anxiety, celiac, problems, doctors, i'm lost

[Jm34]

Hi there everyone!

Since i'm new here i write the story of my celiac diagnose and not diagnose and my recent problems maybe someone can help me out a little or give me a warm thought, since i'm being on the downside once again...

(In advance sorry if my English isn't the best..., or it's a long story)

My problems started when i went to the university of information technology (around the age 19) here in Europe, Hungary, it gave me lot's of stress but i was doing actually pretty good comparing it to how i was living my life. Basically i was on my PC for the whole night every day and skipped or not skipped classes in the daytime, then sleeping after i did the classes which i couldn't skip... Then after 3 years, we had a 1 week free time, so i went home to my family then on the free week one teacher required us to go into the class on monday. I took the train and went to my apartment and drank some Sweppes (orange flavour) but it was ruined because it was probably sitting in my apartment room for like 2 weeks or so... I just drank some and run to the class. So i was attending this class in the first rows of the room, there were around 30 people at the class listening to the doc. Someone from the backs hit my head with a spring of a pen, like 10 minutes little later i started to feel that my saliva is pumping and pumping and all i wanted to do was to spit it out, but i couldn't just do that in front of the people in the room so i kept swalloving it. It turned into this weird thing that i kept counting the seconds and gulping and it just didn't want to go away, my saliva was just kept producing. When the class ended i was feeling really weird and stressful but i needed to take the 2nd part of the class soon after. So i took some fresh air drink some water and went in, but it was the same thing, i kept counting (watching my watch), count and gulp my saliva... Then after the 2nd part of the class ended i was very stressed and freaked out almost, so the first thing i did was to call my parents than i'm feeling sick, very sick.

Somehow i got home with the train and my parents took me home with our car and i was laying on my bead but i was still freaked out because of what happened so i kept spitting my saliva and it still kept producing. So at late night my parents took me to the "doctor on duty" if thats the right words to call it. There were no other doctors around at the time, the doctor told me to do nothing, and check my doctor on the next day. So i went to the internist my mother knows well, and he immediately sent me to a gastroenterologist that theres maybe something in my esophagus. Immediately we took the train went to the gastroenterologist (because there aren't any near me). The gastroenterologist did an endoscopy on me with a biopsy then they took some serum tests on me, then i needed to wait 4 weeks until the tests arrive. The endoscopy diagnosed some kind of redishness in my stomach and near the duodenal. The doctor prescribed me a PPI (Controloc ~ INN-pantoprazole) that i may have a reflux. So i took the pills (at this point i didn't have my saliva problems from before, that went away in 1 day), but even tho i was eating the PPI pills my throat was this very dry feeling with some burn and pain... So after 4 weeks the serum tests arrived and it stated that my "anti-transglutaminase IGA" were positive. The gastroenterologist told me that there is a high chance that i'm a celiac, so i must do a gluten free diet and a nutritionist came and told me what i can eat and what i mustn't.

So i was eating the PPI pills and going gluten free, i started to feel better, BUT and there is a big BUT after 2-3 months i started to feel really bad like i had this huge "shortness of breath" and i was kept burping and feeling like i'm drowning. So i keept going to the gastroenterologist who told me there must be a problem in my diet, so he checked my serum lvls after the 3 months and it was all negative. Then he told me i sould see a "nervous and psychiatrist" so i did that, the doctor told me that i don't have any problems like that, i should go back to my gastroenterologist...

So when i went back to the gastroenterologist and he told me that he can't help me my mother was kept crying that please help so he ordered me a contrast X-ray examination. So they made me drink some kind of special liquid and then they were X-raying my stomach about reflux, it took a half day to do. Then the results were negative for reflux. Then the gastroenterologist told me i must have chron, and prescribed me "stalofalk - mesalazine", without anymore tests or anything. I never had a diarherra, none at all only constipation, undigested things in my stool and lots of mucus. The pills were so big that i couldn't even eat them. Then i went back the doctor, my mother told him that shouldn't i be tested before prescribing pills for chron? Then the doctor shouted at us and said i need to take an "intestinal mirroring". I went to my internist and asked him about this "stalofalk" pills and what does it do, or what should i do... or can i split them apart or.... Then my internist told me i shouldn't take these pills because if i don't have a chron yet, the pills would make me develop it. My mother was so scared hearing it and i couldn't  really take the pills so i decided to stop my cuuring with this gastroenterologist. So i was going to my internist and he tried to prescribe me another pill for an enteritis without any real test but according to the results i had from the gastroenterology. So i took and felt so bad that the doctor told me to stop them, then he told me i should be checked for celiac by serum tests to see whats up with that. So he did a test on me 4 weeks later the results were negative, then he told me to eat gluten again. So i was eating gluten and i didn't feel anything worse than before, i was already having this anxiety which didn't really went away.

At this point i tell you that even tho i'm an adult man, i'm very small and i'm very weak, i never really developed any muscles or weight. In my childhood my pediatrician always sent me to serum tests that she thinks  that i'm anemic but the tests were always negative. I realised that every time they take my blood for these serum tests 4-5 test tube, i always felt really really week like almost fainting on the spot... And in my younger years at the elementary school and later at the highschool i was so tired all day long that i was yawning all day long no matter what did i do or what time of the day it was. And every time i was yawning because of tiredness i always had huge amounts of tears coming out from my eyes.

