Let The Games Begin.... (long)

[ohsotired]

I found this forum a couple of weeks ago while researching Celiac Disease, and since starting my research have become convinced that there's a very strong possibility that I have celiac disease. I have a long list of possibly connected symptoms that range over the last eight years. (See my Open Original Shared Link for a list.)

Out of curiosity, I went gluten free for four glorious days, with awesome results. I felt better than I had in years.

Knowing that if I was to be tested for celiac disease I'd need to be on a glutenous diet, I began eating gluten again just over a week ago. The last week has been one of the worst ever for me, and each attack seems to be getting more painful.

So yesterday I had an appointment with an MD/DO to get started in figuring out what the heck is really wrong with me. We talk about my symptoms (although I didn't get to cover them all), my family's history of IBS and diverticulitis (two generations worth - but all much older family members; I mention this because I wonder if it's possible they were labeled with IBS because no one could figure out what was wrong) and the fact that I tried a gluten-free diet for four days and felt pretty darn good.

I thought the doctor seemed very receptive to what I was telling him, until............

He refers me straight to a GI and writes me a script for Symax to be taken "as needed" help with my stomach pains. No blood work was drawn, but they did collect a urine sample (not sure what for).

He also said "Drink plenty of water and lay off the gluten filled foods." I asked him if that wouldn't affect any test results that the GI might order, and he says "Oh no, they can still do the tests."

I won't be filling the script for Symax, I don't think. I realized that the generic name of Symax is 'hyoscyamine sulfate' - and the sulfate part of that rings some serious alarm bells in my head. About 10 years ago I had a serious allergic reaction to a sulfa drug (don't remember the name, but it was Rx'd for a sinus infection) that sent me to the ER. I was told to stay away from all sulfa drugs or risk further serious reactions (possibly including death). The doc and I did talk about this.

Soooo...........I don't think I'm going to take the Symax.

I'll be calling the GI here in a bit to see when I can get in, but I have to say I'm not sure I have high hopes for that appointment either.

Does anyone have any advice or encouragement to offer?

Is there something specific I should ask for or discuss with the GI?

I'm just feeling down today as I'm concerned that this is going to be a long trek of being bounced around.

Thanks in advance.

[ShayFL]

Ask GI for a complete Celiac blood panel. They can do that too. Then you might need an endoscopy. There are ways to get what you want from doctors. Given your family history. I see no reason you cannot say. My family has it and I need to be tested now because I have symptoms. He isnt going to interview your family. They screw with us non-stop. Get what you want out of him (or her).

[Lisa]

I wanted to add that your doctor is ill informed. Of course, as you know, going gluten free WILL effect your testing.

If the GI cannot schedule you anytime soon, I would return to your doctor and request/demand the following panel for Celiac:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

And do continue to eat gluten. Remember that the blood test are not always reliable, but with your success in positive dietary response, you could continue with the diet and feel better. Many people here are self diagnosed and feel quite comfortable with that decision.

[ohsotired]

Thanks for responding, you two.

ShayFL - Good point about just telling the GI that there's a family history. The thought had crossed my mind, but then I felt guilty for thinking about lying. LOL

MommaGoose - Yes, I know he was ill informed. I was too dumb founded at what he said to challenge him on it.

Haven't gotten through to the GI office yet, but will continue trying. If they can't get me in there in the next week, then I will go back to the MD/DO and just demand the test. I'll hit up a diff doc in the office if I have to.

I have already considered foregoing an official diagnosis and just returning to gluten free, but I feel like I need to know one way or the other for several reasons.

1) If it runs in the family, my daughter deserves to know so she can be on the lookout for symptoms later in life.

2) I feel like I need proof for those friends and family that will challenge me about the diet.

3) I also feel like I need solid proof to show to my husband, so I can convince him of the possible dangers of cross contamination (he's coming around to the reality that gluten-free makes me feel better, but he 'pooh poohs' the idea that even a tiny crumb might make me sick)

[Live2BWell]

Well I sent you a PM, but I wanted to reply to your post and say I'm sending positive vibes your way for a NOT long road to recovery

[ohsotired]

Thanks Jessica! Have a sip of wine for me.

Well I finally got through to the GI office, and I have an appointment set up for July 16th.

(The recommended doc didn't have availability until August, so I went with this one - same office)

Fingers crossed.

[ShayFL]

And you arent really lying because your family may just not have been diagnosed yet.

I think it is important for you to get an official dx if you can because you have a daughter and it sounds that will help you with your family/husband.

Keep eating the gluten.....only a week wait.

You can go gluten-free as soon as you leave the GI's office AFTER an endoscopy. Try to get it scheduled ASAP!

[ohsotired]

Well, I did some research on the GI that I'll be seeing, and I see a tiny glimmer of hope.

Apparently he's a good listener, explains things very well, and is very thorough (testimonials from a local message board from people that have gone to see him).

So I'm counting the days until my appointment, and continuing on my glutenous torture.

I can't wait to just eat food again (after reading labels of course) instead of looking at my food and wondering "How bad is THIS gonna make me feel?"

[Fifi]

And if you are positive, you would want to have your daughter tested to make sure that she is not a silent celiac if she is currently not having symptoms.

[.:* Lou *:.]

Hi there

The games are beginning for me too, it seems. Gluten free for 6 and a bit weeks, and I haven't felt so good! I've actually started to forget what I felt like after eating it!

