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Opinions? Ideas?

Alsbagalls12

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Alsbagalls12 Newbie
Alsbagalls12
Posted

Hi there! I am 23 years old (will be 24 next week--wahooo lol) and I have been wondering what has been going on with my body for about 5 or 6 years now. I've always had trouble sleeping, so it seemed natural to have many headaches and migraines and also to be tired all the time. I also had kidney stones in high school (and beyond), so that is how my doctors explained away my constant back pain. I had stomach pains which the doctors thought was endometriosis, but after I had a laparoscopy they found nothing related to that diagnosis.

So after the doctors stopped finding kidney stones, found I don't have endometriosis and had enough trying to fix my sleeping problem, I tried to figure out what was wrong on my own. My back pain is constant and can sometimes be so severe that I've missed work. My stomach pains make me feel very nauseated (I'd get sick after meals, it seemed) and combined with my dizziness (I've fainted a couple of times) it makes regular activities seem extremely difficult. I was taking pain medication for a very long time, which just ended up being a problem in itself. It's very hard to lead any kind of productive life when you are hopped up on Percocet and then want to sleep for 12 hours.

So, this is my dilemma: I ran across the idea of gluten intolerance while searching the web, and a lot of the symptoms made sense. I read a book on it and started to cry because the situations sounded so familiar. I decided to try going gluten and wheat free to see if it helped at all. I began to feel better within a week. My back pain has not disappeared completely, but my mind feels clearer than it has in a long time, I am MUCH less grumpy (which makes my boyfriend very happy :P) and I am sleeping through the night for the first time in who knows how long.

For my own selfish reasons, I wanted to get the blood test just to reassure myself that I wasn't just making up my recovery in my head. I like to know things for a fact and especially if I am going to give up my favorite foods I want to make sure that it's actually necessary! The blood test came back negative, however, and I have been discouraged. My doc said that it's possible it was a false negative because I have been on the diet for a couple months, but he said my symptoms don't really sound like Celiac.

My family and friends have been telling me that I should just stick with the diet because it seems to help, but in the back of my head I worry that I've misdiagnosed myself and that I might not know what is actually wrong with me. I feel very frustrated and alone, and I guess I'm just looking for anyone's opinions and/or ideas.....

Sorry for the novel!

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jackay Enthusiast
jackay
Posted

For peace of mind, go back on gluten and see what happens. If the pain gets worse and the insomnia comes back, you have your answer. If it doesn't get worse, you can be rechecked after a couple months of eating a lot of gluten and see what the test results show.

newgfcali Rookie
newgfcali
Posted

Another option is to take the Enterolab test. I took it after being gluten free for over three months and my test still came back positive. The antibodies stick around long after the offending gluten is gone. And the Enterolab test is extremely sensitive. They can also test you for other immune reactions, like dairy, soy, yeast, eggs, so you can get a better picture of what's going on.

Additionally, they can test your genes to see if you're genetically predisposed to being Celiac or gluten sensitive.

Alsbagalls12 Newbie
Alsbagalls12
Posted
  • Author

For peace of mind, go back on gluten and see what happens. If the pain gets worse and the insomnia comes back, you have your answer. If it doesn't get worse, you can be rechecked after a couple months of eating a lot of gluten and see what the test results show.

I guess I forgot to mention that I had emergency gall bladder surgery, and after that I went back to eating "normally" with gluten and wheat. I thought maybe my gall bladder was my problem. But once I started eating all that stuff again I got incredibly irritated and easily frustrated. I also got my headaches about ten times worse and I couldn't sleep. My back and stomach pain was also causing me a lot of pain so I missed some work. So.... I guess I've already kind of answered my question :)

laurie9141 Rookie
laurie9141
Posted

hi, have more and more tests get definitive answers! Im 47 and have been struggling to find the answer... NOW doing it myself! if dr doesnt send you to gastro / celiac guy.. then find one yourself... like you, I have no interest in eating an expensive, tasteless, never-can-find-a-food-to-eat-in-a-restaurant diet. if I dont have to... have been off of gluten (that I know of) for only a few days, still taking ambien. hate it... this diet is by no means easy...and I am hungry!

I have alot of other food sensitivities, you may have them too.. so when you DO see a dr.. insist on allergy tests too, at least for the major stuff like dairy, oats, tomatoes, rice!! no point in substituting crap like almond milk, or oats for dairy and wheat, if like me, have sensitivities... wont be able to discern the difference!

spend time feeling bad or spending money and get it right.. waiting to schedule the endo test myself... No one is going to really care how you feel, but you.. I am finding, even w a so called "Cadillac" insurance.. You have to do it yourself. would have saved thousands of dollars on medicines and copays and tests and YEARS of my life if I'd have found this sooner.. like 24... stay strong..

bluebonnet Explorer
bluebonnet
Posted

blood tests often come back false negative regardless if you've already started a gluten free diet or not. and don't listen to just 1 doctor. it sounds like you could definitely have an intolerance. my first test came back negative and my second positive along with the genetic testing with dq2 and 8.

for your physical and mental health keep working towards a definitive test result ... you will *know* and that will also help you stick with the diet rather than wondering *if* you really are celiac or not. hope you feel better soon! :)

Alsbagalls12 Newbie
Alsbagalls12
Posted
  • Author

blood tests often come back false negative regardless if you've already started a gluten free diet or not. and don't listen to just 1 doctor. it sounds like you could definitely have an intolerance. my first test came back negative and my second positive along with the genetic testing with dq2 and 8.

for your physical and mental health keep working towards a definitive test result ... you will *know* and that will also help you stick with the diet rather than wondering *if* you really are celiac or not. hope you feel better soon! :)

Thank you for your support and suggestions! It's nice to hear that I'm not the only one who has gotten a negative test and still wanted answers. I'll definitely keep pushing for more tests....I can stubborn about those kinds of things :) I just keep telling myself that it could be a LOT worse and that I'm lucky that I've found something that gives me some sort of relief.

Thanks again!

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