So i was eating gluten and feelins anxiety and generally bad, my father were helping me to take a shower, or he was sleeping with me, and he was bringing me to the university classes... After 2 months the internist told me to do another serum test for celiac, it turned out to be negative again. Then he told me i don't have a celiac disease the gastroenterologist was bad and i must take antidepressants. I was so scared from those pills and i'm still scared by them even today, i didn't take them and just went on with my life. After some time i grew more and more stronger mentally, coping with this really bad anxiety but i was scared from a lots of things, and i had lots of very bad thoughts because of it. The doctors told me that i'm a little weak piece of sh*t that i don't wanna finish the university and i don't wanna work and live i just want to steal my parents money and so on so on... that i must take huge amounts of antidepressants and ... It felt really bad hearing all that, i was crying in the inside, and after the days and the months slowly passed my mother started to actually believe it that i'm just a faggot and i don't want to finish the university and i'm just acting. So it really generated a generally bad family feeling at home. So my father were taking me to the university classes, i had lots of panic attacks at the classes and even more at the exams. At  some point i was so down that i went to a psychiatrist again and he prescribed me "frontin ~ alprazolam", i took these for a year, but they didn't help while the psychiatrist told me to raise and raise and raise and raise the pills more and more and more until i feel good. After a year i told stop it, it doesn't help and in a half year by reducing the doseage i slowly dropped it... Meanwhile the years i have developed this weird sympthom that some of my urine doesn't completely come out of my urethra, i was checked by  5 different urologists and they all told that i have no problems. After 4 more years i passed the "final exam" of the university with the "best possible grade of 5"...

My mother kept telling me afterwards that i will feel better that the university stress is now stopped, sadly it wasn't the case.  So i was at home living with my parents and i don't work just stay at home and live day by day. After 1.5years after i finished the university, i started to develope this very bad feeling in my stomach and a big constipation, it hurted so badly that i the time is here and i'm going to die. So i took antispasmodic pills on my own suggested by my mother so i can live through this 2 months until i can see the internist (because he was away). So the internist has arrived back i went to him he sent me to a big serum test. After the results came my celiac tests were positive again: "anti-transglutaminase IGG", "anti-transglutaminase IGA", "anti-gliadin IGA", "anti-gliading IGG" the tests doesn't say any values just positive. So my internist told me something like "ohh so it seems like you are really a celiac then?!" i was like ... ... ... So i immediately started the celiac diet again. So slowly but surely i was feeling better my stomach pain went away slowly, then i started to have this huge "shortness of breath" like 5-6 years ago when i first did the diet. So i was looking for allergens and i found out that there is a thing called "lupin" "lupine" inside "schär" flours that i was baking with. I tried to eat a biscuit with a "may contain traces of lupin" sign and i still fellt the "shortness of breath" just like 5-6 years ago the same thing. So from that point i eliminated "lupin" from my diet, i started to feel better and better and my constipation went away but at some point, i started to eat like crazy, later i started to develop this huge sweating after eating. I was joking around i could eat a ******** amount from this tasty food, I ate 2 times more than my father. I started to gain weight and my constipation turned into a thing that i was sitting on the toilet for 5 times a day producing huge amounts of stool (s$#&), which is to this day still contains a huge amount of mucus. Every doctor before told me that i shouldn't care with mucus in my stool.

After 6 months has been passed i went on a gliadin serum test again and all 4 values has become negative once again.

I went on and paid for a celiac gene test too even tho the internist didn't say i should do it, which turned out to be that: i have a medium chance of having the celiac disease. The test result paper states me a range of brackets [1-6]: 1) Almost no chance: code 0; 2) Minimal chance: code 4, 5; 3) Small chance: code 6; 4) Medium chance: code 2, 3, 9, 10, 12, 13; 5) Medium/high chance: code 1, 7; 6) High chance: code 8, 11, 14. My result is a code 9 so i'm in the 4th bracket which is the "Medium chance bracket". It was a HLA-DQ2 and DQ8 haplotype test with PCR hybridization...

After some time i ate some "tuna in olive oil" and some "gluten free potatoe chips" and started to feel very bad again. Like if somebody is spinning a knife in your stomach. Then after a half year passed by i started to develop headaches that just didn't really wanna go away. And i started to really sweat, like from my forehead and my popliteal huge amounts after eating. The internist told me to eat less and do some physical work. So i did that and it fellt better but then again i wasn't realising it i ate the same "rio-mare tuna in olive oil" and the same "gluten free potatoe chips" and "gluten free raw dates bars" i started to develop this huge nausea and bloating. So i went again to my internist and he told me that i should take this pill called "dicetel ~ pinaverium bromide" it hurted my stomach so badly that i was crying for 5 days taking the pill then i stopped it.

