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

[gfpaperdoll]

Have a baked sweet potato, some well cooked white rice & some steamed broccoli.

applesauce, tuna mixed in with the rice is good. I would skip all gluten-free processed foods like bread & that canned chicken soup. Make yourself some chicken soup by boiling a chicken breast till it falls apart & adding some carrots & cabbage - nothing else, maybe a little salt...

& definitely no dairy or soy. skip any citrus for now... & no tomatoes since you think you react to them (nightshade veggie, anyway...)

how about bananas, dates, walnuts, jicama, cooked kale, baked apple (peeled), pears - plain or baked,

if you can tolerate corn - grits for breakfast & some cooked fruit, scrambled egge, boiled eggs, some cooked meat, maybe candian bacon, (I do not use Quaker Brand Grits or Quaker brand anything...)

you could also be reacting to chicken. I know several people that are allergic to chicken. My son is highly allergic to turkey but can eat chicken... new food allergies/intolerances can crop up at anytime...

good luck, let us know how the tests go.

[Jaimepsalm63]

Get a diagnosis of gastroparesis then worry about the diet thing, unless you are desperate.

If you are in dire need....here is a good start:

No dairy

No fiber (it slows the digestion system down in the stomach even though it helps with the intestines)

Try:

Bananas mashed

applesauce

Rice in a "soupy" fashion

meats are fine if they are shredded really well (red meat is harder than chicken and turkey)

potatoes in mashed form NO SKIN

soups

puddings (there are some out there that are dairy free)

scrambled eggs if you can eat eggs (no milk added)

carrots (I used to use baby foods before I was forced onto liquids)

I would see a doctor about this though before doing anything. A diagnosis is easier during a "flare up". It was frustrating when I wasn't having a flare up and had to do the test twice before they saw it. Now it's just there, before it was intermittent.

Get tested for allergies! You never know until you get the test done.

Let us know how things are after your tests.

Blessings,

Jaime

[Fiddle-Faddle]

Get tested for allergies! You never know until you get the test done.

Blessings,

Jaime

Unfortunately, allergy testing does NOT cover food intolerances, nor does it cover autoimmune disorders triggered by proteins such as gluten or casein. Allergy testing only tests for...allergies. If you have celiac disease, you are probably not allergic to wheat, and will test negative for wheat allergy. But eating wheat would be disastrous nonetheless.

There are some who are both allergic to wheat AND have celiac disease, but most of us here (at least in the 2 1/2 years I've been on this board) have NOT been helped by allergy testing.

[Jaimepsalm63]

Agreed Fiddle-Faddle. I was just making sure that someone wasn't going to come back at me and say that timothy needed to consult a doctor and my answer was lacking and dangerous.

I'm not allergic to wheat, but very sensitive to gluten even the most minute crumb. I'm sensitive to casein, but not "allergic" to milk.

I guess I'm used to trying to "cover my buns" and don't want someone here to take anyone's advice without discussing it with some type of practitioner, that's all.

Just throwing out ideas to help, but you know the rest.

This lack of sleep is making me ramble....sorry

[Fiddle-Faddle]

No worries, Jaime--I just wanted to make sure that any newbie reading this thread wouldn't get confused and think that all they needed was an allergy test!

[veggienft]

I chimed in earlier and told you there was something else going on. Now reading your subsequent

posts, I can guess with fairly good accuracy what's going on. You need to stop eating sugar.

Let me repeat. Stop eating sugar.

When you contract a viral or a bacterial infection, it has one genetically preprogrammed method

of gaining a foothold in your body. That's not true of fungi. Fungal colonies consist of fungi with

literally hundreds of individual genetic signatures. Fungi cells from one species exploit different

body system weaknesses in different ways. The fungi cells which are successful at exploiting

chemical processes then propagate new colonies which replicate those traits.

Open Original Shared Link

Fungal colonies spin off cells which randomly mimic wheat gluten. The gut's immune system

creates antibodies to attack these fungi, and attack the compromised intestinal lining. But because

the immune system sees gluten as fungus, the immune system responds in the same way to

gluten. At the same time the gut recognizes that it's incapable of handling the gluten flood, and

produces a cytokine called zonulin.

