up with otolaryngologist, who might decide to do a biopsy.  After looking at my mri, otolaryngologist said it was nothing to worry about. He said that he saw some inflammation and chronic tonsillitis. I complained about my tongue, which seemed to be stiff and painful on my left side. There were a few smaller lymph nodes and one a bit larger on both sides but mostly on my left. He prescribed me antibiotics. After taking them for 4 days, my tounge felt normal but a day or so after I stopped taking them it got a bit stiff again. It was my understanding that enlarged lymph nodes are associated with inflammation in the body, so thinking of celiac disease, after this appointment, I was not even thinking about this much. I was drinking ginger tea to reduce inflammation. However, I came across a post (somewhere online) where a guy was having similar symptoms and some people advised him to check for Hodgkin's lymphoma. I am now really worried.

Currently, my symptoms are:

feeling tired

heaviness and uncomfortable feeling in chest, but left side of chest more painful

constant weakness in hands and painful palms, even fingers/finger tips sometimes hurt but I do not see any swelling.

cold hands and feet

it feels like I have a low grade fever sometimes

eczema on my eye lid (small and showed up also this month), had some rash on my neck (which I have had before, it comes and goes)

tongue still feeling a bit stiff

lost some weight but i have been trying to follow AIP diet. However, I am not really hungry much either.

I no longer have headaches, and previous muscle twitching has almost gone away.

I am still waiting for the results of my tests for lupus, RA, and pernicious anemia. Cyclinglady helped me figure what my blood tests are for.

Does anyone know anything about this? I am tired of playing a doctor. It is such an emotional roller coaster and I am beyond scared. I wish there was one day that I did not have to worry about health issues. Please help if you can.

Thank you.

Hi Maddi,

I am confident that you will figure it out! I really hope that you will start gaining weight soon. It may sound silly but if you like bananas, make sure to eat them daily, at least one a day. I read some article about a doctor who in the early 1920s prescribed it to some kids for stomach problems, which turned out to be most likely celiac (based on later generations having issues and being tested). Anyhow, I did not know if I should believe that but I know people with stomach issues who were very skinny but started eating bananas and gained. A month ago, I was feeling awful, could not eat so I lost a noticeable amount of weight. As soon as I could eat anything, I ate bananas and gained the weight back. Good luck!

Hi Maddi,

I had a bunch of weird neurological symptoms that made me worry about MS. I had random muscle twitches all over the body but I was freaking out especially when I felt them on my face and lip. I think I even somehow messed up one of my facial nerves ( can recover without any treatment but it can take up to 2-3 months) where I felt that the muscle underneath my eye was first twitching, followed by a very intense pain and stiffness. Looking at it, you could not notice anything but it was hurting. I had headaches and dizziness as well. I fainted once. My arms seemed so heavy to even put my hair in a pony tail. These symptoms are better now and MS has been ruled out so it has to be celiac or other AI related in my case. My memory is horrible and concentration even worse. Apart from this, I easily get anxious and constantly worry about anything family related. If my family member does not pick up the phone, I think of the worst case scenarios. While I always cared and worried about my family,I never used to freak out just because someone could not answer the phone at that exact moment. Hopefully, it will get better. I hope all your issues resolve. You found this forum on time and getting educated. I wish I did ...maybe I would have been much better by now. I strictly followed the gluten-free diet and paid attention to cross contamination but I did not know how dairy and other allergies could have also slowed down my recovery Good luck! 

Thanks LauraTX. I decided not to go but just pay attention to it.  These days, I take photos of everything that is questionable for me in case something similar shows up  but also so I can show it to doctors if they do not believe me. I read that was helpful somewhere on this forum.

I blame myself for not paying a closer attention to my body before so I am really trying to listen to my body now.  I considered myself healthy prior to 2011 (when I noticed more persistent stomach problems) since I always exercised regularly (ran, used elliptical, spinning classes, lift weights, name it) and ate what I thought it was healthy (was advertised as such ). So, I never paid too much attention to my stomach. I wish I knew something...anything about autoimmune diseases years ago. I used to feel bloated after eating so I thought it was just because I ate a lot or had irregular eating habits due to my job. Looking back especially at that year of my life, I feel like I do not remember much about my life then at all, which was not that long ago.I thought it was because I had a stressful and hectic job but now I realize this could have all been also connected with Celiac.

