Newbie !

[honeypie]

Hi am a newbie and am just looking for some help advice etc....

Well i am due my biopsy on wed morning and really DON'T wanna get it done as am so scared of anything going in my throat that shouldnt (am emetophobic fear of vomiting ) so this is so off putting......... Any way my doctor said my biopsy WILL come back as celiac as my bloods came back as 99.9% (so why do i need a biopsy ??) and been waiting over a month now for this biopsy and as i suffer with anxiety this has rocketed so much i HATE bein this way so i paid for a private vega allergy test to get done just while am waiting as i was so sick of bein in pain and feeling ill 24/7 well the test showed that am allergic to WHEAT / POTATOES / BANANAS :-) so that was a start !!

anyway how this all started i was having issues with my anxiety and just lost my appetite which is common for me when struggling with my anxiety but this went n for a good few months of not eating then when i did start TRYING to eat i was living on one piece of bread ./ toast or few biscuits a day sometimes nothing at all i then started getting bad stomach burning apins and my doctor said i was suffering from acid ? after a while more things started to happen heres a run down of all my symptoms -

Burning raw sickly feeling from my belly button and burning goes into throat & between shoulder blades..........

acid in throat (and can feeling & hear it moving round my stomach esp if i haven't eaten for a while)....

tight squeezing pain just above my belly button (like some1 in there squeezing me to death)...

tight squeezing feeling in throat....

constipation....

dry scabbie looking skin on knuckles that gets really sore....

bad LOUD trapped wind (even if i sit there and pass wind all day and it really stinks bad i still have it all in stomach)..

bloated stomach....

feeling that food is either stuck in my throat or just below my ribs in the center....

nausea....

lower back pain...

days where am just extremely tired....

loss of appetite....

trembles....

lost alot of weight....

days were i feel REALLY REALLY hungry even if i have just eaten....

crying everyday just feeling down & depressed....

headaches....

sore mouth (ulcers etc..)

lump feeling in throat....

my list could most prob have more but just cant think unless it happens lol....

anyway my doctor put me straight onto a gluten free diet because of the pains i have been in and i REALLY don't want to go back to eaten gluten cos if i eat it by mistake i get this tingeling in my tongue & feeling like my throat is closing within minutes of eating ??

anyway so have been on gluten free diet about 2weeks (STILL IN BURNING PAIN ) This is my worse problem the burning in my belly and back along with nausea i have the biopsy on wed but am scared it will show up as ned as i have been eating gluten free (had some slip-ups) i just wanna no how long it is gonna take me to start feeling better again i just wanna be able to eat foods with out bein in pain or it kicking off my stomach or me just feeling so down & depressed (i don't care if its gluten-free food or gluten i just wanna eat ) and right now i cant due to this burning i started new tablets 3 days ago (Omeprazole 20mg) and also i have now been diagnosed with IBS ;-( am 28 and just don't have a life i wont go out as i have lost so much weight people swear am on drugs and i don't want to have to explain myself to everyone and am glad that yes my doctor did find something and if my biopsy comes back as neg as i have been eating gluten-free then i will just carry on eating gluten-free as i don't want to put myself back through all that pain again.......am sick of all the pains and sick of bein on meds everyday at my age....

just a few questions ??

whats the best easiest foods to eat while my stomach is still so raw i find porridge sometimes sooths it ?? as fresh salads etc aggrovate it..

also what symptoms did or do you have and how long did they go on gluten-free diet ??

ALSO were do i start with the foods etc i have an eating disorder and find it hard to eat as it is but i can eat ricecakes/tuna/mayo/ham/biscuits/snack a jacks/ porridge/ cereal (thats what i have been eating lately

am just cnstanley worrying 24/7 about what if i eat something wrong and also my blood results keep playing on my head as the doctor said they came bad HIGH FOOD ALLERGYS then my vega allergy test said wheat / potatoes does this mean i may not be celiac ??

Thanks xx

[cszymanski12]

Hi!