Zonulin makes the intestinal walls permeable, and passes the gut's contents into the bloodstream

.......including the zonulin, along with fungus, viruses, bacteria, and the glycoproteins from wheat

and other sources. In the bloodstream, zonulin makes the blood-brain barrier permeable. It opens

the central nervous system to opioid attack and subsequently to autoimmune attack.

And it all starts with an ongoing sugar-fed fungal attack. You got rid of the gluten, but gluten is just

one of many glycoproteins which fungus can mimic, just one of many glycoproteins which can act

as invading opioids. The problem is the sugar-fed fungus.

And your answer? .......Somebody else please co-miserate with me.

You need a change. Spend some time viewing Doug Kaufmann's shows:

Open Original Shared Link

You have to forward through a bunch of commercialism, but the guy keeps the focus where it

belongs, on sugar-caused fungus.

Stop avoiding it. Stop eating sugar. You'll probably have to drop most fruit also.

And no. You don't need a dietician's opinion or a doctor's opinion to stop eating sugar.

Stop eating sugar.

..

[Rya]

I would double check your medications & everything that you are eating, sounds like some gluten is slipping in. Also get some blood work done for vitamin & mineral levels. Sounds like you have something not in balance. Start taking B12 regardless of the level that you test - most of us think the standard is too low anyway. take a sublingual for best results... & you might also need vitamin D, a lot of us are low in D...

I think someone did mention to go back to just plain whole foods & cut out the manufactured stuff. All that stuff gives me cross contamination, it is awful, but I just gave it all up & really do not miss it. I know people that can eat the Diamond Nut thins, the Mary's gone Crackers, etc etc. but not me.

I stick to Mission Brand Corn Chips & Mission Brand White Corn Tortillas - no CC there!! (I should be paid for all the business I send their way!!)

A-men for Mission Brand - I'll buy stock with you!

I agree with gfpaperdoll - this sounds like you may be having some vitamin/mineral deficiencies. However, those usually occur secondary to something else... While your symptoms may be the result of a glutening, or several, it sounds like you have had something going on for a long time. 25 year old men don't lose their libido overnight, yes?

Personally, I would figure out what is making you sick before you start cutting major food groups out of your diet. Back to a much earlier post, pencil-thin stools are generally indicative of some kind of obstruction. It could explain the majority of your symptoms. Until you get a physician's opinion, I would just eat what makes you feel OK and avoid what makes you feel worse.

Someone else has already said this, but journaling what you eat and at what time, and how you feel afterward would be a good idea.

[TimothyRyan]

So i had my Colonoscopy/Endoscopy, and i have some answers....

first i wanna say that i am not anemic, and my Vitamin levels are fine. the only thing a little low is my sodium.

also, the whole sugar post seems a bit off base. especially since i am not really a sugar junkie to begin with, and have always been pretty healthy and never once in my life overweight. (not that this means anything)

anyways: the colonoscopy.

nothing found..good news.

edoscopy: the small intestines looks good BUT the doc took 4 samples for biopsys from abnormalities/inflamations within my stomache/ or stomache lining.

this leads my hypothesis to believe something like Gastritis/Ulcers...ect, ect.

i think this could possibly explain everything from the burping and fullness/nausea/bloating, to the weird bowel movements and inflamation of the colon... (and of course, just the general excessive amounts of gas all over the board!)

but either way, i'll know more in 2-3 weeks.

thanks for all the support/help/opinions. i actually feel a bit better today! i have an appetite.

-T

[happygirl]

Thanks, T.R. for the update. I'm glad that your procedure went smoothly today. I hope the biopsies provide you with some much needed insight ---- good luck!

[Jaimepsalm63]

Thanks for the update! I'm praying for ulcers. I know that sounds mean, but they can be taken care of easily! Let us know what's up when you got the results.

Blessings,

Jaime

[TimothyRyan]

besides ulcers or gastritis, im having a hard time figuring out what else it could be though?

[Jaimepsalm63]

Again I'll add my 2 cents for what they're worth. I was having similar problems and found after two tests being performed that I had gastroparesis. The first test was done and said everything was in normal limits, but this was at a stage when I was having flare ups and would feel horrible during them and fine when I wasn't. The second test was during one of my flare ups and caught it. Now, I'm at the stage of a constant flare up...so that's where I am.

