Not Sure If Its Celiac?

[Forrest]

Well i have been ill since last May with real bad gass and the big time D and bloating and some upper right side pain as well as hands falling asleep at night every night with pain in shoulders and numbness and always sleepy no energy i suffer from some type of rapid transit i know for sure!! but gi doc says diffrent i have had more tests then alot of people my gi doctor tells me he says i have ibs but i think diffrent for some reason the tests i have had are endoscopy and colonoscopy with biopys hidascan with cck stool studys ultrasounds of the stomach liver etc 10 liver fuction tests camera pill done cbc blood work biopys showed neg for celiac and everything else was normal but my white blood cells are always abnormal always hi but docs say thats just the the way i run my stool are almost bright yellow all the time he says it my ibs causing that well i just found out my sister kids tested postive for celiac blood test but she is still waiting for hers and to see who is caring the auto immmune gene i was just wandering should i take in good faith with my gi docotrs are saying with ibs and since my biopys where normal and same with the camera pill as well he said he is done doing testing for me and dx with ibs and axiety

[mouse]

No, I don't think you should accept the IBS diagnosis. Most of us on here, consider it a catch all phrase for they don't know what is wrong. Find a doctor who will do the COMPLETE Celiac panel. If you don't need an official diagnosis, then just go TOTALLY gluten free and see if you improve. I have to tell you that if you go gluten free and improve, then decide to be tested, you have to consume gluten again for 3 to 6 months. Many on this board were unable to go back to gluten as they got so sick. Good luck in whatever you decide.

[par18]

Well i have been ill since last May with real bad gass and the big time D and bloating and some upper right side pain as well as hands falling asleep at night every night with pain in shoulders and numbness and always sleepy no energy i suffer from some type of rapid transit i know for sure!! but gi doc says diffrent i have had more tests then alot of people my gi doctor tells me he says i have ibs but i think diffrent for some reason the tests i have had are endoscopy and colonoscopy with biopys hidascan with cck stool studys ultrasounds of the stomach liver etc 10 liver fuction tests camera pill done cbc blood work biopys showed neg for celiac and everything else was normal but my white blood cells are always abnormal always hi but docs say thats just the the way i run my stool are almost bright yellow all the time he says it my ibs causing that well i just found out my sister kids tested postive for celiac blood test but she is still waiting for hers and to see who is caring the auto immmune gene i was just wandering should i take in good faith with my gi docotrs are saying with ibs and since my biopys where normal and same with the camera pill as well he said he is done doing testing for me and dx with ibs and axiety

Just go on the diet and see what happens. If you don't like it or it does not help you can always stop. No cost either way.

Tom

[queenofhearts]

Oh yes, by all means go on the diet. I've had symptoms all my life but was told it was IBS until finally diagnosed this Spring. I wish I'd tried this 30 years ago!

Leah

[Forrest]

Oh yes, by all means go on the diet. I've had symptoms all my life but was told it was IBS until finally diagnosed this Spring. I wish I'd tried this 30 years ago!

Leah

WEll iam only 36 years old i started to have bowell problems ten years ago but didnt pay much mind to it tell last year i lost 25 pounds started to see blood in my stools and had bad nausea i was thinking my liver are gallbladder was going bad but my hidascan with cck and ultrasounds where very good as well my gi doctor did the camera pill he says is one of the best things out at seeing the hole small bowell and mine look very good nothing abnormal but man right when i wake in the morning i have to run to the bathroom so what does this diet made up of not eating any types of breads are cakes?So i know i dont have chrons are anything like that because of the camera pill was normal and more then one biopy was takin from my small bowell but i will try anything at this point to get to fill better one thin is my bowell problems dont bug me at night are while sleeping are any of my other symptoms so iam not sure if celiacs does the same are if everyone is diffrent iam just glad to find a sight like this i have been on a very well known ibs sight and i bet alot of then are suffering from celiac

[queenofhearts]

Nini has a great kit for newbies to help you figure out what you can & can't eat. You can get it from her website, Open Original Shared Link

There are so many forms of Celiac & gluten intolerance. There are some who only have neurological issues, some with skin conditions... it is truly a challenge to diagnose. The best way to find out if you have it is to go completely gluten-free & see how you feel. Your symptoms definitely sound like they may be related to gluten.

