Should I Be Here?

[Melusine]

hey,

i've never been diagnosed with anything - but end 2005, I had my first ulcer due to chronic acid reflux. i had some IBS type symptoms, but nothing serious enough to diagnose. I was given PPI's and told to cut out coffee. I did. Six months later, I had a second bouncing baby ulcer. Again, PPI's and give up caffeine, chocolate, and all acidic fruit. End 2006, third ulcer and at this point the only thing that didn't seem to be agonising was rice, nuked chicken and dairy chocolate. Ugh.

For the next two years, I lived on antacids, as in a pack a meal. but if I 'just lost weight' all my problems would be solved! I lost 45 pound and they got worse. Yes, I'm still obese, but i've only regained about 5 of those pounds.

Then on chance I read an article, november 2008, and I cut out wheat and milk, and found I could almost come off some PPI's i'd ordered off the internet (doctors only being willing to advise me to lose weight - you can't do that if you can't sleep and are in agony = exercise doesn't work then!) in two weeks.

Since then I've defined it down as being gluten, not wheat, and oats seem problematic. I've been as close to gluten free as i can since Dec 1, 2008. I've had six antacids, mostly when I've slipped up, or the time I tried beer (oops?)

i have no more ibs like symptoms. I can sleep. I am not losing weight or gaining it with 'normal' eating, which is a change- i kept gaining! And no more acid reflux.

I refuse to go on gluten for 3 months for more 'testing'. I'm going to a new doctor this month. Any clues on how to approach this? Should I even be here?

Melusine

[cyberprof]

hey,

i've never been diagnosed with anything - but end 2005, I had my first ulcer due to chronic acid reflux. i had some IBS type symptoms, but nothing serious enough to diagnose. I was given PPI's and told to cut out coffee. I did. Six months later, I had a second bouncing baby ulcer. Again, PPI's and give up caffeine, chocolate, and all acidic fruit. End 2006, third ulcer and at this point the only thing that didn't seem to be agonising was rice, nuked chicken and dairy chocolate. Ugh.

For the next two years, I lived on antacids, as in a pack a meal. but if I 'just lost weight' all my problems would be solved! I lost 45 pound and they got worse. Yes, I'm still obese, but i've only regained about 5 of those pounds.

Then on chance I read an article, november 2008, and I cut out wheat and milk, and found I could almost come off some PPI's i'd ordered off the internet (doctors only being willing to advise me to lose weight - you can't do that if you can't sleep and are in agony = exercise doesn't work then!) in two weeks.

Since then I've defined it down as being gluten, not wheat, and oats seem problematic. I've been as close to gluten free as i can since Dec 1, 2008. I've had six antacids, mostly when I've slipped up, or the time I tried beer (oops?)

i have no more ibs like symptoms. I can sleep. I am not losing weight or gaining it with 'normal' eating, which is a change- i kept gaining! And no more acid reflux.

I refuse to go on gluten for 3 months for more 'testing'. I'm going to a new doctor this month. Any clues on how to approach this? Should I even be here?

Melusine

Welcome, and yes it sounds like you do belong here. Diagnosis or not, it seems like you have a problem with gluten.

I'm another who gained weight like crazy pre-diagnosis and though I haven't lost any (yet) I am not gaining and feel a lot healthier.

Regarding getting a diagnosis, I'm not sure that you need one unless you 1) need it to keep you from cheating and eating gluten; or 2) have other medical issue that don't clear up. But it doesn't seem like that's the case.

Make yourself at home here, it's a great place.

[Melusine]

I don't need it to stay gluten free- i've had very few cravings, though this weekend i got a bit miffed at the bar-food, but i have an awesome housemate who tells me off on the very rare times I slip up.

I'm hypothyroid and with pcos as well...and you know doctors, they can't take anyone else but their own word for a diagnosis...*grumble*

[nasalady]

I'm hypothyroid and with pcos as well...and you know doctors, they can't take anyone else but their own word for a diagnosis...*grumble*

Both of those conditions are very common in our community here. Have you been diagnosed with any autoimmune thyroid disease? Because those have definitely been linked to celiac disease.

Sounds like you do belong here!

Good luck!

JoAnn

[Melusine]

Hi JoAnn,

No Hashi's for me - that would be too easy to pinpoint, just TSH readings that swing up to around the 7's and then back to around the 2's...I finally got a gp to listen to me and I swear, if I have to go another round with the new one, I will, but I want my meds dammit ;-)

[Foxfire62]

The most difficult thing to do is stay on a gluten diet for at least two weeks and get a blood test and then biopsied after the results of your blood test. If you are not on a gluten diet for a longer period of time, test results will be negative.

If you're a celiac, having a full celiac blood panel and an intestinal biopsy are the only ways to confirm whether or not you have celiac disease. Again, in order to do that, you have to consume gluten.

