Want Tested - Can't Get It

[BigDogz]

Hi, all...I'm new here.

I'm becoming more and more convinced that I've suffered from Celiac Disease for the past 20 years. My doc refuses to entertain the possibility or order testing, instead preferring to label the symptoms as IBS and telling me to "live with it". Trouble is, I can't.

Up through my teen years I was able to eat everything and anything without problems, including dairy products. Not long after I turned 20 my Dad was diagnosed with gastric/esophageal cancer that had spread to his liver and lungs. I was under a LOT of stress trying to care for him, complete college and hold down a part-time job. I was too tired caring for him to worry about myself and my diet sucked - subs, pizza and other fast foods that were quick and easy, all washed down with Pepsi or Mt. Dew for the caffeine pick-me-up.

I started having horrible intestinal cramps and diarrhea. It would come on so suddenly I couldn't even make it to the bathroom quick enough a few times. I figured it was the stress and it would go away once the stress improved. It improved a little, but not much. Over the years the symptoms have gotten worse. From what I've learned of IBS, there isn't progression of symptoms and I've tried convincing my doc that something more is going on but he just won't listen.

I never could really put a pattern to my symptoms. One time it seemed related to eating dairy products. Next time, they didn't seem to bother me but fresh vegetables did. The another time, I ate veggies without problems and I couldn't tie my issues to anything in particular. All I knew was that I had periods of constipation often followed by terrible gas, cramps and liquid diarrhea with undigested food in it. As the years have gone by the constipation is few and far between but the diarrhea is much worse, incredibly fool smelling and I'm constantly passing undigested food. Weird part is, I've actually GAINED weight (30 lbs. in 20 years), not lost it. On the other hand, I'm constantly hungry so you almost never see me without something to eat. I've also noted that I can wake up in the AM with a relatively flat tummy and fit nicely into my jeans but they grow tighter and tighter and my belly gets more and more bloated looking the longer the day goes. I'm virtually never without something to drink and there are days that my vision is extremely blurry.

Last summer I was exhausted beyond anything I could have imagined even getting as much as 12-14 hours of sleep. I'd get up feeling as though I'd never been to bed. I could make it about 2 hours and then have to crawl back into bed for at least 2 more hours. My hair had thinned on the top of my head, I had dark circles under my eyes, my family complained that my personality had changed and I was feeling irritated and snapping at people even though I couldn't explain why. On top of that I was having nasty muscle cramps in my legs and strange muscle twitching in my arms, legs and eyelids. When my hands and feet started getting pins and needles sensations, I finally went back to my doc and forced him into some testing...what he would consent to do, anyway.

My thyroid test came out OK. I do have some thyroid antibodies but not high enough to diagnose Hashimoto's Thyroiditis. The blood counts were normal except that my blood sugar was on the high side of normal - strange considering that I had problems with LOW sugar when I was younger. I also had a B12 level of 250, almost half of the 450 that is considered optimum in the US (Europeans recommend much higher levels at 1,100-1,300). Doc didn't really want to start B12 injections but he did it as a way of placating me and getting me out of his hair. The fatigue is better but the intestinal symptoms continue.

I was even more convinced of celiac disease at that point and Doc was still refusing to do testing. I figured I need to PROVE to him that I was right so I went on a gluten-free diet on my own. My intestinal symptoms disappeared within a week or so and I was even able to add back foods that had previously seemed to give me problems like ice cream, cheese and veggies. I stayed gluten-free and without symptoms for a month. I then went back to a regular diet with gluten in it and the results were, should I say, explosive. Not only do I have pain in my stomach but I've had a return of the bloating, gas, cramps and liquid stools with the undigested food in it. I've eaten gluten-containing foods for 5 days now and I've had 2 or 3 episodes of liquid stools each of the 5 days. Based on symptoms and my own challenge test, I'm convinced I have celiac disease but Doc is still refusing testing. I'm looking for a new doc who will listen and actually DO his job. Until then, I've ordered a home test kit for Celiac and am suffering through eating a gluten-laden diet and all the symptoms that go with it in order to do the test.