So, I hope that my fellow Celiacs do not mind me asking questions.

Thank you.

Hi MommaBear,

sorry that you are feeling this way. I really do not know nearly as much as some people on here and I am sure that they will give you a great advice. Inability to loose weight, vitamin D deficiency, feeling tired could be connected with thyroid. If I am not mistaken people with Hashimoto may feel this way. Look it up and see if your symptoms match and get tested. As I said, some incredible people on here will be able to help you better since they truly know more than some doctors.

Hope you feel better soon. 

Hi,

unfortunately, I have to keep asking you questions. I hope you do not mind.

A few minutes ago, I accidentally touched the back of my t-shirt and I felt something underneath it. I looked at it and it looked like a bigger pimple on my back. I have never had acne or any rashes on my back before so I am not sure if it is possibly a bug bite or a sebaceous cyst, which I had no idea what it was but popped up in my search so I looked it up and it looks very similar. The bump does not hurt or itch, it is just raised. it was at hard at first but more I touched it and cleaned it with some alcohol, it seemed to have almost deflated and it is no longer sticking out as much. Nothing came out of it. 

Do I need to go see a dermatologist for this? Could it be an ant, mosquito, or spider bite? Considering that I have had various random symptoms lately, any new symptoms makes me wonder if it is celiac related or some other AI.

I only have occasionally some small, itchy rash on my neck but it does not look anything like this. Has anyone had any similar experience?

I truly hope I am not bothering you with my questions. 

Thanks Christina!

The ultrasound originally did not show anything. I wanted to do an MRI of my neck, thinking it would show atlas, c1,c2 to see if that was causing my headaches. Did not know and the doctor did not tell me that is completely a different MRI. The MRI I had showed these lymph nodes and I was told by the doctor who looked at my MRI to go to otolaryngologist who might choose to take samples. However, when I went to otolaryngologist, he said it was not a big deal and gave me some antibiotics.  

Hi Cyclinglady,

I have been tested for thyroid but someone suggested making sure that I also have FT3 and FT4 (I think) tested to make it more accurate. So, I am planning on getting it done.  My eye pain is just like you described it, with the muscles around it hurting.

Would an MRI of my neck show my thyroid and whether it is ok? I hope this is not a stupid question but since the MRI revealed swollen lymph nodes, I wonder if it can catch anything with thyroid.

Thank you for your suggestion and clarifying what those test were for.

Hi Raven, 

yes, I have done it a couple of times. I think it is called a tear test or something like that because they use tear test strips to see how many tears you produce and I was producing plenty. I honestly saw 2 doctors at one hospital. They gave me some  corticosteroids eye drops telling me that if they worked I would know it is related to the autoimmune disease. After a few days I stopped using them because my eye felt stiff (a weird way to describe an eye) but almost as if the eye drops were numbing the eye but not taking pain away. Soon after, although slowly the eye begin improving so I was assuming that it was not  getting better from those eyedrops. When these doctors said there was nothing they could do after that (they did do that tear test), I went to a private doctor who said it could be related with autoimmune system but could not tell me anything else. The last doctor checked the eye pressure and did all other exams that he had equipment for. He really took his time with me but said he really was confused why this was happening when I also did well on the eye exam. 

I do not think that I have seen those. I just noticed that my vision was worse at night especially with all those bright lights (Street lamps, store signs,etc).

Do you know what some of those tests (ANA, rheumatology factor, anti-CCP, anti-TTG, C3,C4,CIC, ACA, B2-glycoprotein, Anti-gastric parietal, ENA-6) are meant to reveal?

Thank you!!

Yes, I have been to three ophthalmologists. The last appointment was in August, at that time my left eye was not tearing or hurting, but he said that he can see chronic inflammation and he kept saying how weird all this seemed to him. The only reason why i went to see him then is because I mentioned to the neurologist that i sometimes have this eye pain so he sent me there. The ophthalmologist also said that he did not think it was Sjorgen's but he was the one who thought it could be MS. That was another reason why I did an MRI.