I am a newbie as well. Im almost 21 years old and I have been fighting to figure out what is wrong with me for quite some time. I was experiencing intermittent symptoms that are now almost chronic for the longest time. I said nothing to my doctor or anyone else because I knew they would think I was crazy. Who would believe that literally everything could feel like it is falling apart. I felt like a hypochondriac so I kept to myself. It always seemed to get worse when I would eat things with wheat and oats. I am a huge advocate for eating healthy and working out so I have no understanding how this is happening. I eat wheat in most things that you can choose wheat in; bread, oatmeal, crackers you name it. The symptoms are scaring me and I have no one to talk to. I am finishing to be a veterinary technologist in school here soon. I was diagnosed with depression a few years ago when I mentioned some of these symptoms to my doctor, and there has always been the lingering issue of my thyroid being enlarged but it never tests positive for hyperthyroidism. I feel even more depressed, alone, and stressed because I know that Im not crazy and that these things are happening to me and I need a doctor to stop trying to misdiagnose me.

I havent been too far along on my testing quite yet. I have done an EXTENSIVE amount of research on this disease and it is the only one that fits my symptoms. I literally have read through others posts and sit there nodding my head in relief that someone else is feeling like this too or has the same question. The worst part is because Im in "college" these doctors associate my fatigue and chronic insomnia with studying. After looking at my diet its after eating those ingredient based foods I feel like this. I have so many symptoms like I literally feel like I'm going crazy because its so much that is going on. I have had symptoms that arent even related to GI and I tell them to my gastroenterologist and he just ignores them to me its because he cannot place the symptoms to a disease so its not relevant? I honestly do not think I have ever been so sick in my life.

I have experienced the following symptoms all at same time or in different progressions:

Increased ALT and AST enzymes in my liver and thats it and this has been since I started truly seeing these weird symptoms

- Bloating

-gassy

-either chronic diarrhea or constipation (currently its so bad of constipation I have used almost every bowel product and im having a horrible time getting out of this episode)

- Retching or vomiting more than once a day

-Feeling like there is something stuck in my esophagus and like someone is sitting on my chest, with awful burning in my stomach. Doctors currently think its just a pepcid ulcer or duo ulcer.

-Feeling like theres crawling under my skin, I then have started to have anxiety attacks because Im freaking out about it

-I was diagnosed with depression at age 12 when I was experiencing this sudden rage to eat and eat etc. was put in the hospital for eating disorder

-Now Im super thin recently dropped 20 pounds not a reason for it at all. No change in anything I did normally and I was even eating more because I was noticing I was dropping weight.

-I have these rashes on my arms, eye lid areas, above my lip, and sometimes on my knees and elbows depends on what i eat. They itch and are red, little red papule thingys are there and filled with clear fluid so embarassing I cant wear cute dresses anymore.

-Have horrible head aches and had 2 seizures this past summer

-My Iron is very low, electrolytes, potassium etc. I even drink gatorade to help but nothing.

-I have this nasty mucus in my stool and theres these white floaty things in my toilet when I do go to the bathroom.

-I havent had my period in 4 months and its scaring me and I know im not pregnant.

-Im really irritable my mom pointed it out to me a few times when I came home to visit

-I hear these redic noises in my belly button area and under it, its so embarassing when Im in a lecture hall and it happens people laugh at me.

-I have had blurred vision but not much but I feel like these symptoms get worse at night and sometimes morning im not sure if anyone else agrees?

-I have a hard time sleeping I have weird urges where I suddenly wake up and its like a mess.

-I cry like all the time and these doctors said its just the depression and anxiety and I know thats not true because things were never like this before.

-I feel like my heart is racing but when they did a EKG is wasnt bad, and I cant even workout anymore because of all this.

-Horrible abdominal pain at times after eating or sometimes random on right side mostly feels like my intestines are twisting or being pulled I cry everytime.

