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Newly Diagnosed And Shocked

jesimae

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jesimae Apprentice
jesimae
Posted

Hello, Everyone. Thhought I would introduce myself. I was just told about my diagnosis yesterday over the phone. Actually my blood test hasn't gotten back yet, but my biopsy was positive.

Over the last 6 mos I've lost 40 lbs without trying. I've had nausea, vomiting, diarrhea, seizures, black outs, abdominal pain (a horrible burning sensation all the way across from left to right just under my rib cage), . I have been checked for many different things, but here are the actual facts:

I had a positive ANA, but Lupus, etc was ruled out through other testing.

Being treated by a neuro with depakote to control seizures.

My pcp put me on 40 mg of Prilosec/day.

Had an EGD and colonoscopy last week. Had a reaction to the tape they used. Caused a raised itchy rash only where the tape was.

Colonoscopy was normal. EGD showed a lot of inflammation in my esophagus, stomach, and small bowel. No organisms. Doc dilated my esophagus and took several biopsies that came back positive for Celiac disease.

Well, that's the condensed version. Wondering if any of you know of Celiac's causing inflammation also in the stomach and small intestine, or of a positive ANA with Celiac's disease?

On a side note, I tried my first gluten-free cracker, slice of bread, and blueberry muffin. All were good :)

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Wolicki Enthusiast
Wolicki
Posted

Yes, I had positive ANA's and was diagnosed with lupus and treated with meds for 10 years when it was actually celiac. ANA'a are normal now. I had inflammtion of everything. 4 endos and 3 colonoscopies later, I was finally diagnosed through a blood test.

Welcome to the group! There is lots of good info and support here!

jesimae Apprentice
jesimae
Posted
  • Author

Thank you very much for your reply. Was sort of doubting my diagnosis and thinking it could be Crohn's instead. Maybe that's because I've been diagnosed with things before only to have the doctor change his/her mind.

Was also wondering if you have "flares" before diagnosis. Right now I'm asymptomatic and have been for a few weeks without any diet restriction. Is that typical with Celiac disease?

eatmeat4good Enthusiast
eatmeat4good
Posted

So glad you finally found out what was wrong.

Celiac can cause inflammation in all of the body, and it is not uncommon for ANA to be elevated.

It can have gastrointestinal, neurological and dermatological symptoms due to the antibodies that build up in one's system when they have Celiac.

You may find that your neurological symptoms are related to the Celiac. If so, they should improve greatly on being gluten free. The research shows there are actually white lesions on the brain of some people with Celiac and they are often misinterpreted and attributed to other disorders or illnesses.

Welcome to your new life and to being one of us. You should be feeling much better soon.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Welcome! I also had unexplained seizures and a positive ANA, but further testing ruled out lupus. It may take a few months for some of your neurological symptoms to resolve. It's best (IMO) if you eat as much whole unprocessed foods as possible to heal faster.

suziq0805 Enthusiast
suziq0805
Posted

So glad you finally found out what was wrong.

Celiac can cause inflammation in all of the body, and it is not uncommon for ANA to be elevated.

It can have gastrointestinal, neurological and dermatological symptoms due to the antibodies that build up in one's system when they have Celiac.

You may find that your neurological symptoms are related to the Celiac. If so, they should improve greatly on being gluten free. The research shows there are actually white lesions on the brain of some people with Celiac and they are often misinterpreted and attributed to other disorders or illnesses.

Welcome to your new life and to being one of us. You should be feeling much better soon.

Do you have any links to research about the elevated ANA correlating with celiac disease? We recently began to wonder if my son has celiac and when I began researching it I wondered if I could have it when I discovered it can cause muscle weakness and neurological symptoms. I went through years of pain that no doctor could figure out (not even Mayo Clinic). I had so many blood tests done- including Lupus. I did have an elevated ANA. But with further bloodwork they said that wasn't anything to worry about. I just decided that it must be an overuse injury from being a musician and that maybe my physical therapist was right when she said that my pain was caused by my body core being weak and not holding my muscles in place correctly, which was causing my problems. Since she was the only one who could ever give me any pain relief for any decent period of time I figured she must be right, but now after learning about celiac disease I wonder if it could be more, especially since I went through bouts of bad abdominal cramping as a teen. A couple weeks ago I went back through my medical records and found this..."the ANA screening test was positive, but the titer was less than 1:40". More labwork a couple years later says I have a low RDW result and a high monocytes percent..don't know what that means. I would love any info on elevated ANA and celiac disease though!

Takala Enthusiast
Takala
Posted

To the original poster:

Uhmm, if you feel asymptomatic, it's probably because all the medications you are taking are masking the symptoms/discomfort of the damage.

I have a type of auto immune arthritis that most of the time flares from cross contamination, (eating something I shouldn't have, accidentally) or over exercising. The exercise induced flares will go away normally after about 12 to 15 hours of rest. Low pressure systems of bad, cold wet weather in the fall also tend to set it off. But once in a while I get something that doesn't seem to be food related. I try not to take anything for it, my kidneys and liver are very sensitive, because this way I am over all healthier and am not causing myself more damage, I might take 1 ibuprofen a week which allows my bad knee to function well enough for strenuous type stuff. Most people with this are up to the gills in daily anti inflammatory meds at this point, but their overall quality of life is "meh," from what I've observed.