I would be happy if it was an allergy but I had these problems on and off. Sure enough it is September again, when originally it all began last year, but I really don't know.

Thank you Kareng! 

Hi all,

once again I need some help. Since September/October of last year, I have had (on and off), what appeared to be an eye infection in my left eye. It was constantly tearing and at some point it would start hurting. I went to see different doctors multiple times, just kept giving me eye drops and saying that it makes no sense and it is possibly connected with something else in my body. I asked my gastro doctor and she said i was tested for Sjorgens (no idea which test that was) and that I did not have it. When I was diagnosed with celiac, in the hospital they said they tested me for lupus and i did not have it. However, i wonder if anything has changed. I still have another 3 weeks to wait for the results of my recent tests:

ANA, rheumatology factor, anti-CCP, anti-TTG, C3,C4,CIC, ACA, B2-glycoprotein, Anti-gastric parietal, ENA-6. I started googling those ones, but I am not completely sure what they would be able to tell a doctor. Do you know what they are supposed reveal? 

My eye is tearing and it hurts again. So, I worry again about having other AIs. If it is Sjorgen's, I read that people with Sjorgen's usually have Rheumatoid arthritis or lupus....exactly what I have been scared of.

It seems like I keep questioning whether or not I have one or another AI. I was worried about MS (because of random twitches, weakness, pain), but luckily my MRI was ok. Every time I am hopeful, some symptoms appear or reappear and scare me. 

Do you have any advice regarding my eye and what these tests are for?

THANK YOU!

Thanks Bartie and Raven!

I looked up my B12 again and it said:

B12-Cobalamin: 347 (normal range being 211-911). I was tested on August 3rd.

My other test from April 2015:

B12.S.P.-195 (normal range 141-489).

I really do not get why the doctor that diagnosed me would not tell me to take any supplements. I should have immediately started taking them regularly but since they said no reasons to worry I just occasionally took B12. 

I will start regularly taking B12 asap. Thank you!

 Awesome news and thank you for sharing the recipe with us (plus clarifying gluten-free brands for me). 

Hi Bartfull,

I will. Thanks! I just need to find gluten-free raisins first =). Since I have been diagnosed, I only occasionally drink wine. This may sound as a very dumb question but is there a particular brand of gin to look for or they are all gluten-free?

Hi,

nvsmom- I agree with you! It is easier for doctors to assume that we are just unhappy than to actually look at us. When you tell them that you have no reason to be unhappy (yeah, I have this disease but I accepted it and don't even think about all the food that I cannot eat). Not once have I cheated since I have been diagnosed.Then their answer is: well, stress still happens and we feel pain that is not there.

weluvgators - Thank you! B12was in normal range but on the lower end. Unfortunately, I did not have a primary doctor until recently and the one I got, unfortunately, does not seem to know much about celiac at all. She was not even considering other autoimmune diseases when i was telling her my symptoms. I am looking for a rheumatologist right now but I will wait to see one until I get my results back. I wonder,  would any type of arthritis somehow show on dexa scan? It was taken of my abdomen and legs if i remember correctly. It was ok but I am wondering about my hands.  I need X-ray of my hands so i will try to get that done.

Thank you again for your support.

Hi all,

First of all, Celiacandme and Nvsmom, I am sorry for not responding sooner.

Celiacandme: it has been awhile since you posted and I actually wrote you a long message and instead of posting it immediately, I got distracted and wanted to look up something and instead accidentally closed the window. I was so mad at myself. Since then I have dealt with some doctors and I have not been posting. Thanks for your advice. I stopped eating dairy at first but added it later. It has been 3 weeks since I stopped it again. I think I will of to the rheumathologist but I am waiting to get some of these other tests including rheumatology factor. I am an emotional eater so when I was feeling pretty down and not feeling well (around May-June), I indulged in gluten free cookies and other gluten-free snacks, which looking back, might have added to inflammation in my body.

