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. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748
    jenny44
    Newest Member
    jenny44
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.