____________

to suziq0805,

RDW is red blood cell distribution width. Measures the size of the red blood cells, it's a test for anemia. A celiac will not be absorbing B12 vitamins properly nor other nutrients, so they will look at the blood's red blood cells quality, to try to see signs if the iron levels might be low or normal. (all this vitamin/mineral stuff interplays with each other to effect the blood)

Open Original Shared Link Initially celiacs and gluten intolerants may be anemic. Diet and supplements may make this go away.

monocytes are the white blood cells. A high level of monocytes means something is going on to get the body's immune system revved up a bit. The last time I was tested for this mine were slightly up. As I am one of the most notorious people in the world for being able to flunk any sort of blood test showing I have anything odd going on, this was almost as exciting as having a few antibodies to gluten, a tiny number, like wow, it wasn't zero.

Open Original Shared Link

I've also had lots of tests (negative, of course) for Lupus after being told it probably was that. Nope. They seemed to alternate between :huh: testing for Lupus and MS and Fibro/IAIYH/ Go Away We Don't Know/Neuro but Neurotic every time I tried getting this auto immune crap diagnosed, even tho I lucked out in my late twenties and had a DO correctly get the type of arthritis diagnosis dead on correct, then a PCP also sent me to PT. This is why I like nice, simple x rays, they can be awesomely bad enough to make people take things seriously. My eye doc and dentist acknowledge the dry mouth and eyes, the rheumatologist does the blood test and of course, being me, I don't have the "official" antibodies for the sjogren's, either. Of course then because I am youngish and female most subsequent docs in another state later can't wrap their minds around this and try to make it into "Fibro" because I am low medications, taking those vit/min supplements, and exercising regularly trying to keep my joints from freezing up, just as the initial docs told me to do. Alas that C reactive protein ( CRP test) stuff just wouldn't show up even on days I am so stiffened up I can't hardly move and have trouble walking.

After 2 decades of this merry go round I was definitely having neurological symptoms and lots of ataxia and visual problems, but couldn't get a blood test to show any elevated ANA. Going gluten free got rid of most of it. (I mean got rid of the ataxia, the numbness, not the blood tests. B) )

I tend to get a lot of tendonitis and it moves around a lot, I can somewhat compensate with my core muscles because I'm strong there, so keep up the exercises.

I haven't done the genetic screening yet, because I was waiting for the testing and human genome project and research to get along a bit further before somebody sticks me again and sends it off, because I am guessing that whatever genes I am stuck with might not be the common ones. See the HLA DQ 2 and DQ8 and DQ1 wikipedia entries, so different than even 5 years ago, now the researchers are saying gluten intolerance that is not full blown celiac is quite real, which is encouraging from a validation standpoint.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Be sure to keep in close contact with your neuro. I have also been on depakote to control seizures that were celiac related. Hopefully your doctor is doing the very frequent blood level checks that are needed. After you have healed a bit you may not need to drug and longer. However be sure you don't stop the drug suddenly talk to your doctor about how to taper off it. I have been able to drop all the many, many drugs I was on prediagnosis. I hope the same happens for you. Welcome to the board, read as much as you can and be very, very strict with the diet as many of us with neuro impact need to be very strict. I hope you heal quickly.

eatmeat4good Enthusiast
eatmeat4good
Posted

Do you have any links to research about the elevated ANA correlating with celiac disease? We recently began to wonder if my son has celiac and when I began researching it I wondered if I could have it when I discovered it can cause muscle weakness and neurological symptoms. I went through years of pain that no doctor could figure out (not even Mayo Clinic). I had so many blood tests done- including Lupus. I did have an elevated ANA. But with further bloodwork they said that wasn't anything to worry about. I just decided that it must be an overuse injury from being a musician and that maybe my physical therapist was right when she said that my pain was caused by my body core being weak and not holding my muscles in place correctly, which was causing my problems. Since she was the only one who could ever give me any pain relief for any decent period of time I figured she must be right, but now after learning about celiac disease I wonder if it could be more, especially since I went through bouts of bad abdominal cramping as a teen. A couple weeks ago I went back through my medical records and found this..."the ANA screening test was positive, but the titer was less than 1:40". More labwork a couple years later says I have a low RDW result and a high monocytes percent..don't know what that means. I would love any info on elevated ANA and celiac disease though!

I recently finished reading Peter Green's book entitled Celiac Disease, A Hidden Epidemic. In it he refers to inflammation in the body caused by Celiac disease showing up as positive ANA tests or other tests of inflammation in the body. It effects all systems in the body and therefore can elevate those numbers either significantly or slightly. I have found articles by googling Celiac disease that also refer to elevated ANA tests being an indicator to test for Celiac, unfortunately I just read them and didn't save them. I hope this helps.

jesimae Apprentice
jesimae
Posted
  • Author

Be sure to keep in close contact with your neuro. I have also been on depakote to control seizures that were celiac related. Hopefully your doctor is doing the very frequent blood level checks that are needed. After you have healed a bit you may not need to drug and longer. However be sure you don't stop the drug suddenly talk to your doctor about how to taper off it. I have been able to drop all the many, many drugs I was on prediagnosis. I hope the same happens for you. Welcome to the board, read as much as you can and be very, very strict with the diet as many of us with neuro impact need to be very strict. I hope you heal quickly.

How often are the blood draws supposed to be? I have to go for my first one since I started depakote on the 14th. I had the liver panel etc before I started, but I've been on the depakote for a month. He gave me an order for blood draws every month. That sound about right?

ravenwoodglass Mentor
ravenwoodglass
Posted

How often are the blood draws supposed to be? I have to go for my first one since I started depakote on the 14th. I had the liver panel etc before I started, but I've been on the depakote for a month. He gave me an order for blood draws every month. That sound about right?

Each person many be a bit different depending on the dosage. I was on a toxic level so I had them done weekly for the first couple months than bi-weekly after that. BUT as I said my dosage was literally at a toxic level and your dosage is quite likely much lower. I think for most the monthly levels would be the norm as long as your liver panels etc were good to begin with.

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