Non-celiac Newbie: What In The World Do I Do Next?

[ChickensDon'tClap]

Hi everyone! I am new here. I do not have celiac disease, but I have been gluten free since October. I had a blood test done to see if I had celiac disease, and it came back negative. My gastro told me just to not eat gluten anymore if it was bothering me. He made it sound simple, and I hope he was right!

I have been feeling pretty good up until recently. The nausea, diarrhea, and eye twitching have started to come back. I also have eczema patches on my inner elbows and neck, and my acid reflux has started to bother me recently as well.

I have been lactose intolerant since 2001, but Lac-Taid has always helped me eat dairy products. I'm trying to figure out if I need to eliminate dairy altogether or if it could be something else that is bothering me. I had eaten a lot of red meat recently and decided to stop eating that because I thought it could be what was causing my problem. I eat eggs pretty often, so I guess they could be the culprit as well. I've also started researching candida and figured that could be part of the problem.

What I'd like to do is get some kind of "test" done that could tell me what is causing me to feel so crappy. I'm just not sure what route I should take. Should I go back to my gastro and have him test me or should I go see an allergist? I get the feeling that my gastro isn't all that knowledgable about food allergies and intolerances. Or should I find a gastro who is very familiar with these issues. I'm sure there are a few in the northern VA area. I see that people do the tests themselves using EnteroLabs so I guess this is an option too. I just have no idea where I should be headed! Any advice would be welcome!

Thanks in advance!

[Jenny (AZ via TX)]

Since you say you do not have celiac, did you have the bloodwork done? Sometimes you can get a false negative. If your villi are damaged, the lactaid may not be enough to help you. Casein may be the problem. You may want to try giving up dairy and see what happens.

Also, once people go gluten free, sometimes other sensitivities show up. Many people seem to have problems with corn, soy and dairy. Maybe try an elimination diet.

Also, especially in the beginning, many of us continued to eat gluten unknowingly. For me it was in some of my supplements and a deli-roasted chicken I thought was gluten-free. Also, you may still be getting gluten through cross contamination. Are you still using the same toaster?

I'm sure someone, maybe a moderator, can add to this.

[Amber M]

Hi everyone! I am new here. I do not have celiac disease, but I have been gluten free since October. I had a blood test done to see if I had celiac disease, and it came back negative. My gastro told me just to not eat gluten anymore if it was bothering me. He made it sound simple, and I hope he was right!

I have been feeling pretty good up until recently. The nausea, diarrhea, and eye twitching have started to come back. I also have eczema patches on my inner elbows and neck, and my acid reflux has started to bother me recently as well.

I have been lactose intolerant since 2001, but Lac-Taid has always helped me eat dairy products. I'm trying to figure out if I need to eliminate dairy altogether or if it could be something else that is bothering me. I had eaten a lot of red meat recently and decided to stop eating that because I thought it could be what was causing my problem. I eat eggs pretty often, so I guess they could be the culprit as well. I've also started researching candida and figured that could be part of the problem.

What I'd like to do is get some kind of "test" done that could tell me what is causing me to feel so crappy. I'm just not sure what route I should take. Should I go back to my gastro and have him test me or should I go see an allergist? I get the feeling that my gastro isn't all that knowledgable about food allergies and intolerances. Or should I find a gastro who is very familiar with these issues. I'm sure there are a few in the northern VA area. I see that people do the tests themselves using EnteroLabs so I guess this is an option too. I just have no idea where I should be headed! Any advice would be welcome!

Thanks in advance!

Welcome, I started out the same way. Blood test negative, etc. I went to an allergist and did the elimination diet. I had already been allergic to soy for years and since gluten free, I can't eat any grains other than rice. After reading "The Gluten Connection", I understand so much more. I do not have full blown celiac, but severe gluten sensitivity. I opted for the gene test through Entrolab because I am the type that needed to know. I have the gluten sensitive genes that cause gluten ataxia, neuropathy and lower colon problems, which then explained ALL of my health problems for many years.

My suggestion is to read, read, read, and see an allergist and a doctor that understands the full scope of gluten sensitivity, not just celiac. It is just as serious as it still causes an anti-body reaction that attacks many organs as well as the brain. I learned a lot on this forum. Sift around and read it all! Good luck. I'm still on the hunt for an educated MD, but my allergist seemed to know the most in my area. (Maine)

[ChickensDon'tClap]

Thanks, guys, for your replies! Trying to figure everything out has been really tough.

Jenny, yes, I had the test done, but I was not smart enough at the time to ask what this "test" was called or for a copy of my results. Now I know better so I am going to call my doctor in the morning and ask for this info.

Cross-contamination could definitely still be a factor. I hadn't thought about replacing my toaster, but that really makes sense! Will head to Bed Bath and Beyond this weekend!

I have been hoping like crazy that I do not have a casein issue, because I am a cheese freak, but I guess I have to prepare for the worst. I will set up an appointment with my allergist tomorrow to get started on some testing. I am so sick of feeling like crap!

Thanks again for the advice! There is so much to learn that I feel like taking the day off from work and just reading, but I guess that wouldn't be possible.

[Amber M]

Thanks, guys, for your replies! Trying to figure everything out has been really tough.

Jenny, yes, I had the test done, but I was not smart enough at the time to ask what this "test" was called or for a copy of my results. Now I know better so I am going to call my doctor in the morning and ask for this info.

Cross-contamination could definitely still be a factor. I hadn't thought about replacing my toaster, but that really makes sense! Will head to Bed Bath and Beyond this weekend!

I have been hoping like crazy that I do not have a casein issue, because I am a cheese freak, but I guess I have to prepare for the worst. I will set up an appointment with my allergist tomorrow to get started on some testing. I am so sick of feeling like crap!

Thanks again for the advice! There is so much to learn that I feel like taking the day off from work and just reading, but I guess that wouldn't be possible.

One thing I want to metion about the food allergy tests is a lot of the time they come out negative even though you know a certain food bothers you. My allergist said that food allergies are the most difficult to deal with and the tests are not totally reliable. For instance, if I eat a lot of soy or beans I go into shock and stop breathing. I have had emergency room visits more than a few times for this and almost died!!!! My test came back negative!!! I know for sure that it is beans that do this and an overabundance of soy! This is why my allergist does the elimination and re-introduction diet. It is a pain, but your body will tell you a lot quicker than a blood test. I do not know why, but be aware of this when you get tested. The diet is the sure way. Good luck. We are here for you, but can not replace good research.