Negative Blood Work?

[holichka]

Hello! I am new to this forum, but I have been pleased with the support that this site seems to offer a lot of people.

I have had GI problems for the past 4 years... LOTS of bloating, gas, pain, feeling full, occasional heartburn, tremors in the intestines after eating, fatigue and chronic diarrhea. These symptoms have been going on almost every day to varying degrees. I have seen two GI Drs. who have tested me for celiac (blood test) and chrone's which have come back negative. The first GI misdiagnosed me with lactose intol. (which didn't help at all!) and the second GI did an upper GI xray and colonoscopy and told me I had IBS. However, the changes I made in my diet to supposedly help IBS made it worse. I tried taking probiotics (which made things worse too!) and numerous other supplements.

Last week, I talked with a nutritionist who recommended I try the gluten-free diet for 4-6 weeks since it was the last thing I could do for my diet. Alas, I have had almost no symptoms since the day I started- no more smelly gas, no bloating or pain, only on little stomach ache that lasted for an hour or so! I feel like a "normal" person again. However, I am wary about sticking to the gluten-free diet forever if I do not really have celiac. Is it possible that my blood work could've been wrong twice? Should I just continue with the diet since it is the only thing that has helped?

thanks for any advice!

[cyberprof]

Holichka, welcome.

Yes, I had negative blood work but I had a positive diagnosis based on a biopsy, conducted via an endoscopy of my small intestine/duodenum. I, however, did not have "blunted villi", which is a sign of much damage to the small intestine, I only had cellular evidence of damage, which was enough to give me the sympots that you list below and more (depression, anxiety, joint pain to name a few). My point is that if you don't *YET* have enough damage, you may have a negative blood test (or the test might not be very accurate/sensitive) and still have celiac. Or you could just be gluten intolerant, still have all the symptoms but just not have celiac.

The only problem you have now is that once you've been gluten free, further tests (like the endoscopy) may be inaccurate because the damage (and the cellular changes) start to heal or go away once the gluten is removed.

My advice would be to go with your *gut* and stay gluten free. Hope this helps and be sure to ask more questions if you have them. The people here are awesome!

Hello! I am new to this forum, but I have been pleased with the support that this site seems to offer a lot of people.

I have had GI problems for the past 4 years... LOTS of bloating, gas, pain, feeling full, occasional heartburn, tremors in the intestines after eating, fatigue and chronic diarrhea. These symptoms have been going on almost every day to varying degrees. I have seen two GI Drs. who have tested me for celiac (blood test) and chrone's which have come back negative. The first GI misdiagnosed me with lactose intol. (which didn't help at all!) and the second GI did an upper GI xray and colonoscopy and told me I had IBS. However, the changes I made in my diet to supposedly help IBS made it worse. I tried taking probiotics (which made things worse too!) and numerous other supplements.

Last week, I talked with a nutritionist who recommended I try the gluten-free diet for 4-6 weeks since it was the last thing I could do for my diet. Alas, I have had almost no symptoms since the day I started- no more smelly gas, no bloating or pain, only on little stomach ache that lasted for an hour or so! I feel like a "normal" person again. However, I am wary about sticking to the gluten-free diet forever if I do not really have celiac. Is it possible that my blood work could've been wrong twice? Should I just continue with the diet since it is the only thing that has helped?

thanks for any advice!

[wowzer]

I had negative blood work, but tried the gluten free diet. I had some DH symptoms and neuropathy that went away when I went gluten free. I had been itching for almost a whole year. If the diet is working stick with it.

[holichka]

Thanks for your responses! Has anyone else had negative blood work like what I've described?

[lonewolf]

All 4 of my kids were tested and they all had negative blood work. Two of them had symptoms and went gluten-free anyway. They both have done well and are permanently off gluten. Luckily, their pediatrician is supportive of "the plate test" as he calls it (dietary response) and agrees that gluten-free is the best thing for them.

[blueeyedmanda]

My bloodwork was positive, but I tried the diet while waiting for the blood results, I saw enough in those few days to not really bother with the result. I felt so much better.

[holichka]

Great! Thanks everyone! For now, I'm planning on staying off gluten forever I feel SO much better!! One thing I am so sad to say goodbye to though is oatmeal... is there a safe place/brand/way to buy it? What other bfast foods do you guys enjoy?