Negative to positive blood test?

Hi everyone, this is my first time posting here.

I've had a shlew of health problems for the last decade to be honest, mostly severe food allergies (allergic mostly to shellfish, bad enough that I can't eat places where it's served so I cook almost all my own food, as well as to corn, a number of leafy greens, all nuts, and a buttload of fruits) and IBS-D symptoms as well as general crappy-feeling (low energy, muscle weakness, weight loss, headaches, itchy skin, palpitations, etc). When I first started getting serious IBS symptoms six years ago, I went to a gastroenterologist who tested me for a number of things, one of which celiac disease but the test came back negative (but I did, at the time, test positive for hyperthyroidism, which magicked itself away because all my thyroid tests since have been clear or "high normal"). I found out that I was lactose intolerant six years ago as well, and since going completely off all milk products my stomach issues improved for a while, until this year when they all came back with a vengeance. Since I feel just as bad as I did six years ago, I went back to the doctor who is convinced I have celiacs even though I didn't have it six years ago. After looking around online, I do have every single one of the symptoms (beyond the ones I've mentioned, I'm anemic without cause, have "brain fog," a high resting heart rate - 77 bpm - increased anxiety and hand tremors - could be my thyroid again, who knows - and have gone from weighing 116 to 108 at 5'7" even though I'm hungry all the time, and have weird and infrequent periods...sorry if that's TMI), so...I guess it's possible?

I guess my question is, has this happened to anyone else? Will the blood test still come back negative? I just took the test yesterday so I'm still waiting on results (2-4 weeks, sheesh!). I've read online that the test can be negative while you still have the disease, so I'm considering going completely gluten free for a while to see if that helps improve my symptoms. To be honest, I'd be overjoyed if it was celiacs just to know what it is that's wrong with me, but I am seriously dreading cutting all gluten out of my diet after reading horror stories about cross contamination with other grains (I eat a lot of rice right now, which I know is safe, but it comes in a package - not with seasoning, but you know, a bag of rice - and now I'm all freaked out that there's cross contamination and I'm still eating gluten without knowing it!). I'm trying to purely cut out all gluten so I can be sure whether or not it's gluten that's causing my problems. I can say this though: while taking the "gluten challenge" before the blood test I certainly felt like crap!

Also, I'm a little worried about medications that contain gluten. I regularly take tylenol and claritin (I live on claritin because of severe allergies, both food and nasal ones, so I take two of those a day...). Please tell me those don't include gluten! :D

Anyway, if anyone has been in my situation I'd love to hear your stories. Also, any recommendations on books for making meals that are gluten free and lactose free? And that preferably don't require corn or leafy greens? :) Thanks in advance!

Thanks Razzle for your reply! I'm happy to hear that both tylenol and claritin are a-ok since I can't foresee any way to go off of them at the moment. Thanks for the link! I'm interested in taking the gene test to see if I have the genes for it - it seems that northern europeans are the most likely to carry the genes and that's where my family hales from, so I wouldn't be surprised if I have them. It's interesting that you don't have to go back on gluten in order to take their tests - fascinating. I wonder how that works! The tests are a little pricey, though still cheaper than the blood test I had this week for sure, so I'm going to try the elimination diet for the next month or two and see how it goes. Even after three days I'm already feeling better though not 100%, so I'm seriously starting to think it's possible this is the cause, even with a negative blood test in the past.

I've heard a lot about the paleo diet but I'm a little concerned with how heavily it relies on nuts since I'm allergic to all of them. :/ I found a site called yummly today that aggregates recipes across a lot of food blogs which allows you to limit the results you receive based on dietary restrictions like no wheat/gluten free, so I found a lot of good recipes that way. :) I recommend it!

Oh, good to know! Thanks for that. :) I'm, so far as I know, not allergic to coconut but it wasn't actually on the allergy test I took, but I might give it a shot to see how I do with it. :)

It doesn't matter if the test says you have Celiac or not, if you feel better off gluten. Besides, the gold standard for food intolerance or allergy is: if it causes symptoms when eating it, the symptoms disappear when you don't eat it, and the symptoms return when you eat it again, then you are sensitive/allergic/intolerant and need to avoid it.

There are plenty of very healthy foods that are gluten-free.

It takes a minimum of 6 weeks for the body to clear gluten out of the gastrointestinal tract tissues, and another 6-8 weeks (or longer) for the gut tissue to heal after exposure to gluten is gone.

If gluten affects your nervous system (some get Ataxia, Seizures, etc. from gluten), it can take up to 1 year for gluten to leave the brain/CNS. Healing nerves is very slow, it takes years.

So there is no one simple answer to how long should it take before your symptoms from gluten go away. But the range would be days to years. Most people who have a gluten intolerance/sensitivity/allergy/Celiac start to see improvements within a few weeks.

I am also waiting on results (from bioposy instead of blood) A few years ago when my blod test came back negative the nurse at my GI office told me that Gluten sensitivity can have exactly the same symptoms as the actual allergy and she suggested I go off all Gluten just to see. I have been contemplating it but dread because I know I will have carbohyrate withdrawls because I live mostly on carbs (and not the healthy ones) because a lot of carbs like bread are soft and digest easier for me than meat but it has gotten to the point where I am not going to have a choice because food makes me so sick right now. FYI my 20 year old son who has had bad acne, ADHD, possible fibromyalgia went off gluten and he is clear of acne and says he feels so much better and has more energy off Gluten.