I was eating only lactose free dairy products by this time because it happened to me 3 times before in the same year that my mother made "vegetable cream soup concentrated (scrambled ~ idk the right words for it) with milk" and after i ate the soup while i was eating the main dish i was s$#&ting in my pants like watery stool came out. So i realised yes i'm a lactose intolerant now, i asked my internist about it he said if it's like this i don't need to be tested for it, i should avoid lactose.

So i'm here again i just started to feel a little better i wanted to eat something sweet so i ate some "ricola hard candies" and some "verbona hardcandies" which the pharmacist say are gluten free and some "gluten free potatoe chips" and some "gluten free raw dates bars" the things started to happen: I started to feel a headache for 2 days, after 2 days i still have the headache but i started to feel anxiety again, after the next 2 days with anxiety i started to feel a little better but the anxiety was changed to a huge throat pain, like a thore throat or a dry throat or a burning throat a mix of these 3 i can't really describe i still hurst at the moment i'm wrtiting this. Then shortness of breath came around the 4rth day, and it went away gladly around the 5th day but my thore throat is really bad at around 16:30 every day and my headache is still here. It's like my eyes want to come out of their place, and it's worse if i sit down or stand up. It's like i'm fainting cause of bad blood pressure but my blood pressure is good since i can test it at home.

I never fellt this from of anxiety (or idk what this actually is) before... So i went to my internist again and he told me that i must eat antidepressants... So i'm here again that i don't want to take those pills and i'm writing this story to you. I have a huge vitamin D deficiency and some potassium deficiency that my internist knows about and i eat vitamin D orally "1000 NE kolekalciferol" twice every day. I eat lots of bananas and pomelos for the potassium since i can't really take these huge potassium pills atm and  i'm going for another potassium serum test tomorrow. I really don't wanna take these antidepressant pills i may just lie to the doc cause i told him i wont take them but he still perscribed them. If anyone actually ready this wall of text and may give me some tips or anything to help me cure myself i would reall appreciate it. Maybe i just glutened myself somehow?! I really don't know since i think i'm eating gluten free.   Please i must have someone or some thoughts on my side.

Thanks in advance: James

[ravenwoodglass]

Welcome to the board James. You have been through a lot. ((((((((((((((((((((((hugs)))))))))))))))))))))))))))))).

Does the rest of your family still eat gluten foods? If they do you may be getting some cross contamination (CC). CC happens when tiny amounts of gluten get into someones system by doing things like sharing things like butter, nut butters, jellies, mayo etc. Someone dips their knife, speads and then dips again getting minute amouts of gluten in the item they are dipping in.  Celiacs need to be very careful of CC. Even going so far as having our partners who eat gluten brushing their teeth before we kiss.

You should read the Newbie thread at the top of the Coping section as there is a lot we have to do to keep us safe. It might help if you can have your parents read it too, or translate it for them if they don't read English.

Anxiety is awful. I also suffer from it. I actually take the alprazolam for it but have also learned ways to cope so I don't need it very often.  Excersise helps some people, others feel better listening to music they find relaxing, yoga, cuddling with our cat or dog,  everyone is different.  I can get obsessive thought patterns that are not pleasent and found seeing a psychologist to be helpful in finding ways to end that pattern. Don't know if you might find one helpful or not.

One last thing. Try to eat as clean as you can. Meaning try to limit stuff like processed gluten free foods. I also don't tolerate lupine flour. In addition I don't tolerate soy protein or flour. It gives me stomach pain and constipation. I know soy protein and flour are in a lot of gluten free foods. You may want to eliminate it for a couple weeks and see if that helps. Can't say for sure it will but worth a try since you are still having issues even though your antibody levels are down.

I hope you are feeling much better soon.

[cristiana]

Welcome James. Like ravenwoodglass I have had anxiety too and reading this forum have concluded it is a celiac thing for some.

On the whole is better but for me it tends to come back when I am stressed about something like a project deadline and I think that gluten sneaking in may well have a part to play too.

Forgive me as I may have missed something in your post but when you say you aren't anemic are they testing for ferritin or B12? Iif you haven't had your B12 or blood iron checked (ferritin) it might be worth it. This affects me hugely if my levels are down.  Sublingual B12 is very effective as a supplement.

Also, as you might see in previous posts on anxiety, I have found a lot of help on the following website.  If you think it might help there is a book, too.

Open Original Shared Link

 

[GFinDC]

Hi James,

You are the best person to figure out what foods you need to avoid.  You had positive blood tests for celiac disease, and that doesn't happen for no reason.  The antibodies are supposed to decline after you go gluten-free, so it's not a surprise you didn't test positive for celiac at those times.

It is possible to have a problem with the sugar in cow dairy (lactose) or the protein in cow dairy (casein).  If you have a problem with the sugar (lactose) sometimes people get over that issue and can start eating dairy again after 6 months or so.  If you have a problem with the dairy protein (casein) you will probably not get over that, and not ever be able to eat dairy without symptoms.

I suggest you try eating really simple foods only.  Stick to meats, vegetables, nuts, eggs, and fruits.  Avoid all processed foods for 6 months and see how you do.  If you feel better, try adding one new food every 3 days or so and see how your symptoms behave before adding another new food.

If your symptoms are related to foods you eat, then you are the best detective to figure that out.  And the best person to control what you eat.