So, you have a choice. Either you go back on gluten and get tested and risk feeling poorly, in order to rule out celiac disease, or you just assume you are gluten-intolerant or have celiac disease and abstain from any gluten. It is entirely up to you.

Good luck! Everyone here knows and understands how difficult this is for you.

[Melusine]

Are there any real benefits on being diagnosed formally?

[gfreegirl0125]

I was recently diagnosed with Celiac - Well I should say informally diagnosed - I was put on a Gluten free diet prior to the blood tests and biopsy by my primary doctor. The test results came back negative - However - because I responded to the g/free diet so well the GI doctor said it is definately a Gluten Intolerance and what they consider "Undiagnosable Celiac" - where you respond well to the g/free diet, had multiple symptoms but they are unable to get a positive test result - She said I could go back to eating gluten for 2-3 months and she could re-do the tests but I NEVER want to feel that way again - I fought with doctors for years who basically told me it was IBS-C - and I knew it was deeper than that and it's not worth eating food that makes me sick - I feel 100000 times better - So, if the Gluten Free diet works for you I would stick with it -

[Melusine]

I'm not inclined to hurt myself for 3 months without a very good reason -masochist I am not!

Thank you for the advice!

[gfb1]

[snip]what they consider "Undiagnosable Celiac" - [snip]

i fell off my little computer chair reading that one!!

that is the "best" diagnosis i have ever heard.

i am "terribly pleased" that we have been "clearly misunderstood" by all the medical "butt heads" who "almost exactly" can tell us, yes, its a "definite maybe"....

what a bunch of (oxy)morons.

[ang1e0251]

I am a self diagnosed person with celiac disease. My doctor isn't entirely convinced but I never told him all of my symptoms either. Since I'm off gluten, I've only had to see him once a year for BP. So that is a small window for him to talk to me.

Personally, I won't ever do a gluten challenge. My symptoms are very clear when I'm glutened and I know how I feel better than anyone. If needed, I would take the genetic tests if that would help my family. Right now, they see no need as long as they don't have symptoms. They think they don't have symptoms.

I think the dietary response to gluten is a huge diagnostic tool for dr's. Some use it and others don't believe what they can't see. If you're still eating any gluten and want to the blood panel, go for it. Otherwise you can listen to your body as you have been doing and go forward.

[Melusine]

Awesome! thank you, glad to hear i'm not the only one!

[lcarter]

I'm another one of those "unofficially diagnosed celiacs". Out of total and complete frustration with doctors, I finally diagnosed myself a few years ago going on a gluten free diet myself. I realized that over the years I could pretty much check all the symptom boxes. I have been to soooo many doctors (including 3 gastroenterologists over the years) who were clueless and told me all sorts or things..mostly IBS or just a "nervous stomach", stress, even one idiot said it's "psychosomatic illness"(of course, all this with NO celiac disease testing). When I was an infant a pediatrician had the gall to tell my Mom that she was holding me wrong to feed me because I was having projectile vomiting, diarrhea and rashes...but, then that was in 1942. Who knew? Years past, and I suffered all the usual symptoms, but no doctor ever even mentioned Celiac. They just said I was sickly, underweight, and seemed to catch the flu a lot! In 1970, at 5'3" I weighed 98 lbs when I got pregnant the first time. I had such sever episodes of diarrhea and vomiting that they feared I could lose the baby. Fortunately, I didn't. Then, an allergist did skin testing and a few diet challenges. We found out all the dairy factions was problematic. So, no more dairy protein or lactose -- that was 1975. Things improved...but not completely. Three more little folks came along; but during that time I continued to develop more symptoms. I was put on therapeudic levels of vitamins and minerals because of blood tests. Also, I began having sporadic episodes of visual auras without the headache (recently there have been medical articles published that associate similar episodes with Celiac Disease in some patients who show occipital calcifications and spikes, as I do, on EEG and MRI tests). Then, there was carpel tunnel surgery on both hands for peripheral neurological problems, and an ER visit for intestines almost totally swollen shut (the hospital gastro wanted to remove part of my colin...fortunately, I declined!) That's when the internet search popped up with celiac disease and I begun the gluten-free diet on my own. Three months later my GP tells me he wants to run a Celiac blood panel...when it comes back negative he tells me, "there's no way you have celiac disease or something would have shown up." (I tried to tell him that was because I am careful and compliant with the diet). He would not authorize any more test except a colonoscopy, which I tried to explain is not diagnostic for celiac disease). Went to see the gastro anyway that he sent me to for the colonoscopy, but he was clueless too! Incredible!! That was only 5 yrs ago. Now, I am going to a new family doctor who thinks I need an "official diagnosis". HA! There is no way I would put myself though all that agony again just so some yoyo can say, "ya, you got it"! The gluten-free diet has all but cured me...plus, I haven't had a visual aura either in over 2-1/2 years (and, that last one was very mild) - I have been on the gluten-free diet for 3+ yrs I am convinced that I have Celiac since the diet made such a dramatic difference. What is the point of testing now?