Do I Have It Or Not? Some Say Yes, Some Say No

[TimothyRyan]

jaime-

i did have a small bowel endoscopy done. (the pill camera). would'nt that have helped determine if i had gastroparesis? or no?

it said the test helps determine gastric emptying times and such.

in other news

my blood tests were fine. all vitamin levels good,no thyroid, sugar levels good. cholesterol good. only thing a little low was my vitamin D.

endo and colonoscopy showed only minor irritation so i have to wait till oct. 27th to see my doctor again, unless someone cancels. but i will bring up gastroparesis.

i wonder also if my stiff neck and back could be effecting my digestive nerves? my joints pop and muscles and bones are weak and stiff. i made an appointment with a nuerosurgeon. i also plan to see a cardiologist to check up on my heart.

i am getting desperate yet again...for some sort of legitimate answers. and i am trying in the meantime to focus on the fact that i seem to be having some good days here and there.

-Tim

[Jaimepsalm63]

Tim,

The EDG wouldn't do anything to show gastroparesis. That's a separate test. The test that shows that you can't have anything in your system for at least 8 hours and that includes brushing your teeth and sucking on a mint. They mean absolutely NOTHING in the stomach because that starts the muscles moving and gives a false result. An EDG won't show the "timing" of emptying.

I have all the same problems when I get a flare up for a long time that you are having.

Please talk to your GI again and tell him you want a Gastric emptying study done. You'll eat an egg that is radioactive and then lay on a "bed" for 90 minutes while they take pictures of your stomach and how long it takes to digest it.

The key is to make sure you don't put on chapstick or put anything in or around your mouth that will signal the brain to start moving the stomach muscles. This can make your "meal" go through on a normal time rate and you won't get any answers as to whether you have this or not.

Hope this helps a little.

[Jaimepsalm63]

Tim,

Also, the pill camera won't show the timing either because you may have had brushed your teeth or sucked on a cough drop with in the 8 hours before and that would've gotten the stomach moving....so not a controlled result to your test. The pill camera would've found anything wrong with the lining of the stomach and intestines, but not if your stomach is slow to digest.

[dksart]

Zoloft is what's killing your libido. I know this from experience! Most definitely!

Anxiety and depression are coming from being glutened. I totally agree with those who said to look for hidden gluten. Check shampoo, body wash, lotion, even your girlfriend's products as well as medications, supplements etc. Something is sneaking in.

Your symptoms sound like some of mine from getting 'poisoned' too. The muscle twitching took me a while to determine it was from gluten, that was a tough one.

Good luck with all of this, I know how frustrated you feel right now. It's all probably just the gluten. Breathe in...breathe out.

[TimothyRyan]

well, im 99 percent sure im not being glutened, and that something else is going on. ive been tested and no gluten is showing up, which should mean im clean.

anyway...

how would body wash gluten me anyway? or even my girlfriends products? i think this is not the case, i am very goo at this by now, been doing it for 7 years now. im by no means new to celiac disease.

and i went on zoloft after the fact, but im not on it anymore, ive been switched to lexapro.

the biggest problems are still the constant excessive excessive gas, and the excessive, long loud constant belching and strange bowel movements

i am looking for something other than celiac disease, in fact, all that diagnosis has done for me, is let doctors write me off like im not obeying my diet. I assure you all...I AM.

[ravenwoodglass]

well, im 99 percent sure im not being glutened, and that something else is going on. ive been tested and no gluten is showing up, which should mean im clean.

anyway...

how would body wash gluten me anyway? or even my girlfriends products? i think this is not the case, i am very goo at this by now, been doing it for 7 years now. im by no means new to celiac disease.

and i went on zoloft after the fact, but im not on it anymore, ive been switched to lexapro.

the biggest problems are still the constant excessive excessive gas, and the excessive, long loud constant belching and strange bowel movements

i am looking for something other than celiac disease, in fact, all that diagnosis has done for me, is let doctors write me off like im not obeying my diet. I assure you all...I AM.