I'm hoping for your sake it is as easy as an ulcer or gastritis. Even allergies to certain foods is better than what I have to go through. They say it gets progressively worse over time. Some are in the stages faster than others.

If you do get tested for it and you do indeed have it, you'll have someone who can lead you through it a bit. Maybe, if you do have it you'll be at a slower progression than others I know and myself.

Take Care and Blessings,

Jaime

[TimothyRyan]

i wsa just reading over my old medical records from 6 years ago, and apparently, they had diagnosed me with duodenitis as well...I NEVER KNEW! i might have been treated for it then, but no heads up, and that is probably what is causing all this, a lack of my knowing and preventing it from coming back....

all i know is they're testing the stomache biopsys.

[TimothyRyan]

so i talked to my Gastro's nurse today on the phone, she said my endoscopy results are positive for gastritis.

so in addition to celiac, i guess i have "mild gastritis"

i see the doc on monday for hopefully some medicine and a plan of attack. i feel like im getting closer to a healing process at least....

but mild gastrits doesnt seem mild to me!!!!

anyway, i am fairly certain this is not due to eating gluten, which i have eliminated from my diet 6 years ago. i am going to start eliminating other foods, and try and self test for intolerances,

and also, get either an Lame Advertisement or an ELISA food intolerance test for IgG, because i have a sneaking suspicion that that is what might be going on here.

any other ideas on some causes of gastritis this late into a gluten free diet? any other autoimmune's i could have developed?

eating really really light foods till this is figured out.

thanks. write more soon.

-TIM

[ravenwoodglass]

so i talked to my Gastro's nurse today on the phone, she said my endoscopy results are positive for gastritis.

so in addition to celiac, i guess i have "mild gastritis"

i see the doc on monday for hopefully some medicine and a plan of attack. i feel like im getting closer to a healing process at least....

but mild gastrits doesnt seem mild to me!!!!

anyway, i am fairly certain this is not due to eating gluten, which i have eliminated from my diet 6 years ago. i am going to start eliminating other foods, and try and self test for intolerances,

and also, get either an Lame Advertisement or an ELISA food intolerance test for IgG, because i have a sneaking suspicion that that is what might be going on here.

any other ideas on some causes of gastritis this late into a gluten free diet? any other autoimmune's i could have developed?

eating really really light foods till this is figured out.

thanks. write more soon.

-TIM

Soy does it to me. The pain is awful but luckily Pepto Bismal helps for me. The GI gave me a handful of different meds to try after he found it. I had an enterolab test for soy casien and eggs done around the same time. Once I got enterolabs results I cut out the soy and the problem was gone. A lot of us do develop problems with it. The first things I would eliminate are soy and dairy (if you haven't done dairy already).

[TimothyRyan]

hey everyone. quick little update. IM seeing my NEW GI doctor tomarrow FINALLY, at UCLA who takes special interest in patients with Celiac, so im kind of excited about that...

In other news, i was wondering if others have had problems with INSURANCE companys investigating them and looking for reasons to drop you of coverage, that is what seems to be going on with me right now, and i think its because ive been seeing so many doctors lately. dont know what to do.

just add that to my list of frusteration. I'm still having bad days too, and missing work. some good days though have been jumbled in the clump of BAD ones. tomarrow and the new doc is all ive looked forward to in sooooo long.

heres what i know so far; (besides being Celiac)

Hiatal Hernia

Mild Gastritis

Tortuous Colon (and mildly inflamed)

inflamation of the ilieum

What does this sound like to all of you? and because of the length of my come and go symptoms, i feel like it matches with Chrons, or even Small intestinal Bacteria Overgrowth or I DONT KNOW!!!!!

Im still on Lexapro, and xanax for the anxiety, and the constant worrying that i go through....I've become such a home body this year too....it's annoying the hell outta me. sometimes i just break down in tears in front of my loving Girlfriend, which makes me feel pathetic for a 26 year old young man.

trying to stay strong though, even being broke, and investigated by insurance....thanks for all your support on this page.....

[mftnchn]

Timothy,

I just read through this thread and want to wish you well with your appointment tomorrow.

Gastritis/ulcers are usually caused by h pylori infection, and I have read the celiacs are less resistant to this. I had a case of it for 2 years before it was diagnosed and I was miserable. That was before gluten-free for me though.

