Possible Celiac Symptoms?

[stephanie88]

Hello all,

I am looking to see if anyone has had similar symptoms as me because i am completely confused at this point! i am 22years old, 5'2, 129 lbs and fair skin. i do not take any medication except elmirion occasionally for my interstitial cystitis and loestrin24. So, around this time last year i was having nausea/vomiting but only while sleeping. It was very strange... i would go to bed fine, and wake up 2/3am with a strong nausea feeling and hoping i could make it to the bathroom in time. This happened anywhere from 1 to 3 times per week. I seen one of the main doctors of the gastroenterology department at a local hospital. He noticed how fair i was and that i looked of euproean decent so i was checked for celiac disease. My IGG was only borderline. it was either a 12 or 13, i remember it just made it as borderline. So i was scheduled for an upper endoscopy. i was hopeful that i would get the answers i was looking for. unfortunately my results were negative. because this didn't solve my nausea/vomiting problem that i couldn't bare anymore, i decided to eliminate some gluten anyways. i took out all the gluten cereals in my diet and made sure all my cereals were of corn or rice. this suprisingly worked and i was happy. More recently however, i seemed to be having stomach pains so intense i've almost passed out. They seemed to be pains as if you would need to use the bathroom, but nothing...lol. i remember each time walking to the bathroom and before sitting down i'd feel extremely hot out of no where (especially in my ears! they felt like they were on fire) and very faint, either loss of vision or hearing for just a second or two. i really think the only thing keeping me from going completely out is knowing how to calm myself down through all this. I made an appointment with another gi doctor that could get me in the office sooner. And during the wait, i went completely gluten free. i had alot less abdominal pain. But i was still having constipation followed by diarrhea. i told the doctor that i did feel some relief with a gluten free diet. he seemed to think celiac disease is rare and that i most likely do not have it. He, however, did re-test my IGG and it was a 51. Almost 5 times higher than it was last time.! i got these results on my own through the lab company. i have yet to hear from him. i was also scheduled for a colonoscopy about two weeks ago to rule out any ibd & diverticulitis. i started drinking the moviprep and while the taste was awful, sunny-d was a great chaser. i started to feel extremely sick though. i felt flu-ish. horrible backache along with a headache. pretty much like hit by a bus feeling. i was miserable, crying and made my mom come sleep with me in the living room that night. of course i gave up on the moviprep and rescheduled my colonoscopy. the new date is in 2 weeks. my backache/headache and crappy feeling was gone when i woke so im positive it was from that. within the past few weeks ive noticed a corner of my hair has fell out. it is growing back, just very thin. (also found a white hair growing!) i've been extremely sleepy and sluggish at work. i went to my primary care along with my igg results and asked if we could check my vitamins. she agreed to check my b12 and folate. i just received a letter today saying my b12 is infact low and that i need 1 shot every week for 6 weeks then 1 shot monthly. This has me almost positive it's celiac. im just still confused if celiac can cause this extreme pain and colon issues. my bowel habits have also changed. it's now thin & ribbon like, or pencil thin. i almost feel like it's a lack of fiber. i had constipation when i was about 16 or 17 that was so bad it was pushing my stomach up towards my esophagus. and still i've never had symptoms this bad. ive also noticed my muscles twitching for days, cramps in my feet-which usually only happens in the winter time). i've added caltrate gummies as well b/c i am lactose intolerant and i'm sure im probably deficient there too. Any idea if a vitamin deficiency would cause muscle cramps/twitching/pain? I also wonder if thats why i had an awful expierence with my colonoscopy prep. Thank you in advance for any help or advice

[AVR1962]

i remember each time walking to the bathroom and before sitting down i'd feel extremely hot out of no where (especially in my ears! they felt like they were on fire) and very faint, either loss of vision or hearing for just a second or two. ive also noticed my muscles twitching for days, cramps in my feet-which usually only happens in the winter time). Any idea if a vitamin deficiency would cause muscle cramps/twitching/pain? I also wonder if thats why i had an awful expierence with my colonoscopy prep. Thank you in advance for any help or advice

You are definately having an allergy reaction. The heat in the ears and feeling like you are all sweaty is what I do when I eat chocolate, of all things, not fun! I get a milder reaction to dairy, I don't get the heat in the ears. With glutens and with dairy though I will feel strange feeling like I am going to break out in a sweat and then don't.

