Questions

[mozy]

I went through testing for celiac disease about 7 years ago and honestly don't remember much of it except that I went on the diet before I was supposed to and that the second test came back negative. I brushed it to the side and never thought about it again until recently.

I was diagnosed as lactose intolerant and have not been very strict on the diet, so I've always had stomach problems. Recently, sick of being sick, I stopped having any dairy products, but my symptoms have not been alleviated. I still get incredibly bloated after eating (I look pregnant half the time) and I still get the stabbing pain.

This caused me to do some research on celiac disease and I was pretty surprised with what I found. I have symptoms that I didn't even know where symptoms. I was diagnosed as bipolar at a young age, which apparently is a symptom. I also have always had joint pain, low tooth enamel, struggled with gaining weight as a child, fatigue, and low blood pressure (not sure if that one is a symptom but found it common on several searches)

I have also been seeing a doctor about issues I have been having with dizziness and fainting spells, but even though she has run several tests, she can't find anything wrong with me. Apparently these are also symptoms.

But that second test came back negative. Is it possible to get a false negative from a gluten free diet? I was only off it for a month at the most.

[ravenwoodglass]

Yes being on the diet will certainly cause a false negative. Even on a full gluten diet the false negative rate is about 20%. You can either go back on gluten for about 3 months and then get retested or you can just continue with the diet. If you choose to go back to gluten for testing be aware that if you become very ill from the challenge your body is really giving you the answer.

[mozy]

Yes being on the diet will certainly cause a false negative. Even on a full gluten diet the false negative rate is about 20%. You can either go back on gluten for about 3 months and then get retested or you can just continue with the diet. If you choose to go back to gluten for testing be aware that if you become very ill from the challenge your body is really giving you the answer.

I was only off gluten for about a month 7 years ago. I've been eating normal since then and like I said, I thought that all my stomach problems were from lactose but I've been dairy free for a couple weeks and the problems have not gotten any better.

[Skylark]

You mention the "second test" was negative. What was the first?

[mozy]

You mention the "second test" was negative. What was the first?

I really don't remember, I was young. I'll have to ask my mom.

[ravenwoodglass]

I was only off gluten for about a month 7 years ago. I've been eating normal since then and like I said, I thought that all my stomach problems were from lactose but I've been dairy free for a couple weeks and the problems have not gotten any better.

False negatives are not uncommon even on a full gluten diet. After you are done with all testing you choose, both blood and biopsy then give the diet a good shot. Just because the test was negative 7 years ago doesn't mean it would be negative now so if you haven't had a panel run recently have one redone and get the endo if you choose to and then try the diet.

[mozy]

I went to my doctor today and asked for the tests. She asked what my symptoms where, pressed on my stomach and then said I had "severe gastritis" and then gave me meds that I've been on before and that I know don't work. When I asked her if it had any correlation to my dizziness and fainting spells, she said no, that had to be something completely unrelated. I am 19, weigh 125 lbs eat healthy and exercise regularly, it seems unlikely to me that all my symptoms point to multiple disorders. My mom suggested going on the diet any way to see if I start feeling better.

[Skylark]

My "gastritis" cleared up gluten-free, along with my "irritable bowel". Good luck!

[ravenwoodglass]

I went to my doctor today and asked for the tests. She asked what my symptoms where, pressed on my stomach and then said I had "severe gastritis" and then gave me meds that I've been on before and that I know don't work. When I asked her if it had any correlation to my dizziness and fainting spells, she said no, that had to be something completely unrelated. I am 19, weigh 125 lbs eat healthy and exercise regularly, it seems unlikely to me that all my symptoms point to multiple disorders. My mom suggested going on the diet any way to see if I start feeling better.

You have a wise Mom.

[sb2178]

Nutrient deficiencies can also lead to gastritis... hmmm.... don't remember which nutrient.

[kareng]

I know you are technically a grown up, but sometimes have a mom with you at the doctors helps. Just have another person to back you up or insist on tests. You may want to try another doctor, too. At the least, they should be able to order the blood test for you. I know my GYN sent me to a regular doctor for follow- up of iron and other deficiencies. She said to make sure they test for Celiac. The regular doc wouldn't have done it. They looked at me & said I wasn't skinny enough. I said not everyone with celiac disease is skinny and she insists that I get tested. I think the pushing by me & the fact that the other doc wanted it, made him do it.

[mozy]

Alright, I started the diet about 5 days (or so) ago and I'm already feeling a little better. Every meal doesn't make me feel like I just ate a feast, at least. How long will it take for the psychological symptoms to go away?

Also, I just wanted to say that I was really bummed because we are having a birthday party for me this weekend and I thought that I wouldn't be able to have cake, but my dad called around and found a cake shop in my town that makes gluten free cake. Big surprise and really made my day.

[ravenwoodglass]

Alright, I started the diet about 5 days (or so) ago and I'm already feeling a little better. Every meal doesn't make me feel like I just ate a feast, at least. How long will it take for the psychological symptoms to go away?

Also, I just wanted to say that I was really bummed because we are having a birthday party for me this weekend and I thought that I wouldn't be able to have cake, but my dad called around and found a cake shop in my town that makes gluten free cake. Big surprise and really made my day.

Glad your feeling a little better. It can take a little while for the psychological effects to go away. Hang in there. Betty Crocker has come out with some gluten free mixes you can check out also.