Good luck! If you like to cook I can direct you to some helpful gluten-free cookbooks, but there are also many readymade gluten-free items on the market, & most unprocessed foods are safe (veg, fruit, unflavored meats).

Leah

[Mayflowers]

then decide to be tested, you have to consume gluten again for 3 to 6 months. Many on this board were unable to go back to gluten as they got so sick. Good luck in whatever you decide.

If you get tested by Enterolab you do not have to go back to eating gluten. Good lord, you should be tested immediately by Enterolab. They are more reliable than any blood test or biopsy. I will not get a biopsy done! They detect gluten intolerance without eating gluten. Please, get tested. You sound pretty sick.

[bklynceliac]

Sounds familiar. I passed every test with flying colors - biopsy, blood panel, the only shibang. No celiac, no crohn's, no uc, no nothing. Basically, I was in perfect health - except for the being sick all the time. My GI gave me the "i guess it's IBS" too. I had been having success with the gluten free diet, and met with a different doctor who gave me great advice: screw what the other doctor's say, do what makes you feel better. So I've been on the diet for a few months now and am feeling much better. Not perfect, but better. It might be a coincidence, but I doubt it. I would say try gluten-free. It might sound hard, but honestly, nothing is harder than having to run to the bathroom all day. The diet is much better than the sickness, believe me.

[Forrest]

Well yes iam sooooo burned out on being sick all my doctors say its all in my head you suffer from health axiety and ibs iam like ya right i wasnt like this a year ago!!I have seen three gi doctors in the past year and all say the same thing ibs ibs but i have put some trust in my gi doctor that has done all my test and has worked with me for this hole year iam just happy right now that i havnt lost any more weight iam stable at 160-165 but did weigh 185 last may i happy with that weight of being 6ft and being male there are soooo many times i cry and cry over this with no true ansers i know deep down there isnt somthing right and my doctors think iam crazy put me on xanaxs to mask me of who i really am so here i walk around looking like the walking dead i even went as far being tested for hiv and hep a-b-c as well neg!!Well today i had four pieces of bread and i was like wow my stomach is going crazy gurgling and alot of gass i havnt had any wheat are glten anything in a week tell today as bang my stomach went crazy i would love to have the labs ran i have very good med insurance but none of my doctors will do anymore tests and i mean none so i have to live like this it would be nice to find where i can get the test done here in Portland Oregon if you can find some one in that area that does the lab testing i would really like the help!!!

[queenofhearts]

My kids used to tease me because I was always trying some new supplement, food, exercise... I kept thinking I must be missing something to feel so bad, & I was, but only because gluten was preventing all the healthy stuff from getting through. When I was diagnosed it all made sense. My son actually said the other day, "That's why you were always taking so many vitamins, isn't it?"

Just because you don't have the diagnosis doesn't mean you can't try it yourself. Forget the testing & just do it!

Leah

[Mayflowers]

i would love to have the labs ran i have very good med insurance but none of my doctors will do anymore tests and i mean none so i have to live like this it would be nice to find where i can get the test done here in Portland Oregon if you can find some one in that area that does the lab testing i would really like the help!!!

Hello? I'm sorry, I don't mean to be rude, but did I just mention Enterolab? For $99 you can know once and for all if you are gluten intolerant. Never mind your insurance and what the doctors are saying. Do it for yourself. I asked my doctor if he'd like the results and he was really interested and said "Yes!"

Queen, you sound just like me! I'm always fatigued and trying and taking vitamins to make myself feel better. Now I'm trying BeeAlive royal jelly. If I knew once and for all. Today is 2 weeks that I'm waiting for my Enterolab results..so far nothing today

