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

How Many Suffered From The Fatigue/brain Fog, Etc. For 20 Years Or More Before Diagnosis


Chap

Recommended Posts

Chap Newbie

I was reading some stats about the average length of time that it takes for the docs to sometimes figure out the correct diagnosis for Celiac Disease. I was wondering how long it took for those who had it for 20 years or more (particularly the fatigue/brain fog) to begin to feel a bit of relief after going gluten-free? And, are there other things that can be done to assist in recovery, such as intravenous vitamin/mineral injections, antioxidants, etc.?


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



Celiac.com Sponsor (A8-M):



nederlandse Newbie

This is a really good question. I wish I had an answer but I wanted to post that I am very interested in this topic.

I was reading some stats about the average length of time that it takes for the docs to sometimes figure out the correct diagnosis for Celiac Disease. I was wondering how long it took for those who had it for 20 years or more (particularly the fatigue/brain fog) to begin to feel a bit of relief after going gluten-free? And, are there other things that can be done to assist in recovery, such as intravenous vitamin/mineral injections, antioxidants, etc.?
zip2play Apprentice

I can tell you the GI troubles for me didn't start till about 2003. But I can remember, when making sugar cookies with the kids at Christmas towards the end, feeling dizzy and light headed (whether I ate any or not). I used to always blame it on the sugar, being too near it bothered me. Well, now I know that it was, foggy feeling due to the flour I was inhaling. I mean, sugar cookies are the worst. Constantly adding more flour and such! My fatigue and dizziness, I never attributed to my GI problems, tell I discovered Celiac!

Monica

elonwy Enthusiast

I just thought I was stupid and lazy. gotta love that logic huh?

Elonwy

nederlandse Newbie

Sadly, thats how I felt too. Or, I figured I was just getting old (at 22, 23, 24) and loosing energy. I've been gluten free for a few months now but my energy is only back to normal on ocasion. Could this be due to trace ammounts of gluten? Does anyone get foggy-sleepy symptoms from cooking / eating from pans and dishes that are also regularly used for non-gluten-free meals? Until I read a post today about trace amounts, I figured I just hadn't finished healing yet (which is probably also true).

Thoughts?

I just thought I was stupid and lazy. gotta love that logic huh?

Elonwy

fritzicurls Rookie

I started having seizures 17 years ago. Then came the fatigue. I finally figured out celiac disease 10 months ago. By the time I went gluten free I had the following symptoms: seizures, constipation, fatigue, pale, pale face, depression (terrible), horrible anxiety, bloating, yeast infection, high blood pressure, bone spurring, arthritis, uterine and ovarian cysts, and breast cysts. Four days after going gluten free the anxiety shut off like a faucet and never returned. It took about 2 months or so before the depression lifted, but it slowly did and has never returned. My blood pressure dropped 25 points top and bottom (I had done everything to bring it down - no one could figure out why I had HBP because I am thin, run, and meditate). At about three months I had clients asking me if I was tanning - nope just gluten free - because the color returned to my face. The fatigue left at 2-4 months and has not returned. The yeast infection and constipation took more than just gluten-free diet - but with the help of ThreeLac, magnesium, molybdenum, Candex, and Konsyl I have a good one every day, so to speak and the yeast infection (very restisant strain) is getting under control. As that goes away my arthritis pain is so much better!!! How did I cope? Some days not well. Running and meditation helped a great deal, though many days I felt like I was running with buckets of cement on my feet. (My dad was a great inspiration - weeks before his death due to bone cancer he was still making laps around the dining room table with his walker to exercise and keep his strength up in case they found a cure. He had a piece of paper on the table and he would hash mark his laps so he could chart his progress. If he could do that, I could keep running, no matter what.) Having a supportive spouse was helpful, as well as supportive sister who were also working out their own celiac possiblities. The medical profession was not helpful. I went EVERYWHERE in the country to really big name medical clinics trying to find a help for my seizures and NOT ONE person mentioned the connection between celiac and epilepsy. I found celiac disease in a book I was reading and could identify with every published symptom. I have not had a seizure in 13 and 1/2 months - this is not unusual for me so I still don't know if gluten-free will help with that, but I am keeping my fingers crossed. I am 54 and feel the best of my whole adult life. YAHHHHOOOOOO! So hang in there, keep putting on foot in front of the other, be fearless in talking to medical professionals, and educate yourself!!!

fritzicurls

eleep Enthusiast

Honestly, I've been kind of a career graduate student while I've been struggling with this stuff -- lucky to have found consistent sources of funding through research/teaching assistantships and the occasional student loan to get me by. A few years ago, a therapist suggested that ADD was the problem, and I did take Adderall for a while -- which helped somewhat, but I was really not comfortable with that diagnosis or the fact that there were so many things left unresolved by the drug treatment. I got really focused on making my health a secondary research project at that point. I'm finally making enormous progress at an unimagined rate -- partly because I'd procrastinated on my degree all those years by learning to cook, eat right and take better care of myself -- the celiac connection was just the final health-related thing that fell into place.

I'm grateful that I'm going to come out of this with an advanced degree and, yes, a bunch of student loan debt, but it's manageable at a decent fixed interest rate. Somehow, I've maintained credibility among my colleagues and committee members, so I'm actually in good shape to find a job. I've also got a great boyfriend whose support and company are of inestimable worth.

Whoops -- I didn't really catch your question about supplements, etc....

I found that the brain issues and fatigue improved considerably with a combination of regular exercise and diet -- I've been eating mostly simple, whole foods for about five years. I also supplement with the usual vitamins and fish oil capsules -- which I think have helped a _whole lot_. And I took up a 20 minute/day meditation practice -- which was the only thing that kept me from completely losing it during the worst episodes of fatigue and fogginess.


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



Celiac.com Sponsor (A8-M):



ianm Apprentice

36 years of brain fog and I almost didn't survive it. I barely made it through school, got put into special ed, etc. To keep it at bay I am fanatical about the diet and exercise a lot and get plenty of rest. Any gluten free vitamin seems to work for me. I also take New Vision liquid minerals, about an ounce every three days.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,841
    • Most Online (within 30 mins)
      7,748

    Humble V
    Newest Member
    Humble V
    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

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.