Anyhow, got a bloodtest with the panels (as suggested by mother goose earlier) ~ although the doc said that it'll probably show negative because I haven't eaten it in that amount of time. Results due in the next couple days..

(in the same boat) I know that I feel ill after eating it, but family etc. need proof other than my word. And I guess that would remove the sense you have of "I know it's not all in my head but they all think I've lost it.."

So if you find that the results are negative in blood test, do you continue with the gluten-free diet and just have faith in your own judgement or go on a gluten devouring spree to prove it?

Goodluck with your 'gluten spree'~ hope you get the results to clarify things. xx

[ohsotired]

Hi Lou,

At least your doc seems to know what he's talking about!

You hit the nail on the head, I think. "I know it's not all in my head......"

It's really frustrating, because I'm the only one that knows how awful I feel (well, I'm sure people here can relate) - outwardly, I look ok to most everyone else.

For me, I think if my test results are negative (blood & biopsy) I will just re-start the gluten free diet, and maybe do testing from Enterolab for myself. If my family and friends want to think I"m nuts, so be it. I know I will feel better. Now that I've figured out the likely source of my troubles for the last 8-9 years, I just don't want to feel like this any more.

Good luck with your test results too! Please post back here and let us know what they say!

[ohsotired]

Just a little update..........

Last week I saw the GI doc and had a good first impression. He really seemed to listen and he took a lot of notes and asked a lot of questions. I told him that I had been "diagnosed" with IBS about 8 years ago, and he actually asked me "How were you diagnosed?" I told him "The doc just said 'I think it's IBS'." He sighed and asked "No tests were done?"

I told him no, and he said "Well we're not calling it IBS until we rule out everything else." A glimmer of hope!

So they drew blood for a variety of tests, including a Celiac Panel, sent me home with a stool sample kit, and scheduled me for a colonoscopy on the 28th.

I got a phone call from their office today stating that "All blood work is normal." Since I'm not really sure what that means and I don't know what all they actually tested for, I'm stopping by there tomorrow to pick up a copy of the results.

But I'm thinking that there's no endoscopy in my future because the blood work was 'normal'. But maybe it will depend on what they see during the colonoscopy.

I was almost hoping for positive bloodwork. At least then I would have an idea of what is wrong with me.

[.:* Lou *:.]

well, results are in and everything is "normal".

Funny that, seeing I'd been on a gluten free diet for 6 weeks prior to the bloodtest.

Been referred to a gastro specialist who most likely wants to do an endoscopy - but now it's been about 2 months since gluten eating so they might not even find anything (plus I get big anesthetic reactions so I kinda want to steer away from it! arrgh!)

So Because I really can't afford to get sick from going on a gluten-filled diet (because I'm about to start the last semester of my teaching degree with extra subjects), what do I do? Should I just continue the gluten free diet and that's it? Because I do wonder about the 'it's all in my head' aspect and it makes me doubt it all.

[gfpaperdoll]

"So Because I really can't afford to get sick from going on a gluten-filled diet (because I'm about to start the last semester of my teaching degree with extra subjects), what do I do? Should I just continue the gluten free diet and that's it? Because I do wonder about the 'it's all in my head' aspect and it makes me doubt it all. "

well the gut does communicate with the brain, so in a way you could also say it was all in your head.

have you ever taken a medication that did not agree with you? Did you think that was all in your head?

have you been conditioned to not believe in yourself? It is insideous, those little rebukes from the medical people, or your family or your "friends". Maybe you could just explain to them that you have a mental condition. That everytime you eat gluten you think that you get sick. If it ws me, as I was throwing up on their carpet, I would say that I am just such a mental case. I would also ask them, "Did I really vomit, or did I just think that I did?" :)

I would think that becoming a teacher that it would be important for you to learn to believe in yourself so that you can teach others to believe in themselves. If you heard a little voice in your head that said "do not walk down that dark alley", would you still do it?

really you have to make that decision for yourself as to what to do. I personally do not need or want to have a medical person to tell me I have a problem with gluten. I am the one that tells them to get their kids tested etc. (& they listen!) You could always test thru Enterolab.com

[.:* Lou *:.]

point taken paperdoll

yes, I have been conditioned to not believe in myself by my family - and I think my main motivation for getting tested was to settle it with them. I guess I let my awareness down, & their opinions take over, in my frustration [which, being human, unfortunately catches up with us all sometimes.. ].

so, thanks for your advice - it was exactly what I needed to hear (sometimes we need a nudge in the right direction when we're feeling a little lost). I do have faith in myself (& the voice in my head), though it can sometimes be a bit of a struggle.

the heart of the matter is that I feel the best I've felt in so long - no more intense nausea, tummy troubles or headaches - since cutting out gluten. Which is fantastic ~ and surely enough proof for anyone, hey?

[Jestgar]

yes, I have been conditioned to not believe in myself by my family -

SLAP!!

Well the rule here is "We believe you, so you have to believe yourself"

It's so funny how connecting illness to food is hard for people (other people, I mean, the ones that don't get sick from it). I wonder if its some throw back to caveman days where survival depended on body awareness, and denying someone else was sick from the only available food source meant you could keep eating it.

Or maybe we're all just stubborn and hate to have to change our viewpoints

But seriously Lou, you'll find a lot of affirmation here. If you are ever unsure, ask, and you'll find half a dozen people that have had the same experience, whatever it is.