[Skylark]

Alright, I started the diet about 5 days (or so) ago and I'm already feeling a little better. Every meal doesn't make me feel like I just ate a feast, at least. How long will it take for the psychological symptoms to go away?

Also, I just wanted to say that I was really bummed because we are having a birthday party for me this weekend and I thought that I wouldn't be able to have cake, but my dad called around and found a cake shop in my town that makes gluten free cake. Big surprise and really made my day.

Nice! I'm glad you are feeling better and that you even found a cake. So you know, the Betty Crocker gluten-free mixes are really good. I love the chocolate cake mix.

It took a while for my bipolar symptoms to go away. Your gut has to heal so you absorb the nutrition your brain needs to stabilize, and then your brain has to "fix" itself. I take a special vitamin supplement designed for people with bipolar along with the gluten-free diet, but it's pretty expensive. You might find a B-complex supplement helpful. Fish oil and choline capsules are also good if you're feeling hypomanic.

[RunningOnEmpty]

I ate a "mostly" paleo, gluten-free diet back in July and first part of August (of this year, 2010) then I went back to eating foods with gluten.

The gastroenterologist I saw this week was going to have me do a "gluten panel" right away, even after I had told him that it had only been a couple of weeks that I had been eating gluten again. I asked him if he thought it'd be better to wait at least a couple of weeks to build up the antibody in my blood, and he said that it would be okay if I wanted to wait a couple of weeks.

Should I really wait 3 months like you suggested to someone else or do you think another couple weeks would be long enough, since I was only "mostly" gluten free for about a month or so?

Thanks

[Skylark]

Since you weren't off gluten that long, I don't know that you would need to challenge for three months. I'm not sure why Ravenwoodglass said that but she'll likely stop by and tell you. My own doctor said if I wanted to be tested I had to eat gluten for a month a couple times a day. I decided I'd get to sick and declined the testing.

[ravenwoodglass]

I ate a "mostly" paleo, gluten-free diet back in July and first part of August (of this year, 2010) then I went back to eating foods with gluten.

The gastroenterologist I saw this week was going to have me do a "gluten panel" right away, even after I had told him that it had only been a couple of weeks that I had been eating gluten again. I asked him if he thought it'd be better to wait at least a couple of weeks to build up the antibody in my blood, and he said that it would be okay if I wanted to wait a couple of weeks.

Should I really wait 3 months like you suggested to someone else or do you think another couple weeks would be long enough, since I was only "mostly" gluten free for about a month or so?

Thanks

If you haven't been gluten free for very long then you might be able to get an accurate result with a shorter challenge. False negatives are seen even on a full gluten diet so if your blood test results are negative but you feel better gluten free continueing the diet IMHO would be the best thing to do after you are done with testing.

If someone has fully healed on the gluten free diet then 2 to 3 months back on gluten will give them the best chance of an accurate result since it can take some time for the antibodies to build back up.

[wastingaway]

If you haven't been gluten free for very long then you might be able to get an accurate result with a shorter challenge. False negatives are seen even on a full gluten diet so if your blood test results are negative but you feel better gluten free continueing the diet IMHO would be the best thing to do after you are done with testing.

If someone has fully healed on the gluten free diet then 2 to 3 months back on gluten will give them the best chance of an accurate result since it can take some time for the antibodies to build back up.

I have been gluten free for about 2 months. In one more month I will be having an endoscope and a colonoscopy. I had antibody testing back in February and was told I have Sjogren's. I also suffer from Raynauds and Bipolar Disease. I have been struggling with my weight for over a year (wasting). Last winter I found a nutritionist who thought I had Candida so put me on a gluten free low sugar diet. I've also been taking probiotics ever since. After many months I felt better (not healed)and slowly started adding wheat and sugar into my diet. For the most part I stayed away from it. While doing this I would wake up with wasting away from time to time and still to this day have to eat all my meals all balanced to not lose anymore weight. I am under weight by about 10 pounds but have stabilized as long as I do not skip meals. I had company in late June and consumed small amounts of gluten some unknowingly. After a few days I woke up wasted away again and this time became very ill, all my problems were magnified and chronic again. I am convinced I am suffering from Celiac Disease and will be having these procedures done to find out what damage has been done to my GI tract. My question is........when they take the test will it show the villi still atrophied? They told me it may come out negative because I am now gluten free. I do NOT want to consume gluten and suffer the consequences just for a positive test. I know my doc will say oh no your not a Celiac cause the test was negative. If she ate gluten and had problems like we do I know that would convince her. So maybe I should just stay gluten free and see if the scopes find any other problems.

[ravenwoodglass]

My question is........when they take the test will it show the villi still atrophied? They told me it may come out negative because I am now gluten free. I do NOT want to consume gluten and suffer the consequences just for a positive test. I know my doc will say oh no your not a Celiac cause the test was negative. If she ate gluten and had problems like we do I know that would convince her. So maybe I should just stay gluten free and see if the scopes find any other problems.

Yes you are more likely to have a false negative being gluten free for a couple of months. Did you have any blood tests before you went gluten free? If those were positive then your doctor may diagnose based on those and the good results from following the diet. The scope can check for other issues so it is not a bad idea to have them done but without a gluten challenge for a couple months you may very well have a negative on the celiac screening part of it. We don't really need a doctors permission to be gluten free although some people do feel they strongly need on for various reasons.