My doc has also refused diabetes testing since my values weren't "technically" elevated. I bought a home meter and have been testing each AM and also randomly. While eating a gluten diet and having all the diarrhea my sugars aren't going over 125, even a hour after eating. While I was on the gluten-FREE diet, my sugars were 112-136 after fasting all night and as high as 185 one hour after eating. I see this as further evidence that I had celiac disease and wasn't absorbing anything. Obviously, I worried that diabetes is an issue, too.

Does my story sound familiar to anyone? Based on what I've told you, and without the benefit of any test results (yet), is it likely that I am a Celiac? I suppose it's all academic because I'm still going to go back to a gluten-free lifestyle when I'm done with testing because it worked for me and I was actually able to live life instead of spending it on the toilet or casing out the location of the nearest public facilities when I'm out on the town.

[mushroom]

Hi, and welcome to the forum.

Unfortunately, your story sounds depressingly familiar. You are definitely right that you need a new doctor, one that will listen and just maybe connect the dots--it's really not that difficult. At the very least, to order a celiac blood panel. Let us know how your self-testing turns out. And do get that new doc!

Of course, you could always stay one of the self-diagnosed, there are many of us, but with an unstable blood sugar I think you should have a doc involved. It will probably stabilize gluten free, but just in case.

[happygirl]

Find a local support group for Celiac Disease, and ask them for recommendations of doctors in your area that their members use that are familiar with Celiac.

[ravenwoodglass]

You need a new doctor ASAP if you feel you need a doctor to diagnose. I think your body has already given you the answer.

There are folks who have been selfdiagnosed and simply went from their own 'gut' feelings and the resolution of symptoms. You don't really need a doctors diagnosis to be gluten free and there are pros and cons to being diagnosed. Some have difficulty getting doctors to do the required screens that should be done after diagnosis, like vitamin and mineral levels, screening for osteoporosis for example, if they don't have a formal diagnosis. Some with a formal diagnosis have insurance issues even though after diagnosis we often see doctors much less.

Some doctors that have seen us for a while will diagnose based on the resolution of symptoms after we have been gluten-free but some will want to 'poison' us for 3 months back on the diet to confirm. As you have seen from your gluten challenge (what happened when you added gluten back in) that would most likely be a miserable 3 months. Even on a full gluten diet some of us show negative on blood testing and biopsy can also show a false negative.

There are some people who use Enterolab for stool testing for the antibodies to gluten and they also can do gene testing. At this point most doctors do not recognize Enterolab testing as valid and insurance does not cover the cost but many have found them helpful. They can pick up the antibodies for I think up to a year after you stop eating gluten so you wouldn't need to do a long term challenge to be tested.

[BigDogz]

WOW, I didn't know that stool testing would pick up antibodies for a whole YEAR!

Frankly, I'm just doing the home test kit hoping to get a positive result so that I can show my doctor what a pompous, insensitive, under-educated, poorly practicing jerk he is. It's not going to change a thing in my mind even if it comes back negative. As far as I'm concerned, I've proven it all on my own with my own little gluten challenge.

Once I do the home kit, it's right back to gluten-free for me.

[Leper Messiah]

Yeah I think of this line of thought too, whatever makes me feel better really but something nagging at me wouldn't mind some sort of reliable affirmation, of sorts. Let us know how you get on with your test bigdogz, it set you back much?

[BigDogz]

Yeah I think of this line of thought too, whatever makes me feel better really but something nagging at me wouldn't mind some sort of reliable affirmation, of sorts. Let us know how you get on with your test bigdogz, it set you back much?

With the exchange rate from GBP to US dollars and the international shipping it still is only costing me about $50. Worth every penny if I get the affirmation I'm looking for...especially if I can wipe that smug, holier-than-though smirk off my doc's face!!

I think there's a home test kit out of Canada, too, but the website says it's only available to Canadian buyers. They do have a notation that says if you're outside of Canada you can call them. I suppose they probably will still send it but have to give you the "our results aren't accepted in the US" speech first. You know, all that legal liability crap. I just didn't want to deal with the extra "work" to get the test from Canada when I could just easily order it off the website of the UK company.

I'll be sure to let everyone know how my test turns out.

[rinne]

Hi.