I think it might take some time to figure this out, and I think having the docs check things, treat what they find, and rule things out is an important step. After that, you may need to do some of the other things suggested on the thread.

I am assuming you have eliminated gluten in your personal care products?

I agree that you may have some other intolerances and unfortunately the only way to figure that out is trial and error--elimination diet testing. Testing can be helpful but it isn't as accurate.

I didn't recover fully with gluten-free, even with casein and soy free. I didn't have the same symptoms as you, but since we all vary that doesn't tell us much. Anyway, what I discovered is that the damage to the villi caused me to not make enzymes to digest carbs (the lactose problem is more familiar to us, but there are other carb digestive enzymes also produced in the villi). I have responded very well, much to my surprise, to the specific carbohydrate diet that removed the types of carbs that I couldn't digest. Digestive enzymes for carbs helped but not very much. This was discovered through a stool test that checked for residues, and found I was excreting excessive amounts of sugar. This shouldn't happen, it should be absorbed high in the gut. So it was feeding a lot of bad bacteria and parasites. I know because I passed a bunch after going on the diet. The diet helps you know what to start with that is easier to digest. The main book to read is Breaking the Vicious Cycle, you might be able to find a copy in your local library to scan and see if it fits for you.

A parasite infection could be a problem for you too, but these are very hard to pick up on testing.

[TimothyRyan]

well more info...

apparently, back in the day, 6 years ago, my IGA blood test (or IG whatever the one that reads for celiac is)

read a plus 58.

okay, not sure what that means. but get this, there was no follow up biopsy, and i was put on a gluten free diet right away. 6 years later, i am still Gluten free. so no follow biopsy means no confirmed diagnois....what the hell?

what else could a plus 58 mean? has anyone ever been told they had celiac to later find out they dont have it? what was it instead?

my new doc, is great. so i'll talk to him too, but i wanted all your advice still. and im doing blood tests tommarow...

but the last thing i want to have to go through is a gluten eating challenge to see if i have celiac for sure.

im gonna work to find out what IS the problem for SURE...cause either way, celiac or not celiac, something else is what has me sick, im pretty sure of it now.

[mftnchn]

Timothy, I think a positive ttg is pretty conclusive--and more doctors are considering it so even though the "gold standard" hasn't changed (positive biopsy).

A positive anti-gliadin isn't quite so conclusive--as it can be an allergic response to the gluten. Someone please correct me if I am wrong about this.

Not sure about the EMA--I've read but don't remember.

So you might ask for sure what the positive test was.

After being gluten free this long it would be extremely rare to have positive blood results or positive biopsy. And you would likely need to eat gluten for months to get the positives. Is that worth it? The other problem is that if you are celiac and eat gluten for months, this impacts your whole body and your health and increases the chances of cancer, autoimmune problems, etc. So I think you should consider very carefully.

There is a new procedure available--maybe you can try for this, or ask the GI anyway. They place an amount of gluten in the colon, then you go back and they take a biopsy or sample from that place and look for a response. It may still be experimental, but you can at least ask??

Thing is, if you have an allergic response to gluten, the practical result is the same, you can't eat it.

There sure could be other things going on though to explain the symptoms and very much hope the docs figure it out.

[mslee]

Hi

I have alot of the same symptoms as you do.

I am finding I am VERY sensitive to cross contamination, many foods say gluten free but somewhere in small print will say "processed on machinery that also processes wheat, soy, tree nuts etc"

New to this but I've tested it and soy and dairy are def. no-nos! (feeling the results big time today!)

Dairy is probably temporary, the Soy seems just as bad if not worse than gluten.

Spicy or acidic gives me heart burn, I've been living off of rice, chicken breast, fruit,veggies, applesauce, nuts, tuna, carrots, polenta, & broth. Basically very very bland food until I heal. I screwed up a couple of times and tested it, it's too soon to do that I have learned.

Whole foods made from scratch will be your best bet. (it is not easy I know!) get rid of anything containing MSG that stuff is no good, taking it out of my diet has help some of the neuro symptoms. replace with herbs.

oooo I just found Larabars, they are satisfying and yummy! (found at whole foods)

I am waiting for lab results, testing for malnutrition/vitamin deficiencies to come back , waiting on my follow up liver biopsy apt...what they have told me so far is that the celiac caused my other autoimmune issues... but that too I am waiting to talk to more Dr.'s about.

waiting, waiting, waiting, jumping through hoops, making phone calls, getting stuck with needles, talking to some real jerks, waiting, and waiting for the insurance company to tell me they wont pay for anymore tests.