Theres WAYYYY more but I cant even think anymore because literally there is so much happening. I mean I look at it all and I feel like who would believe you when you say all that? None of these doctors listen. They thought it was gallbladder (no), then GERD (no), now are going to do ECD and colonoscopy. What if they dont find anything and they think Im crazy. All I want is to feel better and I feel like no one understands. I cry everyday because Im throwing up, or the abdominal pain, or the anxiety or something. Im scared I just want answers. I am almost certain that I have celiac and my moms whole family has random similar symptoms on some of them but they just live and tolerate it. I lost a boyfriend because he couldnt take all this anymore and it made it worse.

I have researched and found also infection, physical injury, and severe stress/trauma can cause this to start or flare. I have had all the above additionally and the infections were bad mono, body wide staph infection. I have a friend with celiac and a fellow tech I work with does. Both said within weeks they could feel the difference with gluten free food. I bring up getting tested to these doctors and they all say the same thing. Having to see if its IBD, Chrohns, or ulcerative colitis i was told today. Also a few others. So why put me through the pain of waiting for those results and them all to not fit me before they look at celiac? Im struggling to get through my day and I feel somedays like i could sleep 16 hours and still be tired or be able to be up like I am now at 3am.

I need advice, some guidance, ways to be an advocate to get my diagnosis because I have seen my friends mom who was 60 before she was diagnosed and almost died at 90 pounds with the most severe symptoms. I know its possible i could also have another disease autoimmune diseases are in my family. Im just young, and scared and Im intelligent because I have done the work to try to help get myself some answers here. I even got asked if there was a way I had tapeworms or intestinal parasites. Im a veterinary professional so I knew that was a def no but its everything but celiac. I see that its so commonly missed and its so utterly life threatening why are things still not getting found faster?

I know this is alot but I just have so much on my plate right now and as much help, advice, support etc as I can get the better thanks everyone!

[Takala]

honeypie,

The anxiety is a symptom of malnutrition and also can be a symptom of gluten intolerance. Once on a gluten free diet, it will ease off and go away, but you may need to take gluten free vitamin B complex and calcium, D, and magnesium supplements. Be sure any drugs you take are gluten free, also, if celiac or gluten intolerance is your problem.

I went on a grain free variation of the Specific Carbohydrate Diet at first, only I also was not doing yogurt, either, avoiding dairy for awhile.

I ate a lot of almonds (still do, using a blender to grind them for baking), coconut milk, avocado, apples, eggs, plain poultry, vegetables with pure apple cider vinegar or fresh lemon juice and olive oil. Good fats may agree with you more than any kind of cereals at first. Try to stick with just rice for your grains at first, it is the easiest to digest. You can make biscuits out of rice and/or coconut flour. You can also make gluten free quick breads in the microwave, in a ramekin or cereal bowl, with nothing more than an egg, olive oil, some vinegar, a pinch of baking soda and salt, and some gluten free nut meal or flour mixtures and a bit of sweetener. (search my username here for bun in a cup recipes). Ginger and tumeric and gluten free curry powder (combine tumeric and cumin and you can make your own) are very soothing to the stomach, along with coconut milk, if you want to make a sauce to go over rice. Many Indian meals can be easily adapted to being gluten free - here in northern CA we even have several restaurants that offer gluten free Indian meals, and they are not difficult to make - you heat oil with spices, then add the coconut milk and / or yogurt to make a sauce. At home I make gluten free flat breads in a cast iron skillet with oil, using a gluten free "pancake" recipe of chickpea flour mixed with buckwheat and potato starch and water, no egg - if you can't do potato you could substitute another gluten free starch.

_________

csymansky12,

Heartburn, GERD, and gallbladder symptoms all go along with gluten intolerance. Anxiety can be caused by celiac/gluten intolerant malnutrition.

the rash can be DH which is a symptom of celiac, it can be biopsied and a positive outcome is proof of diagnosis, so if your medical care professional is told this and is refusing to do it he/she is incompetent, go to another doctor and get it done. Rip - off doctors who sometimes are more interested in insurance payments will attempt to rule out every thing else first, which can take a year or more, until they get around to testing for what is the most obvious.

