My Blood Test Was Negative

[firefightersgal]

After I told my doctor that I felt better than ever going gluten-free, and then had a major reaction yesterday after eating gluten, he informed me that my blood work was negative. He essentially dismissed Celiac as the cause of my problems...despite the fact that all of my symptoms/problems disappeared while gluten-free. He said he doesn't know what is wrong with me, but that he could give me a Cortisone shot to clear up my rash. I declined the shot at this point, because my rash is better today than it was yesterday.

I'm frustrated, because I don't feel like he's taking me seriously or even hearing what I say. I am going to continue to be gluten-free, because I know that I feel better when I am, and that I have an immediate reaction when I eat it. I just wish I had an official label to go with it.

[Coinkey]

After I told my doctor that I felt better than ever going gluten-free, and then had a major reaction yesterday after eating gluten, he informed me that my blood work was negative. He essentially dismissed Celiac as the cause of my problems...despite the fact that all of my symptoms/problems disappeared while gluten-free. He said he doesn't know what is wrong with me, but that he could give me a Cortisone shot to clear up my rash. I declined the shot at this point, because my rash is better today than it was yesterday.

I'm frustrated, because I don't feel like he's taking me seriously or even hearing what I say. I am going to continue to be gluten-free, because I know that I feel better when I am, and that I have an immediate reaction when I eat it. I just wish I had an official label to go with it.

I always imagined it would be easier to swallow the whole gluten free diet idea if I had doctor confirmed celiac's disease. Unfortunately, nope, negative blood tests and a swift "it would be a waste of time to do a biopsy" from the doctor. I know your frustration and have had a hard time convincing myself that it's not all in my head. Luckily, my fiancee has begun to understand and is there to cook me amazing meals when I'm feeling really down about it. I found it easier to cope with the decision to remain gluten free before I went in for testing because now I have a little niggling voice in my head saying what the doctor told me which was : "Maybe the reactions will clear up in a few years and you'll be able to eat gluten again." Thanks for the false hope jackass. Point is: keep going, it's not just in your head and so many people have had negative tests but extremely positive results by going gluten free. The positives really do outweigh the negative. when I'm positive and energetic my dinners are interesting and FANTASTIC because of all the tips my fiancee has taught me - My mantra when I'm having a bad day.

[Roda]

If you think your rash could be dermatitis herpetiformis you could have it biopsied. If that is positive you are celiac. You need to have the derm biopsy the area next to the lesion and NOT the actual lesion. There are others on here that have this that can give you better advice than me. Here is a link:

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[Skylark]

So you eat something, it makes you sick, and your doctor tells you it's in your head? This is not your problem, but rather your doctor's. No he is not taking you seriously and no he is not hearing what you say at all. Fire him and get a doctor who listens. Remember, you are the consumer and he is providing the service, not the other way around as some doctors seem to believe.

Looking for an official label is not necessarily going to help either. What will the label do, besides make it harder to get insurance? If you had an allergy that didn't show up on blood tests, wouldn't you still avoid the thing you react to? My doctor tells me how lucky I am that I tried the diet and didn't rely on unreliable tests to discover my gluten sensitivity. Pretty different, huh?

[firefightersgal]

Looking for an official label is not necessarily going to help either. What will the label do, besides make it harder to get insurance? If you had an allergy that didn't show up on blood tests, wouldn't you still avoid the thing you react to? My doctor tells me how lucky I am that I tried the diet and didn't rely on unreliable tests to discover my gluten sensitivity. Pretty different, huh?

When I called my mom to tell her how frustrated I was she said, "It doesn't matter what the doctor said. What could he do for you, anyway? Since it is all controlled by diet, YOU are in control, not the doctor. You know what makes you feel better, so do it." I need to listen to her.

Without the positive blood test, I don't think anything I could say would make him accept what I feel as fact--and that is maddening. I'm not a hypochondriac! If nothing else, he can see that my rash is very real.

[YoloGx]

When I called my mom to tell her how frustrated I was she said, "It doesn't matter what the doctor said. What could he do for you, anyway? Since it is all controlled by diet, YOU are in control, not the doctor. You know what makes you feel better, so do it." I need to listen to her.