Lyme is a whole other issue, Thyroid is another issue, Yeast overgrowth can be another, most of your neurological/anxiety issues are probably from consuming something you shouldn't be. Did they check your B 12??? (I have heard that's a big one for muscular problems) This board has been a huge help!

hang in there!

good luck!

[TimothyRyan]

it says TTG, AB, IGA is 58.

So does that mean a TTG and an IGA are the same thing? man... i should have paid closer attention 6 years ago, and not just "listened" to the doctors....

most of the pain, and nuero symptoms have gone away for now in the past week or 2. i stopped taking protonix, don't think it's doing anything.

my biggest symptoms now are the constant belching, and excessive gas...really really excessive. it's annoying.

i think a stool test might be next. and maybe check for bacteria/parasites ect.

I've been downing Gaviscon extra strength lately too. seems to help after meals...

Blood test results soon, for near everything. They took 9 vials last week, and i almost pasted out. i had to lay down for like half hour...

still underweight, but started eating regularly again, and taking whey protein (gluten free of course) to put some punds back on. Im like 138 right now, and six feet tall...its gross.

talk more soon.

Tim

[happygirl]

it says TTG, AB, IGA is 58.

So does that mean a TTG and an IGA are the same thing? man... i should have paid closer attention 6 years ago, and not just "listened" to the doctors....

The test you had run was the tTG IgA test. The tTG can be run via IgA antibodies or IgG antibodies.

[TimothyRyan]

okay so does that mean even if they went in for a biopsy from an endoscopy, and it came back negative for celiac, it would be invalid because of the gluten free diet? or is the biopsy conclusive either way? or only conclusive if on a diet containing gluten?

here are some updates. all my vitamin levels, b12, Vitamin D, everything that i was tested for came back fine. so im not aneimic or malnurished. which is good.

also.... the endo tested for bacteria, and celiac which both came back negative. but it didnt get deep enough into my small intestines...so i think that nulifies this.

i have a new doc now though, and he knows his stuff. hes just soooo sought after i have to wait for ever for appointments. eek.

so i think next im gonna check for parasites, SIBO, other allegies/ intolerances, stool specimans, and maybe even mercury poisoning...

any other suggestions?

i dunno. im still in pain. serious excessive gas and excessive belching. i cant even make it through a day at work most of the time, and with the economy....i need money.

[ShayFL]

Correct. If you are on a gluten free diet then the biopsy will be inaccurate. Some say you need to eat gluten heavy for a good 3 months for them to be accurate. I couldnt do that...no. But some do it just to get an official dx. But you already got that, so not sure why you would want to torment yourself now.

Candida is a possibility. Have you researched the SCD diet? www.pecanbread.com

A lot of people in here (including me) have had success with it. Google it and see what you think.

[Jaimepsalm63]

I swear I thought I had made a comment yesterday when reading this and it's not up. I have no clue as to why. Anyway, I would still talk to your doctor about gastroparesis. I was dx with gastritis and then the gastroparesis. It took some time and it's very frustrating. If you get that tested at least you won't have to worry about it, and you won't have me constantly trying to say it. (I know I get repetitive, but it's because I'm having a flare up with mine at the moment and don't want anyone else to suffer with it. I think we all are giving opinions about what we've gone through and will give suggestions to the like.)

I'm sorry to hear you are going through this though. I was up in weight myself for a bit and am back down to being 5 pounds before the IV treatment....even that is giving me no incentive to eat much because I'm so sick. The gas and belching is a sign of gastroparesis, with the burning, and fullness....my doctor told me I would be getting gastritis for the rest of my life in a series of flare ups. Don't let a doctor talk you out of this test if you don't have diabetes, which is very common with gastroparesis. I don't have diabetes and still have the other.

As for the insurance....they all stink and I've had to fight them too. Stick to your guns and tell them that once a doctor figures it out, you won't be seeing them like you have been. My husband fought for me not to be dropped.

So there it is...again.

Blessings,

Jaime