It is not impossible for medicines to have gluten in them.  In the USA that is rare, but I don't know about in Hungary.  Most medicines are mixed with a starch to form the pill.  In the USA that is usually corn starch, but it might be something else in your country.

I think your doctors really suck!

And welcome to the forum!

[Jm34]

Thank you for your answers so far!

I'm waiting for the results of this new serum tests, after they took my blood sample, around 3 or 4 test tubes (idk exactly because i don't like watching the blood, since i was a little child...), my father drove me home and i ate some meat (homemade traditional sausage) and a banana and drank a lot of water. After about 1 hours i felt like straight crap, it was like i have to lay down 'cause i feel absolutely powerless. So i laid down and slept for about 2 hours then i got up, walked around some and still fellt powerless so i laid down again but then i got up with a nightmare that i'm going to faint 'cause i felt so powerless after i got up, my mother told me to eat some chocolate, then i ate my lunch so it become a little bit better for now. I still feel very tired and weak, maybe it's because my potassium lvls but i will see it in the test... (sadly these potassium pills are so huge and they are all retard so i can't split them or do anything to make them smaller, but since this all started 6-7 years ago i can't really take any bigger pills, i'm just struggling with them i chew my food so much... ...)

Anyways, I am going to read the "Newbie thread at the top of the Coping section" but as far as i know my family understands what to do around me, we changed almost everything in the kitchen but the stainless steel cookware. I have my own plates and my own glasses, my own knives, own forks, own spoons, BUT i can't seem to get "gluten free" or "certified gluten free" spices around here. I can get this special rock salt and, people here says a celiac can eat one brand of spices but i really don't know if i can get cross contaminated food or not. I also don't know if these vegetable oils or margarine can get cross contaminated or not by the making process, in my country they don't tag anything for being a celiac friendly or not. My mother keeps telling me i shouldn't be worried about these stuff but i don't know if i can be a 100% sure that i'm not eating any gluten at all.

I will bookmark this Open Original Shared Link site and read it later, but just thinking about that i may have anxiety gives me a huge depression.

I'm not eating any form of cow dairy (lactose) or the protein in cow dairy (casein), atm and i was on an elimination diet from yeast, peas and corn. This way my candida IGG levels dropped down after a 6 months of doing this diet (my internist told me that these candida IGG lvls will never drop in the rest of my life but they actually dropped).

I'm eating these vitamin D pills that the internist gave me after i bought a vitamin D serum test at the laboratory, since in my country it's a paid test and doctors won't prescribe it. My vitamin D levels were really low: "37.8 nmol/L" the result paper states that below 50 is complete deficiency, 50-75 is inadequate and over 75 is right value. However since i'm eating these vitamin D pills "1000 NE 1000 NE kolekalciferol" i've felt some headaches or this weird feeling, but i had these feeling from before but it's worse atm (i'm having these from the point when this whole problem started). I never felt like this, so weak for days after a serum test before until this point, but now it sometimes takes me 2 weeks to feel stronger again... It's like i have a bad blood pressure it causes me a headache but it's worse if i sit down or stand up, like if i crouch and then i stand up i almost faint. It feels like my eyes are coming out and my forehead really hurts. If i just push my nape my i immediately feel my head or the blood flowing in my head and giving me this strange feeling of a headache i'm having for almost more then a week now. It was there for the past years but it wasn't been this bad only once when i were taking some kind of medication before. It was like 6 years ago after i left the gastroenterologist.

My b-12 and iron levels are used to be good, my iron is sometimes lower but i always managed to fix it easily, if it were a tiny bit lower. Maybe it's the sugar thats 'causing me these hadaches and fainting issues all over the place but i have no clue, these "vitamin D pills" also have "saccharose" which seems to worsen my headaches and this standing up from a crouch almost fainting feeling but no doctors seems to care...

When my newest serum tests will arrive i will have to go back to my internist and he will harass me about the antidepressant pills i wasn't taking maybe i will just lie to him, it happened to me in a long time yesterday that since i'm trying to live completely gluten free for a 3/4 year now, i could go out to the start of our street alone without any kind of symptoms of anxiety.

If anyone can still give me some tips or some help on what should i do or get tested i would really appreciate it because for example: nobody helped me to find out that i don't tolerate "lupin flour", it took me 6-7 years... and nobody helped me to get tested for vitamin D deficiency... my internist still says that vitamin D is low for everyone i shouldn't care. He still says that i have an "Irritable Bowel Syndrome" instead of a "celiac disease"... I wish life was a little easier for me and my family.

 

I kindly thank you for all of your replies: James

[Ennis-TX]

I would say go with what GFinDC suggested and go on a whole food only diet, nothing processed for a while, A food elimination diet might also help, you might have developed a intolerance to some other foods so try removing certain foods completely from your diet for a week then reintroducing them to see if feel different. I have heard of others developing issues to entire families of foods like nightshades, pitted fruits, or even stuff in them like fructose intolerance.

 As to the stress and anxiety I have found supplement blends of B vitamins and Magnesium really took the edge off for me. Might see about having levels checked.

