undiagnosed celiac, what should I do next?

[Mary Ellen Sellers]

I am 17 and for my whole life I have had all sorts of health problems and always felt different. I have always had stomach issues from the time I was really young, like severe, chronic constipation, bloating,constant stomachaches after eating, and horrible bouts of cramps that come in waves and last for hours(almost level 10 pain:( The doctors always told my mom that I would grow out of it and put me on miralax for years, which didn't really help. I also am very thin and have a lot of other issues, like dizziness, headaches, really bad brain fog (ADHD diagnosed), anxiety, depression, and awful mood swings(get very irritable and cry for no reason). This past year everything was getting worse and I was at my breaking point so I decided to do whatever I could to find out what was wrong with me and make my life better. I went to a handful of doctors, who were all VERY RUDE and dismissive. The first doctor who was a pediatrician literally went through the list of symptoms and explained how to fix them without running tests or even listening to me and that I was suffering a great deal. another who was a pediatric GI dismissed everything and gave the notion that it was all in my head. At that point I had done a little research about celiac, but I still didn't know much about it yet. After listening to everything all she ordered was an ultrasound(which I know now doesn't even take pictures of your intestines......hmmm that test would make a lot of sense right? I don't think so)We asked her about celiac and she looked at me like I was insane but eventually ordered a blood test(not sure which one) and that came back negative. I was super frustrated and disappointed that the doctors didn't seem like they wanted to help. I started to believe I was a failure. Then I did more research about celiac and read other peoples' stories. I had all the same problems, same experiences, etc. I found so many articles, quotes, blog posts, that suddenly made my life make sense! I also found that false negatives on the blood tests were very common, and igA deficiency can happen too, So I wanted to get the biopsy. I couldn't really find a doctor who would either do one in less than a year or even do one at all. At this point the mood swings and brain fog were getting so bad that I decided I would go gluten free and see what happened. It saved my life!!! within 2 weeks I had more energy, the mood problems were gone, I could concentrate, stomach wasn't hurting anymore, etc. Its been a few weeks like this now. I got "glutened" a few weeks ago from starbucks(of all places lol) and didn't know it until I was up all night in the bathroom with crippling stomach cramps and D, followed by the brain stuff that got better in a few days. Should I really get the biopsy and do a gluten challenge? I want a diagnosis but I am questioning if it is even worth it. I know about Enterolab...is that accurate? I am very confused and feel alone in this.

[cyclinglady]

14 hours ago, Mary Ellen Sellers said:

I am 17 and for my whole life I have had all sorts of health problems and always felt different. I have always had stomach issues from the time I was really young, like severe, chronic constipation, bloating,constant stomachaches after eating, and horrible bouts of cramps that come in waves and last for hours(almost level 10 pain:( The doctors always told my mom that I would grow out of it and put me on miralax for years, which didn't really help. I also am very thin and have a lot of other issues, like dizziness, headaches, really bad brain fog (ADHD diagnosed), anxiety, depression, and awful mood swings(get very irritable and cry for no reason). This past year everything was getting worse and I was at my breaking point so I decided to do whatever I could to find out what was wrong with me and make my life better. I went to a handful of doctors, who were all VERY RUDE and dismissive. The first doctor who was a pediatrician literally went through the list of symptoms and explained how to fix them without running tests or even listening to me and that I was suffering a great deal. another who was a pediatric GI dismissed everything and gave the notion that it was all in my head. At that point I had done a little research about celiac, but I still didn't know much about it yet. After listening to everything all she ordered was an ultrasound(which I know now doesn't even take pictures of your intestines......hmmm that test would make a lot of sense right? I don't think so)We asked her about celiac and she looked at me like I was insane but eventually ordered a blood test(not sure which one) and that came back negative. I was super frustrated and disappointed that the doctors didn't seem like they wanted to help. I started to believe I was a failure. Then I did more research about celiac and read other peoples' stories. I had all the same problems, same experiences, etc. I found so many articles, quotes, blog posts, that suddenly made my life make sense! I also found that false negatives on the blood tests were very common, and igA deficiency can happen too, So I wanted to get the biopsy. I couldn't really find a doctor who would either do one in less than a year or even do one at all. At this point the mood swings and brain fog were getting so bad that I decided I would go gluten free and see what happened. It saved my life!!! within 2 weeks I had more energy, the mood problems were gone, I could concentrate, stomach wasn't hurting anymore, etc. Its been a few weeks like this now. I got "glutened" a few weeks ago from starbucks(of all places lol) and didn't know it until I was up all night in the bathroom with crippling stomach cramps and D, followed by the brain stuff that got better in a few days. Should I really get the biopsy and do a gluten challenge? I want a diagnosis but I am questioning if it is even worth it. I know about Enterolab...is that accurate? I am very confused and feel alone in this.

I am sorry that you are unwell.

Consider asking for the entire celiac panel:

TTG, EMA and DGP (IgA and IgG versions) and an Immunoglobulin A (in the case of celiac disease testing this is used as a control test to validate any IgA tests).  

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Gather and maintain all your health records for the rest of your life.  You are 17 and legally, you have access to all your records.  If you choose to go to other doctors, having these files or lab tests can be very helpful.  

You can remain gluten free and wait to do a challenge later, if you are not able to find a doctor to help you. It sounds like a gluten-free diet is helping you.   Any GP or a walk in lab can order the tests.  But I do not know your family, financial or health insurance situation.  

I hope this helps you.