I have had problems with my digestion since I was a kid. Now (at 26) it has definitely gotten worse. Since July of this year my stomach has been making extremely loud noises (grumbling, popping, I can hear and feel the bowel traveling through my intestines). The noises are so loud that I have left classes early and even missed classes due to this. I have been having alterations between constipation and diarrhea. One day I can go, the next I can't. Stomach cramping, gas and bloating have accompanied these symptoms as well as sudden weight gain. The weight gain really perplexed me because I had just begun a workout regimen and my eating habits had not changed one bit. I went to the doc and I had every test done. Cat scan, blood work to check for Celiac Disease, X-Rays, etc. I have taken Miralax, Dulcolax, fiber supplements, you name it. Nothing has helped and all of the tests came back saying that I am fine except for backed up stool which has now diminished. My alkaline phosphate level has been elevated for a year. The blood work also showed that my vitamin d level is 13 when it should be between 33 and 100 and my thyroid is slightly elevated. I also get frequent headaches and I have been feeling extremely fatigued. My doctors are stumped I believe, and they seem to be downplaying my symptoms, meanwhile I am suffering over here and missing too many classes! This weekend something clicked in my head and I thought about the pattern of my eating habits and how they trigger my symptoms. Gluten came to mind. Firstly, I am vegan so I do not consume dairy or meat products. I do eat a lot of meat substitutes, most of which contain gluten. So I eliminated all of the gluten from my diet for 3 days and my stomach did not make one sound over the course of those 3 days. From there I decided to do some research and I found a lot of info on how gluten intolerance can present a lot of the symptoms that I have. I went to my doc and she completely dismissed the idea that I may be gluten intolerant. But I swear, when I eliminated the gluten my stomach completely calmed down. She said that since I had the test for Celiac it's unlikely that I have gluten intolerance since they are the same thing. I actually thought that they were different...Now I am kind of confused. I am so frustrated because I felt like I had a breakthrough since it seemed that gluten was the culprit to my stomach woes. I still do believe that there is some kind of link there. Would anyone know if a person can be gluten intolerant without having Celiac Disease? Could it be that I have IBS and the gluten is triggering it? And what about my vitamin d deficiency, thyroid and alk phos? Can't gluten intolerance cause deficiencies in nutrition? And I've read that gluten intolerance also causes irritability and anxiety, both of which I have been struggling (anxiety is a big problem) with as I have not even been able to keep my thoughts straight (forgetting things, memory problems, doing horribly on tests even though I know the material.) I am wondering why my doctor said that gluten intolerance and celiac disease are the same thing? I thought Celiac caused damage to your stomach while gluten intolerance did not. I would appreciate any insight on this. I am at my wits' end. Thanks!
The blood tests for the diagnosis of gluten issues are not always the best indicator of whether or not intolerance is present. And even more surprsing to some is that the 'gold standard', the scope, isn't always the best indicator of problems. It will often come up negative even when problems are present - they just haven't become evident enough to show up in the biopsy.
The best way is typically to take gluten out of your diet and see what happens over several months period of time.
In the meantime, consider using a stool test such as the one put out by Enterolab. It has picked up countless cases of IgA-related gluten issues when other testing has failed. (My husband was one such case.) Also consider doing the gene (allele) test which will tell you if you carry the genes - major or minor - and that will give you a 'bigger back-up factor' as to whether or not you have gluten issues.
In addition, make sure you have your total levels of IgA checked. If they are on the low end of the scale and your test for gluten issues (blood test) consisted of an IgA/IgG blood test, you may not have been able to generate a response to the gluten entering your system. That would produce a negative reaction on the blood test - a false negative.
You are right that gluten intolerance and celiac are not the same thing. Some people that have IBS feel poorly when they eat gluten, even if they do not have celiac. I think you are doing the right thing by cutting out gluten if it makes you feel better! Not sure what to think about your labs...
What do the home format tests measure - I was considering this http://www.checkmybody.co.uk/gluten-intelolerance-test.html are there better ones. Also do you have to go to the doctors for the gene test? Thanks Manish
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