And as someone else mentioned you could be getting a cross contamination in your house if not everyone in your house is gluten-free. I had issues like that living with my parents years ago. I would get my stuff contaminated touching fridge handles, knobs, etc. Even the counter top before I started fixing my meals on top of butcher/freezer paper. Wish you luck in finding out what is causing your issues.

[cristiana]

Hi James again.

One other thought - I've just posted a similar reply on another thread.

Are you eating oats? Even though the pure, uncontaminated by gluten variety are well tolerated by most celiacs a few of us (and I am one) cannot eat them and feel like I have had some gluten if I do.  If you are eating them it might be one foodstuff you might want to have a break from for a while to see if it helps at all. In the UK I think they tell us to give it six months to a year after diagnosis before re- introducing pure oats into the diet to see how one reacts.

I also agree with what Ennis says about Magnesium.  Very helpful and calming if you put a good handful of crystals - we call them Epsom Salts here in the UK - into a warm bath and stay there for about 20 minutes.

 

[Jm34]

I'm starting  to feel really bad atm. somehow i can't think about anything else but my problems, and since i started to write here in the past day i started to think more and more about my problems then this anxiety hit me again... Before getting the gliadin antibody results i was like fine, completely fine but then the stomach problems appeared... then now i'm eating gluten free i think i have some form of cross contamination according to "Ennis_TX", i do touch the knobs etc with my bare hands and i do like to use my hands to eat. But now thinking a lot about my problems this anxiety is just popped up again and is strong at least today. Like i'm jus scared by being alone but then i'm scared that i may kill someone etc... i used to have this for knives etc... but it just went away once i forgot about my illness. Now my mother already told me she bought the old complex vitamin pills i used to eat 6 years ago, so i will start it as soon as they arrive. I hope the weather will be fine and somehow i can get some physical workout too somehow i need to remove this constant rotary thinking about my problems again, it's probably happening to me once again because the doctor just keep telling me that it's not a symptom it's anxiety to everything i feel. I must stay strong and you should too if will have similar problems to me ever in your lives. I promise tomorrow i hope i can write with a clearer mind.

To "Ennix_TX" may you explain it a little more deeply on how did you eliminate the cross contamination completely? One of my biggest problems with this celiac disease that idk. if what i eat is cross contaminated or not... Like how should i do or what should i do? But tomorrow i will completely read the newbie guide.

Sorry for this really honest and bad post from me.

Thank you all again!

[BlueTree]

Sorry you are going through so much. For many it's a big puzzle that slowly gets put together. I agree with eating Whole Foods right now that naturally contain no gluten. In saying that, your doctor mentioned irritable bowel syndrome.  This has symptoms like celiac & many with celiac have it.  So many suffer from it. Also, look up SIBO (small intestine bacterial overgrowth). Seeing a dietitian well versed in GI nutrition is so important. If eating Whole Foods does not help consider reading about FODMAPs. But, seeing a trained dietitian/nutritionist for nutrition education is needed. 

[Ennis-TX]

It honestly got a tad stupid how I would fix stuff, bit from paranoia but I used to just open the pantry, spice door, and fridge and get everything ready then put on gloves and fix my meal without touching any handles so I knew my food would be safe. I also laid out butcher paper on the counter so nothing would touch it (this also makes cleaning up real easy and still do it too this day) I had my own dedicated cookware, dishes, and utensils that no one else used so they would never be contaminated. I went way overboard I will admit but I was determined to stop getting sick. The Newbie guide will cover a lot of the cross contamination issues.   

[Jm34]

Just a quick update since i got up. Now the funny thing is, after i wrote my latest post i was feeling so bad i laid down on my bed in a way that my nape and the back side of my head was pushed into the back side of the bed so it was like when you push it that the blood flows into your head. After about 10 mins i was feeling so good i was just feeling almost superb out from this really bad depression like anxiety like feeling... So i slept the same way pushed up my pillow and slept on my back, felt like my blood will come out on my forehead but i had a nice sleep. If i just don't push my nape everything i see is like vibrating at a low frequency or like what i see is prickle (idk. if thats the correct English word for it) or similar, but then again i can't push it the whole day...

[GFinDC]

Hi Jm34,

I am just guessing, but it you may have low blood pressure.  It might be good to have it checked.

For eating better, try not to eat anything in a box, or any baked flour type things, like cakes or cookies etc..   Also, try not to eat anything with more than 3 ingredients on the label.  Simple foods are easier to understand their effects on the body.

You may be reacting to more than just gluten also.  Some of us get other food problems besides just gluten.  Like I can't eat dairy, soy, nightshades (potatoes, tomatoes, peppers, eggplant), carrots, celery, oats, caffeine (very limited).  The best way to find out about these possible food problems is to eliminate them from your diet for a few weeks to a month and see if things improve.  There aren't many good food intolerance tests that doctors can do.  You could also eliminate any carbs and sugar.

I hope you figure it out soon and feel better!