Thanks nvsmom! I really appreciate it. When I am worried about something, I sometimes shutdown. I have been playing a doctor for some time now and I am physically and mentally exhausted. I am yet to meet a doctor who understands that these neurological and physical issues are either from celiac or other autoimmune disease. My family probably thinks I am exaggerating because these doctors are saying that I am just stressed and unhappy. I am sure they would be unhappy if they felt like I do and those who are supposed to help you brush it off as if I am just making it up. So, I just stopped talking about all of this to some family members. Maybe it is easier for them to convince themselves that it is all in my head than to think of all these scary symptoms and I cannot blame them for that. I do know that they care about me so I have to try to understand their side as well. We all deal with fears in different ways. I am trying to drink different types of tea, I stopped eating anything that could possibly be causing this (eggs,dairy,potatoes,sugar,coffee,gluten free products, soya,etc). It is easier to say what I am eating (chicken breast with olive oil baked with carrots, cabbage, onion, or cauliflower), fruits such as (pineapple, apples, bananas, cantaloupe, berries). These are all supposed to have anti-inflammatory effect.

Unfortunately, I had to take antibiotics last week. I went to see an otorhinolaryngologist and he said I had to take them because he saw some inflammation in my throat. After asking at the pharmacy if there were gluten free, they said they were, but I know now they were not. I got some small rush (maybe eczema) on my right eyelid and I had to use bathroom more. 

I just feel defeated so that is why I shut down. I know that people here understand what I am going through and I really appreciate that but writing about my problems just made me further think about them. I still spend time reading online but instead of looking up symptoms, I focus on finding anti-inflammatory diet. Thank you all for being there. I can see how much support some of you offer to all of us and I feel bad that I don't do the same as much but I still feel that I am not knowledgeable enough to offer advice. I hope that once I "calm down" my body and figure out what is happening, that I will be able to pay it forward better. In the meantime, I hope that at least my questions, things that I have noticed and your advice help others in figuring out their issues. Thank you again!

I am not sure what this new doctor will say and where she might refer me to but it is good to know to ask. Thank you Raven!

Hi Bartfull,

My only hope is this imunnology doctor that I will get to see next week who is in a different hospital. I had to get a new insurance to see the previous doctor who seemed to be quick to tell me to take antidepressants instead of running some expensive tests they were able to do (such as an MRI but I insisted on getting them). I think this was also because the doctor was not as knowledgeable as he should be about celiac. However, they were not able to do vitamin D, immunology tests, food allergies, etc. Of course, when you are getting the insurance they promise everything and then you realize that tests you really need they do not have. I really do not need to go and pay for someone to tell me there is nothing wrong with me without running any tests. So, I began searching for other doctors.

I am glad to hear that you have a great doctor. They are truly hard to find. How long do you have to wait for the results? I really did not know how they tested for lupus. I wonder if they only tested my kidneys since they were the reason why I was admitted to the hospital in the first place. So, apart from lungs and kidney, what are the other organs that they test?  I did the ultrasound of lungs and abdomen recently and they said it was ok but again, not sure if that is enough to show something. Thank you for telling me this. 

I might need to do that sed. rate as well then. Once again, did not know about that either. 

Question: would dexa test tell me anything about arthritis? It is done on legs and abdomen to check for osteoporosis I think but not sure if it also can tell something about arthritis.

Thank you for trying to ease my mind. I really do not know what to think anymore. It is stressful! Playing a doctor is not a fun thing to do (although I am sure that the neurologist who showed no interest in me labelled me a hypochondriac because I was asking questions) but there is no other option when you see that you cannot trust some doctors. After three years of going to the hospitals and complaining about stomach problems, which doctors claimed to be nothing, I needed to get so sick and dehydrated for them to look carefully at me. At that time, I had never heard of celiac. I read somewhere on this forum about a guy who became a doctor after his problems with celiac. I think that so many of you easily know so much more than some of these doctors. I even knew more than that neurologist and I do not know as half as much as some people on here.

Thanks again for all your suggestions Bartfull. I hope both of us get the best results we can.

Great news!!! Eloise you can do it! Prayers will continue coming your way.

Hi Bartull, 

thanks for responding. I am really not sure. When I was admitted to the hospital last year (they diagnosed me with celiac then), they said they tested me for lupus and it came back negative. However, I am not sure if something has changed since then. They told me my thyroid was ok but I really do not know which tests they ran.

Sometimes, I have some rash on my neck,not much but tiny red dots that itch. I think they mostly show up when I eat gluten free snacks (So I stopped eating them). I do not think it is psoriasis from the photos I saw quickly after I read your post.

