Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frustrated At 5 Months...

Light

Recommended Posts

Light Rookie
Light
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mimommy Contributor
mimommy
Posted
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 Enthusiast
Gfresh404
Posted
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 Contributor
ang1e0251
Posted

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 Rookie
Light
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748
    Cici123
    Newest Member
    Cici123
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.