[Jm34]

My last serum test results basically:

Potassium 3.4 nmol/L reference: 3.5 - 5.1

Calcium 2.36 nmol/L reference: 2.20 - 2.70

Iron 15.0 umol/L reference: 14.0 - 30.0

Transferrin 2.88 g/L reference: 2.00 - 4.00

Folic acid 20.3 nmol/L reference: 2.5 - 45.4

B-12 vitamin 218 pmol/L reference: 142 - 725

TSH 3.750 mIU/L reference: 0.400 - 4.500

I'm going to check my blood pressure in a moment (even with the same never ending weird blood pressure feeling i never had any problem with my blood pressure before, it were checked several times.). The real weird thing is at the first time when i started going gluten free after my diagnose i had the same feelings after 8-9 months, now the same thing is happening this whole blood pumping through my head feeling and etc... The same nausea feelings if i don't eat for 3 or more hours, the same stomach burn the same chest pressure like it's an acid problem i really don't know. My overally happiness level is really low again since i think a lot about my problems. I hope this complex B vitamin pill will arrive soon.

However, could i guess it out which food , because i need to eat something. I eat a lot of potatoes lately thats a fact. I tried to do a food intolerance IGG test before and the results stated: milk, eggs, corn, peas, yeast, oranges intolerance (basically what i was eating most of the time at that time were positive) but the doctor said to me that these kind of tests are false positive most of the time. I'm not eating those stuff for almost a half year now.

I really don't understand how the story is the same as it was 6-7 years ago, exactly the same, everything is the same. I go gluten free, and i start to develop the exact same symptoms like before.

I tried to finally clean out the kitchen with my mother tomorrow i will scrub out the oven too, but there are still foods in our kitchen that isn't certified gluten free. I really wonder how can i know if i'm glutened or not. Sometimes i still feel this sharp pain in my tummy on the left side like it's my duodenal or idk. That must be because of gluten?

Thank you guys again for trying to help me or at least giving me some sympathy.

[Jm34]

Some update from today. I got up and felt okay but i still have this fainting slight weird seeing problem in my eyes and my headache is still there, i still feel that the blood pumping in my head. I checked my internist he said nothing but "eat the prescribed antidepressants" even tho i told him listen: It's the same old story like 6-7 years ago when it first come on me. My gliadin is positive, i start the gluten free diet and after some fast success, i start to feel really bad, and really depressed, and the anxiety comes on me and i start to feel scared that i will feel the anxiety again... It's exactly the same story like when it first started back 6-7 years ago. Today my duodenal pain (lower left side of my tummy) were stronger and it even hurted some on the lower right side of my tummy. We cleaned out the kitchen with my mother again, yesterday. I remember back in the day before it all stopped in the end but i was eating gluten again. It's too bad that i don't know a good gastroenterologist nearby but at the 20th of december i can see the allergologist here, maybe she can help me with something, maybe i wish. I just don't understand how can i feel so low and depressed and weird while i eat nothing but gluten free. Like it's really weird that i wear lots of cloth because of feeling like it's cold, or i'm shivering if i have to piss or if i have to take a s$#&, my temperature is fine, my blood pressure is fine and sadly i still feel depressed by the afternoon comes.

The vitamin B pills my mother ordered me arrived, they are gluten and lactose free, containing:

b1 50mg, b2 50mg, pantothenic acid 35mg, niacin 35mg, b6 20mg, folic acid 450microg, b12 50 microg, magnesium 350 mg, manganese 4 mg, zinc 20mg

and something called: withania somnifera extract 20mg.

Tomorrow i will start to eat these kalium-klorid pills my internist gave me. I really hope i can get a little bit better in some days please god let it happen.

 

I still wish that i could understand when do i feel intolerance or when do i feel i'm glutened. I'm even wondered now am i actually a celiac?! I'm really lost, because every time i start this diet somehow it ends up ruining me completely, or does it takes time and pain for it to happen that i finally feel good?!

I feel so bad and depressed and weak that i don't really wanna take a train to the next city just to find a gastroenterologist who does nothing in the end other than a gastroscopy. :SIGH

 

Thank you all for everything you already did for me.

 

Later the same day:

So i was feeling so bad and and such a huge anxiety pfft... then i pushed my nape again, so the blood pumps into my head and the same thing happened after 10 mins i'm completely fine, i become hungry and i eat so well but before the whole day i had nausea... weird...  what the heck can do this to me?!

[Pegleg84]

Hi James,

Welcome to the forum. I am so sorry to hear the grief and pain you've been through trying to get diagnosed, and after. Celiac Disease can do crazy things to our bodies and brains. No two people have the same symptoms, and it can take a long time to heal. There's lots of trial and error, and you might feel like things are worse before they get better, but they WILL get better.

As others have said, right now you should be eating just naturally gluten-free food: veggies, fruit, unprocessed meat (no sausages, sorry), fish, nuts should be ok too if you can eat them. Avoid dairy and grains for a while. Your body needs to heal, and that could take months or a year. It sounds like your family is trying to help (new dishes, etc). I also recommend cooking for yourself when you can, then you have control over everything.

I have to say that the anxiety was the worst symptom I had before going gluten free, and even now it's the worst part when I accidentally eat something I shouldn't. One thing I've learned is to try not to focus too much on your symptoms, because our minds have a tendency of making them feel worse (this is a hard thing to do, but good to remember). Also, realizing that while you'll start to feel much better, you might never get to 100%. For me, realizing that has helped. I might not be 100% better, but I am 90% better, so feel not good sometimes, which is much much better than feeling horrible all the time.

