Fair Diagnosis? How?

[roseillus]

Hi,

I hope this isn't too long of a post, but I'd like some advice. I think I have celiac disease, but most of the dr.s don't. How can I be assertive in getting a fair diagnosis? i.e. what to ask for, what to insist on, etc. Don't they get irritated if they know we're self-diagnosing?

I had a blood panel at UCSF arthritis center. The dr. tested for celiac disease as a possible explanation for my joint pain, saying I did NOT have rheumatoid arthritis. She called me later & said she thinks I may have Celiac Sprue, an intolerance to wheat, based on my gliadin antibody IgG results showing "h*66" (normal is ">20"), & she referred me to see a GI.

I immediately researched celiac disease, & found I have all the symptoms, & I probably have had for all my life, especially the bloating, protuding belly with thin arms & legs. I've often looked pregnant from childhood to now. I had my last child 10 yrs ago, but still AFTER eating, am uncomfortable & look & feel 8 months pregnant. I've never understood that. I have chronic migraines, & feel I'm 'deteriorating' beyond my years.

I assertively got in quickly at Kaiser (on MediCal), expedited my lab work & records by fax, LOADED up on gluten the DAY of my first visit, & got the general MD to refer me to their GI ASAP. That same evening, 8 HRS after consuming an overdose of gluten, I had an acute attack of severe abdominal pain & bloating, to the point that I could not MOVE! I was doubled over, couldn't sit, walk, or turn for hours. I cried & wanted to go to the ER, but couldn't drive myself from the pain, & thought it was stupid to go to the ER for 'gas' from my own experiment. Everyday since, I've been bloated & tender, though not to the same severity. My arthritis UCSF dr who recommended the celiac disease consideration said the acute bloating was probably a coincidence.

After the MD & the GI at Kaiser discussed my previous blood test, they both feel I have IBS & not celiac disease, because my gliadin antibodies IgA, thyroglobin, & tissue transglutaminase all appeared to be within normal.

I think perhaps my first blood test didn't reflect accurately because I have an eating disorder. Athough I never did a gluten-free diet, I HARDLY eat, & sometimes go DAYS without food (so why have I steadily gained weight, & had severe constipation whether I have diarrhea or not?). Often I eat so little & intuitively do fruits & vegies & avoid breads & sweets. So my gluten intake is limited. ALL the doctors (except the arthritis dr) claim my diet before the endoscopy & blood testing WON'T affect the result & is not a consideration for detection accuracy.

Now I'm supposedly scheduled (accidentally, due to my assertiveness) to get the endoscopy on 8/17 next week. But the nurse said the GI dr really doesn't want to do the invasive procedure without seeing me first for a general visit, which would take 3 to 4 months longer to get in. Hopefully, he'll go through with it anyway.

My friend suggested I call UCDavis & UCSF labs to find out how to get Kaiser to take enough tissue samples for 2nd & 3rd opinions at their labs, & to find out from Kaiser what lab they use to interpret the result. Is this a good idea & can it be done? Also, I was told to request RAST food allergy blood tests & bone density tests (?). I don't really know what all that is for, & how much more assertive I should try to be at the risk of losing any possible cooperation from the dr.s. And I hate when ignorant dr.s treat you like you're stupid.

I just want to get a fair diagnosis ASAP so I can get on with my diet changes & feel better! Can anyone offer some advice about dealing with these dr.s & tests? I really want to get the diagnosis rather than self-diagnosing. I'm receiving & applying for benefits for a lot of health issues, & think there's more resources with a diagnosis. Please send me some info & support. Thank you.

Rose

(not diagnosed, not gluten-free) ...yet

[tarnalberry]

why do you think you don't already have a diagnosis? a positive reaction to a gluten challenge IS a diagnosis in and of itself (and _some_ doctors accept it as one... _some_) if you're confident of this, just go gluten-free! BTW, did the second set of tests include a total IgA? if not, they can't conclude anything from below normal IgA's.

[GEF]

Rose,

I have a similar story. My IGG was the only test positive out of my series.. ... well, until recently. Even so, it revealed only slight positive on my IGA. I've done my researching on conditions that can cause an elevated IGG, as that's primarily what I have and I'm taking the route of ruling out various other autoimmune disorders and IBD (like Crohn's) before I am settled that it's gluten intolerance. I"m just being cautious and want to make sure that's not the only problem. Conditions that can cause your intestines to be more permeable can cause your intestines to leak out these proteins.. then you body fights it as a foreign substance.. which it is. Conditions (outside of celiac & gluten intolerance) can cause a rise in IGG's. Rose, as far as I've read and understood, it's important to find out why your body's reacting the way it is. I have a very difficult time accepting an IBS diagnosis without more serious (and similarily symptomatic) conditions being ruled out first.

Good luck and keep searching, keep asking.

Gretchen

[roseillus]

Thanks Tiffany & Gretchen for your replies.

I can't wait for this week to be over so I can get the scheduled endoscopy over with & see how I feel on the gluten-free diet!

I've only had one blood panel taken, & that one was all normal, except the IGG was high. I don't know if it was a "total IGA." What does that mean exactly? The IGA result said "<20" which they considered normal. What would it say if it was a "total" IGA?