Sounds like your body might be vitamin deficient and if you ahve had any blood work I would request a copy to you can see what is low or borderline. I found the muscle cramps, spamsm and twitched went away with more potassium in my diet. I found it very hard to keep up with the high potassium foods and if I slacked off all this would come back so I now take a potassium supplement. I have heard of several people getting sick from the stuff you drink before a colonoscopy.....I wonder if it is just too much liquids too fast.

[ravenwoodglass]

Since your antibodies have gone up I would suggest you tell the GI doctor you want to do an endo first. While I can appretiate that they want to rule out other issues since you have had a positive celiac panel and have celiac symptoms and the common vitamin deficiencies IMHO celiac should be the first thing they look for not the last.

Be sure to tell them that you had a reaction to the Movieprep. Some doctors will want to do both endo and colonoscopy at the same time and there are other preps they can use.

Do be sure to keep eating gluten until your done with testing and then go strictly gluten free when that is done. Also the choice of whether to do further testing when you already have positive blood work is yours to make. False negatives are common on both blood and biopsy but false positives are not.

[mushroom]

Hello! and welcome to the forum.

Can you give us some more information about your testing? When you talk about your IGG score, I assume it was AGA IgG that they ran. Did they run any of the other tests in the celiac panel?, like the tTG, EMA or DGP? When you have a test result that is borderline, it generally means that eventually it will become positive/higher, as yours did., Can you post all your tests/results with the ranges the lab used?

I used to get the "cramping but unable to go" too, along with the sweating, ringing in the ears, blurred vision also. I actually did pass out many times although if I was able to have a bowel movement I could often avert it. A doctor told me this was vaso-vagal syncope (fainting caused by pressure on the vagus nerve) from all the gas/bloating. It is disappointing that your doctor hasn't got back to you about your lab results. Maybe he figured since you were gluten free already that's all that was needed. He sounds like he doesn't know much about celiac if he still thinks it is a "rare" disease. Perhaps it is time for a change?

The prep for a colonoscopy is seldom pleasant although there are alternatives to Moviprep. You should talk to your doctor and see if you can find one that suits you better. I did not know enough to do that at the time I had mine. I would hope that if your doctor is going to do a colonoscopy that he would also do an endoscopy to check for celiac disease since both procedures can be done at once and it is celiac we are interested in ?? He needs to take biopsies in the endoscopy (at least 6-8 from different sites) for best chance of finding it as the damage is often patchy. You need to talk to him or another doctor about this, although if you have been gluten free for any length of time it may be too late for that as healing will have started to take place.

Ribbon-like stool is common when you have a lot of gas and bloating - there's not much room left down there for the intestines to expand against all that gas pressure ).

With your twitching muscles it sounds like you need more nutrients checked - low magnesium and potassium could be causing this. Your also need your Vitamin D checked, also your iron/ferritin and your thyroid function. These are all basic things that are affected by celiac disease.

I hope you are able to get some more help and answers soon

[stephanie88]

well i'm glad it's all basic stuff that is related to celiac disease. it's just all too much at once and worry-some. i would feel better knowing that i could blame celiac for everything instead of thinking theres a million things wrong with me! so when my dr ordered the celiac panel, my lab center didn't have exactly what he wanted. they called and he agreed to what they did have which on the lab results, it was "igg ab". negative was less than 11. borderline was from 11-17 and anything above 17 was positive. i know i should of had more testing, i guess i'm just scared to ask! i totally agree that he doesnt sound like he knows much about it. and i was also thinking that doing the endoscopy w/ the colonoscopy would be a great idea. especially since it was save me a copay. the hard part is going to be sticking it out with gluten until the 19th of september. i'm just so miserable. any idea exactly how much gluten i should be consuming? i never knew that once the results were borderline, it would eventually become positive. i wish i would have known this a year ago lol. so gas pressure is a common problem with celiac disease? i never considered myself to have alot of gas lol, but i guess i could have pressure and not know it? ohhh also.. i've noticed there have been times when i've felt nauseated until i was able to burp (usually have to drink coca cola to allow me to burp) and then i feel fine. i assume this could be a sign of gas pressure built up too?

