Can It Still Be Celiacs?

[smpalesh]

I have had symptoms of celiacs for years. I was told I have IBS 8 years ago after having my gallbladder out at the age of 25. Lot of other symptoms too including a random weird rash on my knees and arms that is insanely itchy. Honestly too tired right now to type the other symptoms out. Anyways while I never feel good I am usually able to function. All of a sudden about 2 weeks ago I am really, really sick with all my symptoms so much worse. As in I am not even able to function. The dr I saw in the ER on friday (not the one who is testing me for celiac) said that it couldn't be celiac bc I wouldn't have gotten so much sicker so quickly, that it is a gradual thing. So can celiac symptoms just suddenly get worse or should I be thinking it is likely not celiac do to the suddenness of the symptom increase?

[smpalesh]

I wanted to add (in case body trauma affects things) that I had surgery at the end of June (tummy tuck) and have felt increasingly sick since then culminating in my recent severe symptoms. Is there any chance the surgery kicked things into high gear?

I have had symptoms of celiacs for years. I was told I have IBS 8 years ago after having my gallbladder out at the age of 25. Lot of other symptoms too including a random weird rash on my knees and arms that is insanely itchy. Honestly too tired right now to type the other symptoms out. Anyways while I never feel good I am usually able to function. All of a sudden about 2 weeks ago I am really, really sick with all my symptoms so much worse. As in I am not even able to function. The dr I saw in the ER on friday (not the one who is testing me for celiac) said that it couldn't be celiac bc I wouldn't have gotten so much sicker so quickly, that it is a gradual thing. So can celiac symptoms just suddenly get worse or should I be thinking it is likely not celiac do to the suddenness of the symptom increase?

[GottaSki]

Having symptoms worsen over more than 8 years is not sudden - even if those same symptoms are suddenly much worse - your body may simply have had enough. Do not dismiss Celiac Disease because an ER Doc told you he doubts it is Celiac - wait for the Celiac tests and if they happen to be negative, remove all gluten for at least three months. It is possible to have very serious symptoms with Non-Celiac Gluten Intolerance &/or it is possible to have false negative tests.

If you have many symptoms of Celiac - do not dismiss it - no matter whom tells you that it is not possible. Celiac Disease presents in hundreds of ways - unfortunately many docs have no knowledge of most of the symptoms.

If your doctors haven't ruled out other things, make sure you have been tested for thyroid (free T3 and free T4 - not just TSH) and tests for autoimmune/inflammation (ESR or SED, CRP, RF and ANA). Celiac Disease is an autoimmune disease that left undiagnosed can cause other autoimmune conditions.

First and foremost - listen to your body, then consider the input of doctors - after all they are just "practicing" medicine

Good Luck to you - I hope you feel better very soon.

[GottaSki]

I wanted to add (in case body trauma affects things) that I had surgery at the end of June (tummy tuck) and have felt increasingly sick since then culminating in my recent severe symptoms. Is there any chance the surgery kicked things into high gear?

Yes surgery can cause symptoms to worsen. And tummy tuck? Don't mean to be nosy, but was this because you have a swollen tummy that you can't get rid of with diet/exercise?

[shadowicewolf]

Yes. I was like you and had symptoms for years, the "D" and whatnot. Then the march of 2011 i got the flu really bad, then had an allergic reaction to a medication a week later, then had persistand vomiting and "D". Was told many times that it was psychological and that there was nothing wrong with me and that i should be so babyish (i kid not).

I eventually got seen by a nurse pratitioner and she decided to test me for celiac just to see. It came back with a positive IGA TTG blood test (the others were on the higher side of normal). I then went to a GI doctor who scoped me and found "no damage". Though this was 4 weeks after i went gluten free. He wouldn't believe it. Then i had a genetic test done and came back positive for both. He never did say wether or not i did have it, but the other two doctors i spoke two agreed that yes, i do have it because of this and my positive reaction to the diet.

It does not come on suddenly, that is correct in some cases. However, at this point in time, i'm willing to say you probably have some sort of issue with wheat filled stuffs.

Just remember to stay on a gluteny diet until you are done with all testing.

[IrishHeart]

My symptoms certainly became worse and much more serious over the years (not sure what the ER doctor is talking about) and they became debilitating and I was dying a slow death.

I look at my progression of symptoms as being directly related to various traumas (several surgeries, including the gall bladder when I was 26, multiple miscarriages, viral pneumonia, major stress, car accident) and a regime of antibiotics in 1999 to treat a "possible giarrdia infection" (it wasn't --it was CELIAC ).

My father's death in Feb. 2008 --after years of mysterious illness and blood transfusions for anemia (which was likely unDxed celiac)-- was the final blow for me. I went downhill for 3 more years until I figured it out myself and had a doctor finally see it too.

Most doctors are not very well- versed in celiac disease, hon.

You cannot believe some of the things we have heard them say about it.

I hope the doctor who is testing you is wiser than this ER doctor is. Best wishes to you.