Without the positive blood test, I don't think anything I could say would make him accept what I feel as fact--and that is maddening. I'm not a hypochondriac! If nothing else, he can see that my rash is very real.

Unfortunately most AMA docs just treat symptoms, not causes. You are being a "difficult" patient not letting him cover up your symptoms! Of course this point of view they have is inane while at the same time tragic for so many people since a lot of folks treat docs like they were mini gods. Your mom is right, don't listen to that guy; follow what your body tells you instead!

There are also now some "new" doctors that call what they do "Functional Medicine" who seem to much more on the page with their patients and willing to investigate the causes of their distress and from there how to mitigate them--starting often with diet and exercise. I suggest you find one of those new docs and in any case just keep on keeping on.

Bea

[Takala]

You could always wait a few more decades for the other major side effects and damage, like brain lesions, spinal stenosis, partial color blindness, other visual whacks, arthritis, dry mouth/eyes, hair loss, mystery rashes, neurological damage, tremors, numbness, kidney problems,etc and then have them tell you you're.... still a head case. Much of this slowly reversed itself after a diet change.

I propose we start calling this sero- negative gluten intolerance .

You can always get your genetics tested to see if you're in the 30% of the population carrying the HLA DQ types which pre dispose you to being celiac or gluten intolerant. Lyme disease is the other thing that can cause gluten intolerance.

[Skylark]

Without the positive blood test, I don't think anything I could say would make him accept what I feel as fact--and that is maddening. I'm not a hypochondriac! If nothing else, he can see that my rash is very real.

You take your car to a mechanic because it's been making a noise. When you start the car up there, it doesn't make the noise and the mechanic doesn't believe you. He hooks the car up to the computer, which doesn't find anything and he laughs at you and says you're imagining things. You get frustrated and leave, deciding not to go back to that garage again. You tell your friends how bad the garage is too.

The car starts making the noise again and you go to another mechanic. Again the car doesn't make the noise at the shop and the computer doesn't give any helpful information. THIS mechanic listens to you though, and believes you that the car sometimes makes a noise. He looks around at the engine for a while, finds a worn belt, replaces it, and the car stops making the noise. This mechanic has earned your business and you'll probably recommend him to friends.

Your current doctor is the first mechanic, not the second.

[i-geek]

Your story sounds like mine. I did my own gluten-free trial and gluten challenge before seeing the doctor, who didn't run a complete test panel. When the one test she did run came back negative, she declared me fine, decided that I must be stressed out due to grad school, refused to run any more tests as "celiac disease is very rare", and told me she was worried about my calcium intake and that I needed to eat more dairy. Never mind that I'd explained that my symptoms only started to resolve when I went off gluten, or that autoimmune disease ran on both sides of my family, or that I'd had 15 years of unexplained digestive problems plus infertility, or that I'd already told her that I couldn't digest any dairy. She reminded me that there were lactase supplements; I then reminded her that I'd already explained that even if I took several of them, I'd still spend the next hour in the bathroom wishing I were dead. It was like talking to a wall. She flat-out refused to believe that I had a problem with gluten.

I decided that I must be a crazy hypochondriac so I decided that Christmas 2009 would be the litmus test: four days of family food parties, with Christmas Eve being the first. I skipped the obvious breads at my cousin's Christmas Eve party, and spent Christmas day feeling like I was going to pass out. Took communion at church that day and ate a piece of my aunt's cheesecake that night, and was completely constipated the next day. Ate whatever I wanted at the in-laws' on the 26th, then some bread and cookies for breakfast on the 27th. Spent most of that morning silent on the in-laws' living room floor since the mouth sores that flared up with the bread were making it difficult to talk. I diagnosed myself at that point and went gluten-free cold turkey. I was sick of feeling awful and decided that I didn't want to wait until I developed rheumatoid arthritis or diabetes like some of my relatives. Now I have no more headaches, no more GI problems (unless I'm CC'ed or accidentally glutened), and I can eat dairy again. I suspect I also have celiac-related Sjogren's syndrome but that only really flares up badly when I've been CCed. It really isn't in my head, either; I've eaten things that I had been assured were gluten-free, had symptoms flare up, then went back and did some digging to find that a single unsafe ingredient had been added.