I tested negative for celiac disease but went Gluten-free as an experiment to see if it might help my neurological symptoms. I did have considerable improvement in the first several weeks but I also made other changes around this time that may have been responsible this. After this brief period of improvement I slipped back to the status quo and even got a little worse. At 8 months I was doubtful that I had gluten intolerance and did several gluten challenges. These didn't seem to have any affect on my neurological symptoms but I did experience D in excess of what I had even before I went Gluten-free. Is it possible that my body needs to relearn how to digest gluten??
To recap--my celiac disease test results were negative... My PCP thought the Gluten-free diet might be worth trying anyway... Several weeks after going Gluten-free my worst symptom (confusion) improved by maybe 50-75%. The improvement was palpable and I was certain I was on my way to recovery. Despite religiously adhering to the diet. for the past 6 weeks I've felt like I am almost back to square one. I do have the occasional good day, or days when the onset of the confusion is much later in the day--but I also have horrendous days in which the confusion/agitation is there almost the entire day.
1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?
2. I just saw a new neurologist and based on my symptoms she thinks that I have celiac disease even though my results were negative. I am not willing to do the biopsy... Should I ask for genetic testing?
3. Finally, I've noticed that my nasal congestion is vastly improved--maybe the best it's ever been... Could this be a result of going Gluten-free?
Thanks in advance for your encouragement and insights,
I tested negative for celiac disease several months ago. Not sure what my results were but there were two tests and one of the numbers was 5... My doctor thought I might be gluten intolerant so I've now been on a Gluten-free diet for 4+ months and have experienced some improvement. In particular, my bowels seem much better although they seemed a little better before going Gluten-free so I am not sure if I can attribute it to the diet or not. The confusion I have been experiencing is also somewhat improved but it varies a great deal from day to day. Two steps forward, one step back...
I have had two glutenings... The first time I had about a half a cookie and had a very severe episode of confusion/agitation that lasted much longer than usual. The next second time I took a vitamin that was not Gluten-free and didn't think that much about it but had some serious D (rare for me these days) after that with moderate confusion lasting longer than usual. So I am guessing that gluten may be a part of the picture but it's hard to say, as I have another condition (long story) that affects my nervous system. I've also changed a few other things that could be responsible for my improvement. Regardless I am staying on the diet for now...
A couple of questions:
1. I'd appreciate any support, encouragement, wisdom from any of you that have had significant neuro symptoms. What pattern of improvement should I expect with the neuro symptoms (if I am gluten intolerant)? My main concern is with episodes of confusion and coordination problems.
2. Does Celiac or gluten intolerance affect the muscles at all? I have a lot of problems with muscle rigidity, hyperexcitability, irritation. This has improved some.
3. This morning I was making my son a waffle and it fell apart and I had waffle crumbs on my hands. Later I experienced confusion earlier in the day than I usually do and again some D, which I don't really have that much these days. Is it possible that simply touching the waffle crumbs did this or this simply a coincidence?