You can also do over the counter testing for celiac genes as well. But I would advise you to start over. Also, pay attention to how doctors interrogate you in the beginning of the appointment - once one doctor labels you a "head case" that label will follow you around whether or not it is true. They will ask, what did doctor so and so say - well, if doctor so and so says it's Fibro and you say that, you will automatically be shunted into the Head Case category. Same with anxiety. I have had sero negative arthritis and spinal stenosis in my cervical spine from a very early adult age, and lucked into an osteopath who correctly diagnosed it in my twenties- but because I have worked hard all my life to keep my range of motion, and have taken my supplements I am not as bad off as somebody who ignored that - yet I can't tell you how many nasty, ignorant, arrogant doctors, including rheumatologists, just "looked" at me and said, you can't have that because you are too young. You must have "Fibro." I really could have smacked them, but this is why God gave me above average verbal and writing abilities to combat this sort of garbage and I also carry printed out scan results now since their magical instant x ray vision is set on "FAIL." But I have learned that when I go to the new doctor NEVER to repeat any negative things that I know are not true about myself, that they have said, to them.

[cszymanski12]

Thank you so much for the comfort and helpful information. I have to say it is exceedingly helpful to just see everyone's thoughts and what they have to say. It just is so helpful knowing that your not alone and your not "crazy." I literally have just dug as deep as i can regarding my symptoms and such just to figure out what is going on. It feels like everyday that I figure out something new that makes complete sense as to how this is all related to celiac disease. I recently have found out from talking to my mom that she too has experienced similar symptoms and IBS so much of her life but was never diagnosed or treated.

I had my endoscopy and colonoscopy last week. I was so disappointed. My mom came with to help me recover. GI found literally nothing NOTHING on my scopes except hemorrhoids. He told her he took biopsies to test for GI diseases and rattled off them to her and she heard celiac so she didnt say anything more. My concern is I know that it can be patchy in the small intestine so if they dont take the 6 biopsies then they can miss it and i can be a false neg. Im not sure what to do Im waiting on those results still?

Called my GI to ask about doing the serology test and he said that we would wait to see what the biopsy said. Well thats redic because what if it comes back neg. I will surely go to someone then who will test me. I know i have it im so sure of it now I feel like i literally could diagnose myself here. I really paid attn to when I eat and what I eat what happens. Its so clear after eating foods with gluten and I think soy as well that I get sicker than you can imagine! Within 30 mins I have a distended tummy, horrible abdominal pains, my right side hurts like where my gallbladder is, have horrible chest pain which feels like someone is sitting on my chest, diarrhea, sometimes vomiting, and then im super sleepy sometimes have insomnia etc. I then get these like cyst like hard bumps under my skin as well. I thought for the longest time they were pimples. Now I see they are related to celiac and let me tell you they hurt.

I also know for a fact that these rashes are DH. I have closely compared them to pics and asked my friends who are official celiacs. Its awful how itchy I am right now and my skin in general is just dry and gross =(. I need some advice what to do. What if the tests come back neg?? I know that I have it I have had IBS for 2.5 years now I feel like im like 80 years old, thats how sick i am. Literally eveyrthing feels like it is wrong with my body. Anxiety all that i described above. I am so tired of being told that " oh when I was yout age i had the exact same symptoms and I got married and had less stress and im completely fine", by these nurses and doctors. NO! thats not at all what Im going through. My whole life I have had the lowest immune system.

I have recently also pieced together that in getting mono last year that is what truly sparked all this. I know that getting a virus it can mimic the proteins or something like that and then your body cant distinguish between the two and then when gluten is intaken your villi are attacked. Is it wrong that I feel like I know WAY more than my doctor or any of these doctors?? Does anyone else feel like this?

I am going to start strictly on gluten-free diet if they wont help me anymore and I will find someone who will then test me and want to diagnose it. I cant live like this anymore its awful as Im sure most of you know! I had some peppermint tea today and it helped my nausea and a few other things and I had some gluten-free pretzels as my snack I was so pleased to see how for once I could enjoy a meal or snack! I just feel so down and I just need more advice even though Im slowly getting the hang of this.

Thanks!!!