Celiac is an autoimmune disease. It takes a very tiny amount to start the antibody reaction. The amount that will start an autoimmune reaction is a great deal less than would likely show on standard testing. When you shampoo or kiss a girlfreind with gluten lipstick or pick up something to eat with your hands after appling lotions you are getting enough to start the antibody cascade even if not serious gut issues. The fact that you still have excessive gas, your BM are not yet normal, you are still suffering from celiac related neuro issues, your depression, means your diet may be gluten free for the most part but you are not completely gluten free, yet. Your antibody reaction is still active because you are not avoiding nonfood related gluten.

[dksart]

I was recently experiencing gluten reactions that made me re-evaluate all of my supplements, vitamins, meds etc. and it turned out to be my husband's body wash. Yep.

[TimothyRyan]

still a mix of good weeks and bad weeks...the nuero symptoms are crazy sometimes!!!xanax helps a lot though...i cant tell if i am depressed, or if it all from something related to celiac. i still need to re-evaluate everything i guess.

also today i found out i have Osteopenia.... (results from a DXA scan) i am only 26 years old.

time to find a new job...my days of hard labor in the film industry seem to be over.

[nora-n]

Sorry you are still sick.

Just a thought, did you have thyroid tests, like TSH, ft4, ft3 and the thyroid antibodies? anxiety and stuff is typical for low thyroid. It can even cause gastroparesis.

You had low sodium, how about the adrenals? Low sodium is typical for low cortisol.

I have bloating and anxiety if my cortisol is low. You need the saliva tests for cortisol done, you test the levels several times during the day to see how the circadian rhythm is.

You could still have lyme, but you need the proper test done, the test from Igenex. Check the lyme thread here on the forum.

nora

[nora-n]

There is now a gastroparesis thread in the other food intolerance etc folder here.

[mltjq]

still a mix of good weeks and bad weeks...the nuero symptoms are crazy sometimes!!!xanax helps a lot though...i cant tell if i am depressed, or if it all from something related to celiac. i still need to re-evaluate everything i guess.

also today i found out i have Osteopenia.... (results from a DXA scan) i am only 26 years old.

time to find a new job...my days of hard labor in the film industry seem to be over.

someone mentioned adrenals and I was thinking cortisol too. The book Schwarzbein principle 2 is informative in this subject. I believe she's in LA too.

[Jaimepsalm63]

Hey Timothy,

Don't know if you're still on this thread or if you found the gastroparesis thread. I'm really going to push hard on you to get that gastroparesis test done. It's the stomach emptying test. I've been out of the loop here for a bit because of a flare up with the nasty thing myself....ugh. Anyway, if you could get that tested and let us know one way or the other for it so I'll stop harping on it. My poor husband tells me that it's always on my mind and I try to "pass it off" onto other people. I guess in a way he's right. After being misdiagnosed for so long, I don't want others to suffer like that.

I do hope they figure it out just so you know what you're dealing with and can move on.

As for the Osteopenia, my cousin (male) has that too. He said that with the right meds, it can reverse itself because it's in the beginnings of Osteoporosis. Good luck with that, and many prayers going your way.

Jaime

[formerglutenglutton]

Hi Timothy.

I am responding to your post because I too have experienced explosive belching, feeling full all of the time, stomach burning and distension, nausea, and depression. Everytime I ate, I experienced bloat and belching that would win any contest. Totally embarassing, depressing, and fatiguing.

I have tried over a period of time to eliminate so many foods from my diet; nothing helped. I went through a time believing I was allergic to EVERYTHING. Finally, I was tested for low stomach acid by my wonderful Seattle doctor. There is a test (check www.phcapsule.com to find a doc in your area) that will test for stomach acid level.

In lieu of gastroparesis (which is very rare) please consider the possibility of low stomach acid (hypochlorhydria) which is quite common. My doctor prescribed one 350 mg tablet of HCl with pepsin with each meal. The digestive distress (especially the belching) is so, so much relieved!!

