Frustrated, what do I do next

[dollface123]

I'm feeling frustrated with the doctors in my area and not sure what to do next. My symptoms include constipation, occasional diarrhea, constant abdominal pain, bloating, severe fatigue (though improving a bit due to lifestyle change providing stress relief), joint pain that fluctuates from mild to severe, muscle aches, tingling/numbess in my fingers, a mild, itchy rash that crops up occasionally primarily on my chest and stomach, depression, anxiety, low vitamin D at 22.0 ng/mL and low vitamin B12 at 328 pg/mL.

In the fall 2015 a physician ordered a Celiac Panel. The results are as follows:

Endomysial Antibody IgA: Negative

t-Transglutaminase (tTG) IgA: <2 which falls in negative range of 0-3

Immunoglobulin A, Qn, Serum: 83 which is under normal range of 91-414 mg/dL

t-Transglutaminase (tTG) IgG: 2 which falls in negative range of 0-5

This physician told me that I was negative for celiac. When she couldn't figure out what was wrong with me, she told me that the reason my joints hurt was because I was getting old. I was 30. I switched physicians. When I asked for my medical records, I noticed that my IgA levels were low and asked my next physician what that meant. He didn't know. To his credit, he did take the time to look it up after my appointment. During my appointment (spring 2016), we decided that gluten may very well be an issue for me and he recommended I eliminate it from my diet. I also began vit D  oral supplementation and receive B 12 injections once a month.After reviewing my low IgA and figuring out what that meant, he still recommended a gluten free diet. After a month gluten free, while still sick, I felt so much better!

Even though I felt better gluten free, I found it difficult to stick to. I managed by being gluten free at home and indulging occasionally when out or at family functions, etc. While I would experience mild symptoms, it was never bad enough to dissuade me, until last Thanksgiving 2016. I ate gluten for three days in a row and couldn't believe how sick I was. Nausea, diarrhea, abdominal pain, I couldn't eat anything but clear fluids for a couple of days. The strong reaction made me decide that I need to sort out the whole celiac issue once and for all so I reintroduced daily gluten a couple weeks later. I am still currently eating gluten. I felt really sick for the first few weeks, but it leveled out and I guess I got used to feeling lousy again. Interestingly, some of my old symptoms which had improved so slowly I didn't notice they were resolved came back after I started eating gluten every day, namely my abdominal pain, constipation, and numbness in my fingers. I also had a mild, itchy rash show up a week or so in. While my fatigue, muscle aches and joint pain never completely resolved, they are worse since I began eating gluten again.

After a month of eating gluten, I had an appointment with my physician. I had planned on asking him to run more IgG testing. He seemed reluctant to do any more testing and instead wanted to know why I wanted it. I explained I was concerned I shouldn't be having even small indulgences in gluten if I had celiac, and that my children also show signs of gluten issues. Considering the genetic component to celiac, I felt I should know definitively. He seemed much to relaxed about the whole situation and told me that even if I had celiac, eating gluten occasionally wasn't a problem and that I wouldn't be at risk for any secondary health concerns associated with celiac as long as I was compliant with a gluten free diet most of the time. He said that if I wanted to be tested again, he would order it, but that based on my symptoms, the IgA test was more appropriate for me  and that the IgG was so unreliable that I might as well not have that done. I reminded him about my low total IgA, but he insisted that if he referred me to a gastroenterologist for an endoscopy, they would insist on a new IgA test first so I might as well have him order that. I relented, know full well it would be negative. He ordered a new IgA test, but didn't order a total IgA serum level.

So I went to see a nurse practitioner at the gastroenterology clinic. She suggested genetic testing as the next step. I came back positive for DQ8 heterozygous. When I tried to talk to her about what the next step was since I had tested positive, she said that after consulting with the physician, because DQ8 is not a high risk gene, that I probably didn't have celiac, but had a gluten sensitivity and to stop eating gluten. No additional testing was needed. I asked her what they would have suggested if I'd tested positive for a higher risk gene. She said they would diagnose me with celiac and to stop eating gluten, no additional testing needed. After some pressure, she said that if I really wanted an endoscopy she would order one for me. I'm not feeling very confident in their ability to properly biopsy and interpret results at this point.