I do feel it's important to me to have the biopsy, & I hope it's conclusive. But even if it's not, I'm going to try gluten-free anyway for certain.

I've been moderately uncomfortable today, & didn't eat much most of the day (though I made sure I had a few peices of bread in me in preparation for next weeks biopsy). By early evening I ate about 4 prunes & some apple juice hoping to alleviate the constipation. I finally had a good meal at dinner, which included some yummy sourdough garlic bread, vegies, & lamb. But I was so bloated during dinner, I could hardly force myself to eat the bread (that seemed like poisen to me). After dinner, my belly felt like it would bust, & I wondered if "normal" overweight people feel that rotten after eating (no wonder I have my eating disorder). Then the pain hit me so bad. I had cramps & explosive diarrhea & constipation at the same time. I was doubled over & in the bathroom again & again.

I'm convinced of the problem, but still want it confirmed formally. And I can hardly wait to try the solution.

My questions now, are: will I be ingesting enough gluten to show a positive test result?; should I investigate which labs they use; ask for extra tissue samples for additional opinions; insist that they redo the blood tests; ask for a gene test (though MediCal may not cover it); ask for RAST food allergy tests; & ask for a bone density test? Or just wait & see what they want to do?

Any suggestions on that, anyone? Thanks!

Rose

[GEF]

I think the total IGA is to rule out IGA deficiency.

[Guest rosei]

Hi again,

I got scoped, biopsied, & my bloodwork re-tested last Wed. The GI specialist at Kaiser seemed to be the usual jerk (he was impatient, wouldn't listen, & quickly decided before the scope that I have IBS & Reflux). The procedure was easier than I expected with no pain & it was over before I knew it. My intestines photo is marked with notes saying, "hiatal hernia," "polyp," & "irrit atim"). Anyone know if that is normal or indicative of damage? I'm still waiting for the formal results. How long does it usually take for results?

My regular doctor is ordering a bone density test & hopefully, RAST allergy blood test. Does anyone know if being gluten-free will affect those tests?

I didn't want to wait, so I'm trying to be gluten-free as of the date of my scope, hopefully with only a small mistake or two (who would guess they put wheat in beef jerky?). I'm eating mostly just rice, potatoes, corn, green vegies, yogurt, nuts, & meat, but still have a lot of uncertainty if I'm doing the new diet right.

By the second day, I actually thought I was feeling better; less GI symptoms & lots more energy. But 4 days into it, I got terribly bloated, still constipated, had cramps, & after eating had an extremely protruding swollen abdomen & discomfort. I don't think I had any gluten... This AM before eating, I had cramping pains, bloating, still constipated, & then a loose BM. Could I be reacting to the ice cream sundae I had?

Should I consider what the doctors say may be true & it's not really celiac, but something else causing my symptoms? Do I have to go off of dairy & sugars too to figure out what kind of intolerance I have?How long after a dietary change do others feel a change for better or worse?

Any feedback will be appreciated. Thanks all,

[burdee]

Rose:

Many celiacs also have difficulty digesting lactose (milk sugar) and a few of us have difficulty with casein (milk protein) intolerances. You can determine whether you have problems with lactose, casein or all dairy by first using lactaid supplements (chewable tablets) everytime you consume gluten free dairy products. If that prevents your symptoms, then you're just lactose intolerant and can use lactaid to prevent symptoms. If you STILL have symptoms, you may need to forgo all dairy for a while (or try substituting soy milk products) to see if that eliminates symptoms. I also have soy intolerance problems, so I just don't do any kind of dairy products. However, if you need milk for cooking or drinking or cereal, there are also rice and almond milks which are gluten/dairy free. In order to cook with rice milks, I was told by the manufacturer that you must first heat the rice milk to boiling (in order to break down the enzymes), then cool and then use in a recipe. Good luck with dairy sleuthing.

BURDEE

[burdee]

Rosei:

Many celiacs also have difficulty digesting lactose (milk sugar) and a few of us have difficulty with casein (milk protein) intolerances. You can determine whether you have problems with lactose, casein or all dairy by first using lactaid supplements (chewable tablets) everytime you consume gluten free dairy products. If that prevents your symptoms, then you're just lactose intolerant and can use lactaid to prevent symptoms. If you STILL have symptoms, you may need to forgo all dairy for a while (or try substituting soy milk products) to see if that eliminates symptoms. I also have soy intolerance problems, so I just don't do any kind of dairy products. However, if you need milk for cooking or drinking or cereal, there are also rice and almond milks which are gluten/dairy free. In order to cook with rice milks, I was told by the manufacturer that you must first heat the rice milk to boiling (in order to break down the enzymes), then cool and then use in a recipe. Good luck with dairy sleuthing.

BURDEE

[ideagirl]

I immediately researched celiac disease, & found I have all the symptoms, ... After the MD & the GI at Kaiser discussed my previous blood test, they both feel I have IBS & not celiac disease, because my gliadin antibodies IgA, thyroglobin, & tissue transglutaminase all appeared to be within normal.

Why wait for the diagnosis? Just go on the gluten-free diet and see how soon you feel better. If the gluten-free diet works, stay on it. You don't need prescription meds for celiac disease, so getting a doctor to validate that you have it isn't really necessary.