Frustrated At 5 Months...

[Light]

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,

Mike

[mimommy]

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,

Mike

Hi there. Your post is interesting to me for a variety of reasons. Alhough I may not be able to offer the insight that other more experienced members will, I know that there are many here who can help. For myself, I will be watching this post eagerly for my own reasons. I have found in my own research that neurologic symptoms can be related to celiac and gluten, including those in MS. Yes, the biopsy is scary, as it invoves general anesthesia, but be aware that your insurance probably won't cover genetic testing.

Speaking to your question regarding nasal congestion, I realised when I read this that my daughter has seen vast improvement with the same type of symptoms since going gluten free--I hadn't paid attention to it until you pointed it out. She had a constant "stuffy nose" from toddlerhood through age 8. I have been so intently focused on the other issues, I failed to see that she does not constantly sniffle any more. Thank you for posting.

[Gfresh404]

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,

Mike

1. Everyone is different and takes different amounts of time to heal. But if you saw an initial improvement that quickly, I'd say gluten in sneaking in somewhere. I would double check everything and even make sure the stuff you are eating is not made on shared lines of wheat/gluten ingredients. If you are unsure or it does not say, call the manufacturer to find or and don't even risk it.

2. I would, that way you have a better way of knowing whether it's even possible you have celiac. As for the biopsy, I had one and did not tell me anything and since you are already gluten free there really would be no point anyway. The positive diet response is the best indicator imo.

3. Absolutely, the symptoms of celiac are side vastly and widely ranging it's amazing. I belief that is mainly because if you are consuming gluten, your immune system is putting out antibodies to deal with what it thinks are intruders. Thus, your immune system is weakened any unable to focus on other tasks, ie sinuses.

[ang1e0251]

1. Should I be doing better at five months? Is it normal to have setbacks spanning weeks this far out?

People have reported setbacks like yours. I would say it's pretty common from what I have read. It usually turns out to be "sneaky" gluten, other sensitivities or an illness like flu.

Sneaky gluten is gluten that's sneaking into your diet from an unexpected source. Maybe from a supplement, pet food, cc or exposure to construction. There are many possibilities.

Other sensitivites could be for example dairy which many folks have. You can cut the dairy from your diet for a few days and probably tell if this is the culprit.

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?

My nasal congestion has greatly improved since going gluten-free. I very rarely now take meds for it. Before I medicated 24-7.

It's surprising the symptoms that can be linked to celiac disease. Give it more time and you will be feeling better than ever. If you think your problem is sneaky gluten and you can't pinpoint it, give us an idea of your diet and someone should have some ideas for you.

[Light]

Thanks everyone for your thoughtful replies. The only thing new I've added to my diet recently has been homemade lentil soup. Seems pretty safe to me but I'll be calling the company to see what they have to say...

I have an email in to my doctor about the genetic testing for celiac and doing more general tests to look for other causes of my confusion.

I have to say it again. My sinuses are phenomenal. It's hard to believe. I've had allergies my whole life and I don't know that my nose has ever been this clear.

Thanks again for your insight form the trenches...

-Mike