Would Appreciate Some Advice

[Alyahsdad]

Hello,

I'm 24 years old and have had just about every possible GI symptom you could think of consistently over the last 3-4 years. They have all gradually increased in severity to the point where If I eat too fast at the beginning of a meal I have to basically puke it back up because my acid reflux has gotten so bad. Constant stomach pain, Anxiety, paleness, cognitive impairment ( or this could be anxiety related), sensitivity to the sun when my whole life I have rarely ever been sunburned, I feel like I bruise a lot easier than I used to. Although my weight hasn't dropped very much I feel like I have lost weight everywhere except my belly, it really discourages me to see a picture of myself as I don't feel I look healthy/ normal. I have been into see my family practitioner multiple times for most* of these issues and have had 2 upper GI xrays come back clean. My doctor has been telling me to take prilosec or similar medications but after taking them for about a year I decided I am not settling for a band-aid for the rest of my life, the only symptoms they seemed to relieve anyway was the acid reflux.

Anyway I am just wondering where to go from here, should I just start the diet? go to the doc and request to get tested? Should I send my poo to one of these labs for testing instead? All of the above?

[Alyahsdad]

Hello,

I'm 24 years old and have had just about every possible GI symptom you could think of consistently over the last 3-4 years. They have all gradually increased in severity to the point where If I eat too fast at the beginning of a meal I have to basically puke it back up because my acid reflux has gotten so bad. Constant stomach pain, Anxiety, paleness, cognitive impairment ( or this could be anxiety related), sensitivity to the sun when my whole life I have rarely ever been sunburned, I feel like I bruise a lot easier than I used to. Although my weight hasn't dropped very much I feel like I have lost weight everywhere except my belly, it really discourages me to see a picture of myself as I don't feel I look healthy/ normal. I have been into see my family practitioner multiple times for most* of these issues and have had 2 upper GI xrays come back clean. My doctor has been telling me to take prilosec or similar medications but after taking them for about a year I decided I am not settling for a band-aid for the rest of my life, the only symptoms they seemed to relieve anyway was the acid reflux.

Anyway I am just wondering where to go from here, should I just start the diet? go to the doc and request to get tested? Should I send my poo to one of these labs for testing instead? All of the above?

I forgot to say thanks ahead of time for anybody taking the time to respond.

[Wolicki]

Well, you have a few options. First of all, the xrays will not show Celiac. If you are still on a full gluten diet, you can ask your doctor to run the full celiac panel. Keep in mind though that tests can be false negative. Another possibility is you may have gluten intolerance. It has the same symptoms of Celiac, but will never show up in a blood test.

The usual route is blood test, biopsy of the small intestine, then diet. keeping in mind that the tests are not perfect, and you do not need a "firm diagnosis from a medical professional," you could try Enterolab. It will not prove Celiac or gluten intolerance, at least from a doctor's perspective, but could give you the answers you seek.

Or you could just try the diet. If you do, give it a good strict 6 month try. It takes a while to feel better. Gluten is insidious, so you have to be very diligent. I hope that you find the answers you seek. My general advice is what do you have to lose by trying the diet? Be well.

[GFinDC]

You can do the blood tests and endoscpoy, but do keep eating gluten until all testing is completed. The tests are not super reliable anyway, and if you stop eating gluten before the tests they are even less reliable.

Enterolab can test for the gliaden antibodies and also several other antibodies, casein egss etc. They can't say you have celiac, but if you are making the antibodies, there has to be a reason for it. Some people prefer not to have the diagnosis on their medical records. Others want to be diagnosed so they have a chance to participate in clinical trials etc. So it's an individual decision to proceed with testing or just try the diet.

If you do try the diet, go with simple whole foods and eliminate dairy for a while also. No soy either. Read up on the threads here and you will find lots of pointers on getting started.

[LDJofDenver]

Here is a link to a good site that has a lot of information, including which testing to request, etc.:

Open Original Shared Link

Might also be worthwhile to see if you have a local Celiac chapter that may have some physician recommendations. I went undiagnosed for over a decade AFTER my son was diagnosed with it and I began ASKING to be tested. Instead, they were treating each and every symptom I had individually. It was ridiculous. I finally had to change doctors to get a diagnosis.

[Alyahsdad]

Thanks so much for all the advice, especially to the "stay away from dairy at beginning of the diet" guy, the last time i tried the diet I didnt see much improvement but after cutting the dairy out too I have been doing A LOT better.

[GFinDC]

Ah, very cool. Congrats on taking charge of your diet and feeling better! Yep, dairy can be a real problem. The lactase enzyme that digests milk sugar (lactose) is produced by the villi lining the small intestine. So if the villi are damaged by the antibodies (celaic reaction) then no lactase enzyme. So you end up with lactose intolerance. Lactose intolerance is basically when all that yummy milk sugar feeds a bacteria explosion in your intestine. Some people also have a casein intolerance which is one of the proteins in dairy. Lactose intolerance may go away as the intestine heals and the villi start producing lactase again. I am able to tolerate a small amount of dairy now after 2 years on the diet. The big improvement for me was first when I went gluten-free (was already dairy free), and then next when I went soy free. That soy is bad stuff.