Newbie Question

[shezatrip]

Hello Everyone :-)

I am new to this forum and had some questions for you regarding diagnosis.

I have had SEVERE pain/bloating/ulcers in my mouth/chronic fatigue/fibromyalgia

for 20 something years..with NO diagnosis other than epstein barr/irritable bowel

possibly and myofacia.

Long story short, many years couch ridden..unable to do anything.....

a few months ago i started researching Celiac. my son was tested and was negative,

as he was having tummy problems. My father has the SAME symptoms (he is 83 years old) and has suffered with; diarrhea, hemorrhoids,fatigue, pain, and the

blistering sores that so many have with Celiac. However, HE has not tested yet.

My question is this- Should I schedule an appointment and get the endoscopic PILL/cam...OR order the Biocard/at home celiac test?

My intestines at times feel like they have ulcers, and are burning and throbbing...To the point of wanting to go to ER

it comes and goes in flares. No diarrhea/no blood. So, I would not think I would

have crohnes or colitis. However the pillcam would show that.

If you were me..what would you do/in what order?

Does celiac come and go in flares? I have endometriosis too, so it is hard

to know what is what.

Any info is appreciated.....i'm confused. THX!!!!

(tried a gluten free diet for 2 weeks. didn't see a huge difference, although

i stopped because someone said if i wanted to get tested, i would have to load

up on gluten again)

[T.H.]

Oh goodness, so sorry you're having such trouble!!

To answer anything I can think of, or just comment on.

1. If you haven't figured out your son's tummy trouble, I would SO recommend taking him off of gluten for a while to see if it helps. My son was negative too (with other positive celiacs in the family) and we all went gluten free, and what symptoms he had disappeared on the gluten free diet. Since then, I have discovered that there IS such a thing as non-celiac gluten intolerance, which will give a negative test result, so it's worth checking out, ya know?

2. It sounds like getting tested with a pill cam might be of use to you. If you have a lot of pain, there could be damage in there that you need to really be aware of. You might want to get tested for H. pylori, too, as this is a common infection in celiacs and can cause ulcers.

3. Coming in flares - I haven't experienced it myself, but I've spoken to two women who had endometriosis, and they both experienced celiac symptoms that ebbed and flowed with their cycles. I haven't heard of this other than that, but it wouldn't surprise me if it was possible.

4. The gluten-free diet - something to be aware of is that because of our legal system and modern processing, a gluten free diet, as it's labeled on our food packaging, is not actually free of gluten. It's just really, really low gluten. So just like low calorie food can make you fat if you eat enough, low gluten food can make you react if you eat enough. So many people go on very plain diets to start off with - fruits, veggies, meats, no dairy, little to no grains, beans, and nuts (they have a higher risk of contamination, and it's sometimes easier to avoid them at first until you learn what brands are safe for you). So if that's not the diet you had, it could be you were still getting too much gluten for whatever your body's limit was. Or in some cases, it can take a while before the symptoms resolve, too. Or, hey, could be something completely different! (If you haven't ever checked out fructose malabsorption, that's another one that can cause reactions from fruits, veggies, grains, etc...)

Good luck!

[sandsurfgirl]

Two weeks wasn't nearly enough time to see a big difference from the gluten free diet. It's so complicated that it takes 2 weeks to get the hang of it, so likely you weren't truly even gluten free yet.

However, since you are eating gluten I would get tested. Ask and then demand if you have to that your doctor run the celiac blood panel. Only ONE out of the five tests has to be positive to say that you are celiac. If that comes up positive it's a very quick easy answer.

I dont know about the biocard home test, but I'm all for as much information as possible so do it. If you can afford Enterolab, maybe do that too.

If they are offering you the pill cam then go for it. You can get a lot of answers that way too.

If the blood tests come up negative you can either try for a biopsy or just go gluten free. It was SIX months befoer I had one symptom free day on the gluten free diet. But I did see improvements all the time, even in the first few days, but it was a slow process. So if you go gluten free again, so as much research on here as you can. Get rid of ALL gluten including soaps, shampoos, etc. And give it at least a month, but better if you give it two. Eat a clean diet mainly with whole foods- meats, rice, veggies, fruits, etc. to promote healing. You will heal faster the cleaner your diet is.

[shezatrip]

Two weeks wasn't nearly enough time to see a big difference from the gluten free diet. It's so complicated that it takes 2 weeks to get the hang of it, so likely you weren't truly even gluten free yet.

However, since you are eating gluten I would get tested. Ask and then demand if you have to that your doctor run the celiac blood panel. Only ONE out of the five tests has to be positive to say that you are celiac. If that comes up positive it's a very quick easy answer.

I dont know about the biocard home test, but I'm all for as much information as possible so do it. If you can afford Enterolab, maybe do that too.

If they are offering you the pill cam then go for it. You can get a lot of answers that way too.

If the blood tests come up negative you can either try for a biopsy or just go gluten free. It was SIX months befoer I had one symptom free day on the gluten free diet. But I did see improvements all the time, even in the first few days, but it was a slow process. So if you go gluten free again, so as much research on here as you can. Get rid of ALL gluten including soaps, shampoos, etc. And give it at least a month, but better if you give it two. Eat a clean diet mainly with whole foods- meats, rice, veggies, fruits, etc. to promote healing. You will heal faster the cleaner your diet is.

Thank you so much for your WONDERFUL info. I have been vacilating back and forth

in limbo and both of your answers gives me much clarity!

Wow, 6 mos. before changes....As soon as I am done with my test i will start back up again. Is the enterolab test reliable? THX again :-)

[shezatrip]

Oh goodness, so sorry you're having such trouble!!

To answer anything I can think of, or just comment on.

1. If you haven't figured out your son's tummy trouble, I would SO recommend taking him off of gluten for a while to see if it helps. My son was negative too (with other positive celiacs in the family) and we all went gluten free, and what symptoms he had disappeared on the gluten free diet. Since then, I have discovered that there IS such a thing as non-celiac gluten intolerance, which will give a negative test result, so it's worth checking out, ya know?

2. It sounds like getting tested with a pill cam might be of use to you. If you have a lot of pain, there could be damage in there that you need to really be aware of. You might want to get tested for H. pylori, too, as this is a common infection in celiacs and can cause ulcers.

3. Coming in flares - I haven't experienced it myself, but I've spoken to two women who had endometriosis, and they both experienced celiac symptoms that ebbed and flowed with their cycles. I haven't heard of this other than that, but it wouldn't surprise me if it was possible.

4. The gluten-free diet - something to be aware of is that because of our legal system and modern processing, a gluten free diet, as it's labeled on our food packaging, is not actually free of gluten. It's just really, really low gluten. So just like low calorie food can make you fat if you eat enough, low gluten food can make you react if you eat enough. So many people go on very plain diets to start off with - fruits, veggies, meats, no dairy, little to no grains, beans, and nuts (they have a higher risk of contamination, and it's sometimes easier to avoid them at first until you learn what brands are safe for you). So if that's not the diet you had, it could be you were still getting too much gluten for whatever your body's limit was. Or in some cases, it can take a while before the symptoms resolve, too. Or, hey, could be something completely different! (If you haven't ever checked out fructose malabsorption, that's another one that can cause reactions from fruits, veggies, grains, etc...)

Good luck!

Thank you Shauna for your wonderful info!! It is giving me clarity to see the

light :-)