I have been dx with gluten intolerance and will have further tests to rule in or rule out celiac disease.

Hope you feel better soon. Take good care!

[TimothyRyan]

yea, i am still on here Jamie. and still trying to figure it out. Gastroparesis, is on my list of possibilities still, don't worry, I have brought it up to my doctor. He is a really good UCLA doc, and I'm trying not to harp on him to hard, and let him do his thing. he has a great reputation...it is really really hard though to just wait it out when i feel like crap pretty much every other day. If i go 2 days in a row feeling great, it is amazing, and i start to think that im cured, than BAM....right back on my ass, fatigued, anxious, nervous, tired, not HUNGRY (but starving)...

Oesteopenia sucks. I am trying to decide still weather to take the Actenol (like Boniva) or just try and combat it with the bone density builder i have started taking.

i think even though my blood tests showed no malnurishment, or malabsorption, that this could be the problem. especially now with the osteopenia. and the constant light color of my bowel movements...both signs of malabsorbtion. and of course, the anxiety, and nuero symptoms.

some days i feel like im on the right track, some days i feel like im losing hope. and with my insurance, i am losing hope.

I also have a neck problem, and its very painful. waiting for an MRI approval from the insurance company. they are the devil. So many medical problems crashing down on me all at once...alot to deal with for a 26 year old who still feels like i should be 20.

Glad Obama won. Hopefully, all of us will have easier times in the future dealing with all of this because of him, and his plans for health care....

There is Hope for us in the future.. and our rare diseases.

[TimothyRyan]

heres some questions...has anyone ever had any luck with antibiotics getting rid of bad bacterias/candida/SIBO build up?

here's a gross question....when i poo, bubbles come bubbling up out of it in the toilet. like excess gas that i didn't get a chance to pass is releasing itself in the water. Anyone have any insight on this disgusting symptom?

that's my reason for asking about antibiotics. might be connected?

or obviously, it still could be the other things im still waiting to check for like gastroparesis, ect. ect.

i don't think it's refractory, just based on having good days, and feel like im digesting normal. and i still know for sure im gluten free...

this is just so crazy...im going through the same frusteration for months upon months, that i went through 6 years ago when first diagnosed. Almost had every medical test run on me, ever invented.

2 MRI's next week for other symptoms!! more blood work than i prolly even have in my body. what the F?

Tim

[Fiddle-Faddle]

Tim, might you have a candida (yeast) infection? That's what the bubbles make me think of, but I'm no expert. Antibiotics tend to make yeast infections worse, don't they? Probiotics combined with antifungals are usually used to combat yeast infections, aren't they? Or are probiotics delayed until the fungal infection is gone?

[ravenwoodglass]

Oesteopenia sucks. I am trying to decide still weather to take the Actenol (like Boniva) or just try and combat it with the bone density builder i have started taking.

Hi Tim, I don't know if you are aware of this but you can rebuild bone without stuff like Actenol or the like. Those drugs have some serious risks associated with them so make sure you get all the info you can before you diecide to take them. One of the biggest risks is death of the jaw bone. This is seen most often when we need to have extensive dental work done, something celiacs often need. There are other risks also.

One of the best ways to rebuild bone is weight bearing excercise and a diet rich in calcium and vit D. It is possible to reverse osteopenia that way and at your young age it would be better than the pills.

I wish I could help with your other issues but all I can do is hope that things improve soon for you.

[TimothyRyan]

yea i read that the jaw bone death doesnt happen very often and only in cases of taking the drug for like 10 years...i don't plan on taking it that long, more like only 1 year or so, just to jumpstart the bones...

[TimothyRyan]

UPDATE:::::

my doctor just called to inform me my breath test shows SIBO...(small bowel bacterial overgrowth) i think that might be why it seems gluten symtoms have returned, while still being gluten free...

i will start a new topic. SIBO.

TiM