Most Celiacs have problems with a few other foods. For me it's dairy, soy, and maybe nightshades (trying to figure that out now). Only you can figure out what makes you feel better or worse. These are intolerances, and there aren't any medical tests for them. You have to not eat them for at least a month and see if you feel better. My motto: if it makes you feel like crap, don't eat it!

Anyway, know that we're on your side and always here if you need advice or just want to vent. Everything feels weird and horrible and hard at first, but it will get better. It might take a year or two to see a big difference, but I think you will.

Hugs!
Peg
 

[Jm34]

Hi Peg!

It definitely works like that, if i think about my problems everything is way worse. I have this stupid headache, weird feeling in my head and in my whole body from my fingers to my knees ending in anxiety and depression thing for 2 weeks now but whats funny and sad at the same time is that, i had this at the first time 6-7 years ago when i was diagnosed exactly the same way. The internist checked my blood pressure and my blood sugar, and everything were good... and i couldn't even go without pushing the back side of my head without paniciking... Then the same thing like now happened, they are telling me to eat antidepressants and xanax...

If i don't push my nape or rather the back side of my head, even my hands go weird sometimes. Like i checked my blood pressure then my little and ring finger on the hand / arm i checked on were like numb cause of no blood in my veins or idk. it's really weird... Then i just push my head for myself and i become happy in 10 mins and my anxiety miracleously disappears?! Somehow my diet sent me straight to the same symptoms at that time 6-7 years ago i can't remember, then i stopped my gluten free diet because my mother didn't believe i'm a celiac because my tests were negative (after stopping a 6 months diet and eating gluten for 2 months...). Somehow then i got better but how i just don't know and i just don't understand. There must be something in my diet which i can't tolerate or i just simply don't understand because i don't think i'm eating anything special that i didn't eat before going gluten free...

If i could get over this i could get over this whole thing because i'm living with problems since i was 10... some pain is nothing compared to this anxiety mixed with this (almost like a low blood pressure) kinda feeling of my whole body... i even feel the pressure coming out of my open eardrum...

One thing is for sure that this time i won't be fooled and i won't give up on my gluten free diet no matter what even tho sometimes it's hard to believe it helps me at all...

[GFinDC]

Hi James,

The blood pressure problem I was talking about is intermittent, occasional and sudden low blood pressure.  It may not be what you have, just a thought.  My blood pressure was fine usually, but sometimes would drop very suddenly.  It stopped doing that after a I quit eating soy.

Food intolerances are not easy to test for doctors.  They only have a couple of food intolerance tests that are really valid.  A better way to test is to test your own body.  Simplify your diet and keep track of everything you eat.  Stop eating any processed foods.  Reduce the number of foods you eat.  It's basically a detective game, trying to figure out the problem foods.  Nightshades are a whole group of foods that should be eliminated all at once.  Nightshades are peppers, potatoes, tomatoes, and eggplant.  You can also eliminate all dairy.  Soy is another food that causes problems for lots of people.  Here isa list of foods that are common allergens for people.  You could try eliminating all of those for a months and see if you get better.

Open Original Shared Link

[frieze]

1) do you have chiropractic in Hungary? if so, see one for your neck.

2) increase your magnesium, the vitamin D increases you body's need for it.

3) good luck

[Jm34]

Hi GFinDC.

Out of that list i'm only eating: celery, eggs, soy (i stopped eating after someone mentioned, i'm soy free for a half week now), and almonds i also eat sometimes some wallnuts. I stopped eating anything thats premade or half made. Even the sausages i eat is homemade out of meat, garlic, paprika powder, cumin powder, pepper powder (note that it's a traditional Hungarian dish ~ we make and eat sausages out of pork).

On top of that i eat lots of potatoes, i eat potatoes every day (i have to eat at least something...), i eat rice 2 days a week, and 2 days a week buckwheat, chickpea flour, tapioca starch some xantan/guar gum and sometimes millet...

I really don't know but from now on i will stop eating any gluten-free flours, but then my mother is really crying out that i will have some kind of deficiency because what should i eat now if i can't eat anything she used to make for food. I am going to cut out every spice she uses too i really don't know. Today it's 12:44 and my anxiety started at around 11:30 ... instead of the usual 16h 17h 18h period... it's the same thing again i feel this weird feeling in my hands then i start to think that i may hurt someone or myself with them, like i would choke someone to death. Then again i keep thinking about my problems even tho i try not to.

At least the sun is shining and thats a plus but the wind blows like crazy sadly.

Ohh god i wish something would finally help me, if i think about my problems i am like almost crying and i still have this weird blood pumping in my head and in my hands and in my legs, yet i could chop some firewood when i went outside for some time.

[knitty kitty]

You poor thing!  You have been having a bad time!  Bless your heart. 