Thank you all for responding though. it's very helpful and i feel better knowing i'm not the only one!

Can you give us some more information about your testing? When you talk about your IGG score, I assume it was AGA IgG that they ran. Did they run any of the other tests in the celiac panel?, like the tTG, EMA or DGP? When you have a test result that is borderline, it generally means that eventually it will become positive/higher, as yours did., Can you post all your tests/results with the ranges the lab used?

I used to get the "cramping but unable to go" too, along with the sweating, ringing in the ears, blurred vision also. I actually did pass out many times although if I was able to have a bowel movement I could often avert it. A doctor told me this was vaso-vagal syncope (fainting caused by pressure on the vagus nerve) from all the gas/bloating. It is disappointing that your doctor hasn't got back to you about your lab results. Maybe he figured since you were gluten free already that's all that was needed. He sounds like he doesn't know much about celiac if he still thinks it is a "rare" disease. Perhaps it is time for a change?

The prep for a colonoscopy is seldom pleasant although there are alternatives to Moviprep. You should talk to your doctor and see if you can find one that suits you better. I did not know enough to do that at the time I had mine. I would hope that if your doctor is going to do a colonoscopy that he would also do an endoscopy to check for celiac disease since both procedures can be done at once and it is celiac we are interested in ?? He needs to take biopsies in the endoscopy (at least 6-8 from different sites) for best chance of finding it as the damage is often patchy. You need to talk to him or another doctor about this, although if you have been gluten free for any length of time it may be too late for that as healing will have started to take place.

Ribbon-like stool is common when you have a lot of gas and bloating - there's not much room left down there for the intestines to expand against all that gas pressure ).

With your twitching muscles it sounds like you need more nutrients checked - low magnesium and potassium could be causing this. Your also need your Vitamin D checked, also your iron/ferritin and your thyroid function. These are all basic things that are affected by celiac disease.

I hope you are able to get some more help and answers soon

[love2travel]

well i'm glad it's all basic stuff that is related to celiac disease. it's just all too much at once and worry-some. i would feel better knowing that i could blame celiac for everything instead of thinking theres a million things wrong with me! so when my dr ordered the celiac panel, my lab center didn't have exactly what he wanted. they called and he agreed to what they did have which on the lab results, it was "igg ab". negative was less than 11. borderline was from 11-17 and anything above 17 was positive. i know i should of had more testing, i guess i'm just scared to ask! i totally agree that he doesnt sound like he knows much about it. and i was also thinking that doing the endoscopy w/ the colonoscopy would be a great idea. especially since it was save me a copay. the hard part is going to be sticking it out with gluten until the 19th of september. i'm just so miserable. any idea exactly how much gluten i should be consuming? i never knew that once the results were borderline, it would eventually become positive. i wish i would have known this a year ago lol. so gas pressure is a common problem with celiac disease? i never considered myself to have alot of gas lol, but i guess i could have pressure and not know it? ohhh also.. i've noticed there have been times when i've felt nauseated until i was able to burp (usually have to drink coca cola to allow me to burp) and then i feel fine. i assume this could be a sign of gas pressure built up too?

Thank you all for responding though. it's very helpful and i feel better knowing i'm not the only one!

You should be consuming the equivalent of 3-4 pieces of bread a day for about 3 months for best accuracy. I actually went nearly 4 months.

It is sad that no one has thought to inform you of such important details. I really hope it goes very well for you!