Negative Blood Test...but Lots Of Celiac Symptoms!

[christybeasley]

I'm getting frustrated! I'm a 5'10'', 29 year old and I currently weigh 103 lbs. I've always been thin and had stomach issues. I'm pretty tough though, and don't complain about much. But over the last couple of months, everything I eat upsets my stomach and I have to be close to a bathroom at all times. But other times, I just hurt really bad and I'm constipated. I have an aunt who after a few weeks in the hospital was diagnosed with Celiac through lots of testing. She always told me to be aware of it because I'm also lactose intolerant and very thin. I finally broke down and went to the doctor and received negative test results for Celiac. But I just really can't hardly believe it. I've done my research on this for months, and I have sooo many of the symptoms, many of them being the very specific ones. I'm just tired of being sick and don't know what to do next. Some people have told me to just try the gluten free thing...but then what do I call myself? I'm so confused...but tired. Any help would be appreciated!

Thanks!

[Lisa]

Welcome Christy,

The diagnostic tests available are not as accurate as we would like. And if you feel the shoe fits, try the diet. It needs no RX from your doctor. Many people here are self diagnosed and feel comfortable about that decision.

If you have a positive dietary response to the diet, with a family history, you very may have Celiac or a gluten sensitivity.

The diet is tricky in the begining. There are lots of people here who can help you through it.

And what do you call yourself? How about "on the road to good health"?

[Mother of Jibril]

Welcome to the group!

A negative blood test doesn't rule out celiac (did they test your total IgA?) and it certainly doesn't rule out gluten intolerance. Give the gluten-free diet a try! It won't hurt you and it could help a LOT. The people on this forum are a great source of advice. I had to give up dairy, gluten, and corn, but I still find plenty of yummy things to eat If the diet works for you, feel free to say that you have "gluten intolerance." Honestly... it can cause just as many problems as true celiac disease.

If the diet does good things for you, there's always the genetic test. It can't diagnose celiac (the autoimmune destruction of your intestines), but it does indicate your level of risk.

[AliB]

Many who are supposedly 'Celiac' don't get better after dropping gluten or get better for a little while then get bad again. What they are suffering from is Gut Dysbiosis. This happens to a lot of people and can be triggered by many things - stress, trauma, drugs. The worst culprit of those is anti-biotics because they kill the good guys as well as the bad. If the soldiers and defenders of the gut are destroyed there is nothing to protect it from attack.

A lot of gut damage may well be due to rogue bacteria and/or parasites. Medical Science is just beginning to pick up on this and different sources of research are starting to be done but little is still known about this field and may well never be understood fully. We carry at least 500 different strains of bacteria in and on our bodies - some are beneficial, some are benign and some can be downright pathological, even the ones that are benign or even beneficial in small amounts like Candida for instance, if they get out of control.

The rogue bacteria feeds on undigested carbs - of which our damaged guts supplies them with plentiful amounts, especially on gluten-free as gluten-free foods are typically very high-carb.

Many of us with similar problems are gaining relief on the Specific Carbohydrate Diet which removes all the troublesome carbs including gluten, encourages digestive replenishment of the good bacteria and helps the gut and the body to heal. There is a thread on this section if you want to know more and you can have a look at the 'Breaking the Vicious cycle' and 'Pecanbread' websites for more info on the diet.

Ali

[caek-is-a-lie]

Oh man, I'm 5'10" and people think I look anorexic at 140 (which I'm not right now, btw...except in my dreams...lol)

I got a negative result on my blood test 10 years ago (Celiac runs in my family), but now I'm having tons of symptoms and my doctors ignore me, so with no hope of ever being tested, I just went gluten-free myself. It's worked pretty well. I say if you can't get help from them, just do it. There's no rule that says you can't choose what you eat. If people ask, tell them you're gluten intolerant. If they ask "is that like Celiac?", say yes. It's just like Celiac. No one is going to ask you for a certificate declaring proof of dx to take your order at a restaurant, and if it helps you get healthy, why not.

That being said, if it doesn't help in the long run, then don't rule out other possible causes of your symptoms. Maybe you can keep a diary of what you eat and your symptoms are to find any patters that emerge. It's worth a try. I'm feeling frustrated myself at times...this is new to me too and I'm so frustrated with gluten showing up in places I'd never dreamed it could be. Argh.

[Fiddle-Faddle]

If you were gluten-free or even gluten-lite when your blood was tested, that would be why the results were negative.

Apparently, you need to be eating 3-4 pieces of gluteny bread per day for 3-4 MONTHS in order to do enough damage to test positive.

Bummer, isn't it?