RA also looks terrifying. Apart from experiencing pain, photos of hand deformities online look horrific. Three years ago, I would have never imagined I would be dealing with any these issues now. Every time when I think, ok, maybe it is getting better, something else comes up. At this point, I am just praying for the lesser of 2, 3 or 4 evils. 

Good luck Bartfull! I really hope that you figure it out soon and find something to help with the symptoms. Will he run all these tests for you? 

Hi,

Hope someone can help me. I have spent this whole August trying to find doctors and get them to do tests. I truly don't understand why some of them even decide to become doctors when helping patients is not even their priority. However, they are great at charging you for nothing.

I was sent to a neurologist who is obviously not knowledgeable about celiac because he said that not much is known about celiac and it does not cause neurological symptoms. After charging me for 2 visits,  he said it was psychosomatic and just wanted to give me antidepressants. I told him I was worried about MS and other autoimmune diseases but he was not concerned about anything. I convinced him to send me to do an MRI, which came back with no signs of MS, thanks God. But the issue of horrible migraines that can last for days was unresolved as well as the fact that the left side of my neck hurts while my tongue on that side feels stiff as well. So after he just wanted to send me home,I asked him to what about my neck and headache. In the end, once again, I had to convince him to let me do an MRI. The MRI of neck revealed a few swollen lymph nodes on both sides of my neck but more on the left. Based on their size, he said it should not be dangerous but the fact that they are there is not good either and means that something is causing this inflammation. I can't feel any bumps when I am touching my neck and the original ultrasound did not show anything. Wants me to go to an otolaryngologist, which I still have to find.

However, starting in May, my right hand ring finger showed some involuntary movements, then in June, my left hand index finger looked deformed. I was taking photos and using that finger, so I assumed it was tired from taking too many photos. It seemed like it was broken and joints did not fit in their places properly. After some time, it seemed ok again. During the last few days, I have noticed loud popping noise in all my joints and my hands seem fragile and hurt. My pinky fingers seem to lean towards the outside, if that make sense. Like my hand is stretching. Left hand pinky leaning towards the left side and right pinky toward the right. Even just looking at my hands, especially the right one, you can see how pinky is separated/sticking from my other fingers. It is so weird and scary at the same time.  

Also, sometimes when I eat  (not sure it has anything to do with what but for example yesterday, I ate broccoli and pineapple) and as I was eating I was getting goose bump or sensation like a mild electric current running through my body. Like a low grade fever or as if my body was fighting against what I was eating.I also sometimes have muscle twitches all over my body. They do not hurt.

So, I consulted Symptom checker WebMd and they came up with some such as:

-Rheumatoid arthritis

-Carpal tunnel syndrome

- peripheral neuropathy

- Hypocalcemia

Does anyone have any experience with this?

I was looking up online some photos of RA and it looks similar but I can't be sure. These last few symptoms came up so fast. So, I began immediately eating anti-inflammatory food (broccoli, pineapple, drinking ginger, taking vitamin D, turmeric). I have lost appetite, lost weight, keep losing hair, and wake up throughout the night. Since I had a lot of problems with stomach last couple of weeks with diarrhea (sorry for tmi), which I usually do not have, I was just eating meat and bananas because that was all I could handle eating.  

However, I have noticed a lot of people on here talk about peripheral neuropathy and I really do not know if this could be it. I don't know much about the other two.

I am assuming that my gluten antibodies are still over 100 (they were 110 in June). When I was diagnosed last year they were 220. Not sure if this is affecting everything. I am super careful about not eating gluten so it can't be cc.

If there is anything that you know that can help me figure out what is going on with me, please let me know. I am worried sick and although I try to hide it from my family, they notice that something is bothering me so they worry too. 

Sorry for writing this long post but I really need advice.

Thank you!

Dear Eloise,

as always, prayers are sent your way for you and all your family. You have been so brave, strong, supportive of others, and positive so please keep on fighting. I truly hope and pray that you will be posting on here soon. You touched the hearts of many. These days, kids and even some adults do not realize how good they have it and do not know how to appreciate things. You appreciate and see beauty in everything. Keep on fighting!