I experienced similar weakness and anxiety.  I had Pellagra in addition to Celiac Disease.  Pellagra is a deficiency of Niacin, a B vitamin.  The four D's of Pellagra are diarrhea, dermatitis, dementia and death.  The dementia made me depressed and anxious.  I could not think properly.  I had thoughts that kept repeating and some became scary.  The antidepressants I was given did not help.  I had no energy and felt like I had to drag myself around.  I had strange tingling vibrations in my body.  I only felt better when I started taking 1000mg of niacin a day.  I started feeling better within a few days.  

Niacin is used inside the body's cells to produce energy.  There is not an accurate blood test for Niacin deficiency.  If you are deficient in Niacin, you need to take a Niacin supplement (100 mg at least).  The vitamin you described doesn't have enough niacin to make up for the deficiency. Doctors seem to have forgotten about this disease.  

I would suggest being very strict with your diet until you heal more.  No grains except for organic basmati rice, no legumes, no nightshades (potatoes, tomatoes, eggplant, and no peppers -- this includes paprika since it is made from peppers), no soy, no eggs, no dairy. No processed foods.  You might be able to add some of these back later after your insides have healed. Just meat and fresh veggies for now.

Please try the Niacin.  I see similarities in what you are experiencing and how I felt with Pellagra.  I understand the headache.  I felt like my brain was on a dimmer switch and the switch was being turned down gradually.  It got darker and dismal in my head.  My thoughts went round and round and down and down like water circling a drain.  I became depressed.  But everything began to brighten up after starting to take niacin.  Niacin is a water soluble vitamin.  If you don't need it, your kidneys will excrete it.    I hope you feel better.

[Jm34]

Thank you for your reply Knitty Kitty!

Somehow i realized that someone a half year ago where i got a serum test once, told me i should be checked for histamine intolerance, so i am going to do that next week because the ideas always have to come by the weekend right?! If it won't get diagnosed idk, i have a date set with an allergologist here (but i don't think it will help me as far as i'm concerned).

What you wrote about your symptoms is really similar to mine, the thoughts going in a never ending loop, i can't even think sometimes because the whole day i sing songs on the inside or just think about all kinds of stuff. When i think about bad things the problems comes really badly... I may just try to get niacin supplements then, after these blood test results next week.

edit: I've found some gluten free 100 mg niacin tablets (100 tablets) here in my country, so ordered one.

[Jm34]

So i was at a laboratory and paid for some serum tests, for histamin intolerance and celiac ema tests since a celiac here in Hungary told me that with these ema tests i can check that my diet is good.

This weird pressure like headache is still on me tho, sadly but yesterday i didn't really had any form of anxiety until i ate some smoked sausage. I did eat it on purpose since the laboratory said to me that i shouldn't be eating low histamin foods. Somehow i realize now that i felt really bad after eating canned tuna for example. Today it's like a pressure kind of feeling is in my sinus, and i can't even breath through my nose or hardly, and somehow sometimes my throat is like itching... or something similar i keep coughing out of nothing... it's really weird.

And after going to the laboratory i realized this acid reflux like bs. that came to me 6 years ago or 7 when i first saw a gastroenterologist is still here, because if i don't eat for a maximum of 3 hours, i immediately start bloating and belching (if thats the right word for stomach gas coming out of the throat/mouth), and my throat starts to feel like burning or similar it's very weird. Ever since i first saw the gastroenterologist 6-7 years ago this weird throat symptom is with me sadly, if i eat a small piece of chocolate it burns my throat so badly.... When i were being threated by that doc, he gave me so much anti acid pills that i had to take like one PPI morning, 1 PPI afternoon and 1 anti acid pill (non ppi) before sleep... until my liver values in my serum tests went completely crap so i stopped...

Now since my blood were taken i'm trying to eat as some suggested: meat and veggies only.

So it will take another 20 days or simmilar until my tests will arrive... :SIGH It will be a long wait, at least they suggested me another gastroenterologist at the laboratory but i bet that another doc with 40 years or more of experience will won't help me at all with my problems... Some of these doctors here just don't know s**t about celiac disease... ... :SIGH

[Beverage]

 

Some of the problems you are having may or may not be related to Celiac's. You may also have a problem with a bone in your neck or something there being out of place, which could cause the tingling and numbness in fingers and hands. Have you heard of Thoracic Outlet Syndrome? You might want to read about it and compare your symptoms.  Not to throw more ideas at you, but I feel there are multiple things going on.

[Jm34]

So for the past 2 days i was eating apple sauce with meat basically, but now i become like super irritated like i get crazy angry in 3 seconds or so... then my mother read that i may have fructose intolerance?! ........  I used to tell every f*****g doctor that i have this strange burning and shrinking feeling in my mouth or the top inside part of my mouth for years now.... ******** ********* ********** Tomorrow i will stop eating apple sauce for f***s sake!

[Beverage]

I used to get an itchey feeling in my mouth, and sometimes my throat would close up, after eating many unpeeled fruits and vegetables. I wouldn't get irritated and angry, but did get that feeling in my mouth. There is something called "Oral Allergy Syndrome." I don't seem to have the problem since going gluten free. 

A test would be to peel an apple, wash the peeled apple, and then eat it. I don't want to suggest you do anything that might bring on your symptoms, but that would be a test if it is the apple or something on the peel.