So this is where I stand today. I'm still eating gluten because I want a more definitive answer. I'm looking into seeing a gastro in another city, but I'm feeling like the physicians in my area are grossly uneducated in celiac. I found a physican 2 hours away in a bigger city and affiliated with a university hospital who seems promising, but my insurance won't cover so I would have to pay cash for everything, including labs. There is a clinic an hour away that might be working looking into that my insurance will cover, I'm just so frustrated with doctors at this point I'm not sure it's worth continuing.

What do I do. Do I keep persuing a diagnosis with a different gastro clinic or look at my negative IgG test from a year and a half ago as my answer and let the rest go?

Thanks for any advice you can offer!

[Jmg]

Hi and welcome!

You've found a great site, there's lot's of support and info available here.

 

5 hours ago, dollface123 said:

What do I do. Do I keep persuing a diagnosis with a different gastro clinic or look at my negative IgG test from a year and a half ago as my answer and let the rest go?

What do you do? It's ultimately a personal decision. Looking from the outside you have the evidence of your own reaction to the gluten free diet,

5 hours ago, dollface123 said:

After a month gluten free, while still sick, I felt so much better!

you know it's a problem for you. The only things you don't know are where you fit into the spectrum of people that have that problem. Some people will fit the classic celiac model, some will test on one or the other marker, some will 'fail' the tests but 'pass' the biopsy. Some fail those but are diagnosed byOpen Original Shared Link biopsy. Some, like myself, test negative on both but still react to gluten and are, for want of a better diagnosis,Open Original Shared Link

All of these people have one thing in common. There's no treatment other than gluten-free diet. If you get the celiac diagnosis you may get some monitoring and help with vitamin supplementation, but it's not guaranteed. You will probably get better understanding and acceptance from those around you, but that's not guaranteed either as the experiences of many on here can attest to.

Perhaps the best that you may get from a positive diagnosis is the reassurance for yourself, that you have an external confirmation to help you stay disciplined and focussed on the diet. I'll let others answer that as I don't have it!  

I initially found out that gluten was a problem independent of the medical establishment and then I went through gluten testing and endoscopy. I tested negative for celiac but based on my reactions the consultant recommended I forgo gluten for life.  In some strange ways I was disappointed with the negative diagnosis, but by then I had ample first hand evidence to support my decision to live gluten free so it didn't really matter. To all intents and purposes I live as as if the diagnosis had been positive. No exceptions. No 'just this once' moments. No 'special occasion' exemptions. 

Obviously the decision as to how far to go with testing is a personal one. I think you have the information you need and continuing to throw time, money and periods of ill health at the problem are unlikely to justify the risk / reward, but that's something you need to weigh up for yourself.  

I suspect you will wind up having to exclude gluten simply based on your own reactions and here then:

5 hours ago, dollface123 said:

Even though I felt better gluten free, I found it difficult to stick to.

is the crux of it.

If you're going to stay well you have to change the way you look at gluten. It's not something that 'disagrees with you' or which 'irritates your stomach' if you have too much, it's something which triggers an auto immune reaction that affects multiple systems within your body. It's not like being intolerant of spicy food, it's impacting you in multiple ways over a long period of time. For other people it's just one more thing they can choose to eat, for you it's poison and permanently and completely off the menu. 

If you can make this decision internally and then stay consistent to it, those closest to you will also come to understand this is not a fad decision, but a lifelong committment. Even if they disagree, they will have to come to terms with it for your sake. 

It may sound difficult, but keep a food diary and track your improvements as you begin and stick to the diet. Over time your own improving health will be all the incentive you need. 

Best of luck whatever you decide! 

 

Matt