Blood Work Negative: Bioposy Questionable: Gene Positive, Am I Nuts?

[AllieB]

I just completed my formal testing for celiac disease and I'm still confused.... any insight would be great.

I have been tested for the IgG levels for celiac no less than 3 times. Once before I got off gluten, once after I got off gluten, and once when they were checking for reasons due to my two late miscarriages (one at 11 weeks and one at 17 weeks)

After my second child was born (16 months after my first child was born) my body went haywire. I had digestive issues, migraine headaches that caused me to sit debilitated on my kitchen floor, trying to watch a one and two year old, when I could hardly stand the light and noise. I had "reactions" that caused intensive vomitting, intermittent diaherria, hours where all I could do was lay in bed with ice pack on my head. These classic migraines were missing one key element, the head pain. Debillatating yes, painful no.

First I went off dairy to no sucess. Then I went off of gluten, even though the dr said I didn't have celiac disease. Within two days my symptoms started to receed. My stomach balloon left, my migraines became infrequent and then with the withdraw of caffeine, non existent. I went back to the GI who sorted of shrugged and said that I just felt better without gluten and no matter what he said or did, I would do the diet anyway, so did it actually matter?

I limped along this way for a couple of years. No formal diagnosis, scoffing parents and in-laws, and I was mostly gluten free. I still indulged, and when I did, I didn't get a stomach ache, or a headache, but I did have other weird things crop up after I hit a sort of gluten build up amount.

Then I got pregnant again, and after a horrible pregnancy (hyperemsis with constant nausea and vomitting) I lost the baby at 17 weeks. I followed up with another pregnancy later that year, which I also lost at 11 weeks. The babies and I were fine in any way that a doctor could check. (My second celiac check) But I'd had enough and decided to get formal testing done.

This completed last Friday. My genetic test for celiac was positive, my blood test (third time) was negative. The endoscope showed inflammation in the small intestine that could be due either to the bacteria that causes ulcers or to inactive celiac (in remission per say) Since they haven't called me and said I have the bacteria that causes an ulcer, I assume the only explanation is celiac disease which is better, although not cleared up. The GI, (A Mayo Clinic doctor at that) looked confused, shrugged and said almost the same damn thing the other guy said. 'We don't know if you have it or not, you're already following the diet, you might as well stick with it.'

I am assuming now that with the diet results, the genetic test, and the bizarre inflammation that it is as positive for celiac as I'm ever going to get.

Has anyone else had this problem? I have had stomach problems for over 10 years, exerabated by the pregnancies, but no explainations and a whole bunch of dismissive doctors, who look at me blankly. Can your blood work be negative and still have celiac?

I have now adopted a completely gluten free existance, something that I never had completely done. As my recovering alcoholic father would say... "I'm Allie, It's been five days since I've had my last gluten"

Is this experience common? Can celiac disease hide? Has anyone else had trouble with miscarriages?

Thanks for any insight or comments. It would be the different between logically knowing I'm not crazy, to feeling like I'm not crazy. Because right now, this all seems nuts.

Allie

[Nancym]

The tests are often falsely negative or inconclusive and so many of us have to believe that dietary response is the best test of all. If it is important to you, ask your doctor for the diagnosis based on dietary response. If not, then just stick with the diet anyway!

Genes can't really determine it. You could have the genes but it might not be active in you. Still, you got 3 things pointing to the disease: Damage in the small bowel, positive dietary response, and the genes. Not to mention the boat load of symptoms.

What have you got to lose by going gluten-free? You'll adapt, your family will adapt. Everyone will be healthier.

[CMCM]

If you have a recognized celiac gene, the potential is there. My understanding is that for a blood test to be positive, one has to have a certain level of intestinal damage in order for the antibodies to be clearly noted in the blood. If you have a negative, it could merely mean your level of damage isn't great enough yet to show up in the blood.

I don't know why everyone wants to dismiss symptoms. If symptoms exist but diminish or go away on a gluten free diet, that's hugely important. Why on earth suffer the symptoms and continue eating gluten until you get VERY sick and therefore will be diagnosed because it's all so severe and obvious....or worse, until your continued gluten eating leads to such an internal state of inflammation that OTHER auto immuine diseases develop.