In my opinion your doctor is worse than the average bad doctor, he is abusive and insulting in addition to being ignorant. I don't think that any proof you come up with will make him admit he is wrong, I would write him off right now.

I am glad to know that regardless of testing you intend on going gluten free as obviously it is a positive step toward health for you.

I've been there with doctors, one after agreeing to do a test I requested said, "I'll do it and then I am done with you." I was done with her even before I asked for the test, she had already prescibed medicine that would have harmed me if I had taken it.

Trust yourself.

I hope you are feeling better soon.

[RollingAlong]

Whatever you do, re: testing and docs, you are on it to keep using that blood glucose meter!

Check out bloodsugar101.com for info on how to get the most out of your test strips.

If you decide to eat low carb for awhile, the bernstein diabetes forum is a pretty good fit for that, even if you are not diabetic or even pre-diabetic. Great recipes! The forum has been down for the past few days, but should be back shortly.

www.diabetes-book.com/cgi-bin/yabb2/YaBB.pl

[BigDogz]

I definitely plan to continue following my sugars. Since I don't have an "official" pre-diabetes or diabetes diagnosis from a doctor my health insurance won't pay for any supplies, so the cost of the test strips is coming out of my pocket. It can get expensive but I'm not about to sacrifice the early detection of a burdgeoning problem just because insurance won't pay for them.

If you think about it, the way insurance in the US works is really odd. Instead of paying for things, like the test strips, that help me monitor my sugars and gauge if my diet is keeping things under control, they won't pay until I'm REALLY sick. By that time, I probably would have complications of diabetes, too, and caring for them and the diabetes would most likely end up costing my insurance MORE than if they'd just paid to help me keep a handle on things. Gotta love bureaucratic red tape!

[BigDogz]

Well...

I got the home test kit from the UK today. I had been gluten-free x 4 weeks with complete resolution of my symptoms. I went back to glutening myself 10 days ago with a nearly immediate return of symptoms, some of which were actually magnified above and beyond what they had been previously. And bloating?! I look like I'm 9 months pregnant and I can't even get my "Fat Elvis" jeans buttoned now!!!

Anyway...I did the blood test this evening and it turned up disappointingly negative. Is it possible the blood test was skewed by previously going gluten-free? I suppose. Could it just as equally been accurate? That's a possibility, too. I will say that I had a Thyroid antibody test done back in September that did show some antibodies, but not enough to lend me a diagnosis of auto-immune thyroid disease. Possibly the same is true here - that I have some Celiac-related antibodies but not enough to make the test kit react.

Regardless of the negative blood test, I am 100% convinced that my body knows better than any tests. I go gluten-free and the symptoms clear. I return to gluten and the symptoms come back with a vengeance. As far as I'm concerned, my body is telling me that I am, indeed, a Celiac and I intend to proudly count myself as a member of the Celiac community and plan to continue with the gluten-free lifestyle!

[mushroom]

A gluten challenge is a valid diagnostic tool. Ten days of gluten eating would not have been enough time to manufacture the antibodies you were trying to measure since you had been gluten free for so long, sorry to say. They usually say six to eight weeks, which you probably wouldn't even want to contemplate

[BigDogz]

A gluten challenge is a valid diagnostic tool. Ten days of gluten eating would not have been enough time to manufacture the antibodies you were trying to measure since you had been gluten free for so long, sorry to say. They usually say six to eight weeks, which you probably wouldn't even want to contemplate

Yeah, I knew I was taking the chance of a falsely negative test because of the gluten-free period but wanted to do it anyway. Like you, though, I feel that the return of symptoms with the re-introduction of gluten is proof enough of Celiac for me to make my own self-diagnosis.

And, yes, believe me, you are SOOOOOOOOO right that I wouldn't want to stay on gluten-containing foods for 6-8 weeks. I'm so sore and achy I could cry! My hands are so swollen I had to use ice water and soap to get my ring off so it didn't end up needing cut off. I had horrible intestinal cramps and nasty, foul-smelling diarrhea the first 2 days. That stopped and I've now gone the other direction with constipation and bloating. Also, my tongue burns as though I'd eaten something that was just a bit too hot.

Can't wait to get back to gluten-free eating...and feeling better!