[Forrest]

fatigued iam always!!!Every day I have to stop after work and get coffee just to make it home from work are i fall to sleep at the wheel even when i do get 8 hours of sleep a day and my gi doctor called me today and said there is know way you have celiac he said i was tested three times in three diffrent time periods i didnt even know he tested me three times Here is a link on Capsule endoscopy in celiac disease evaluation of diagnostic accuracy i had this test done last month all normal it times the trasit time of the small bowell and much more i have been doing alot of reading for over a year and have been going to ibs support groups but the more i read about celiac and my numbness and joint pain i have make me have second thoughts so where do i go to pay for that lab test?See i always thought my numbness and joint pain was from my type of work being a tile setter very hard on the body but check this link on the new capsule endoscopy and the dx for celiacs Open Original Shared Link And this site i have been on for almost a year and i bet half of them have celiac not ibs Open Original Shared Link

[Mayflowers]

are i fall to sleep at the wheel even when i do get 8 hours of sleep a day and my gi doctor called me today and said there is know way you have celiac he said

You meant "No way" right? Just go to www.enterolab.com and read the information from Dr. Fine. Biopsies are NOT conclusive. You just might not have damage yet. People on this forum have had evetensive blood work, biopsies, endoscopies, all negative and TOLD by their GI's that they didn't have gluten intolerance or celiac sprue.

They would then have a stool speciman tested by Enterolab and it would be POSITIVE for gluten intolerance.These people would then go on a gluten free diet and found RELIEF of their symptoms like nothing before. Don't take my word for it. READ the posts here. I won't say anything more on this.

[piperminted]

fatigued iam always!!!Every day I have to stop after work and get coffee just to make it home from work are i fall to sleep at the wheel even when i do get 8 hours of sleep a day and my gi doctor called me today and said there is know way you have celiac he said i was tested three times in three diffrent time periods i didnt even know he tested me three times Here is a link on Capsule endoscopy in celiac disease evaluation of diagnostic accuracy i had this test done last month all normal it times the trasit time of the small bowell and much more i have been doing alot of reading for over a year and have been going to ibs support groups but the more i read about celiac and my numbness and joint pain i have make me have second thoughts so where do i go to pay for that lab test?See i always thought my numbness and joint pain was from my type of work being a tile setter very hard on the body but check this link on the new capsule endoscopy and the dx for celiacs Open Original Shared Link And this site i have been on for almost a year and i bet half of them have celiac not ibs Open Original Shared Link

Have you considered being tested for a sleep disorder? Such fatigue and other symptoms can also be caused by sleep apnes.

[Forrest]

Have you considered being tested for a sleep disorder? Such fatigue and other symptoms can also be caused by sleep apnes.Yes i had the 24 hour sleep study done it didnt find no problems with apnea like i said i have had so many tests at first i thought it might be my liver are somthing like that but labs alway normal so far iam just a nut with health axiety and ibs thats what somes it up from my gi doctor to my nero doctor and pcp but iam going to get this test on line because last night i ate pizza and bang it hit me like a tun of bricks bad gassy cramping and then right to the bathroom but what was crazy it wasnt D just alot of gas i can do just fine at work then once i get in the car driving home i get very sleepy and then when i get home no energy i even feel asleep waiting for the pizza guy yesterday sike doc says i have o.c.d and axiety well heck yes i do when you dont fill right!!I have never had a ruff life like drugs and other things i was good to my body i was a big time out door type person that even race stock cars i dont even have the drive to do that any more!So if my gi isnt going to do anymore test i guess i have to do them on my own!!

[Guest nini]

just try the diet... go to my website and download the Newbie Survival Kit at the bottom of my webpage (the link is in my signature) give it a good 6 months before you decide if it's helping, you DO NOT need a Dr.s permission to try the diet, do not accept IBS as a diagnosis, it's just a compilation of SYMPTOMS not a definitive dx. If you have to have some sort of proof, a lot of people swear by Enterolab, but my opinion is "why wait" go gluten free today and see if it helps.

Just because you were negative for Celiac it doesn't mean you aren't gluten intolerant. And gluten intolerance will only show up in Enterolabs testing. Or by positive dietary response. From everything I've read and researched about this, Celiac is only the tip of the iceberg where gluten intolerance is concerned. There are many other manifestations of gluten intolerance that don't neccesarily result in damaged villi. You mentioned anxiety and depression, well, neurological and psychological manifestations are another major component of gluten intolerance.

So, bottom line, do not accept IBS as a dx, and try the diet.It's that simple.