[smpalesh]

Well I do have that issue but that was not the reason for the tummy tuck. I have had 3 children all by c-section and then lost 45 lbs (on purpose!) so I had a large overhang of skin at the bottom and I had also had a huge diastasis (stomach muscle separation) that can only be closed through surgery that caused a huge bulge over my belly button. I look way better after the surgery but still having huge belly bloat.

Yes surgery can cause symptoms to worsen. And tummy tuck? Don't mean to be nosy, but was this because you have a swollen tummy that you can't get rid of with diet/exercise?

[smpalesh]

Well I am definitely starting to be convinced it is celiacs. I am still eating gluten food so the tests remain accurate. More so than I normally do actually bc I am too tired to cook anything and my hubby has been busy running the kids around to all their lessons. He was making the kids grilled cheese sandwiches for lunch so I asked him to just make me one quickly and about an hour after I ate it my stomach started hurting way worse and gurgling and cramping and I started feeling really, really, really tired and almost drugged like I couldn't keep my eyes open. I went to lay down and hovered in and out of sleep for the last hour and a half and now I am up bc I have a paper to write (I am a grad student - not good timing!). So does that reaction to the sandwich sound like a gluten reaction?

[GottaSki]

I look way better after the surgery but still having huge belly bloat.

That's what I was wondering, don't dismiss Celiac Disease or NCGI.

[bartfull]

The young lady with celiac that I met last week experienced something similar. She had always had mild symptoms and thought it was normal. Then one day she got such serious D and vomiting which wouldn't stop that she was hospitalized. She didn't even have the strength to hang her head for the vomiting so someone had to hold her head so she wouldn't choke. Eventually even the heaving became so weak they had to aspirate (I believe that is the word - they had to suction the vomit out of her throat.) She nearly died.

So yeah, slow progression of mild symptoms followed by a sudden onset of very severe ones is not unheard of.

[IrishHeart]

my stomach started hurting way worse and gurgling and cramping and I started feeling really, really, really tired and almost drugged like I couldn't keep my eyes open. I went to lay down and hovered in and out of sleep for the last hour and a half and now I am up bc I have a paper to write (I am a grad student - not good timing!). So does that reaction to the sandwich sound like a gluten reaction?

It does to me!!!!!!!

[smpalesh]

Thanks for responding. I have decided to avoid gluten for the rest of today at least in the hopes I might get some sleep tonight. Tomorrow is back to all my responsibilities - no more laying in bed all day! I still feel terrible. I hope the test results come back soon and that if I do have celiac I am one of the people who the tTG is accurate.

It does to me!!!!!!!

[IrishHeart]

Thanks for responding. I have decided to avoid gluten for the rest of today at least in the hopes I might get some sleep tonight. Tomorrow is back to all my responsibilities - no more laying in bed all day! I still feel terrible. I hope the test results come back soon and that if I do have celiac I am one of the people who the tTG is accurate.

honey, we are here for you! please, keep us posted.

[shadowicewolf]

Trust us, we've all been there and such.

[smpalesh]

Quick question - when you are having major issues with celiac do you have gastrointestinal issues even after eating a gluten free meal? I just had supper of peas, corn, and roasted potatoes and 15 minutes later I'm in the bathroom with explosive diarrhea (sorry to be so graphic). Is it normal to basically react to everything when you are in the midst of severe symptoms?

[IrishHeart]

Quick question - when you are having major issues with celiac do you have gastrointestinal issues even after eating a gluten free meal? I just had supper of peas, corn, and roasted potatoes and 15 minutes later I'm in the bathroom with explosive diarrhea (sorry to be so graphic). Is it normal to basically react to everything when you are in the midst of severe symptoms?

Yes, honey. I felt like sh*t every day for years.

Just because you are eating a gluten-free meal right now, you have not HEALED. It takes a long time to heal a ravaged gut from celiac.

[shadowicewolf]

Yes, it is. I've been having issues with spinage for the past couple of days. Regardless of what i eat, my body hates me for it.

As for gluten, if your body is healing, the smallest thing could set it off. Thats why its generally adivsed to stay away from corn and dairy just to give your body a break.

In the meantime, if you are going through that, perhaps its best to eat basic things, nothing to much.

[GottaSki]

Quick question - when you are having major issues with celiac do you have gastrointestinal issues even after eating a gluten free meal? I just had supper of peas, corn, and roasted potatoes and 15 minutes later I'm in the bathroom with explosive diarrhea (sorry to be so graphic). Is it normal to basically react to everything when you are in the midst of severe symptoms?

Yes

Even when you go completely gluten-free it will take time to rid yourself of these symptoms.

[bartfull]

Yes, it is normal. Sorry. Until you heal you will most likely react to lots of different foods. Many of us had to reduce our diets to just a few very bland foods at first. It'll get better, I promise.

[gatita]

The young lady with celiac that I met last week experienced something similar. She had always had mild symptoms and thought it was normal. Then one day she got such serious D and vomiting which wouldn't stop that she was hospitalized.

Yup, that's my story, too. I can pinpoint the exact date last June that it suddenly came on. Was eating wheat one day and couldn't go near it the next.