We should not be so obsessed with a solid diagnosis that we ignore common sense. There's a saying "Just because you CAN doesn't mean you SHOULD." Apply this to the eating of gluten. Gluten is everywhere, it's in everything, it's pushed by everyone and every company because it's useful, it's convenient, people love the products it's in. So you can eat it till it comes out your ears (and most people DO!), but that doesn't mean you or anyone else should eat it. I've increasingly come to the opinion that gluten probably is not good for anyone, and it's poison for many of us. All sorts of horrible foods are out there and available for eating, but that doesn't mean we should eat them. It's just that gluten is so ingrained in our diets, it's hard to conceive of cutting it out.

In any case, you have the gene, you have the potential, so be glad you are forewarned about it and don't learn the hard way. One thing is for sure: you will never be worse off for eliminating gluten. Your health will most likely be far far better for its elimination!

[lizard00]

I think my problems began after my son was born. Pregnancy can definitely be a trigger. I had headaches daily and my fatigue became increasingly worse over a period of about a year and a half. I took myself off gluten after I did an elimination diet, so by the time I was tested, it was too late.

It sounds to me that if you have some intestinal inflammation, the genetic predisposition to Celiac, and very tangible results on the gluten-free diet, you need to avoid gluten at all costs. Did you see your test results? The reason I ask is because my IgA is far below the normal range, and I believe that a low IgA number skews the results of the IgA based tests. And many drs only do the IgA based tests, as mine did. So, for me, there are many things that lead me to believe that I have Celiac, but until the criteria changes for an official diagnosis, I'll never know.

You pretty much already have your answer. Have you ever seen a complete list of symptoms? It is HUGE!!!! Something like 200 or more. And fertility problems are on every one of the lists, so you are definitely not alone on that one. Keep up with the diet, you already know the benefits!

[AllieB]

We sound like we have been on the same path. My IgG is low (7 to be precise) I don't have current IgA reading, but that was low too. My IgM (what ever that one is) is also low, but I think that had to do with my body attacking the fetus, which I guess it didn't do.

But I can see this disease around me through generations of my family. My mother, who has fibromyalgia, my grandmother who refused to eat donuts because they made her sick, my aunt who died of colon cancer, my mom's aunt who died of stomach cancer. It's just maddening, makes you feel like you are going crazy. Because it's there and I know it's there, but a firm diagnosis is out of reach.

I think my problems began after my son was born. Pregnancy can definitely be a trigger. I had headaches daily and my fatigue became increasingly worse over a period of about a year and a half. I took myself off gluten after I did an elimination diet, so by the time I was tested, it was too late.

It sounds to me that if you have some intestinal inflammation, the genetic predisposition to Celiac, and very tangible results on the gluten-free diet, you need to avoid gluten at all costs. Did you see your test results? The reason I ask is because my IgA is far below the normal range, and I believe that a low IgA number skews the results of the IgA based tests. And many drs only do the IgA based tests, as mine did. So, for me, there are many things that lead me to believe that I have Celiac, but until the criteria changes for an official diagnosis, I'll never know.

You pretty much already have your answer. Have you ever seen a complete list of symptoms? It is HUGE!!!! Something like 200 or more. And fertility problems are on every one of the lists, so you are definitely not alone on that one. Keep up with the diet, you already know the benefits!

[AliB]

Pregnancy and fertility problems can certainly be a very strong indicator especially linked with all your other symptoms.

Although it was not suspected until 4 weeks before she died, my Mum was almost certainly Celiac. She was diabetic, anemic all her life and had me followed by a stillborn, then 10 miscarriages.

Blood tests often come back negative (as mine did) and a biopsy will only show up as positive when the damage to the gut has reached the very worst state when the gut has all but collapsed.

Any damage to the lining of the intestine, even low-level, will impact on the way the body absorbs nutrients. Any malabsorption, even low-level, will impact on the way the cells work. The worse the damage, the worse the malabsorption, the worse the health problems.

All your markers certainly point to Celiac.